There’s a brand new book out called Allergic: Our Irritated Bodies in a Changing World by Theresa MacPhail. Theresa is a medical anthropologist – who knew there was such a thing ?! – and has done an admirable job covering topics from the medical discovery of allergies, diagnoses, where allergies might source from, treatments, research and more. I’ve just finished reading the book, and I’ve enjoyed reading it, and thought that my AllergicChild readers might benefit from what I found helpful in the book.
I’ve been in the Allergy World all my adult life, and have had years of experience with my own allergies and those of each of my children. Yet, I still learned more about the immune system and how it operates by reading this book. I also learned more about Dupixent and how it came into being. That was a fascinating part of the book to me. I’ve been wondering if it would be a good drug for me to try to combat my Eosinophilic Esophagitis (EoE) diagnosis. This book gave me more details than I’ve been able to find elsewhere. And my conclusion is that the price of the drug is still prohibitive for me!
Ms. MacPhail has interviewed literally dozens of the most esteemed allergists, scientists and researchers for the various topics she covers in this book. If you’ve been part of the Allergy World, you will likely recognize almost all of these individuals. It felt comforting to me that she went to the experts who shared their experience and specific research.
And beyond just the experts, she also interviews parents and advocates who have created groups and non-profits that help individuals in the Allergy World. I liked reading about these individuals, especially since I know them and have met them at food allergy conferences through the years. I respect them tremendously, and reading about them in the book only made me have even more appreciation for them and everything they have done for our community.
If you’re looking to learn more about food allergies, pollen allergies, your immune system and treatments that are on the horizon, I’d definitely suggest you read this book!
(PS – I’m not receiving any remuneration to provide you this review, nor do I know the author. But I would love to have more conversations with her if I ever did get to speak with her!)
I have been writing a series of posts about my grown daughter, Michaela, and her path back to health from COVID and then from Long COVID, which started with the first blog post here. It has now been 20 months since the initial acute COVID infection, and the last 6 months have been better than any Michaela has had since being diagnosed with COVID.
Since my last blog post on the topic in the beginning of January 2023, Michaela has tried only one new modality, Neurofeedback. Sadly, it turned out to be too much for her body and nervous system. While my experience with Neurotherapy was wonderful (which I wrote about here), we learned from the results of Michaela’s QEEG (Quantitative Electroencephalography) that she had experienced some type of brain injury in her early childhood. This injury could have occurred at birth, when the doctor used a “suction method” to guide her through the birth canal, or one of the several times that she fell down the stairs of a 100 year old home in which we lived when she was a toddler.
The QEEG isn’t capable of providing the date of the injury, but the results of the test were consistent with someone who had experienced a traumatic brain injury many decades previously. The reason why that was important to know is that Michaela’s brain isn’t communicating optimally from one side to the other, which creates energy discrepancies, and makes Neurotherapy more challenging, requiring the sessions to go much more slowly.
The previous brain injury was also likely to blame for her grand mal seizures after she experienced severe dehydration back in 2017, which I wrote about here. So the culmination of a childhood brain injury, plus two grand mal seizures created a weak link for COVID to attack. (I wrote about COVID and a body’s weak spot here.)
For Michaela, that weak spot was her brain, and her brain fog and vision issues were the symptoms from COVID inflammation in her brain. We were hopeful that Neurofeedback would be able to quell that inflammation and to help her heal. Instead, it activated her nervous system to the point that she couldn’t tolerate doing the therapy. She wasn’t able to sleep for a week, and even deep breathing put her body into a fight/flight feeling that was untenable. She stopped the Neurofeedback, for now, and decided to continue to practice Zhineng Qigong as her sole means of getting better from Long COVID.
She has been able to practice various routines up to 5 hours a day, and has continued to see improvement. She’s able to ride in a car now without vision issues and nausea. She’s also able to work about 5 hours a day on the computer, which is a very big deal from where she began. She no longer has the feeling of burning organs, and her hives have lessened dramatically. She has more energy than she has had for the last year, and is able to follow conversations and engage in them! In other words, big improvements.
Michaela was interviewed by the Denver Post about her Long COVID experience. The article can be accessed here. (If you hit a pay wall, you can load the Denver Post app and access the free article through that.)
We continue to hope for an article that can provide more treatments for patients than just a litany of research, but Michaela wanted to share what works for her to help others.
I recently completed a series of Neurotherapy sessions at a local clinic called Neurotherapy of Colorado Springs. I was thrilled with the results that I experienced while still being in therapy, and I continue to see more positives now that I’m a graduate! I wanted to share with my readers how valuable Neurofeedback can be.
First, I’d like to share why I chose to pursue Neurotherapy. During my long progression of healing from Mast Cell Activation Syndrome (MCAS), I began to read about how our thoughts affect our body. I’ve written about New Thought elsewhere on my website here. I began reading books by Dr. Joe Dispenza and Ernest Holmes, and learned how powerful my mind really is, especially when it comes to illness. The education was very helpful, but reading about something and actually doing it to effect change are two different things.
I attended two of Dr. Joe Dispenza’s in person courses about 10 years ago along with participating in his monthly telephone presentations, which was a different progression of courses than what he currently has. Nevertheless, I was able to learn meditation techniques and was disciplined to meditate every day in addition to “blessing the energy centers” of my body for a couple of years. While I learned a lot of new lingo, for myself I never could see much progression in the healing of symptoms I was experiencing. I know some people really relate to Dr. Joe’s techniques, but for me I didn’t get results, and in fact some of the breathing techniques he suggested made my symptoms worse!
I looked into Dynamic Neural Retraining and the Gupta Program, both of which help to retrain the brain, and was concerned about my ability, once again, to get any results when I was basically left on my own to practice these programs. Some people are able to follow directions, and feel the energy, and make progress. For me, I’m not blessed with that. I need hand holding and someone to provide feedback to me to ensure I’m not off doing my own thing and wondering why I’m not getting any results.
I had begun to read about the relationship that mast cells have with the nervous system, and I knew from my experience with Rapid Resolution Therapy (RRT) that having my nervous system calm down around traumatic events was very helpful. However, my nervous system felt like it was at the level of fight or flight constantly, even when there wasn’t any trauma or upset occurring. That’s what landed me doing a Google search for Biofeedback and Neurofeedback.
I found that there are A LOT of practices that call what they are doing Neurofeedback. They wanted to rent me a machine to take home and plug myself in. Once again, I didn’t trust that I could do that correctly. And I really wanted to do Biofeedback AND Neurofeedback since I knew that I had a lot of body symptoms occurring from MCAS like itchy skin, stomach aches, occasional hives, general inflammation and hot flashes.
Other practices promised amazing results for anxiety in 6 sessions, yet performed the same services on every patient. This didn’t feel like the right route for me, especially knowing how sensitive my body is. I wanted something that was geared toward me, and I was willing to put in the time and effort to make it work.
It took a while of being on a wait list until I could get into Neurotherapy of Colorado Springs. My insurance didn’t cover the sessions, and I’m not sure if any does, but their practice is booming! They see people with brain injuries, children and adults with ADHD, older people with memory challenges, and many other brain related issues including anxiety. The best part was that when I mentioned that I wanted to calm down my mast cells and that I had a diagnosis of MCAS, the Director knew exactly what I was referencing. I can tell you that rarely occurs. Too many times, I’ve had to explain to doctors what MCAS is, and I was thrilled I didn’t have to do that this time.
I first completed a qEEG (Quantitative Electroencephalogram) which measures electrical activity in brain waves. I wouldn’t be able to read the results of this, but a Neurotherapist at the practice was able to look at my brain waves and tell me almost EXACTLY what my symptoms likely were (even emotional responses to stress and anxiety), where they sourced from, and what they would be able to do to create new neural pathways. I was quite impressed, especially since I hadn’t given any background information at that point. He was able to see all of this based upon my brain waves being too active or not active enough in certain areas of my brain.
The qEEG is such an important gathering of data, and many Neurofeedback practices that I had interviewed didn’t use this tool, mainly because it is an expensive test. I’ve had friends who have gone to those practices and ended up experiencing increased anxiety rather than diminishing anxiety with sessions of Neurofeedback. That’s the last thing I wanted to have occur.
I attended two one-hour sessions per week for a total of 50 sessions. Within the first two weeks, I was able to sleep more soundly. More than just the changes that I noticed, my husband noticed how much calmer I was. I was able to stick with difficult conversations without “freezing” or needing to take a break. In general, I was functioning much better with much less anxiety.
As I wrote in a previous blog post, I got COVID in the middle of Neurotherapy and was shocked at how much my brain turned to mush when I returned to continue with sessions. I was able to get brain function back quickly however, and graduated with what feels like a different brain!
Anxiety previously would awaken me in the middle of the night, and I’d have difficulty getting back to sleep. I now have a breathing practice which I can get centered into and fall back to sleep easily.
I’m able to continue to practice HeartMath which I wrote about previously here, which helps to keep my parasympathetic nervous system helping my body to rest and digest.
My skin is no longer a dot-to-dot rash of itchy bumps. And best of all, I no longer have symptoms of IBS (Irritable Bowel Syndrome)! I feel sure the IBS was related to all of the anxiety I was experiencing with MCAS.
I’ve tried adding new foods to my diet and no longer have the immediate MCAS response of flushing and anxiety. The interesting thing is that I do still have EoE (Eosinophilic Esophagitis) and that disease mechanism does not seem as responsive to the Neurotherapy. I’m in hot pursuit of a modality to cure it now.
In the meantime, I would encourage anyone wanting to retrain your brain to check out Neurotherapy!
The COVID pandemic has been going for three years now, and it keeps on giving – this time to my husband and me in the form of our first COVID infection. Given that we’re both in our 60’s, I’m grateful that we got a milder variant that’s now making the rounds in Colorado and beyond. I’ve recently learned some new information about COVID and its impact on the body that readers of this blog may appreciate.
I have been doing Neurotherapy for the last 7 months to help calm down my mast cells (a detailed blog post is forthcoming on this once I have completed my sessions). I had been advancing with each session and seeing some great improvements in my sleep and ability to focus when I came down with COVID.
What was explained to me was that in their Neurotherapy clinic, they have seen that COVID attacks a person’s weak spot. What I mainly felt during the acute stage of the infection was stomach discomfort (a common refrain for me with any type of illness since my mast cells congregate in my gut), and a lot of nasal mucous (and thereby a cough). I guess I’m lucky – I have two weak spots!
For some people their weak spot may be their gut, for others their lungs. And people may not even realize that the body part most affected by COVID is or was a weak spot. Suddenly, they are having issues with their sinuses, which they seemingly never had an issue with before. Or an old back injury that was healed becomes flared after having COVID.
This was fascinating to me that COVID looks for a weak spot to move into and exploit. I haven’t yet seen research on this, but we are just beginning to get an understanding of what the COVID virus does to our bodies.
The other thing I learned at Neurotherapy was how much COVID affects the brain. I had been doing 2 sessions a week of Neurotherapy for 5 months when I got sick. Each session is recorded to show on a computer screen how my brain is creating new neural pathways and decreasing inflammation. Having specific data of where my brain was functioning pre-COVID gave me a view of how much COVID affects the brain once I went back for more therapy sessions.
I didn’t really realize how much my brain had gone into a fog during the illness, and was still slogging along at about half speed once the acute illness had moved on.
I stayed away from Neurotherapy for two weeks to recover and went back to therapy with a seemingly congested brain, unbeknownst to me at the time. The amount of inflammation in my brain was visible on the computer screen from the probes placed along my occipital lobe and temporal lobe. What was easy for me to perform previously in Neurotherapy sessions was suddenly impossible! My brain was completely unable to focus on the task at hand, and I felt like I had mud in my neural pathways. It was shocking for me, and fascinating for my Neurotherapist to compare my therapy results pre-COVID to post-COVID.
It took weeks for my brain to recharge and get back to focusing and being able to hit the markers that previously I had achieved during Neurofeedback.
As of this writing, I still have the lingering cough, but my brain is back functioning and even doing better than its pre-COVID state according to my Neurotherapy results. From all of the news articles about people feeling brain fog, even labeling themselves as having “COVID brain,” it may be that all of us have a brain weak spot that COVID exploits!
My grown daughter, Michaela, has been experiencing long haul COVID after being infected with the virus in November 2021. (You can read a series of blog posts about this journey starting with the first post here.)
I have heard from many readers, which is wonderful! You have asked how Michaela is doing and have also shared that her journey with Long COVID has given you hope. She has learned more about what helps her feel better, and what is too much for her to tolerate. The items that she can tolerate continue to change as she continues to heal.
In the process of searching for healing of her symptoms, she tried many modalities, and found that Zhineng Qigong was gentle enough to not throw her nervous system into overload, and also powerful enough to really assist her healing. She continues to expand her daily 3-hour routine into new practices, slowly introducing new movements and watching how her body responds.
The Eden Energy practices that she tried didn’t provide consistent healing, and she decided to remove those from her daily protocol. The Medical Qigong was helpful to read about in books and to utilize sparingly. It was too strong for Michaela’s sensitive body systems to practice daily. She has learned a lot about Medical Qigong from a series of books about Chinese Energetic Medicine.
She had experienced more healing since my last blog post in July 2022 detailing her path to health, and we were very encouraged she was on the road to a full recovery. Sadly, everything took a turn for the worse in the fall.
In October 2022, the garbage disposal in her apartment backed up and a maintenance rep from the management company was sent to fix it. This began a series of issues of strange smells inside her apartment, the discovery of a sewer pipe that had an incorrect piece in the pipe, a water leak, and to top it all off, the entire apartment building lost heat for 1 week when the boiler went out during a hard freeze. All of these items were very stressful on her nervous system, but more than that, she began experiencing more and more brain fog, fatigue and general malaise.
So many Long COVID patients experience a recurrence of symptoms, that we chalked up her symptoms to another round of Long COVID exacerbated by the stress of trying to manage multiple maintenance people inside her apartment trying to fix problems.
Michaela looked under her kitchen sink in November and discovered mold building up on a cabinet board. She hadn’t looked under there previously, so didn’t know how long it had been present. She taped plastic around the cabinet area to attempt to keep the small area of mold that she could see from permeating her living area.
She has a diagnosed severe IgE allergy to mold, and has had reactions before ranging from repeated rounds of bronchitis (as a child, the school she attended had a water leak that ended up with a moldy classroom underneath the one she was in) to lung and breathing issues (when a previous rental she was in didn’t mitigate mold in a bathroom properly).
When the management company was ready to mitigate the mold, it was mid-December, and they sent Michaela to a hotel. Within a few hours, she realized how her lungs felt so much better. She was able to take big breaths for the first time in months. The management company was going to fix the pipe that had been improperly fixed previously and replace the cabinet that contained the mold spot, but wasn’t going to fix the floor that had rippled from the water that was caught underneath it. This meant that they weren’t even looking for mold that was possibly present in the floor boards.
After these fixes were complete, Michaela asked that an air sample be taken by a professional mold mitigation company to ensure that all the mold had been removed prior to her moving back in. The air sample came back with mold still being present, which wasn’t a surprise to any of us. By that time, she was realizing how many of her clothes and other personal effects that she had brought to the hotel were also covered in mold spores. She put on certain clothes and found that her eyes began to itch. The more information she got from the mold mitigation company, the more she realized that everything in her apartment was going to have to be mitigated to get rid of the mold, and many items like her mattress and couch would have to be tossed because there wasn’t any way to remove the mold.
The management company hired a mold mitigation company to come in to wipe down all the walls and surfaces. Sadly, the process began by spraying chemicals everywhere first! Thankfully, they continued to pay for Michaela to stay in the hotel, but it was becoming more and more clear that what they were doing was going to make her studio apartment unlivable for her sensitive body. Between the chemicals and the lack of removing the floor boards and flooring, her apartment was never going to be mold free.
In fact, we began to wonder how long mold had been present without her realizing it. The symptoms of mold exposure and those of long COVID are very similar. Brain fog and fatigue are vague symptoms that could be sourced from either or both. The key was to get her into a safe living situation to calm down her nervous system and get her back to at least where she was prior to the mold exposure!
The lease that Michaela signed when she moved into her apartment basically excludes remuneration for mold damaging items. They expect that the renter will have that in their renter insurance policy (Michaela didn’t purchase an addendum to include that, not knowing that such would be an issue, so she will receive no compensation for her personal items that have to be tossed – 50 plants, all her shoes, mattress, couch, cushions, pillows, etc). She was allowed to break her lease without a fee, which she has done.
A few days before Christmas, we moved Michaela from Denver to Colorado Springs to live with my husband and me. It’s been 3 weeks since she was in her apartment, and we can see her spirit coming back. She no longer has the fatigue and brain fog, and is looking forward to finding a new safe place to live with no mold.
Just washing her clothes ended up not being enough to remove the mold from some of the fabrics, so we will be taking all her clothes to a commercial laundry facility that uses an ozonator to remove mold. We hope to be able to preserve at least some of her clothes so that she doesn’t have to start from scratch setting up a wardrobe.
The year 2022 was an extremely difficult one for Michaela and for our family. Long COVID is like nothing I’ve ever seen, and she still has improvements to make to be able to get back to working full time, being on screens and being able to drive. The financial setback from the mold exposure was not only in losing most of her personal property, but also her inability to work. We are all looking forward to a more prosperous 2023!
It took me about 5 years to get an official diagnosis of Mast Cell Activation Syndrome (MCAS) after getting stung by a wasp and having my body then experience allergic-like symptoms, an inability to eat many foods without a reaction, ongoing stomach aches, diarrhea and acid reflux. Sadly, many people today are still having difficulties getting an MCAS diagnosis. I know this because I hear from so many of them asking for assistance.
I’ve also had the question posed to me, “What helped you feel better quickly?” Depending upon how long you have been suffering with MCAS symptoms, your body may be able to tolerate different medications that can alleviate your symptoms. However, if you’re like me and have had a long list of issues for years, feeling better can be a slog that takes years to find the right combination of medications and other modalities to begin to help you heal.
I was prescribed Zyrtec and Zantac (it was still on the market in 2006 when I began to have symptoms) initially. For about 2 weeks, these medications were wonderful. Everything calmed down and I was able to eat any food I wanted, and I then went off both meds only to have my acid reflux and gut issues come roaring back. After that, I continued to feel worse and worse with each passing year. All of the gut issues I was having didn’t immediately respond to medications. And some of the prescription meds my doctor prescribed made me feel worse rather than better. Antacids like Zantac or Pepcid gave me more symptoms than what they were helping, which was very frustrating!
After 5 years, I was prescribed Ketotifen, a compounded prescription mast cell stabilizer and immediately felt better with the first pill. This was the first and only medication that provided relief to me without a horrible array of side effects. I eventually ended up taking the maximum dose of 4 mg per day, yet I was still having numerous other gut issues that weren’t helped by the medication.
That led me to a modality called Network Spinal Analysis, (which is now called Network Care), a type of chiropractic practice that focuses on energy in the body. I have written about this here. I was able to get my stomach churning and nausea to cease after each session, which was a wonderful relief! However, this calm body wouldn’t last but about 24 hours at first. I continue to see a practitioner twice a month to keep my body tuned up, and I’ve found other modalities to help the gut problems.
A real key for me was to switch to eating organic, and I ate food that had no spices or oils on them. I didn’t realize how important this was until I could feel the difference in the lessening of acid reflux that I had been experiencing daily.
I tried Traditional Chinese Medicine, which was helpful but VERY slow in progress. For someone looking for more information, you can read about that here. Some MCAS patients are able to tolerate ingested herbs and supplements easily. I was not. That is likely why it took years to build up any type of tolerance and get to a therapeutic dose. And Chinese herbs aren’t meant to be taken forever. I was certainly helped by them, but it wasn’t a quick, easy fix.
I was then introduced to Zhineng Qigong in my pursuit to heal my body. This type of Qigong was created by Dr. Pang Ming, a medical doctor, a Chinese Medicine Doctor and a Qigong Grandmaster. In 1979 he created Zhineng Qigong to help his patients heal at a medicine-less hospital in China, and the results were amazing. Patients were being healed of cancer and gastritis along with many other issues. I have been practicing Qigong daily for 3 years now and I continue to learn more of the nuances of the breath, posture, movement and energy. I could immediately feel a release of tension in my shoulders and hips, and my immune system got a boost during every practice where I would feel like I was catching a cold before practicing, and afterward I no longer had that feeling! It also put me much more in tune with my body which I needed to continue my healing journey. There are wonderful teachers of Zhineng Qigong which you can read about here and here.
Lastly, a modality that has calmed down my nervous system is Neurofeedback. I have found that my mast cells and nervous system have a communication going between them that has continued for years, and isn’t positive! If I get stressed, my nervous system calls in more mast cells. And if there’s pollens, my mast cells activate my nervous system and suddenly I feel anxious. And many times, I wasn’t able to stop this process, which meant the source was somewhere other than my body. In fact, I learned that my brain was creating a lot of the issues I was having. I began Neurofeedback in my city of Colorado Springs at this practice. I have been thrilled with the results. Within 2 weeks, I was sleeping again! I didn’t realize how much my sleep had been compromised with all the mast cell activation that was still occurring. If I had work stress during the day, my nervous system would be so activated that I would be itching through the night and unable to get a good night’s rest. Part of my Neurofeedback session is also HeartMath which I wrote about here. Now, I have a paced breathing practice that calms my nervous system down and I’m able to stop my mast cells from activating! I wish I would have discovered Neurofeedback years ago to help my brain not get into the patterns I’ve lived with where anxiety was so heightened. However, I’m very grateful to have found it now to be able to create new neuropathways in my brain which is calming down my body.
There’s recently been recognition in the “forward thinking” Mast Cell Activation Syndrome (MCAS) doctors that mast cells have some type of communication with the nervous system. And this communication also seems to be occurring for long haul COVID patients. This communication appears to create the symptoms of anxiety, gastrointestinal issues and itchy skin, and may create other symptoms also.
As a patient with an MCAS diagnosis, and as a mother of a patient with a long haul COVID diagnosis, I can say that the nervous system is DEFINITELY affected by both of these conditions.
The autonomic nervous system is a complicated mechanism, and I’m certainly no expert. What I understand is that there is a sympathetic nervous system, which activates our bodies into fight or flight. This saved us from being eaten by a tiger many thousands of years ago, and is certainly necessary, but we don’t want it working all the time. Then there is the parasympathetic nervous system, which activates our bodies to rest and digest. We want a balance between these two systems.
My experience with MCAS is that the parasympathetic nervous system is no longer activated the way it should be, and my sympathetic nervous system is constantly overstimulated. Everything my nervous system comes in contact with is perceived to be a tiger – pollens, food, smells, etc. And my parasympathetic nervous system gets drowned out by all this overamping so that I have trouble digesting foods and getting a good night’s sleep.
In the short run, this isn’t a bad thing to have the sympathetic nervous system working hard. When we all lived with the danger of a tiger eating us, we wanted our nervous system to be highly responsive, to get us moving. Now, an argument with a family member shouldn’t stimulate the same response. Yet, when your nervous system can’t distinguish the immediate danger of a tiger from a kitten, the entire nervous system goes out of balance. And that is bad news for your body, especially when this imbalance lasts for days, months or years.
Mast cells are part of our body’s protection against viruses and bacteria, and are also stimulated during an allergic reaction to release many chemicals. From what I’ve been told, mast cells are in the layers of the gut and skin very close to the nerves, so it’s not surprising that there would be communication between mast cells and the nervous system. There’s been interesting research on the Significance of Conversation between Mast Cells and Nerves.
While there is very little research currently on long haul COVID, my daughter’s experience is that not only are her mast cells activating but she’s also having issues related to a dysregulated nervous system, such as dizziness upon standing, a fast heart rate and extreme anxiety.
So how does HeartMath figure into all of these nervous system issues? HeartMath is an app to allow you to view your inner emotional state based upon your heart rate and coherency. A Bluetooth device attaches to your earlobe to monitor your heart rate variability and guide you toward inner calm through real time feedback.
If you are a follower of Dr. Joe Dispenza, he has been touting HeartMath for the better part of the last decade as a way to create the healthy vision you want in your life.
If you’d like to see a demonstration of HeartMath and the way to breathe to get the best results, watch this. (This video also includes information about how this type of breathing is helpful for treating long haul COVID).
I have found that there are times of the day when it’s really difficult for me to sit down and focus on my breathing. If I’d had a busy day at work, the transition into a calm breathing pattern is definitely needed, but sometimes quite difficult to maintain! However, I have been continuing to practice for 10 minutes a day, twice a day. I am certainly seeing results such as better sleep, more balance of my emotions and less anxiety overall. In other words, my parasympathetic nervous system is coming into balance!
For my daughter, she found that she has had to start small to not overwhelm her nervous system. Yes, even deep breathing can upset a very anxious body! If your nervous system is really overamped, you may need to start with just putting the Bluetooth device on your ear and breathing normally for several sessions before adding the deep abdominal breathing. The feedback from the app will communicate with you by sight with various colors and waves visible, but also by auditory dings. This helps your brain to know what it needs to do to “breathe better” and to create more calm.
I want to provide my body the best chance for healing, and if I can do so without medication and get good results, that’s amazing! There are HeartMath practitioners around the country that can assist you with getting all the information you need to get started on this. Or you can just purchase the Bluetooth device, load the app and proceed forth yourself. Either way, feeling calmer and less anxious will be your reward.
PS – I am not being compensated by HeartMath for this blog post. It is solely based upon my own and my daughter’s experience.
The ongoing saga of long COVID for my daughter, Michaela, continued into April 2022. Two prior blog posts on this topic are here (first) and here (second). She tried Benadryl, Pepcid, Zyrtec and Ketotifen along with Chinese herbs and creams, and each of them created more issues for her: vertigo, shaking, nausea and temperature extremes in her body. She decided to give up even trying to incorporate them into her healing routine.
She was experiencing so many symptoms that we realized that one doctor wasn’t going to be able to diagnose everything, nor provide a solution. The thought of her having to go to a cardiologist for the heart palpitations, an endocrinologist for her menstrual cycle issues, a neurologist for the brain fog, an ENT doctor for the dizziness and vestibular system, an allergist for the hives and mast cell activation symptoms, and an ophthalmologist for her vision issues was overwhelming. She didn’t have the energy to withstand so many doctor visits, nor the brain function to be able to make the appointments and then get herself to the doctor’s office without being able to drive. Yet she needed to do something, or she was going to continue to experience an array of issues that she had never had before with Mast Cell Activation Syndrome (MCAS).
My husband and I were doing searches online to help her find long-haul COVID groups (so that she might be able to speak with someone else experiencing what she was), dysautonomia groups, and any research that might be helpful for her to heal. We found that Western medicine doctors were prescribing medications that they hoped would work, which she couldn’t tolerate taking anyway, or sending patients to physical therapy, or sending them for more testing. We didn’t find anyone who had “the answer,” despite the fact that a few snake oil salesmen/doctors were out there peddling their “research”. A word of caution about that – given that Michaela and I have managed chronic illnesses for decades, we’re very attuned to doctors who claim to have all the answers that no one else has ever found. In general, we run in the other direction!
Because of her tenacity, Michaela got on the phone with Bright Health, her health insurance provider, and asked for help after telling them what she had been through with all of her symptoms and doctor visits that hadn’t provided her any help. She thankfully got a woman who listened, and provided her with the name of a physical therapist who she heard had some success with helping people with long-COVID. Michaela immediately called this new PT.
Dr. Dan Stoot of High Definition Physical Therapy was the first doctor to understand what Michaela was going through and willing to help her with specific exercises. He was working on research about long COVID with the University of Denver, and had been working with patients for almost 2 years at that point and having success. He spoke with her over the phone and provided her with his cell number to contact him with any questions before her first appointment. This was wonderful! When she went into his clinic to be evaluated, he turned off the lights and asked her to do simple tests so as not to activate her nervous system. This allowed her body to calm down enough for him to get an accurate assessment.
He said that several of the issues that Michaela was experiencing were centered within her brain stem, and told her that her symptoms were similar to a Traumatic Brain Injury. He also told her that he had seen all the symptoms she was experiencing in his long-haul COVID patients. This helped her to realize she wasn’t alone in this mess. She shared with him about her suicidal thoughts, which he had heard about from other patients. This helped her to feel calmer, and that there was hope for some healing.
He had her begin with eye exercises since her inability to look at computer screens and to drive were the two biggest issues she wanted to handle. That one hour appointment wiped her out for the rest of the day!
Her body was in such a state of overload that she was having trouble sleeping, or even getting her body to rest, and also having issues with having enough energy to make it through an evaluation appointment.
She began to listen to the audio book for Breath by James Nestor which helped her to learn new breathing techniques to calm down her nervous system. Since she wasn’t able to be on the computer to watch any videos or do any Google searches, audio books and paper books became her sole entertainment and means to educate herself.
She began reading voraciously about Traditional Chinese Medicine, Immunology, Massage, Acupressure, Shamanic Healing work, the Autonomic Nervous System, Dysautonomia, the Vestibular System, and Qigong – especially Zhineng Qigong which came out of a Medicine-less hospital in China that combines Buddhist principles, Daoist principles, Western Science, Kung Fu and Medical Qigong.
Michaela started to slowly practice some Wisdom Healing Qigong that I had been practicing for a few years, however this practice was too fast for her and she followed this instead. Wisdom Healing is a “branch” of Qigong that is similar to Zhineng Qigong. The slower practice I linked to is Zhineng Qigong. She found that when she practiced this, her body felt better. The energy started to integrate better and she was able to breathe easier. One of the practices is called “Lift Chi Up Pour Chi Down” which is a series of movements done very slowly and looks similar to Tai Chi. There is also a Sound Healing practice that Michaela incorporated from Wisdom Healing Qigong, however she was experiencing burning in her internal organs so badly that she only listened to this practice rather than doing the sounds herself. These two practices became her main focus for healing along with the eye exercises Dr Dan Stoot had given to her.
When she went back to see Dr. Dan for her second appointment, he couldn’t believe the amount of progress she had made. He told her none of his other patients made such progress in one week and asked what she was doing. She told him about her breathing exercises, Lift Chi Up Pour Chi Down and Sound Healing practices. She still had so many symptoms and issues occurring, but to know she had made progress gave her not only a boost of hope, but also a commitment to continue with Qigong.
We knew of a few local Qigong practitioners and asked them for suggestions of Zhineng Qigong teachers. Michaela began to pursue several Qigong practitioners across the world and began having conversations with them about what she was experiencing, and asking if they knew of anyone who had healed themselves from Dysautonomia. Each person she spoke with would give her little nuggets of wisdom, but the only person she found who had healed herself was Dr. Cynthia Li who wrote Brave New Medicine. Dr Li also incorporated Wisdom Healing Qigong into her own healing journey. Michaela had read her book, and reached out only to find that Dr Li wasn’t taking any new patients. That didn’t deter her. Instead, she continued her quest to find someone who could teach her more about healing herself.
By the end of April, Michaela began practicing Qigong and Sound Healing for a total of 3 hours per day, mainly because that’s the amount of time these practitioners said they practiced in order to achieve health after a serious medical issue. She was willing to do anything to get better.
Despite doing the eye exercises that Dr Stoot gave to her, Michaela’s eyes weren’t getting better enough for her to feel comfortable driving. Dr Stoot suggested that she go to a Neuro Ophthalmologist, however once again these doctors aren’t in any insurance network, and private pay was required. Instead, she saw a “regular” ophthalmologist about her vision issues. All of his testing showed there was nothing wrong with her eyes. While you certainly don’t want to wish for an ailment, it would have been nice to have some diagnosis for specifically what was going on!
She found a practitioner for Rapid Resolution Therapy (RRT) to begin to resolve her Medical PTSD and to decrease her overall anxiety. Michaela’s issues with the medical establishment needed to be overcome in order for her to be able to have blood draws where she didn’t end up in a panic attack. This therapy did help her anxiety to calm down, and it also provided the opportunity for her to be able to notice what she was thinking when her body and nervous system began to ramp up.
Michaela was continuing to have digestion issues, blood pressure issues, an inability to control her body temperature, and urinary problems. A Google search on various types of Dysautonomia came up with a diagnosis called Autonomic Neuropathy that included these issues and more. While she didn’t have a formal diagnosis for this condition, it was helpful to have a name to call the constellation of symptoms that she was experiencing. We noticed that many of her symptoms she was experiencing came back to the Autonomic Nervous System, and it was evident that her nervous system was not responding appropriately.
She has begun to see a Medical Qigong Doctor candidate in Denver, Dina Rifkin, who even comes to her apartment! Dina began to teach her specific moves to help a specific organ. This type of Qigong is different from what Michaela was practicing, in that Medical Qigong can work with healing specific medical issues. Dina has healed herself from several chronic illnesses, which was the kind of experience that Michaela was looking for, in addition to Dina’s knowledge about Medical Qigong.
The process has been VERY slow because Michaela’s body overreacts to any type of stimulation, even when it’s good for her. She is given a few exercises to do each day, and has had to restrain herself from being an overachiever and doing too many. She tried that a few times and overwhelmed her body into a detoxing mess.
She has continued to visit the Network Chiropractor to integrate the energy in her body, and that has definitely helped her nervous system to calm down. It has been wonderful for her to get out of her apartment once per week and also to come back home feeling calm.
Michaela has also begun to work with a Zhineng Qigong teacher, Reyna Lerma, to perfect her form with Lift Chi Up Pour Chi Down in order to get even more energy healing from Qigong.
As of this writing, she has been practicing 3 hours of Qigong daily for 80 days, and she has seen enormous progress:
No more heart palpitations
She can sleep a full night from 9:30pm to 6:30am (and she keeps on this schedule!)
No more blood pooling
No more hot and cold extremities
No more fainting
No more paralysis of limbs
No more suicidal thoughts
No more brain fog
No more flushing or hot flashes
She can use computer and phone screens to work, watch movies, search Google and be on Zoom
She’s able to work at least 3 hours a day with ample energy
Her menstrual cycle lasts 7 days instead of the entire month
She can also now sit outside under her favorite tree and enjoy the sun and the Rocky Mountain fresh air.
She still wants to heal these next items, and feels sure that they will heal as she continues her pursuit of Qigong practices and energy healing:
End the idiopathic hives
Heal her gut so that she can eat a wide variety of foods again
Cease the eye issues so that she can drive
Be completely rid of organ burning/buzzing feelings
Have enough energy to work as much as she wants!
I will keep you updated with her progress. The amount of healing that she has experienced surpasses anyone that she has spoken to on social media in the various groups for long-haul COVID or Dysautonomia. Her goal in this quest to heal herself is to not just manage these many complex symptoms but truly heal the cause which created these symptoms in the first place. And then to share her experiences with anyone who is interested.
She has yet to meet anyone else who is using Qigong to heal themselves from these conditions or long-haul COVID, but this may become the only modality that can truly provide relief for the millions of people suffering and looking for a way to get back to their life!
To read the next installment in Michaela’s healing journey from Long COVID go here.
My grown daughter, Michaela, was diagnosed with COVID in November 2021, which I wrote about here. COVID is a wily foe, and while we all hoped that she would recover as her brother, Morgan, did (which I wrote about here) – her path was much more harrowing.
After recovering from the acute stage of the illness, she returned to her remote work – business and life coaching of several clients over Zoom – yet she noticed that her eyes had difficulty looking at a computer screen. She chalked it up to being tired, and moved forward.
She also got back to Salsa and Bachata dancing. However, a few hours of dancing wore her out for a week! This was not her usual level of fatigue. She was accustomed to dancing for hours several times a week, plus working, hiking, and numerous other activities without ever feeling tired.
Food was also still an issue. She kept noticing that her stomach was still not tolerating foods very well, and everything still had to be cooked. She limited her variety of foods, no longer ate any fruit or vegetable raw, but still had acid reflux frequently.
After one family gathering for Morgan’s birthday, she got what she thought was food poisoning. Yet, no one else at the party got sick, and she realized that her stomach was worse off than she thought. She wondered if cooking a spaghetti squash in her brother’s oven ended up exposing her to juices of other foods. That small amount of cross-contact caused a firestorm in her gut, which meant that her stomach really hadn’t improved after the COVID virus.
Getting together with friends, she would feel fine before she left her place only to arrive at a designated location feeling exhausted. Once there, she realized that she kept asking the same question again and again. What was wrong with her brain? Why couldn’t she track conversations like she previously could? She loved being with people, yet now the noise and the interaction felt overwhelming.
Then came the hot/cold temperatures of various body parts. Her feet would be cold, and her hands hot. She’d never experienced this before. She was using Chinese herbs on various acupressure points trying to calm down her entire system, and the results weren’t what she wanted. It seemed like each day she was battling with weird symptoms that she’d never experienced before with MCAS. The herbs and creams previously calmed down any mast cell degranulation, but they couldn’t touch the symptoms she was now experiencing.
In mid-February 2022, she went outside for a walk. It was a cold evening, but nothing that she hadn’t experienced before, hiking in Colorado. She went on a walk near her apartment, and suddenly realized that her body needed to get home right away. She felt panicked at the thought of being outside. After arriving at home, she was feeling really anxious and felt like it was extremely difficult to breathe. She called me almost unable to get the words out. She told me her heart was racing, and she didn’t know what she was feeling. The main thing she did say was, “Don’t take me to the ER.” With her last experience of having 2 grand mal seizures in the ER after an IV push of Benadryl that was too quick, she now has what we have learned to call Medical PTSD (post traumatic stress disorder).
I chalked up her current situation to another MCAS storm. I suggested she take 2 Benadryl, and I stayed on the phone with her until Morgan got to her apartment. He took one look at her and said, “She’s having a panic attack. I’ll stay with her overnight.” He ended up staying that night and through the next day, and she still wasn’t doing well emotionally by early evening. The strange physical symptoms came and went, but she was so disoriented with what I’ll call brain fog, it was difficult to have a conversation with her.
Looking back now, I wish we would have taken her to the ER. She was so adamant about not having an IV put into her, that I didn’t want to create any more stress on her body. We didn’t realize until a few weeks later that she wasn’t having just an MCAS storm. Hours of Google searching helped us determine she was also having post-COVID syndrome, or long-haul COVID, or whatever term you want to call the myriad of symptoms that people have after having COVID.
Her body seemed to have gone over a threshold with the panic attack. She began to experience numerous symptoms that came and went daily: heart palpitations occurring dozens of time an hour, and especially when eating; blood pooling in one limb or one side of the body but especially in her torso; an inability to lie down without feeling she couldn’t breathe making sleep difficult if not impossible; hot and cold extremities; a buzzing sensation throughout her body and in her organs; brain fog so severe that it was impacting her ability to communicate with friends or family; nausea especially when looking at any type of computer or phone screen; vestibular issues such as dizziness which made it impossible for her to drive a car; burning organs; burning skin; an inability to take any medications because of side effects like extreme anxiety; panic attacks that lasted hours; depression to the point of producing suicidal thoughts; gastrointestinal issues where she could tolerate eating very few foods; hot flashes and flushing; hives that appeared out of nowhere; and her menstrual cycle lasted the entire month. Basically, she couldn’t eat, couldn’t work at the computer, and couldn’t drive.
Some of the scarier symptoms like fainting and a paralysis feeling also occurred. The paralysis would occur frequently in the middle of the night where she felt like she couldn’t move a limb and had to pick it up. This morphed into neuropathy where she would feel lightning bolts/electricity run through various parts of her body, and numbness at night.
Working became much more difficult. She got helped from the Colorado Center for the Blind to have Siri programmed on her phone and computer to take directions from her so she wouldn’t have to look at the screen. She did her coaching through the phone instead of Zoom, but it was very difficult to keep notes and keep her brain functioning.
She tried to get in to see her Primary Care Physician (PCP) with her new insurance. Since she was a new patient, he was unable to set an appointment with her for 6 weeks! In the meantime, she got in to see a new allergist with her new insurance network. He listened to her and said that all of her symptoms were caused by anxiety, and if she got that handled, she’d be fine! You can imagine how awful that made her feel.
She saw an acupuncturist who overamped her system, and ended up creating more issues than she was helping. After just a few treatments, she could no longer tolerate the Chinese herbs and creams that she had been using, and she lost one of the 3 foods she was eating. The acupuncturist didn’t understand how to help Michaela in a gentle or any meaningful way. It was so frustrating trying to find someone to help her manage all of these symptoms she was experiencing!
I looked up post-COVID clinics located in Colorado at a website called Survivorcorps.com. This is a group of long-haulers providing resources and supporting research about post-COVID issues. I found that UC Health had a clinic, however when Michaela called them, they said they only took patients who had been in intensive care in the hospital. National Jewish Health also has a clinic; however, they wouldn’t take her insurance, and said that the initial appointment would be $650 and then blood tests and any other test ordered would be paid out of pocket. That wasn’t doable! The post-COVID clinic in Boulder that was listed didn’t take any insurance. Everything was private pay.
Michaela went to the last clinic listed in the Denver area in Westminster. It was a 45-minute Lyft ride from her apartment. She had a one-hour intake appointment with a physical therapist, who pronounced her 98% disabled because of her inability to eat, work or drive. Michaela said she wasn’t there to be declared disabled. She was there to get help and wanted some exercises or something to help all of her symptoms! The PT said Michaela would have to come back the next week since it was time for her lunch break. Frustration was mounting at this point. There were a lot of tears at this point, on my part and for Michaela. These so-called post-COVID clinics weren’t there to really help patients!
It was so difficult for Michaela to garner the energy to go see these doctors, then pay for the transportation or have a friend drive her, only to be dismissed without any real help. She lives alone, and her friends had trouble understanding that she wasn’t well, especially because she wasn’t able to adequately communicate with them what she was experiencing. People had their own lives, and weren’t always available to drive her places, help her do laundry or get food.
My husband and I live an hour south of Denver. We were talking with Michaela several times a day, and sometimes having a call with her in virtual silence to just be a voice at the end of the line when she was having panic attacks that literally lasted all day. We were helping her get food delivered (you have to look at a computer screen to order food!) or bringing food to her. Morgan was also helping with food deliveries and other emotional support.
These were harrowing days, filled with trying to find some medical professional to help her, while also trying to keep up with our own schedules. One Sunday when my husband got back home from visiting Michaela in Denver, he asked me to take him to the ER since he was experiencing chest pains. He ended up in surgery the next day for cardiac catheterization and received 2 heart stents. Thankfully, he recovered fully, but the stress was getting to all of us!
Michaela was seeing a Network Chiropractor who was helping with her symptoms and then he overamped her system and she experienced back pain and anxiety. She stopped for a few weeks before going back to see him and to ask for very gentle entrainments. I picked her up weekly for this doctor appointment since it became the only modality that was helping her to feel connected with her body. And he was the only provider who was listening to her, and honoring what she was experiencing. He was honest about what he could help with because he didn’t understand long-COVID, but he did understand integrating energy in the body and he would work with her on that.
There are a few concierge doctors taking on long-COVID patients that we found across the US; however, new patient appointments were months or even a year or more out into the future. And everything was private pay, starting with $3000 for an initial appointment. That wasn’t going to help Michaela navigate her symptoms and her life today.
This is now the beginning of April – about 6 weeks since February’s major panic attack. She finally got in to see her PCP who diagnosed her with long-haul COVID, and ordered up numerous blood tests which all came back normal. This was not a surprising development, as we had been researching online for weeks at that point, and heard that normal blood tests were common. What was surprising was that the PCP told Michaela that she wasn’t his “kind of patient” since he was a family practice. She had chosen him because he was near her apartment which made it easier to get to him since she wasn’t driving.
I have never been so disappointed in the American healthcare system than I was at this point. It is absolutely appalling and one can feel so powerless with the never-ending rules, personalities, and unmet expectations one has to navigate, only to be let down in the end. What is a patient supposed to do when every avenue within western medicine closes them off?
Sadly, we have come to learn that Michaela’s story is very common in the long-haul COVID world. Many of the blood tests that western medicine doctors order aren’t the tests that will show what COVID has done to the immune system, vascular system or brain. And for anyone who has a chronic illness, western medicine is sadly lacking in physician appointment time to truly delve into a patient’s experience and history. Doctors are trained to look at the data from blood work or other tests and then prescribe a pill.
Long COVID doesn’t provide data in the western model, so doctors succumb to the easiest way to get the patient out of their office in the 15 minutes of allotted appointment time – tell them it’s all in their head: “Get your anxiety under control” or dismiss the patient outright: “You’re not my kind of patient.” In other words, the doctor is saying, “I don’t know what to do with you, so this must be your fault and not any lack of training or compassion on my part.”
This frustrating situation gets better because of Michaela’s tenacity and resolution to heal herself. Here is the next blog post about her extraordinary journey on the path to healing!
For those of you new to reading my blog, I wanted to provide a little history of MCAS in my grown daughter, Michaela, prior to getting to the topic of COVID.
Michaela got a diagnosis of MCAS shortly after I did about 10 years ago. We noticed how she was experiencing many of the same symptoms that I was with gastrointestinal issues, but she also had symptoms of interstitial cystitis, which her grandmother had been diagnosed with.
MCAS is a constant balancing act, and it can affect virtually any organ in the body. For Michaela, her thyroid, bladder, stomach and intestines are most frequently compromised when mast cells begin to degranulate.
She got placed on a variety of medications from a Gastrointestinal doctor including Zyrtec, Zantac (when it was still on the market), Ursodiol (alters bile for less histamine release), and Ketotifen. She never felt great on all of these medications, especially since her body continued to have ongoing inflammation evident in general swelling of her gut.
She took on her own healing, especially after a harrowing episode of two grand mal seizures in the ER, which occurred after getting dehydrated and having a mast cell flare. You can read about this scary episode here. After the seizures, and having aspiration pneumonia, she added lungs to her list of compromised organs. Her lungs would react to chemicals especially and she had to be very careful of what she was being exposed to.
Prior to COVID, Michaela had gotten her mast cells managed quite well through a completely organic diet of vegetables and fruits (cooked and raw), meditation, Network care (a type of Chiropractic practice), Traditional Chinese Medicine herbs, and plenty of Salsa and Bachata dancing! She no longer needed to take any “Western Medicine drugs”, and had been off of them for over a year when diagnosed with COVID.
She no longer had inflammation in her body, and had lost 30 pounds just through healthy eating, dancing and enjoying life with plenty of laughter and friendship. She is convinced that especially the Zyrtec and Ketotifen had created more inflammation in her body than it helped to decrease. She was feeling better than she had felt in years. And then came COVID.
It is important to state that Michaela decided to not get a COVID vaccination due to her extreme reactions to chemicals, and her sensitivity to anything being put into her body.
After 18 months of social distancing, mask wearing and very little dancing, she got to celebrate her 31st birthday in November 2021 with a test for COVID. The pre-birthdate party she celebrated with her friends became just one of the positives she experienced – the other being the results of the PCR test.
She awoke a few days after the party with a severe migraine, which is not a usual symptom of MCAS for her. Similar to the symptoms that she experiences with a MCAS flare, COVID began to create gastrointestinal issues. She was virtually unable to tolerate eating anything because of acid reflux and nausea for about 10 days. She kept hydrated with mineral water, and never had any lung involvement, which was a relief. She barely even had a cough for the entire illness, and the fever only lasted about 36 hours and wasn’t very high. She did have fatigue, but was prepared for that since we had heard that was a normal symptom of COVID.
She had some strange symptoms like very painful skin that almost felt like it was burning, and it was difficult to take a shower. Some of the TCM creams helped this. So the “usual” COVID symptoms weren’t at all what she was experiencing, but she definitely had COVID and her gut no longer would tolerate the variety of foods that she had previously been able to eat. She couldn’t eat raw foods, like apples, anymore. Everything had to be cooked, and food didn’t taste good once she lost her sense of taste and smell.
It was a rough illness but she didn’t require hospitalization, and didn’t even need to go to the doctor. She did reach out to Dr. Xiu-Min Li, our Traditional Chinese Medicine doctor, to inquire about what she could do for her immune system to help it fight the infection and get back to normal. Dr. Li suggested various herbs in patches placed on specific acupuncture points, and that helped a lot.
The acute infection lasted for 10 days, and yet she still had chronic acid reflux that wasn’t helped by Pepcid. A half dose of Pepcid created a mast cell storm that was very uncomfortable and included sweating, nausea, and a feeling of almost passing out. So, Pepcid was out of the question. Overall, though, she felt like the worst had passed and was ready to get back to her “normal” life.
Our family was able to celebrate Michaela’s birthday and Thanksgiving the first weekend in December. What we didn’t know then was that the end of the acute illness was the beginning of another path that became quite scary and weird, with new symptoms and ongoing fatigue, and a journey that Michaela continues to forge a path through. The continuation of her experience and her path back to health is shared in the next blog post here!
This is a blog post that I’ve been intending to write for years. I wanted to share what we’ve experienced about helping our son, Morgan, learn how to manage visiting his allergist while he still lived at home. He could then make good choices about getting an allergist once he was out on his own, and Mom wasn’t around to give directions!
We’ve been blessed that Morgan was able to have the same allergist for 21 years, until he graduated from college. She watched him grow up and to learn to take responsibility for his health. However, it wasn’t until he was 19 years old, as a freshman in college, that he went to the allergist unaccompanied by Mom. Boy did it take work to get to that point!
Morgan visited with our allergist at least every 6 months throughout his life, beginning with his first appointment at 15 months old. He learned the routine of an office visit – fill out the paperwork listing all his medications, have a height and weight check, take a lung function test or two, and visit with the allergist to tell her how he’s feeling.
If Morgan had experienced any type of issue – a cold, virus or a pollen reaction – I wanted him to learn how to use his words to explain what happened. This was good practice for him to be able to explain to any adult what he was experiencing in his body and what he needed to feel better.
It took many years for Morgan to learn how to properly list all his medications that he took for pollen allergies and asthma, and to not forget any of them. He had to know the exact medication name, the milligrams, how often he took the medicine and whether he needed refills. I began having him complete this form when he was in grade school so that he could learn the details of his health needs. He would need to check with me about the answers, but he did all the writing.
Many times he would have school forms or camp forms that needed to be completed. He would complete parts of those forms, and I would fill in the rest until he was able to complete the forms by himself once he applied for accommodations in college.
It is vital that our children know all about their health condition(s), and are prepared to go to the doctor by themselves. Taking the initiative and the time when they are young to allow them to learn about the paperwork will help them later in life when they leave home.
It was at Morgan’s first allergist appointment that he had his first skin prick test. Holding down a wiggly, itchy toddler for 15 minutes was no easy feat!
From that test on, I kept an Excel spreadsheet where I input results from every skin prick, RAST and Immunocap blood test through the years. Every 3-4 years, we had repeat tests run. Because of the number of allergies that Morgan has, it has been helpful for him to refer back to this spreadsheet to see if he’s got an allergy to mold, or to some food that he wants to try. Then he can discuss the allergy test result with the doctor to see if a food challenge is warranted.
Once Morgan graduated from college, and moved to a suburb of Denver, Colorado, he needed to get a new allergist. He searched around and found a physician who knew our allergist. This doctor had been an allergist for over 30 years, and that made Morgan feel more comfortable. Morgan moved again two years later, and once again wanted to find an allergist near his home. This time, it wasn’t as easy to find a good fit. The first doctor he saw said that carrying just one autoinjector – Auvi-Q – was enough. That was enough for Morgan to decide this wasn’t the doctor for him. He knew he needed to always carry two Auvi-Q’s, and the fact that this doctor didn’t state that was concerning enough to leave the practice.
He decided to search for another doctor, and has now found a younger woman that he likes very much. She has redone all of his food allergy testing, and found that he is able to do an oral challenge for almonds. So far, he hasn’t found a desire for this. He continues to have food allergies to peanuts, tree nuts, sesame, fish and shellfish, and continues to see an allergist once a year and ALWAYS carries two Auvi-Qs with him everywhere.
I have full confidence that he knows how to manage his health, and he is fully capable of communicating with an allergist about all of his medical needs. And that was always the goal!
For too many years, medical doctors have questioned patients with symptoms and reactions from chemicals. I’ve had a doctor tell me that it must be in my head! But I knew that I was having breathing difficulties, rashes, or headaches from being around chemicals.
These chemicals could be Volatile Organic Compounds (VOCs) such as paint, aerosol spray, off gassing from wood floors and even nail polish remover. Or other chemicals such as pesticides, cigarette smoke and perfumes can also elicit a reaction in sensitive patients like me.
New research, recently published in December 2021, from researchers at The University of Texas Health Science Center at San Antonio as well as the Massachusetts Institute of Technology and the AIM Center for Personalized Medicine, supports Mast Cell Activation Syndrome (MCAS) as an underlying mechanism for chemical intolerance. You can answer 3 questions as part of the Brief Environmental Exposure and Sensitivity Inventory (BREESI) to determine your level of intolerance.
If you’d like to read the full research report, you can do so here. You will notice a familiar name in the MCAS community on the research – Dr. Lawrence B. Afrin.
For those of us with chemical sensitivity, this research isn’t surprising at all! For too many medical doctors, it will take even more explanations as to what MCAS is and how chemicals can affect us. This isn’t an IgE allergy, but there are now questions that can be asked and answered to determine if you have a chemical intolerance. And this research is a starting point for a conversation to educate the medical community, and also our families, friends, schools and workplaces of the seriousness of reactions to chemicals.
This chemical sensitivity has kept me working out of my home since I got diagnosed with MCAS. My senses are assaulted in too many office places with the smell of cleaning solvents, perfumes and the pesticides sprayed to get rid of bugs. And the conversations that I’ve had with people have more commonly ended with them saying that I’m just too sensitive to my environment.
My husband lovingly says that I have the nose of dog – I can sniff out someone who has been smoking, or is wearing cologne from across the room! I have had to move away from someone wearing perfume if they sit next to me because my eyes start watering and I feel like my chest is tight making it difficult to breathe.
In our home, we no longer use any harsh cleaning chemicals. I found myself gagging too many times with the smell of 409 or Windex. The brand Better Life has been a great find for every type of cleaning product with natural ingredients. (They aren’t paying me to say that – I’ve just found that they are the best and they work!)
For a year or so, I colored my hair, but soon developed an allergy to the hair dye. My scalp began to burn when my hairdresser applied the color, and I decided to call it quits. After that, I also decided to no longer paint my fingernails or toe nails, wanting to keep anything chemically based away from my body to help it heal and not to be triggered.
A few years ago, I wrote about my daughter, Michaela, and the issues she was experiencing with chemical exposures in this blog post. She has had to continue to stay away from swimming because of the chlorine. I love to swim, but I too was disliking the chlorine exposure at the pools in our area, mainly because of skin rashes I was getting. I found an athletic club with a pool that uses an ozonator to filter the water, and a VERY minimal amount of chlorine. So little, in fact, that you can’t smell chlorine when you walk into the pool area. It has been so wonderful to be able to swim and to not get a rash from the chemicals!
I’ve also had to be very careful of the makeup, lotions, and anything else that I apply to my skin or hair to make sure that there are no fragrances and minimal chemicals in their ingredients. Once I find a product that works, I stick with it for years!
There is so much more research that needs to be done on MCAS and the range of triggers. We sensitive ones are like canaries in the coalmine, however all of this chemical exposure isn’t good for anyone. But for those of us with sensitive systems, it can literally be life threatening!
When I was first diagnosed with a Mast Cell Activation Syndrome (MCAS), my GI doctor told me that when he got my biopsy results back, he expected to see a high eosinophil count also. And he was correct! That was before research had been completed on these two cellular disorders, and today it’s more common to hear mast cell patients talk about also having high eosinophil counts.
I haven’t heard of a lot of EoE patients, however, talk about high mast cell counts. Yet from my anecdotal evidence, I have spoken with many adults and families managing EoE who tell me about symptoms of their EoE that sounds VERY familiar with mast cell patients.
I believe there is big opportunity for more research on how these two cells interact, and how a patient who receives a diagnosis for one of these illnesses needs to be monitored for the other.
To my unscientific eye, these cells do look similar, however from the research we have now, we know that they don’t respond similarly to stimuli. In a 2014 research study, the authors found “Eosinophils were more viable when mast cells were present, dependent on soluble mediators and on physical cell contact…Mast cells were not as clearly affected or made more viable by eosinophil coculture.”
Further, the research found, “Both mast cells and eosinophils are present in biopsy specimens of patients with EoE. There is a great mast cell signature in EoE, and the presence of mast cells has been found to be useful in distinguishing between EoE and gastroesophageal reflux disease in biopsy specimens….IL-9 produced by mostly eosinophils served as a potent mast cell growth factor.”
Since I have a diagnosis of both MCAS and EoE, I can tell you that I have learned the difference of what the symptoms feel like for each of the illnesses. With EoE, I will experience the following symptoms in a flare (which is most likely to occur in the fall season): coughing, choking, gagging, acid reflux that I feel in my breast bone, and high stomach/lower esophagus pain, nausea and diarrhea. With MCAS, there isn’t as much of a season where I feel the symptoms. In general, I have some of these symptoms every day, to a greater or less degree: “hot flashes” with anxiety feelings after that, itchy skin and rashes, stomach pain, nausea and diarrhea. I have found that EoE affects the mucosal barrier of my gut much more than does MCAS. In other words, the eosinophil cells feel meaner and more destructive than the mast cells.
It’s difficult sometimes to know which illness is affecting me. I have found that for me certain medications work better to minimize the symptoms of one condition. Your own experience may be different! For me, Zyrtec helps MCAS but doesn’t do much at all for EoE. The mast cell stabilizer medication, Ketotifen, helps both MCAS and EoE, but is really effective for MCAS. The swallowed steroid, Asmanex, helps the EoE but doesn’t do much for the MCAS. Chinese herbs help both because the herbs aren’t geared toward one kind of cell, but instead work on inflammation in the body as a whole. That’s one of the reasons I like Traditional Chinese Medicine so much!
There are more drugs being researched that have been shown to decrease IL-5 (Interleukin 5) which is a cytokine involved in both MCAS and EoE. Mepolizumab, sold under the brand name Nucala, is one of these monoclonal antibody drugs, and has been studied for eosinophilic asthma and idiopathic mast cell activation and shows promise. We need more options to manage these two conditions, that although rare, can completely debilitate the patient and are becoming less and less rare.
Many Mast Cell Activation patients have similar experiences when it comes to this time of year, known affectionately by many as the “Fall Flare.”
What is the Fall Flare? It’s the time of year from around the middle of August to the first frost where the pollens, especially ragweed, are high. Other weeds and molds can also be high. This combination creates triggers for mast cells to activate, which can mean misery for MCAS patients.
Some MCAS patients are able to tolerate a wide variety of foods in their diet until the Fall Flare occurs, and then they’re back to only tolerating a few foods again. So frustrating! Stomach aches return and brain fog. Asthma can flare, and for those of us with EoE (Eosinophilic Esophagitis) coughing and choking can return with a vengeance. Nasal allergies will also become problematic as pollens hit the “high” or “very high” levels.
I’ve found that keeping track of pollen counts is a good way to prepare myself to increase my antihistamine medications (and Chinese herbs) to combat symptoms. The website Pollen.com doesn’t provide exact data for my area. Instead it is an “average” pollen count from past years, which can be wildly inaccurate especially if there is rain or wind. Better than this website, I like to follow a local allergist’s pollen count on their website because pollens will dip and surge depending upon the daily weather. Rain can calm down the pollen counts, while wind can make a “moderate” pollen count seem much higher.
Fall isn’t the only time that pollens can exacerbate MCAS symptoms. In the Spring, trees are usually the highest pollen producer. Grasses start in the early summer months, and can remain high throughout the summer depending upon your location. And for those with indoor allergies, it can be a year round adventure.
As a child, living in Colorado, I had allergies to grasses, trees, weeds and molds. My allergies would amp up in April when the trees would bud and remain until that wonderful first freeze that used to occur by the end of September. We always got our first snow by the first of October. Our weather has become so much warmer, and allergy season has now extended from March through October. This year, we had days in June that topped 90 degrees, and many days into the end of September with that same hot temperature. That is unprecedented, and my symptoms of gut aches were much worse this year than they have been in previous years.
Through the “magic” of Dr. Li’s Traditional Chinese Medicine, I rarely have nasal allergies anymore. However, with this year’s Fall Flare I began having stomach aches in mid-August with the start of ragweed pollen. These have continued until now on and off. We’ve had only a few rains over the last 2 months, which would really help to tamp down my symptoms.
Short of being able to change the weather, what can you do as a MCAS (Mast Cell Activation Syndrome) patient to calm your symptoms at this difficult time of year?
Keep a diary of your symptoms to see if there is a pattern with the weather, or with your exposure to fragrances or food. Getting rid of triggers goes a long way toward feeling better and more stable.
Pollens are a stressor to your body and mind, equal to the stress of working too long of hours or of not getting enough sleep. Give yourself a little extra care, and try to not take on too many activities outdoors when the pollens are high.
You might want to consider wearing a mask if you need to be outside. I’ve found that to help keep my symptoms at bay.
If you don’t have an air purifier, you might consider getting one. Additionally, air conditioning helps to not only cool the air (since many MCAS patients react to heat) but also to filter out pollens especially if you use HEPA filters. They’re more expensive, but I’ve found they are worth every penny!
Keep your windows closed during high pollen season, and keep your pets out of your room if they also go outside frequently. They are bringing in pollens to your home.
Make sure to speak with your doctor about your symptoms, especially if you are feeling unable to complete your regular tasks. There is likely something that can be done to mitigate your symptoms and get you back to life!
Remember that the Fall Flare doesn’t last forever. Taking it one day at a time, and maybe even one minute at a time will make it more manageable.
In case you haven’t heard of Dr. Gupta, here is a snippet from the bio on her website for the book: “Ruchi Gupta, MD, MPH, is a Professor of Pediatrics and Medicine at Northwestern University Feinberg School of Medicine and a Clinical Attending at Ann & Robert H. Lurie Children’s Hospital of Chicago. Dr. Gupta has more than 17 years of experience as a board-certified pediatrician and health researcher and currently serves as the founding director of the Center for Food Allergy & Asthma Research (CFAAR). She is world-renowned for her groundbreaking research in the areas of food allergy and asthma epidemiology, most notably for her research on the prevalence of pediatric and adult food allergy in the United States.”
It was Dr. Gupta’s research in 2019 that found that over 10% of adults in the USA are estimated to have a food allergy. It was also Dr. Gupta whose research estimated that 8% of children in the USA have a food allergy, and to make things even more personal for her, she is a food allergy mom.
I have been in the food allergy community for over 20 years helping my son to manage his life threatening allergies. I can’t remember a book I’ve read on the topic of food allergies that also includes: FODMAPs, FPIES, EoE, OAS, GERD, Autoimmune disorders, Alpha-Gal, and Chemical Sensitivities. Some of these topics are taboo in the medical world, but Dr. Gupta tackles all of them, and she gives information that I haven’t read before anywhere.
She also goes into the Microbiome and its affect on the immune system – one of my favorite topics! She delves into the question of whether we Moms are to blame for our children having food allergies, and lets us all off the hook. Thank goodness!
There is great information about the Western diet and its impact on inflammation in our body and the gut-brain axis. Additionally, she discusses the nervous system and the vagus nerve, which is such a welcome subject when discussing the immune system, and is only recently being discussed by Western medicine doctors.
The only topic that I wish was discussed in the book was Mast Cell Activation Syndrome (MCAS). So many people mistake the symptoms of MCAS with food allergies, and there is a definite difference. You can read more about MCAS on my website here.
Even if you’ve been in the food allergy community for years, I think you’ll find this book educational, and you will likely learn something new!
Note: I was not paid in any way to write this review of the book. As with any book featured on my website, I personally read the book and decide whether it fits my AllergicChild.com audience and also meets the standards of truth necessary for any family managing food allergies.
One of the most frustrating things with Mast Cell Activation Syndrome (MCAS) is getting an actual diagnosis. The condition mimics so many other illnesses and conditions that it fakes out the patient, and even more so, the doctor(s). Sadly, some doctors, without the ability to make a diagnosis of what is wrong with a patient, will say “maybe it’s all in your head.”
I heard those words from various doctors when I was attempting to get diagnosed with what was wrong with me. It took me 5 years of suffering before I finally got a diagnosis, and that was 10 years ago. Once I did get a diagnosis, I would still hear variations of it. And it was very disheartening.
I saw a Chiropractor for a few years, who said to me once, “I should have someone sneak a new food into your meal. I’ll bet you’d be fine eating it.” I was mad and shocked that she would insinuate that the severe gut issues I was experiencing was caused by something I was making up in my head or by anxiety. She knew that I was seriously ill, and eating only 4 different foods. At the time, I knew that I was having reactions to trace amounts of foods (and chemicals). I had to be careful of pots that weren’t thoroughly cleaned, or a knife put into my vegetable oil based “butter” that cross contaminated it. Right around that time, I had awakened in the middle of the night at least twice feeling as if I couldn’t breathe. I finally found the source – my mouth guard I wore overnight. I had not thoroughly cleaned my mouth guard of the cleaning chemicals I had used. It’s frightening to awaken in the middle of such a severe reaction, and it taught me to be much more careful. It also taught me that trace contact with items could be severely affecting me. My body was really amped up, and I needed to be much more careful. I knew that this chiropractor wasn’t the right one for me anymore, and chose to see a new practitioner who honored the experiences I was having, and who knew that my symptoms weren’t all in my head!
Then there was the allergist at a food allergy conference that I attended about 5 years ago. I asked a question about Mast Cell Activation, to which he replied that there is no such thing. It is made up! That was difficult to hear, but I realized that in his pediatric allergy practice he didn’t have the training to understand mast cell issues. I couldn’t imagine being one of his patients trying to find out what was wrong, and having to hear him negate their experience! I decided to unfollow him on Twitter as my final goodbye to his way of thinking.
When I would hear comments like these from a doctor, I felt he/she was suggesting that my physical symptoms weren’t real. And I knew they were very real, and were causing me a lot of pain.
Yet, I also knew that my mast cells activating had a mental/emotional component to them. And I’ve understood and tracked this better through the last few years. If I feel stressed because of pollens in the air, or feel overwhelmed with work, or not getting enough sleep, my gut hurts more. And why does my gut hurt? Because the twitchy mast cells in my body are most prevalent in my gut. The receptors on those cells are constantly looking for a reason to protect me. And there’s nothing like stress to activate those receptors.
I’ve gotten better at being able to identify when I’m stressed. I have a local allergist’s office that posts the local pollen counts daily, and this helps me to check their website when my gut feels especially cranky. Inevitably, the pollens have gotten higher, and I might need to increase my antihistamines.
I can clue into my body when I’ve been working a lot to see what is occurring in my energy levels. Am I overtired? How am I sleeping? Am I anxious with a new client? All of these help me to monitor whether my mast cells are likely to activate in an attempt to safeguard me. And a lot of those feelings are actually sourced by what’s going on in my brain. What am I telling myself?
This is where I’ve learned that there is communication between my brain and my body that is important to recognize. The desire to be perfect at work and to never make a mistake is sadly a familiar mantra in my brain. Yet, recognizing that I’m human, and mistakes are part of the human experience is something that I still struggle to accept. And when one of those mistakes occur, my brain is likely to chastise me with harsh language. And guess what? The mast cells activate!
Another way that my brain affects me is how I view my condition. I’ve learned with a chronic illness that if I awaken in the morning feeling less than optimal, and I then kick into telling myself, “Another day of feeling terrible,” I’m guaranteeing that I will have a joy-less day.
If, on the other hand, I tell myself, “Okay body, you’re not feeling as well as you would like, but let’s get going and see if this gets better,” it’s amazing how my body starts to shift. Inevitably, I find that I can still take a slow walk in the neighborhood, or even just have a loving conversation with my husband or a friend. And my mood begins to lift, and my body begins to feel better.
I’ve learned that if I wait until I feel wonderful, or even normal (whatever that is/was!) to do things, then I will never go and do anything. Sometimes, going and doing things is what helps me to feel better. And if nothing else, just having a conversation with someone and connecting to them allows my brain and body to shift.
So, while MCAS isn’t all in my head…the thoughts surrounding the symptoms and conditions of MCAS are certainly affected by my thoughts. I’m continuing to learn more about the brain and its wiring with the body with an app called Curable. I will write more on this blog about what I’m learning as I continue to practice the exercises. So stay tuned!
Now that my son, Morgan, is a 25 year old man he is making the informed decisions about all aspects of life, including choosing allergists, physicians and whether to receive a COVID vaccine.
I feel secure in the knowledge that he is fully capable of making these decisions, and it’s really wonderful that he and I can still talk through them meaning he still values my input, at least a little!
Morgan’s history with vaccinations is problematic. He received an MMR vaccine at 15 months old, in 1997. Because he had reacted to touching peanuts previously, and had never eaten eggs, we remained in the waiting room for 20 minutes. Nothing appeared there, however he later reacted by swelling to the point his eyes shut, and his entire body swelled into what I called an alien for 3 days. It was frightening. During the doctor visit, our pediatrician referred us to an allergist while saying, “Morgan is having more allergic reactions than I know how to treat!”
Several years later, it was time to get a Chicken Pox vaccine which we had delayed. With his eczema, our allergist suggested that the vaccine would be preferable to him having what would likely be a more serious case of chicken pox. We went to her office to have the vaccine administered gradually in increasing dosage amounts, and he appeared to do fine. However, 6 hours later he began to vomit every 15 minutes.
He became severely dehydrated, and we took him to the emergency room. They had to re-hydrate him through an I.V., and he remained in the ER overnight. For the next two days, he was horribly ill. Our allergist is convinced this was a reaction to the shot. He never exhibited hives, yet we learned that allergic reactions can take on many different symptoms.
Fast forward to heading off to college. The Meningococcal vaccine was required for those students living in the dorm. Both our pediatrician and our allergist said let’s wait on this vaccine, and our allergist provided a medical exemption. If the illness had shown up on campus, we would then get Morgan vaccinated. Thankfully, that never occurred.
For those of you who read this blog frequently, you will remember that Morgan had COVID-19 which I wrote about here. Since no one yet knows how long the immunity lasts, and because he would like to once again travel, Morgan began to look into getting the COVID vaccine.
He did his own research to find out that today’s Chicken Pox vaccine appears to use some of the same preservatives as the one used in the Pfizer COVID vaccine. He was also aware that a few individuals in Britain who had diagnosed food allergies were experiencing anaphylaxis to the Pfizer vaccine, generating a warning from the British medicine regulator stating anyone with a history of anaphylaxis to foods or medications to not receive that vaccination. However, the United States Center for Disease Control states that the “CDC recommends that people get vaccinated even if they have a history of severe allergic reactions not related to vaccines or injectable medications.”
The Johnson & Johnson vaccine looked like a better alternative, and it was only one shot. Morgan discussed this with his new allergist, who agreed that this was the best choice for him. She also liked this shot because he had had a case of COVID. She suggested that he obtain the vaccine in a hospital environment, and to remain there for at least 30 minutes after the vaccination.
This past week, Morgan received the vaccination! He was prepared to have some flu like symptoms, especially since his boyfriend, Quinn, had received the J&J shot and experienced some symptoms for about 24 hours. By the evening of the shot, Morgan began to feel body aches, and had a rough night sleeping. He felt a little nausea, but by 48 hours after the shot he was feeling back to normal.
Hooray for a positive outcome! He’s especially looking forward to traveling, and is already preparing for his first trip now.
I was diagnosed with MCAS (Mast Cell Activation Syndrome) almost 10 years ago. It took a few years of trying every prescription medication my GI doctor could find to begin to get my symptoms stabilized, and even then I still was suffering from weight loss, fatigue, stomach pain, insomnia and an inability to increase my diet.
I have written at length about how I got diagnosed in a series of posts here. I have continued to work toward healing, and the question that has come into my mind a lot recently is, “Why is it taking so long for me to heal?”
I know that I am SO much better than I was 6 years ago when I first started with Dr. Xiu-Min Li and Traditional Chinese Medicine. (If you want more detailed information about Dr. Li and her protocol, read this.)
I was hoping to get back to New York City to see Dr. Li in person last year and to discuss my slow progress of healing, but the pandemic altered those plans. Thankfully, our almost monthly Zoom calls have kept her up to date and have kept me receiving all my digestion teas, creams and herbal foot patches. However, unlike other MCAS patients of hers, I am still unable to tolerate almost anything that goes through my digestive system, and that severely limits my progress. I have been able to sloooowwwwly increase the herbs in my digestion tea in milligram quantities, and the same is true for the herbal foot patches. I would so love to just be able to take herbal pills and begin to eat a wide variety of foods and feel great! For some reason, that isn’t the path of healing that has been laid out in front of me. And the only way to tolerate more herbs in my digestive system is to heal my digestive tract. Dr. Li reminds me to practice patience and to be grateful for small amounts of progress.
Acupuncture is helping to heal my stomach and gut, but it too is a balancing act of my doctor using enough needles to create healing without stimulating my system too much with too many needles. Thankfully, I don’t have to worry about how she does that, but I can tell you that she has learned my internal system quite well over the last 6 months. I explained to her at my first visit that my nervous system gets amped up and goes into fight or flight mode if my body gets overstimulated, which defeats the entire purpose of acupuncture! Dr. Debbie thinks that my body needs to detox the toxin that she believes remains from when I reacted severely to a wasp sting almost 15 years ago. She has begun a detox regimen where every 2 months she pokes my ears and encourages them to bleed. It sounds barbaric, but I can attest that my body is feeling less toxic, and according to her my pulse and tongue appear to be showing signs of the detoxification which is very encouraging. This detoxification is currently showing up in my skin which has flared with eczema and other rashes that itch furiously. So again, we are working slowly and methodically toward healing.
Both of these Traditional Chinese Medicine modalities have allowed me to decrease my medications, which is a real gift. I no longer need the swallowed corticosteroid that I was using for EoE, because the combination of acupuncture and digestion tea has healed my esophagus. (To read more about acupuncture and EoE, read this.) And I’ve decreased my Zyrtec dose to 1/2 of a pill daily because I no longer suffer from extreme pollen allergies in the spring and summer. Additionally, I haven’t had to take any Rhinocort AQ nasal spray so far this year. That is amazing!
I continue to see my Network Spinal Analysis (NSA) chiropractor, Dr. Munn, weekly and have learned that my spine is unwinding. In the years that I was so sick and unable to sit or walk for long periods of time, my spine was apparently twisting. I just knew I hurt, and didn’t realize everything that was going on with my body. My body is now healing, and the unwinding of my spine has created a tingling feeling on the left side of my back where it feels like it’s been asleep – probably because it has! This unwinding has been alternating between pain and relief as years of energy are releasing. Once again, Dr. Munn tells me that we can’t force my body to unwind because we don’t want to overload the nervous system, and the body is going to take its time…patience, patience. Read more about my experience with NSA here.
Wisdom Healing Qigong is assisting my body with releasing all of that energy, and I practice it daily. I have found the meditative practice not only helps my body, but it also calms my mind. MCAS created a lot of anxiety inside my mind, and I used to get jumpy with every sound and was constantly worrying about every symptom I was experiencing. Meditation and Qigong have quieted my mind so that I can now distinguish when I am jumpy, and can use detective work to determine what is creating that anxiety.
The only way out is through. The unwinding of my body is also the unwinding of my mind, and I continue to learn more about myself through this journey. I now experience more connection between my mind and my body, and the herbs and other healing modalities create even more opportunities to be with any painful or challenging areas along with the ability to be with the good stuff. My body is no longer asleep, and I’ve learned how to breathe through pain and not need to take a medication immediately to numb it. I would certainly love to not itch, but this too will pass!
You have likely heard of the Faster Act of 2021, but just in case you need a little more information about how it will affect those with sesame allergies, let me just say – it has been a long time coming.
First, a little history: When my son, Morgan, was diagnosed at 18 months old in 1997 with food allergies, there was no labeling law in affect. We went home from the doctor’s office with a diagnosis of peanut and egg allergies, and I decided to start making as much of his food from scratch, because I couldn’t trust that the label on any food accurately listed the correct ingredients. And any type of cross contact during the manufacturing process was an even further dream of getting that information!
The Food Allergen Labeling and Consumer Protection Act (FALCPA) of 2004 went into effect on January 1, 2006. According to the FDA website, “Congress passed this Act to make it easier for food allergic consumers and their caregivers to identify and avoid foods that contain major food allergens. In fact, in a review of the foods of randomly selected manufacturers of baked goods, ice cream, and candy in Minnesota and Wisconsin in 1999, FDA found that 25 percent of sampled foods failed to list peanuts or eggs as ingredients on the food labels although the foods contained these allergens.” Good thing I was being cautious about labels on food products!
The ‘major food allergens’ that were required to be listed in plain English with FALCPA were: peanuts, tree nuts, eggs, milk, wheat, soy, fish and shellfish. These are known as the Top 8 in the USA. Other countries required different foods to be labeled on products manufactured in their country, and some of those countries included sesame.
Morgan got diagnosed with a sesame allergy after he endured a severe hive reaction from eating chicken nuggets at McDonald’s. We had a skin prick and blood allergy test performed by our allergist, and she wanted to see if he was allergic to sesame, since those little sesame seeds can appear in food and be almost undetectable. Sure enough, he was severely allergic, and we have been monitoring labels and calling customer service telephone numbers for food manufacturers for the last 20+ years. And let me tell you, it is VERY difficult to find a bread that doesn’t have cross contact issues with sesame!
At one time, I tried to make my own gluten-free bagels since our daughter was diagnosed with Celiac disease. I figured that these bagels would also work for Morgan, and we would know that they didn’t have any sesame in them, nor any possible cross contact in our safe kitchen. After hours of work trying to make a masterpiece, the bagels turned out less than ideal – better for use as a hockey puck or a door stop than for eating!
Since then, we searched for a safe bread in the grocery store, hoping to find one that didn’t also have sesame seeds on a different bread in their manufacturing line. We would then call the company and ask if there was ANY chance that the bread would cross with sesame in their plant. Sometimes we would find out that there was another product that contained sesame that was also run on the same lines. Sometimes we’d be lucky and find a safe bread! For years, Morgan used Roman Meal bread for sandwiches and for a hamburger bun because we couldn’t find any safe hamburger buns in any of our local grocery stores.
The FASTER Act – Food Allergy Safety, Treatment, and Research Act – not only requires that food manufacturers list sesame on a label beginning January 1, 2023, but also provides for more research on the prevalence and economic costs of food allergies. The food label must list sesame in ‘plain language’ and will become the ninth food allergen to be labeled, allowing those of us in the USA to rename the Top 8 to the Top 9!
President Biden signed the Act into law on April 23, 2021.
Morgan and I cheered upon hearing that! And he so looks forward to being more confident of his food choices knowing that sesame will soon be labelled!
My nine-year-old daughter has severe anaphylactic food allergies. At age four, she started experiencing anxiety about her annual allergy skin prick tests, attending birthday parties, visiting family, and eating at restaurants. Searching online, I could find children’s books regarding food allergies and a handful of children’s books regarding anxiety, but there weren’t books that specifically and directly addressed food allergy anxiety in children. So, I started researching techniques to help children manage their anxiety, and testing which approaches helped my daughter the most.
When she turned five, my daughter enrolled in a clinical trial for the peanut patch, adding blood draws and food challenges to her long list of anxiety-provoking situations. My approach was to help her write and illustrate a story in which she overcame her fears of going to her peanut patch appointment by being brave (and getting a sweet treat afterwards). She felt that the story, called “Rosy Goes to the Doctor,” helped her prepare for future appointments. That is how I was inspired to write a children’s book to help my daughter and other children like her who struggle with the daily challenges of living with a food allergy.
The illustrations in the book are wonderful. Did you do the artwork also?
I love the illustrations! Bumblebee Books and Olympia Publishers provided me with an illustrator named M. Das. I felt that it was important that the illustrations were somewhat realistic and included imagery of a human child to whom children could truly relate, rather than a fictitious animal character. My daughter and I worked together to provide the illustrator with detailed descriptions of each character in the book and what we wanted to see on every page. It was really neat to see our words come to life in the drawings that came back to us.
As the parent of a child with food allergies, how much of the book was written from you or your daughter’s personal experiences?
All of it! Both my husband and I have an anxiety disorder that we have to manage, and we experience additional anxiety about our daughter’s food allergy. Our daughter has experienced terrible anxiety in anticipation of her allergy appointments, going to play dates and birthday parties, being different from her friends and schoolmates, and speaking up to friends as well as strangers about her allergy. It breaks my heart that she lives each day with this nagging fear about the lurking danger of her food allergy. Our approach has always been to educate and empower her to learn what she can do to keep herself safe. As a family, we have tried all of the “Ways to Help Your Child Manage Anxiety” included in the back of the book (except the proximity food challenge and happy visit), and we’ve practiced them for many years to learn what techniques help us the most.
I love the birthday party situation in the book where Quinn has to speak up for herself. I felt butterflies for her! How did you teach your daughter about handling such a situation?
It took several years and many birthday parties before any of us felt reasonably calm about the experience. We still follow the same process of checking with the party planner ahead of time on what food will be served, reading all of the ingredient labels, staying away from foods without a label, and making sure we have two epinephrine auto-injectors with us. As my daughter has gotten older, it upsets her more to bring her own safe treat and eat something different from the other kids at the party. Sometimes we are able to work with the other parent or bakery to ensure the shared party treats are safe for my daughter to eat. But we continue to work on helping her accept being “different” from her peers. Maybe that will be my next book topic!
In the Notes to Parents in the back of the book, you mention teaching a child mindfulness. What’s the best way that you’ve found to have a child be willing to try this skill?
Number one is finding the right tools, and number two is setting an example by practicing mindfulness yourself in front of your child. I’ve included a number of mindfulness tools for kids in the back of the book, but two additional tools that we love are “The ABCs of Yoga for Kids” learning cards and “50 Mindfulness Activities for Kindness, Focus, and Calm” cards. We practice these cards together, often before bed. A great book to help teach your kids about mindful belly breathing is “Sea Otter Cove: A Relaxation Story” by Lori Lite. We sit and practice different breathing techniques together, starting when we are already calm. As a parent, I absolutely loved Dr. Kristen Race’s “Mindful Parenting” book along with all of her amazing techniques for busy parents and the entire family. My child has witnessed firsthand how I can maintain more peace and levelheadedness when I am disciplined with my daily meditation practice. When I am feeling particularly frustrated or stressed in front of my child, she sees me stop, pause, and take a breath, or blow out an elongated breath, or remove myself from a heated situation and find ways like reading, listening to music, or taking a bath to calm myself. She also sees me push myself to do something in spite of my fear, and I help her recognize all of the instances in which she has been brave despite her food allergies.
Is there anything else you’d like to tell us?
I truly hope that this book helps children and families with food allergies. It’s based on my own personal experience, research that I’ve done through books, conferences, webinars, and meeting with a child psychotherapist whose own child has food allergies. Before publication, it was vetted by that same psychotherapist as well as my child’s board certified asthma and allergy doctor.
I have been a patient of Dr. Xiu-Min Li’s for over 5 years now, utilizing her Traditional Chinese Medicine (TCM) herbs to assist with healing my gut, and minimizing the symptoms I have experienced from the dual diagnoses of Eosinophilic Esophagitis (EoE) and Mast Cell Activation Syndrome (MCAS).
I have also been slowly weaning myself of other medications that are standardly given for EoE and MCAS. I am currently on a very small dose (1/4 of a 10 mg tablet) of Zyrtec (antihistamine) and an even smaller dose (1/20 of a 1mg capsule) of Ketotifen (mast cell stabilizer) in addition to one puff of swallowed Asmanex daily. The reason why I am on such a low dose of these medications is that my gut has been healing, and taking higher doses of any of these medications makes me feel worse rather than better.
Additionally, while Flovent is generally given to be swallowed to mitigate the symptoms of EoE, I recently found out I’m reactive to it. I experienced hives and eczema on my upper chest after being on the drug for a few weeks, and even with lowering the drugs, the itching was severe. Therefore, I went onto Asmanex, also swallowed, and no longer have any itching!
There is no cure for EoE or MCAS currently. These traditional drugs are to assist with symptoms, and prevent further damage to the gut. I wanted to find a cure, which is why I became a patient of Dr. Li’s in 2015. (Find out more about my Healing Through Traditional Chinese Medicine here.) For patients who live in and around the New York City area, Dr. Li will provide acupuncture treatments to assist their body in healing during regularly scheduled appointments.
Since I live in Colorado, I have monthly or bi-monthly Zoom chats with Dr. Li to check in with her about my progress and to order more herbs. I needed to find a local practitioner who was willing to provide me acupuncture without over-stimulating my body. Dr. Li’s biggest concern was that my body could overreact to acupuncture, and I needed to ensure that any doctor I saw would understand the level of stimulation that I could withstand that would be helpful and not hurtful.
I’m happy to report that I have found a wonderful doctor here, Dr. Debbie Hsaio Ki Ting in Colorado Springs, who received her degree from Samra University of Oriental Medicine in Los Angeles, CA and the Beijing Academy of Traditional Chinese Medicine in China. Dr. Debbie was happy to communicate with Dr. Li if that was necessary, but Dr. Li said that she trusted her to understand what my body needed.
When I first met with Dr. Debbie, I went into a long explanation of my various diagnoses to ensure that she understood everything I thought she needed to know about me. I have to laugh now because her response to all of that information was similar to Dr. Li’s – Traditional Chinese Medicine isn’t concerned with “Western medicine” diagnoses. They view the body in an entirely different way: energy balance and restoring the flow of Qi (chi). Dr. Debbie’s conclusion was that I have a lot of inflammation in my body, and she would be able to mitigate that inflammation through acupuncture.
Dr. Debbie has found the perfect balance of stimulation without overdoing it. The first few sessions were a little too much for me, and I found myself with severe stomach aches a few days after the treatment. I shared this information with her, and she backed off by using fewer needles until I could tolerate more needles. And I began to feel MUCH better after having acupuncture. I noticed especially that my intestines calmed down tremendously. That was especially nice since the fall flare of pollen was beginning to ramp up, and I continued to feel better and better!
My gut is much calmer and not so reactive, and the only thing that has changed is that I’ve added acupuncture into my healing regimen. I continue to take all of the herbs and apply the creams that Dr. Li has prescribed for me in addition to having acupuncture every other week from Dr. Debbie. I continue on the road of healing, and not just symptom relief, but true healing! I’m very hopeful to soon be able to increase the number of foods that I eat from my paltry four. It has been a long road of recovery for my gut, but I was very sick when I began TCM.
A recently published article by Dr. Lawrence Afrin, the author of Never Bet Against Occum: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, and two other mast cell doctors, have found a consistency of symptoms of Mast Cell Activation Syndrome (MCAS) and those of “long-haul COVID-19”. They also postulate that those patients with severe COVID-19 symptoms of hyperinflammatory cytokine storms may in fact have undiagnosed MCAS, a chronic multisystem inflammatory disease.
If you are not familiar with the illness of Mast Cell Activation Syndrome, it is a beast of an illness to live with and to diagnose, mainly because the symptoms can look like so many other illnesses. (I have written a series of informational articles about MCAS here. )
For some people, the symptoms of MCAS aren’t enough to actually seek medical care. They may have an occasional stomach ache, or rash, and have never needed to become a detective to determine why they were able to eat blueberries, for example, last month and this month their stomach hurt horribly after eating them. Or the few hives that they get in the autumn season aren’t enough to bother them. Yet underlying these symptoms and others, the body’s mast cells are overreactive, while the person will declare themselves perfectly healthy. Then, when the body begins to fight off a virus such as COVID-19, the body overcompensates its response to the viral load and releases thousands of chemicals (cue the cytokine storm) that end up doing more damage to the body than the virus itself.
Recent statistics regarding COVID-19 suggest that only 15-20% of patients will experience a severe form of the illness. It is interesting to note that previous research on the prevalence of MCAS in the developed world is 17%, with the abundance of individuals unaware that the symptoms they are experiencing are in fact from mast cells acting abnormally.
Any virus would call forth a response by mast cells in order to heal the body. The problem with MCAS individuals who remain undiagnosed and therefore untreated, is that their mast cells are dysfunctional and react inappropriately to COVID-19 causing thousands of chemicals to be released into the body.
Fatal cases of COVID-19 are frequently caused by cardiovascular conditions, and heart damage has been one of the frequently cited long-term affects of the illness. Mast cells play a significant role in cardiovascular complications seen with COVID-19 such as pulmonary embolisms. Additionally, mast cells patients frequently cite “brain fog” as one of their symptoms, a common complaint of long-haulers with COVID-19.
Fatigue is a classic symptom of MCAS, frequently made worse by insomnia. Once again, these are common complaints of individuals who are still experiencing symptoms months after being diagnosed with COVID-19. In the research report, the doctors provide a table of symptoms by organ/system comparing MCAS with COVID-19 patients. The similarities are striking.
For individuals in the midst of the virus, doctors are finding that medications used to mitigate the symptoms of MCAS, inhibiting mast cell activation, are also helping COVID-19 patients: cromolyn; leukotriene inhibitors, dexamethasone, low-dose naltrexone, quercetin, and H1 and H2 blockers (antihistamines such as Zyrtec and Pepcid). These drugs might mitigate the severity of the illness, helping patients to not progress to the severest form of the disease.
An interesting note in the article concerned MCAS patients who had been previously diagnosed and were being treated for their mast cell activation. When these patients tested positive for a COVID-19 infection, all fared well enough that the doctors stated that “none have required mechanical ventilation, let alone died”. Their conclusion was that the patients had their mast cells at least partially controlled so that they did not suffer the most severe courses of the disease, but that they were still at increased risk for suffering from the post-COVID-19 illness.
For those of us with a diagnosis of MCAS, the volume of research that is currently occurring on COVID-19 will undoubtedly help us to have more understanding of our illness. And hopefully, a cure!
I don’t know about you, but some days I definitely am suffering from Covid-19 fatigue. When we were under “Safe at Home” orders in Colorado back in March, and for the subsequent 6 weeks, each day felt like an eternity! I couldn’t keep track of what day it was because every day felt like it lasted a week, and I just kept hoping for some good news and an ability to go back to “normal.” Normal was being able to find the foods I needed to purchase without having to visit five grocery stores! Normal was being able to go out to the movies, go to the gym, and get together with my Qigong practice group in person. I’ve come to the conclusion that whatever we get back to won’t be like the previous normal but maybe we can get to a new normal. The Covid-19 pandemic has become a dividing line of a life before and after.
This is similar to how I felt when our son, Morgan, was diagnosed with life threatening peanut allergies. There was life before peanut allergies, when we could eat anywhere and eat anything. And then there was life after, when every bite had to be monitored and every label read. It was a demarcating line in our lives. Adding each new food allergy diagnosis didn’t make as much of an impact on our daily lives as that first allergy.
This kind of understanding helped our family to roll along with the pandemic a little easier in some ways, and we had a little bit of rough roads in other ways. We aren’t yet to the after the pandemic. It’s the during stage that we’re currently experiencing. And who knows how long this stage is going to last. We’ve learned some lessons that I want to share with you, and maybe you’ll have a few lessons you can also share with me!
Lesson #1: Have safe foods on hand always!
My husband, Robert, and I tried to get N95 masks in local stores and on the internet in February 2020 to no avail. Everywhere we checked was sold out. We finally found a few masks through Ebay, but this sparked my husband to suggest that I’d better get a stockpile of my safe foods, since it was clear to him that people were fearful and that makes for interesting buying choices!
With my diagnoses for Mast Cell Activation Syndrome (MCAS) and Eosinophilic Esophagitis (EoE), I am currently eating just four foods (all organic) – chicken breast, turkey breast, broccoli, and frozen Cascadian Farms hash browns (for some reason I can tolerate these but not fresh russet potatoes). I’m so grateful that Robert suggested that I get more of my foods on hand before others began to hoard food products. I was able to purchase a month’s worth of these groceries for myself, which allowed me to continue to eat when limits on the numbers of chicken packages, for example, were placed in most grocery stores in our area. Since February, I have kept a constant supply of one month’s worth of groceries in the freezer. I rotate the foods each week as I purchase new items. I will continue to keep this stockpile of safe foods for as long as the pandemic continues, just in case there is more hoarding or limitations on purchases in the future.
Lesson #2: Befriend your grocery clerks when you have special food needs!
For the last several years, I have been purchasing the frozen hash browns at my local Natural Grocers. I became good friends with the purchasing manager and the receiving manager since I had a standing special order of 2 cases that they ordered for me weekly. By late March, their corporate headquarters was no longer allowing special orders, which was very disappointing.
Despite my explanation to the store manager, and my years of purchases, he was unable to guarantee that I’d be able to purchase 2 cases at a time and unable to even know if they would be receiving hash browns on a weekly basis anymore. However, the receiving manager was willing to put aside every and any case of hash browns that were received and hold them for me, unbeknownst to his manager. Having a good relationship with him, and explaining my medical condition, allowed him to better understand what I was managing.
At one point, I called in to the store to see if the receiving manager had any potatoes set aside, and when he said yes, I told him I was so thrilled that I’d ask him to marry me if I wasn’t already married! He said, “I’m married too, but you can still ask me!” And I did! We laughed and laughed at the absurdity of the situation, and it took months for him to regularly received these potatoes again, forcing me to scour stores from Colorado Springs to Denver to try to purchase as many frozen hash browns as the store clerks would allow me to purchase.
Lesson #3: In a pandemic, don’t expect special treatment!
Many times I would head to a grocery store register only to have a checkout clerk tell me that I wasn’t allowed to purchase so many packages of the same product. Despite having a letter from my allergist explaining the few items that I can eat, and his request to please allow me to purchase what I needed for one week, the clerks and even store managers , would say no.
One time, I received a special order for the turkey breast that I had purchased for years at a local King Soopers, again on special order. I would generally pick up 12 packages at a time every two weeks. Again, I had two meat department employees who were so good to me, and we had become friends. They knew what I was experiencing trying to get my safe food, and would continue to make special order requests for me. Yet, when I got to the front of the store to pay, the self-checkout clerk began screaming, “You can’t buy that much meat. Don’t you know there’s a pandemic going on?” Again, no amount of explanation or doctor’s letter was going to cease her yelling. So, I purchased the two small packages that she would allow me to purchase, and went home.
When I told my husband what happened, he was incensed and went back to the store. He spoke with the meat department manager who said to take the other 10 packages to the front of the store to purchase them, and tell the clerk that if they had a problem to contact him. Wouldn’t you know that he had no trouble purchasing all the meat without any issues!
Lesson #4: Be willing to break some rules!
I can’t count the number of times that I left the grocery store to go to the parking lot with my allotted amount of chicken or frozen hash browns and put them in the car, only to change my jacket and mask and head back inside the store to purchase more of the same items up to the limit allowed.
Many times I’d go to my regular stores and find no supply. I’d end up driving to numerous stores around the city just to get enough food to refill my stash for the week, if I could even find the items. I wasn’t willing to eat down all of the food I had in the freezer for fear that the distribution issues could continue long after my supply ran out. Those “safe at home” orders suggesting that we only grocery shop once a week weren’t going to work for me.
I generally am a rule follower, and I understand not purchasing massive quantities of toilet paper, for example, so that everyone can have their fair share. However, when you’re talking about being able to eat at all, there were some rules that were going to be broken in order for me to stay alive!
Lesson #5: Be willing to ask for help finding your special foods
There were a few weeks where I couldn’t find my potatoes anywhere in Colorado Springs. I asked my daughter, Michaela, who at the time lived in Lakewood, a suburb of Denver, to check around for me. She graciously searched and found a case worth, but then had to take the packages to our son, Morgan’s apartment since her freezer wasn’t large enough to accommodate this grand prize!
Michaela also has a diagnosis of MCAS and eats only organic fruits and vegetables. She was having difficulty finding foods at one time in Lakewood, so we found some safe foods in Colorado Springs and made a rendezvous midway to exchange foods.
I also had wonderful neighbors who were willing to pick up 2 packages of organic chicken for me when they went to the grocery store if they found any. People who don’t have such strict diets are free to eat a variety of items, and were so helpful in offering to make purchases to keep me fed.
At this point, I’m flush with all of my foods and haven’t had any difficulty recently being able to purchase everything that I need.
I continue to express gratitude every time I’m able to easily find the foods that I eat, and I’m especially appreciative to no longer have to be sneaky in order to keep myself fed!
My son, Morgan, and his boyfriend, Quinn, returned from their vacation in London on Monday, March 16. If you haven’t read about that challenging return to the US, you can read about it here.
Both young men went home to self-quarantine after their return. During the trip, for a few days Quinn had been experiencing symptoms of fatigue, muscle aches, and a very low-grade fever, then he’d feel better. Since there was no way to get a COVID-19 test in England or Scotland during their trip, he just continued to enjoy the trip.
Morgan lives alone in an apartment in Westminster, a suburb of Denver, CO, while Quinn lives alone in Arvada, another suburb. Morgan felt sure that they had been exposed to the COVID-19 virus during their travels since they had been in planes, trains, automobiles and the Tube in London! They did their best to wash their hands and use the hand sanitizers available in many locations, however the nature of travel ends up with frequently being in crowds.
Morgan’s boss at the Longmont Economic Development Partnership had a baby while he was in London, and he returned to work early Tuesday morning handling not only his workload but hers also. His days were very long that first week back at work with numerous online meetings on the impact of the coronavirus on the local economy.
On Tuesday, March 24, he awoke with body aches, especially in his legs. At first he thought it could be from the yoga he did the previous day. Then, when he spoke with Quinn, he discovered that Quinn had been experiencing not only a stuffy nose but also a sensation of not being able to taste his food, which come to find out is apparently a strange symptom that many people with COVID-19 are experiencing. At that point, they were both convinced that they had the virus.
Day 2 of the virus, Wednesday, brought more of a tight chest for Morgan. He had been taking his inhaled steroid, Qvar, once per day but decided that he needed to check in with his primary care doctor to see what his next step should be and how to obtain COVID-19 testing. UC (University of Colorado) Health is a large network of hospitals and doctors in Colorado. They are providing telemedicine information and appointments for anyone with symptoms of the virus, in order to keep patients at home. Morgan called in to see where he could be tested for the virus and what he should do about the tight chest since he is diagnosed with mild asthma. He was told that there was no testing available in Denver unless he was hospitalized. As for the tight chest, the nurse with whom he spoke suggested that he increase his Qvar to twice a day. She also discussed what he should do if his breathing got more labored or he experienced wheezing, which was for him to call in for a telemedicine appointment with a doctor, who would likely prescribe Albuterol for his nebulizer. He was still working from home during all of this, trying to balance his need to rest with the workload.
As for Quinn, he didn’t have any new symptoms. He has no underlying health conditions, having outgrown asthma during puberty. He never has any issues with breathing troubles with a cold or illness. His strangest symptom was not being able to really taste his food. He was able to continue working from home all week without any fatigue or other symptoms.
Day 3 brought on a fever for Morgan who awoke with a general malaise, and a cough. When we spoke with him that evening, he sounded thoroughly exhausted. He had called back in to UC Health, in the middle of managing meetings for work, to request another telemedicine appointment for the next day, Friday. My husband and I hung up the phone quite concerned that the virus was really affecting him, and still clinging to the hope that he’d be able to stay in the “moderate” area of the illness. I posted on Facebook about both Morgan and Quinn having the illness and was pleasantly overwhelmed by the loving response of so many friends and family members concerned and sending prayers.
Day 4, March 27, was a lovely surprise to find Morgan feeling better. (My husband and I have a routine going where we talk with him every morning and evening!) He had decided to take the entire day off from work to rest, which in Mama Bear’s mind was a very good decision! He refrained from taking Tylenol the previous night, which he says upsets his stomach, and allowed his fever to spike through the night. He was up at 3 am taking a shower from sweating so much. But all that sweating helped him to feel much better on Friday morning. His cough was more productive sounding, and his energy was certainly better. I’m convinced all the positive energy coming from everyone also helped! His conversation with the doctor later in the day via telemedicine did not yield a prescription for Albuterol for the nebulizer. Instead, she suggested using a spacer and upping the Albuterol to 2 puffs, every 4 hours as a first step. It appears that doctors are trying to take small steps in fighting this illness to still have more available actions to tackle a worsening condition. We breathed a sigh of relief that his body was fighting off the virus, and by the evening he was feeling about the same, which we took as a good sign.
Day 5 is today, and his condition appears to have stabilized. He continues to say that he feels about the same. He is planning on resting all day today and tomorrow since it’s the weekend. Morgan hasn’t had to use the Albuterol inhaler at maximum dose because he has gotten relief from using it just a few times daily. The chest tightness has dissipated, and his cough didn’t even keep him up at night. He still has a slight fever that comes and goes. By the evening, however his cough was to the point where Morgan was having trouble talking without being interrupted with a coughing fit. We could hear him wheezing, which was really scary. He had been sitting in the bathroom of his apartment creating a steam bath for himself with hot water from the shower. He was also taking the Albuterol more frequently that day. We got off the phone that evening really concerned. In the middle of the night, I found myself awake wondering how EMTs would be able to get into Morgan’s apartment building since it is locked with no door person in attendance. I was in a very fearful place emotionally, and barely slept all night.
When we spoke to Morgan the next morning, Day 6, we decided to do so on FaceTime so we could see what he looked like. The telephone doesn’t provide as much information, we discovered, as being able to look into his eyes and to see how he was feeling. And thankfully he seemed to have turned a corner for the better. It was frightening how quickly the illness could turn from being stable to being really sick. And from what I read online, people who end up hospitalized for the illness, have on average been at Day 7. With that in mind, we continued to call him every morning and evening on FaceTime to check in over the next several days.
Morgan had several friends offer to get him food, however he only felt comfortable asking his sister, Michaela, to do so because she understands how to read a label for his food allergies (which are peanuts, tree nuts, sesame, fish and shellfish). She was able to get him groceries, dropped them off at the front door of the building while he gloved and masked up and picked them up.
Each day has brought him a little bit more energy, as he started back to work for a few hours building up to working all day by Thursday, April 2, Day 10. As of today, Day 11, he still has a cough, but the fatigue is finally gone. He’s also staying inside his apartment until he is completely free of all symptoms. One of the doctors he spoke to said that he should be free of symptoms for 72 hours before going out in public, and that he should be isolated for 14 days after the symptoms start. At this point, he still has several days to go to reach that milestone.
This weekend, we plan on having a virtual family dinner since we can’t get together in person! My husband’s birthday occurred while Morgan was in London, so we’d like to celebrate that. And we are certainly celebrating Morgan and Quinn both recovering from this illness!
As of now, I would say that Morgan experienced the “moderate” symptoms of the illness, while Quinn has enjoyed a “mild” illness. From what I’ve read, the mild or moderate illness will likely last 2-3 weeks, which doesn’t sound mild to me! And honestly, without either of them having access to a COVID-19 test, we are just assuming that they have that virus and not another influenza or cold-type virus. This is a very small sample size, but there does appear to be a difference in Morgan’s symptoms of chest tightness and coughing than what Quinn has experienced. Maybe that’s the difference in having asthma, since Morgan is prone to having asthma exacerbations with any type of upper respiratory illness.
I am so appreciative for all your wonderful energy in the form of thoughts and prayers for Morgan and Quinn! Stay home and stay healthy!!
If you read this blog frequently, you know that my son has had a planned trip to London since last year. I wrote about this in my last blog post here.
After many discussions, research and the existing environment on March 7th, Morgan and Quinn decided to go ahead with their trip carrying hand wipes and masks along with two backpacks of clothes and traveling “stuff”, and flew to London on Icelandair.
Morgan has flown on this airline several times overseas, and very much appreciates that they do not serve peanuts. This time, he and Quinn had no seatmates because of so many people altering their travel plans. They flew through Reykjavik and got on another flight into London without any problems, and started sight seeing immediately.
They continued sightseeing around London and enjoyed each day, visiting a Botanical garden, a cheese factory and walking the city. Then, on Wednesday evening in the USA, President Trump instituted a travel ban from European countries to be effective 48 hours later, on Friday, March 13 at midnight.
My husband and I almost fell off the couch when we read this notification! We knew that Morgan’s flight home from London went back through Reykjavik, and wondered what that was going to mean for him. We quickly messaged Morgan, knowing that he was likely asleep, and asked for a quick chat in about 6 hours when he would be awake Thursday morning. We got up at 3am to discuss options with him.
By then, it had been announced that US citizens weren’t included in the travel ban, which helped our anxiety calm down a little. Both Quinn and Morgan had been receiving multiple text messages from friends and other family members warning them about this travel ban. Quinn had been trying to get through to Icelandair since they had awakened, however all the phone lines were busy. At this point in England, there weren’t any travel bans; nothing had been closed; and there were less than 500 cases of the virus in the UK as a whole. So, Morgan and Quinn couldn’t quite understand why we were so nervous.
Meanwhile in the US, grocery stores were experiencing people purchasing food and toilet paper as if Armageddon was forthcoming. K-12 schools and school districts and colleges were shutting down, and/or going to online classes. Workforces were being told to telecommute. Every hour there was some new information to digest and to adjust to. We tried to explain all of this to them, and that we’ve never been at this place before with a pandemic affecting not just the US but the world. Given that they are grown men, and paid for the trip themselves, we didn’t feel it was appropriate to pull a “parent directive” to get home now! We believe in supporting our now grown children, and loving them through their choices and decisions. We agreed to talk later in the day before they went to bed Thursday evening.
About 12 hours went by and we spoke again. They still hadn’t been able to reach Icelandair. We began to talk about what other airlines could get them home to Denver if they never were able to reach the airline. What was a safe airline for peanut allergies? Who flies the route directly from London to Denver? We knew we didn’t want them going through a European country if they were traveling after Saturday at midnight ET because of the port of entry issues. Denver’s International Airport was not one of the airports receiving passengers from Europe, and ending up in another US city where they would need to find another flight home to Denver was just too much to contemplate with additional fees, food allergies to manage and potential overnight accommodations needed. They had looked into other airlines’ flight schedules, but many of the seats had been booked at exorbitant prices, and they really wanted to reach Icelandair before paying for another flight. We agreed that they would go to Heathrow airport Friday morning to see if they could get information directly from the Icelandair ticketing agents.
On our Friday morning, which was already after lunch London time, we texted with them. Morgan said the ticket agents were of no help. They had been given no information to pass on to customers, and had no idea if their original return flight going through Reykjavik would be able to land in Denver on Tuesday, March 17. Then as we were texting, Quinn was finally able to get through on the phone to Icelandair. Their flight had not been cancelled even though most other flights flying on March 14-16 had been. This sounded suspicious to my husband and me. How would they have a flight of all Americans and be able to fly directly to Denver? We were ready for them to give up on Icelandair, book a flight with another airline, and get out of London that day! We decided to continue to ask more questions. What happens if the UK is included in the travel ban in the near future? Do you have a backup plan? What happens if you end up in New York or Chicago? We knew that was going to cost money for them to then find a way home to Denver, and to find a safe, food allergy accommodating airline to do so. In the end, they decided to leave Heathrow and keep their reservation on Icelandair to fly home on March 17.
We were really concerned at this point, especially when they said that they were going to continue their trip schedule and travel to Scotland via train, a 4 hour ride, on Saturday morning, March 14 and spend the weekend there. They planned on returning to London on Monday to spend one night in the city before boarding the plane to come home. My husband and I were taking this one day at a time, and that day sure felt like about 48 hours in length. There was so much going on in the news, and our reality was so different from our son’s and Quinn’s.
Then, on Saturday, March 14, President Trump extended the travel ban to the UK and Ireland. My husband has a way of seeing some things that are coming, and he had a feeling this was going to occur. We just didn’t expect it so soon. The travel ban would go into effect on Monday, March 16 at midnight.
We texted with Morgan, who had already seen this information on the BBC. He said, “We will be continuing as planned but know potential changes are in store. Icelandair is posting a full flight list at least a day in advance so we will know, and they will keep us updated. More excitement to come! But we are having a blast in Scotland.” My husband and I are really worried. Their Tuesday flight is after the UK ban goes into effect, and we know they will be landing in a city other than Denver. And likely their flight is going to be cancelled altogether, because you can’t just change the destination city on a whim when flying an airplane.
There have been numerous times in our children’s lives when we have had to let go, and let them “do their life” even when we don’t agree with their decisions. This was one of those times. We were really concerned how Morgan was going to manage his food allergies, how the coronavirus screening was going to be managed, what airport he was going to be sent to, and what the cost was going to be for him to get himself home to Denver.
And then we awoke Sunday morning, March 15, to this message:
My husband and I were jumping up and down in tears, we were so happy! After seeing this message, we saw the pictures online of the enormous lines at the various US airports who were receiving the European flights after the European travel ban had gone into effect. Hundreds of people all crowded together in these long, snaking lines to have their temperature checked. We knew it would be a hassle to be sent to one of these 13 airports upon arrival in the US, but we had no idea it would also put all of these passengers at risk for the virus with a complete lack of social distancing. We were so glad that Morgan and Quinn wouldn’t be subject to that.
The British Airways flight was full when it took off from London 45 minutes late. Mama bear checked the online status to know when to expect his arrival in Denver. We were not going to meet him at the airport since we live 90 minutes away, and with the social distancing requirements that had been decreed in Colorado, we decided to follow the rules and await his text message.
As you can see, my husband and I were more than a little excited to have him back in Denver! In Colorado on Monday, March 16th, all restaurants were closed except for takeout and delivery. Most employers had gone to telecommuting workforces, and the Governor has asked for no meetings of people in excess of 10 persons in addition to shutting down all gyms and movie theaters. Morgan is working from home, and will be self-quarantining for the next week or two since he has been traveling abroad, but currently has no symptoms of the virus.
It was quite an experience to watch our world change so drastically within a week, and to have our son across the world in the middle of a pandemic. I’m very grateful to have him back in Denver!
I’m sure that Morgan will be providing a blog post about his travels and all that he has learned from this BIG adventure. Stay tuned for that in the near future!
The news of the Coronavirus (COVID-19) has begun to get my attention these past few days.
In general, I am not overly worried about the virus and its impact on my son with his well-managed asthma; however, he has been planning to go to London on vacation in less than two weeks. It’s a wonderful opportunity for him to share the city that he loves with his boyfriend, Quinn.
My son, Morgan, is now 24 years old, has mild asthma and multiple food allergies to peanuts, tree nuts, sesame, fish and shellfish. With the US Centers for Disease Control and Prevention official today stating that “It’s not so much a question of if this (coronavirus) will happen any more, but rather more a question of when this will happen and how many people in this country will become infected and how many of those will develop severe or more complicated disease,” I realized that it’s time to have a conversation with Morgan.
Morgan and Quinn have plans to go to Britain for 10 days in March, and everything is planned, paid for and reserved. Waiting for the day to leave was the only thing left do do until this Coronavirus outbreak occurred. Now there are a few more things to prepare for just in case there is an outbreak of the virus in Britain while he is in the country.
Since Morgan is a young man now, Mama Bear here can no longer dictate his life…and truthfully, I never really had that power even when he was young! I thought it would be beneficial for the two of us to have a conversation about the virus, and so I asked him “What have you thought about the Coronavirus and your plans for going to London?”
I must say that I was impressed that he said that he and Quinn have been having conversations about how to stay healthy with hand washing, bringing wipes, and probably wearing a mask especially in the Tube in London where they will be near so many people. Morgan said, “I am nervous to travel. I don’t want to be stupid.” The two are closely monitoring any travel bans, and keeping up with the WHO recommendations and with the BBC for news on the virus in Britain. He recognizes that just like with influenza, his asthma is a health condition that can be exacerbated with the virus and is a cause for concern.
But, it’s now his decision as to whether or not he wants to reschedule his vacation. There are no travel warnings as of this writing for Americans going to Britain, and both of our countries have individuals who have been diagnosed with the virus. Thankfully both countries also have very good medical systems, which from what I have read, has helped those patients who do have a more severe form of the virus requiring hospitalization. And good medical care also keeps the virus from spreading to other individuals.
I have two N95 respirator masks to give to him for their trip. Two days ago, I tried to purchase more of these types of masks, which are rated the best for keeping out small particles including virus germs, and there aren’t any available in my local stores. Every Home Depot, Ace Hardware and Lowe’s is sold out already! I managed to find the masks online only through an individual seller on Ebay and purchased several more for the entire family at a reasonable price. Sadly, many sellers on Amazon.com have increased their prices to double or triple the regular price of a mask, if you can find any in stock.
Morgan has been taking Qvar daily, and has a prescription also to Albuterol. I suggested that he contact his allergist to find out if the doctor has any other suggestions for him especially if he ends up getting the virus here or abroad.
Another item we talked about was what he should do if he were to be quarantined in Britain. These quarantines have begun to hit various cities in numerous countries when an individual gets sick with the virus. People have been quarantined in China, but also in various other countries, and have lasted anywhere from 14 days to a month. With food allergies, not having access to safe foods is a serious issue, and one that requires some forethought as to how that situation would be negotiated in a hotel, for example. Morgan is putting together an action plan on how to manage such a plight. He and Quinn will be staying in an Airbnb for part of their stay and in a hotel for the remainder. It would be a real mess if they spent their vacation locked in a hotel room!
Morgan is going to check into the National Health Service (NHS) to see how an American can access these services should he need to. From his recollection with studying abroad at the University of Lancaster in Britain three years ago, it was fairly easy and inexpensive, unlike the US healthcare system!
There are a few pieces of good news in all of this. First, thankfully the mortality rate is fairly low for this virus versus previous coronaviruses like SARS or MERS. No one enjoys getting sick, but most people are surviving this virus. And secondly, Morgan has another 10 days to gather more information and to watch the spread of the virus to determine whether he will be heading to London or rescheduling his trip!
Twenty years ago this month, I started AllergicChild.com. The Internet was still barely beyond the idea stage, and there were VERY few websites pertaining to food allergies.
I had just written my book, “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies,” which my husband and I had self-published. It was the first edition of the book, and several newspapers across the US and Canada had run an article about the book giving out our office telephone number as a way to buy it. I was getting phone calls from numerous families managing their child’s peanut allergies wanting to make a purchase. Hence the need for a website to reach across the world, and to help with lowering the number of phone calls!
The website opened up a lot of communication with families trying to figure out how to send their child to school safely; how to go to worship services and how to explain food allergies to extended family members. I literally received hundreds of emails every week asking me every question you can imagine about how to manage their child’s food allergies.
I answered every email I received. I knew that I had one of the few websites on the Internet that had information about food allergies, and people were always so thrilled to be able to reach a real person who would answer their questions. And many times, I had questions for them as to how they were managing issues that we had yet solved. It was a healthy exchange of ideas.
The website soon included pages detailing our experience of sending our son to preschool. He turned 4 years old the end of January in the year 2000, and we had several months worth of preschool stories to share. I continued to add pages to the website with other experiences as we tried to navigate life safely.
In December of 2005 I began to send out a monthly newsletter. Blogs had yet come into being, and this was the best way to share food allergy news with our followers. My son was almost 10 years old by that time, and he had his own column in the newsletter called “Morgan’s Corner” where he answered questions. Readers would send in inquiries about how Morgan dealt with the emotional aspects of food allergies, such as bullying or being left out of activities. The American with Disabilities Act had yet to be amended to include eating as a major life activity, and sadly schools were not as aware of accommodations to keep children with food allergies involved in all of a classroom’s curriculum.
We had a lot of information on our website about how to read a label to ensure your child was safely avoiding their allergen since labels had no laws governing what had to be listed. In January of 2006, the Food Allergen Labeling and Consumer Protection Act (FALCPA) became effective. This changed our family’s ability to be able to read an ingredient label and know what was in the food. Labels still had a long way to go to become as reliable as they are today, but it was a great starting point!
The ADA Amendments Act of 2008 became effective January 1, 2009. Morgan had been attending a school that was very aware of 504 Plans and had already placed him on one at the start of kindergarten in the fall of 2001. This Act helped many other students across the US have access to accommodations where school districts weren’t as educated about food allergies.
Facebook seemed like a good place for us to extend our reach, and in 2009 we started our AllergicChild group on the platform. It has grown organically up to over 13,000 followers today.
In 2011, we started the blog that I continue to this day. Morgan has added many of his own experiences to the blog including middle and high school trips, preparing and going to college, studying abroad in college, and being in the work world. Raising a good self-advocate was my primary purpose as Mom, and that took all of his 18 years of living at home!
We added a category of Eosinophils & Mast Cells to the blog in 2013 after both my daughter and I got diagnoses. We found there is a big overlap in families who have food allergies, to manage these issues and even celiac disease too. And we continue to share our experience and our hope for a cure.
Thank you for coming along for the ride these past 20 years! We couldn’t have done it without your support, emails and readership. Hopefully we’ll have a cure for food allergies so we won’t need to be here in another 20!!
As this year’s Thanksgiving day approaches, our family will once again be planning multiple safe meals for the day, cooking all of them at the same time so we can eat together!
We’ve spent Thanksgiving Days in the past trying to get extended family to bring or prepare safe foods, and sometimes that worked and other times it didn’t. It ended up being a very stressful day for me ensuring that our son didn’t touch anything or eat anything that he is allergic to.
Many times, we found what worked best was to host the meal at our house, where at least we knew that there would be no smoking and no pets, both of which he also reacted to. Yet, I felt like a police officer at the door asking what was in the food that everyone had prepared. Not exactly a way to endear oneself to the extended family!
My son, Morgan, has five life threatening food allergies to manage: peanuts, tree nuts, sesame, fish and shellfish. And while those aren’t generally on a Thanksgiving Day menu, we still had to read through ingredient labels, be concerned about spatulas and cross contact in the kitchen and try to manage the menu to stay away from pecan pie!
Now, Morgan’s limited diet is nothing compared to the rest of the family! The perspective has changed with new diagnoses for myself and for my daughter. His boyfriend, Quinn, luckily doesn’t have any food allergies, and is very aware of not eating anything that Morgan is allergic to. The two of them are going to be bringing a dessert that both of them can eat, since no one else in the family eats dessert currently!
With an EoE (Eosinophilic Esophagitis) and an MCAS (Mast Cell Activation Syndrome) diagnosis, my food options are currently limited to four foods. Turkey breast is one of those, however it has been suggested to me by Dr. Li, my Traditional Chinese Medicine doctor, to cook all of my meat in an Instant Pot. So, I will be purchasing an organic turkey breast to cook just for myself! In addition, I will be having my usual organic russet potato and organic broccoli. It’s difficult when it’s the holidays to stay with eating the foods that I know are safe for me. I’d love to be able to eat just a bite of something new and different, however I have paid the price for doing so many times, creating mast cell activation and a stomach ache that continues for days. This year, I will be enjoying my meal with the people I love, and that makes up for a lack of variety!
My daughter, Michaela, also has an MCAS diagnosis. She currently eats only organic fruits and vegetables. She and the men of the family will be having organic sweet potato and mashed organic cauliflower. Along with me she will also be eating organic broccoli. Then, she may also be adding colorful organic carrots.
My husband has begun eating only organic foods, and he rarely eats anything other than meats, fruits or vegetables. He will roast the whole organic turkey in the oven without any stuffing since no one will be eating it!
We’ve gotten really good at utilizing all 4 burners on the stove to make all of this food, serving it up all at once. That’s no easy feat for a regular meal. For a Thanksgiving meal, it’s the one time of year that we make sure to all eat together even if we are eating many different things!
Have a wonderful Thanksgiving with family and friends! And remember that it’s not just about the food.
Many MCAS patients have difficulties with scents and odors. The Mastocytosis Society lists these items along with many other triggers on their website.
My daughter, Michaela, has been experiencing mast cell degranulation upon exposure to certain chemicals, and not just the scent or odor. Most recently it has been to chlorine in a swimming pool. It’s also been to an exposure of carbon monoxide, and to the off gassing from new floors and paint in a house.
The result of all of these exposures has been the sensation of a reaction followed by gut pain. She has taken Benadryl to mitigate the symptoms, and has never had to use an epinephrine autoinjector since the reaction hasn’t been that severe. Within a day of the exposure, she gets a terrible cold virus. Each time she has used her detective skills to determine what caused her symptoms, and came back to these chemicals.
Her recent reaction to chlorine is disappointing because she loves to swim. She swam every day during the summer when she was a child, and never had any issues. However, in the last year, both times when she went swimming, she has ended up with swollen nasal passages and a sore throat within hours after swimming, along with a painful stomach. She takes Benadryl, which helps the inflammation and then the next day she comes down with a cold virus. She is hoping to find a pool in the Denver area, where she currently lives, that uses minimal or no chlorine, but has yet to find one!
The carbon monoxide exposure was the weirdest because there is no smell. After touring a newly constructed hotel in Denver, she was feeling nauseated and having trouble breathing without coughing. She couldn’t figure out what was going on, and the symptoms quickly ceased. Two days later, she awoke and felt the familiar symptoms of a mast cell reaction along with the breathing difficulty and dizziness. She immediately went to the emergency room where the doctors said she exhibited all the signs of carbon monoxide poisoning and that the hotel that she toured was in the news after having a carbon monoxide leak. They put her on oxygen for several hours and then released her. Because her lungs had been compromised two years previously during aspiration pneumonia, she has to be very careful about exposures to breathing in chemicals.
Michaela also experienced a strange reaction two summers ago. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our Network Spinal Analysis chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone and new paint applied to the interior walls! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.
Mast Cell Activation can be a serious issue, and one that she has learned to manage on a daily basis by asking questions and being very aware of her environment to mitigate exposure as much as possible.
In the fall of 2016, our son, Morgan, flew through Reykjavik,
Iceland, on his way to study abroad. He was in the country for only 36 hours,
so didn’t get a chance to see much of anything beyond the city. He promised
himself that he would get back to Iceland to see all of its natural beauty
sometime in the future.
The future is now! For two weeks in August, he and my
husband, Robert, are going to share a trip of a lifetime backpacking in
Iceland! The preparation for this trip has taken almost 9 months to put
together, and the food is almost the least of it.
Iceland is part of the European Union, so it wasn’t necessary to fly to an embassy here in the USA to obtain a Visa. Both already have passports, so that box was checked easily.
Both also carry medications, and Iceland has strict requirements of medications being in the original prescription box and the medication must not expired. This has required some work on Morgan’s part.
Morgan is now in the work world, and has his own medical insurance. He needed to find an allergist in the Denver area, where he now lives, to obtain current prescriptions for Albuterol, a steroid inhaler and his Auvi-Q’s. This was a big step because he has only seen one allergist his entire life, and she retired just as he was graduating from college. He wanted to find the same wonderful care he had received from her, and as luck would have it, he found an allergist that had trained with her many years ago! His enormous history in three medical files was copied and sent to this new allergist. Morgan forewarned the doctor that there was 20+ years of appointments, skin prick tests and reactions to pore over. All went well with the new patient appointment, and as a Mom, I’m thrilled Morgan has found a very capable allergist to continue his care!
Since Morgan flew Icelandair previously, and had no difficulties at all, they decided to fly the same airline. Morgan always brings his own food on airplanes, and doesn’t expect to be served a safe meal. They don’t serve peanuts on flights, which is great!
The next step was to figure out what the father/son duo were going to pack to bring with them on the airplane. Robert and Morgan have an annual week long camping trip each summer in the Lake City area of the Colorado Rocky Mountains. It is a trip they both look forward to every year. They have all the gear (and then some!) that they would need to camp in the Rockies. However, Iceland is a little different in that they don’t allow campfires. So, they will be renting a camping stove in Iceland, along with tables and chairs. And they will bring jet boils for water heating.
Everything in Iceland is expensive – food, camping equipment and sleeping bags. They will be bringing as many supplies as they can fit in their suitcases while ensuring the bags are under the weight limit. Even frying pans from Walmart will be packed in their luggage!
They plan on purchasing an abundance of their food in Iceland
as they travel from location to location; however, as a backup they are also
bringing Mountain House brand freeze dried food that just need hot water added.
This too will be packed in their luggage. They don’t want to risk trying to
find freeze dried food in Iceland, since this brand may not be available. Mountain
House is the only brand that we have found that doesn’t have Morgan’s allergens
– peanuts, tree nuts, sesame, fish and shellfish.
In Iceland, camping is allowed only in designated camping
sites. The good news is that there are no bugs, spiders, mosquitos or snakes.
And the only animals are arctic fox, mice, rabbit and reindeer – so nothing
warranting concern for an animal getting aggressive like bears will in the
Since Iceland is known for its fishing and a fish-oriented
diet, they will be taking extra caution with Morgan’s anaphylactic fish
allergy. Morgan can’t even stand the smell of fish, so shopping in stores or
markets may get interesting!
This is a trip of a lifetime, and the two are SO excited for this adventure! I will be reporting back with a blog post after they return, and I’m sure the two of them will be providing many pictures and commentary too.
There are many stresses in our world that can cause a mast cell to degranulate: pollens, chemicals, foods, illness, injury and even good old emotional “stress.” If you have a mast cell activation syndrome (MCAS) diagnosis, being mindful of stress is key to keeping your condition from negatively affecting your life.
I have found that there are some stresses that are more easily managed, such as the foods that I eat or the chemicals that are in my home. I make sure that I never “cheat” with foods. I know which foods I can tolerate, and I always maintain my diet with only those organic foods. Is it hard to be that vigilant? Yes, it is! However, I know my body well enough now to understand that adding any extra stress doesn’t make me feel good, and certainly puts my physical and mental health at risk if a stressor comes along that I can’t foresee.
My husband and I have recently begun using only non-toxic products in our house for cleaning. We’ve found that the Better Life brand is great, and they have every kind of product you can think of for glass cleaning, dusting, dishwasher soap, etc. (By the way, I’m not receiving any funding for this endorsement. It’s based purely on my experience.)
Other stresses are more difficult to learn how to manage. I’ve gotten better through the years to be able to recognize when my work is creating too much of a burden on my time, thereby creating stress. I am blessed to be able to work out of my home, which assists not only with the environment in which I work, but also that I can make my own foods in my own kitchen, and I can take a 20 minute afternoon nap if I feel so inclined.
I can’t stop the spring or fall pollen flares, but I can be mindful of increasing my use of antihistamines, taking a shower before bed, and keeping the windows of my home closed and the air conditioning on. All of these actions help to lower the stress load of pollens on my body.
Having an allergic reaction to a bee sting last summer created a storm of mast cells that necessitated a round of Prednisone to calm down the reaction. Any type of allergic reaction creates tremendous stress on the body, and especially for those of us with MCAS. I am always aware of bees in my environment since I’ve had a bad reaction previous to this one, and I carry an Auvi-Q in case the reaction is severe. Sometimes, though, a bee comes out of nowhere which is what occurred with this sting.
Late last year, I got a case of bronchitis that lasted 6 weeks, and left only after taking an antibiotic, which I haven’t had to take in over 12 years. The stress of the illness plus the medication was difficult for my body to recover from, and my mast cells were trying to be helpful by degranulating. Instead, I felt sick to my stomach in addition to coughing! Bodies do heal, and slowly I got better.
Also, over this past year, I have twice had injuries. I fell on a gravel path last year, spraining my ankle. It took months to get back to “normal” of being able to walk. My mast cells reacted for about two weeks with a storm of activity while my nervous system responded to the bruising and swelling of my ankle. I increased my Ketotifen to calm down my system, and took care of myself. Because of my sensitive stomach, I’m unable to take any type of pain medications – even Tylenol or Advil – without having more mast cell degranulation. Therefore, I get the opportunity to rest, breathe into the pain and to heal instead of taking pain medication and moving back into life right away.
Last week, I was in a car accident when a 1/2 ton truck ran into my car going 40+ mph. I thankfully was able to walk/limp away from the accident, however my car was totaled. The impact on my muscles, and the bruises that continued to show up for days, showed me what a stress the accident had put on my body. Sometimes, there’s nothing we can do when a big stressor shows up. I’m very grateful that my body had been doing really well with no illnesses or issues for a good 5 months before the accident occurred. And it’s been a difficult recovery where once again I’m unable to take any pain medications.
My goal is balance – balancing the stress in my life which plays out on my mast cells. It requires for me to be constantly aware of my body and my environment. I have to be a good advocate for myself, especially if I’m in a location that is filled with perfumes or smoke, and get out immediately! I worry less and less about what others think about me, and whether they think I’m weird. I’m sensitive, and that’s a good thing!
Maintaining control of kitchen supplies and surfaces is a must for those with food allergies. Yet, there are many times when a shared kitchen is all that is available. When is it safe to cook there? And how do you do it? When do you need to find an alternative method to prepare food? What are your limits when it comes to safety?
When we were searching for a safe college living experience for our son, Morgan, who has allergies to peanuts, tree nuts, sesame, fish and shellfish, many colleges promoted their dorm floor “community kitchen” as an option for preparing safe foods.
These kitchens allowed ALL students to cook brownies, pizza or whatever else might be hitting their palate at midnight when the cafeteria was closed. Most of the kitchens we saw were supplied with utensils, baking trays and various other kitchen gadgets to be able to cook and/or bake.
Preparing meals for someone with food allergies, using the same utensils and pans that had previously been used to make brownies with walnuts for example, was not a cooking situation that would prove safe for Morgan without a large amount of cleaning surfaces and supplies first. And the potential for cross contact was very high in the cleaning up process, so we did not see this as a good solution.
Also, these college community kitchens relied upon the students to clean up after themselves, or to clean up after the previous student’s cooking attempts. Custodians and maids are frequently hired by colleges to clean the community bathrooms, but rarely are they cleaning the community kitchens.
We decided it was safer for Morgan, and it was his preference, to eat in the dorm cafeteria where cross contact could be monitored by the chef and employees. During his two years of living on campus at college he never prepared any food in a community kitchen.
Sharing a Kitchen with Roommates and/or Housemates
Once Morgan moved out of the dorms, he lived in an apartment with three other roommates. They had shared a very small kitchen. Morgan asked that none of his allergens be brought into the kitchen. Each of the four roommates had separate bedrooms, so he didn’t try to monitor what food they brought into their rooms. He just wanted to ensure that nothing was brought into the kitchen area.
There was only one “oops” in the 9 months they lived together, and the roommate who brought in nuts cleaned up everything – pans, countertops, utensils, plates, and even threw out the sponge – to ensure that Morgan didn’t have any contact issues.
During his senior year of college, Morgan moved into a house with two other roommates and kept this same request that none of his allergens be cooked in the kitchen. It worked well, and his roommates always honored his request.
While studying abroad in England, Morgan had to request special accommodations for his living and dining situation. Students who came from other countries to the University of Lancaster were provided a dorm room with a shared community kitchen to ensure that they met more students at the school while preparing their meals.
While that would have been nice, it wasn’t a situation that Morgan felt comfortable with. Students came from numerous countries, many of whom were accustomed to regularly eating the foods that Morgan was allergic to – especially nuts and sesame.
Morgan had to provide arrangements with the Disability Services Office to have an “ensuite kitchen.” That resulted in him being the only person using the kitchen in his dorm room. The room was tiny and the stove only had two burners, plus there was no oven! But he made it work for the 10 weeks of the school quarter while he was there, grateful that he didn’t have to try to monitor all the variety of foods in a community kitchen. And he still met many students in his classes and in the dorm.
Airbnb and vacation properties
Morgan traveled overseas before studying abroad during his junior year of college and stayed in a variety of Airbnb properties. He also travels a lot for work now staying in these properties. He has found that cleaning all of the cutting boards, utensils, and pans before using them to cook is a necessity.
He has also stayed in Airbnb properties where the host will provide breakfast or some other meal. This gives him the opportunity to explain his food allergies, and he has never accepted food from someone else.
He has stayed in a property where there were other “roommates” who used the kitchen. He was only in this situation for a week, and decided to not ask that all of the roommates refrain from bringing in his allergens. Instead, he cleaned the kitchen utensils that he was going to use for making oatmeal for breakfast, and ended up eating out for most other meals at safe restaurants.
A final word
What we’ve found is that it’s most important to listen to your intuition about a situation AND always be honest about your food allergies. It’s never worth accepting a food from someone because you’re concerned you’re going to hurt the feelings of your Airbnb host.
Bring plastic gloves to be able to do the cleanup in a kitchen without having any cross contact issues, or ask a friend to help.
You might have to pay more money in order to get a safe living situation or a safe traveling situation – but your safety is worth it!
I have recently been hearing from numerous people asking me how to obtain a mast cell activation diagnosis. What kind of doctor should I see? What kind of tests should I have done? Is there a blood test for it?
I share what I had to go through for 5 years before getting a diagnosis. I saw numerous different doctors – a primary care medical doctor, a D.O. primary care doctor, a private practice allergist, a private practice gastrointestinal doctor, an allergist and a GI doctor in a medical research facility…the list goes on and on. While I had numerous blood, urine, skin prick and food allergy tests, endoscopy and colonoscopy tests, no one could figure out why my stomach hurt 24 hours a day and I was continually losing foods in my diet. Everything came out “normal” in these tests; however, no doctor was actually biopsy testing for mast cells.
The food allergy and skin prick tests showed that I had some food allergies, but I wasn’t able to eat the foods that I wasn’t allergic to without severe gut distress. In other words, I was still reacting to foods that I wasn’t allergic to, and this was baffling for my allergist. This is a common refrain of those with mast cell issues. When I read online about someone who says that they are down to only tolerating a few foods, I ask the question, “Has anyone mentioned a mast cell activation disorder to you?”
Sadly, at this point, there is no blood test to determine a mast cell activation disorder. I got a diagnosis of a mast cell activation disorder when I saw a GI doctor who sent out my endoscopy lab biopsies to be stained for mast cells and tryptase. He also stained for eosinophils, and there were plenty of those in my esophagus and intestines also. By the time I finally saw a doctor who knew what to look for and how to accurately test me, my mast cell count was 30-40 per high powered field, and my eosinophils were 80-90. Most doctors agree that you want these counts below 15 per high powered field. Finally, I knew why I was feeling so terribly!
What I found is that medical doctors know a protocol to test for systemic mastocytosis, and they are more than willing to do that. I had one doctor who wanted to do a bone marrow biopsy on me. Thankfully I knew that I didn’t want that type of an invasive test. I had read enough about the systemic form to know that I didn’t have those symptoms.
There’s a great write up on diagnosing all types of mastocytosis and mast cell activation syndromes on The Mastocytosis Society website here. The interesting item to point out when it comes to mast cell activation disorders is that one of the criteria for diagnosing it is to put the patient on H1 and H2 inhibitor medications (generally Zyrtec and Zantac) to see if they feel better. If the patient feels better, then it must be a mast cell disorder! Backwards logic.
Most people seeking a diagnosis have been dealing with all kinds of odd manifestations of mast cells for years before they get to a breaking point and decide they need to get a diagnosis. Most mast cell activation issues manifest with gut involvement. A person’s bladder may be affected (a diagnosis of Interstitial Cystitis involves mast cells), but they also have gut issues. The good news about the gut involvement is that an endoscopy can be completed and biopsies can be stained to determine if mast cells are proliferating.
So, first thing I suggest to people is to have a food allergy testing to see if there are foods to which they have a true allergy. The second testing I suggest is to get an endoscopy and have the biopsies stained for mast cells.
If you do receive a mast cell activation diagnosis, you want to get on some type of antihistamine (and maybe even a mast cell stabilizing medication) as soon as possible. The longer that a person delays, the longer that mast cells will be activating, and the worse you will feel. This activation can create havoc on organs, and the cycle only gets worse. Soon it’s not only your gut that is affected, but the mast cells are proliferating at such a high rate that they can even move into your brain. You then begin to experience “brain fog.” This is a neurological issue where it’s difficult to concentrate, to remember things and to follow conversations. This cognitive dysfunction can affect people of all ages when there is mast cell involvement. I’ve experienced it myself when I was the sickest. Thankfully, by getting on a cocktail of antihistamines, a steroid, and a mast cell stabilizer for a few years, I was able to come back to my body. From there, I’ve done many other non-Western modalities to help my body heal.
I don’t know of one person who was suddenly able to get better without any type of medical intervention when it comes to a mast cell activation disorder. But you can get better! I am living proof of that.
Mast cell issues are increasing at a phenomenal rate currently. Ask any allergist if they have mast cell patients, and virtually every one will say yes. They will also probably say that they are some of the sickest patients they have, with so many symptoms it’s difficult to know where to begin to help them!
As a patient, we need to advocate for ourselves. Listen to your intuition. If a test doesn’t seem appropriate for you because of the cost or because it’s too invasive, speak up.
Our son, Morgan, was 10 years old when he originally wrote the answers to these questions in April of 2006. This article appeared in a newsletter that we published, long before there were blogs
He was anaphylactic to peanuts, tree nuts, sesame and shellfish, and severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees. At 22 years old now, he still has all of these allergies, plus he added fish to his anaphylactic food allergies.
Now that you’re getting older, do you ever go on school field trips without a parent joining in?
Only once so far. It was to a mining museum. I brought along my Epi Pens and Benadryl just in case if something happens. I have chosen on my next field trip, to Bent’s Old Fort in Eastern Colorado, to go with neither of my parents joining.
What do you have to bring in order to be safe?
I have to bring safe snacks, my own lunch, and of course my Epi Pen. I also bring Benadryl just if I get itchy eyes or something that is mild. I also make sure to have a friend nearby so that he knows what is happening and can tell my teacher to give me my Epi Pen if that would ever be necessary.
What did you experience on a recent field trip that could have been unsafe?
At the mining museum, we panned for gold. I did not participate because from an experience at the Denver Museum of Nature & Science. They had a little exploration box where you could dig for dinosaur bones. I could have done it, but on the sign, it said: Sand is made from Walnut Dust. I never did go do that again! At the Mining Museum, there was dirt and things at the bottom, along with gold flakes. I did not want to take risks just in case if the water was some type of oil, or whatever.
Did you feel left out not being able to participate in that?
Actually not. I have to be able to cooperate with my allergies and my life.
What do you plan on doing on your next field trip that goes all day and is 2 ½ hours away by bus to Bent’s Old Fort?
I plan to bring the same things as the Mining Museum trip – snacks, lunch, and my Epi kit which includes all my medicine. I also planned with my teacher that everyone will bring a safe snack and lunch, plus safe things to do, like not trade food things.
Are there any field trips that you wouldn’t want to participate in?
Yes, quite a few. The petting zoo, the cookie factory (if we ever went there), and a lot of other things that wouldn’t be safe for me if they were one of my allergens.
Our son, Morgan, was 10 years old when he originally wrote the answers to these questions in March of 2006. This article appeared in a newsletter that we published, long before there were blogs
He was anaphylactic to peanuts, tree nuts, sesame and shellfish, and severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees. At 22 years old now, he still has all of these allergies, plus he added fish to his anaphylactic food allergies.
What would you do if someone brought peanuts or nuts into your nut-free classroom at school?
I would just say, ‘I’m severely allergic to nuts. You can’t bring these into the classroom. Maybe could you bring in something else that is safe?’
Has this ever happened?
Once. One of my friends brought in cooked nuts with sesame seed on top for Chinese New Year. He said all right, but I don’t think necessarily he understood. He was from China.
What precautions are required for you to go on a field trip? Who carries your medications? You need to make sure that you are going somewhere that is safe for you. K-3 should have a parent/guardian that understands your food allergies and that can administer your Epi-Pen or other medications that are necessary. 4th and 5th graders should be responsible by now to carry their own medication and travel by their selves unless your parents do not feel comfortable with it.
Do you have a full time nurse at your school?
No, I don’t. She usually at most comes in once a week because she works at 4 different schools. She helps write up my Health Care Plan.
Do you participate in meetings to plan your 504 Plan and your Health Care Plan? Why do you think it’s important for you to be there? Yes, I do. Why? Well, so that I know my future teacher knows what I’m allergic to, and can also handle it. I think it’s important for me to be there because so that they get to know me, and actually understand what can happen if I go into anaphylactic shock. Also, I think I should be there so that I get know them and how it will work out with the classroom rules.
Morgan was 10 years old the end of January 2006 when this article was written originally for our February newsletter. He was then anaphylactic to peanuts, tree nuts, sesame and shellfish. He is severely allergic to dogs, cats and other furry animals. He gets eczema from food dyes, has mild asthma and is allergic to grasses, weeds and trees.
Where are your EpiPens® kept at school?
Just in case if I have an allergic reaction at school, I can use them. They are not by my side in the school. Two are in the office – one to stay there and one to go out to the playground with the monitor. I don’t think that is the greatest place to put them though because they are locked away. I also have one in each of my classrooms. (Mom’s note: in 2006, it was not legal for Morgan to self-carry his EpiPens, therefore other arrangements had to be made. It wasn’t until 2007 that he began to self-carry).
Do you trust that your teacher would know what to do if you were to have an allergic reaction?
Yes I do.
Do you trust the office staff to know what to do?
Not really. We had a boy a little older than me that had an allergic reaction and they did not use his epinephrine. They thought he had the flu. He did not die thankfully.
When you get older, do you plan on teaching your friends how to administer an EpiPen®?
YES I do! So they know what is happening when I’m in shock and what to do. Usually one of my friends is close by at all times.
What did you teach your Cub Scout Den about emergencies and food allergies?
I taught them how to use the EpiPen® and when to use it. I taught them the process which is put the EpiPen® in my thigh, call 911.
With the recent death of a girl dying after kissing a boy who had eaten peanut butter, what different behavior will you practice when you get older?
I’m never going to date a girl who eats peanut butter all the time. It is just too dangerous.
Will it be difficult to tell a girl what she can eat?
No. Not necessarily. It won’t be that hard just because it is a situation between life and death. I don’t want to risk my life.
When our son, Morgan, was young we were always SO careful to protect him from dogs and cats because of his severe allergies, diagnosed from a skin prick test, and confirmed with a few disastrous exposures. Prior to him receiving allergy shots, if he was in a house where a dog or cat had ever lived, his eyes would swell shut within 10 minutes. After receiving allergy shots, he wouldn’t have such a severe reaction, but was still subject to some asthma issues.
I have also been skin prick tested for allergies to dogs and cats, and have a severe cat allergy, and supposedly no dog allergy. However, I have been in homes with a dog and experienced a runny nose and cough, so there must be some dogs that bother me. (I’ve yet to figure out which breeds bother me, and which don’t.)
A few weeks ago, my husband and I went to Winter Park, Colorado, to stay in a condo owned by his brother. We were told that the property is “pet free,” and that they don’t allow anyone to bring in pets, which was a welcome relief. We packed up for a 4 day/3 night stay looking forward to rest and relaxation in the beauty of the Colorado Rockies.
When we got there, we noticed that there were dog hairs on the couch. We knew that his brother’s family owned a dog, and figured that the dog must have come to the condo with them at some point. I wasn’t too concerned since I have only ever had issues when the dog is in the room with me, and then only with a few dogs.
We bought a lint roller at a local hardware store and gathered up all the dog hairs we could. I wasn’t having any of my traditional runny nose or cough, so I thought I was doing fine with the dog hairs. And the condo was basically clean, with no dog hairs on the carpet, so we proceeded to stay the entire weekend having a great time.
I did notice while we were there, that during the night, around 3am, I kept waking up with an acid feeling and stomach ache. This isn’t unusual for me since I have a diagnosis of Eosinophilic Esophagitis (EoE), and I chalked it up to not taking enough acid medication.
By the time we got home, I realized that more acid medication wasn’t helping to mitigate my symptoms, and that my EoE had really flared. In Winter Park, it was snowing the entire time we were there, so there were no pollens in the air, which is my usual trigger. The only thing that could have triggered an EoE flare was the dog hair! That was a new experience for me.
I haven’t been in a house with dogs in several years, and it has been decades since I stayed overnight in a room where a dog has been. I now know that “pet free” to some people means that they don’t allow OTHER people to bring pets to their rental property. It doesn’t mean that they don’t bring their own pets!
When we have booked a condo through AirBnB, I always inquire with the owner whether pets have EVER been in a property, yet with my own brother-in-law I neglected to do this.
Recently, my son, Morgan, and I spoke at a FARE Community Engagement Council event in Denver on “Preparing for and Going to College with Food Allergies.” It was a wonderful event with dozens of attendees – both parents and teens – managing food allergies.
We shared first about what parents can do to prepare their child for college during grades K-12. You can read that blog post here.
Then, we spoke about how to go to college with food allergies, and the necessary steps to find out the information about food allergy awareness at a school.
I am frequently asked how to begin searching for a safe college when you/your child has food allergies and/or asthma. What questions do you ask when you visit a college? When should you ask these questions?
It was very important for me to remember that my son was the one going to college, so he and I had several conversations prior to visiting any college about what he wanted to learn during a college visit. I asked him to develop a list of questions that he had for college officials about living arrangements, eating in the cafeteria and academic interests. We then compared our lists and came up with the following questions pertaining to the food allergies and asthma. Your list may also include specific academic interests.
Here’s a list of questions on food allergies and asthma that are useful when visiting a college:
Are ingredients listed on all foods served in the cafeteria? If not, is there an app or a website that will have the ingredients?
Is there a chef on site to take special orders?
Are the cafeteria workers trained on food cross-contact?
How many of your child’s allergens are regularly served?
Can my child and I speak with a dining manager about my child’s needs?
How old are the dorm buildings and cafeteria facilities?
Has there been any water damage or flooding in the past?
Are the dorms air-conditioned? (If not, what documentation will be necessary to submit for a medical necessity to live in air-conditioning?)
Are pets (such as dogs and cats or other emotional support animals) allowed in the dorms?
Can the resident adviser be trained on the administration of an epinephrine auto-injector?
Is stock epinephrine carried by security personnel on campus?
Can roommates be selected to ensure no food allergens are in the dorm room?
How is a 911 call handled on campus?
Is food allowed in classrooms and lecture halls?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office to provide accommodations?
Yes, this is a long list of questions, yet you may have more depending upon your child’s allergies and needs.
When do you ask these questions?
I’d suggest first starting with the college website. If you go to the Dining Services page on the college’s website and find NOTHING about food allergies, that is your first clue that you may have an uphill battle. Schools that are aware of food allergies put that information on their website along with who to contact to ask questions.
The Housing page on a college website will generally not have any information about food allergies, but will likely have a contact person for questions.
We found that Disability Services website pages are usually geared more toward those with learning disabilities; however a few schools are starting to incorporate information about food allergies and what paperwork will be necessary. We waited until our son was accepted into his school of choice to begin specific conversations with Disability Services about our son’s situation. While a school should not deny admittance because of a disability, there’s no reason to give too much information prior to acceptance.
We found it best to have specific appointments set up with the Housing Office and with Chefs in the Dining Hall when we visited a campus to learn more about how they managed students with food allergies. Prior to him being accepted, we only asked general questions about what accommodations could be expected for a student with food allergies and/or asthma.
As for the Disability Services Office, we visited with a representative after my son was accepted to the school. We asked very specific questions about paperwork necessary for our son to receive accommodations. We found out that many schools will require that your child have recent testing confirming food allergies and asthma if specific accommodations are being requested. In other words, a skin prick test from 10 years ago was not going to suffice. A letter from our allergist delineated the specifics of what Morgan was going to need to safely attend college. The Disability Services office paperwork is best completed in the summer prior to the school year starting so that everything will be established once school starts. And remember that everything is completed and driven by your child once they are 18 years old. Schools expect your child to advocate for themselves.
Most colleges in today’s environment have managed students with food allergies. That can be a good thing if your child expects to eat in the cafeteria. It can be a negative thing if the college expects your child to have allergies similar to other students they’ve encountered, and you want a different accommodation.
There are several other lists of colleges and their accommodations for students with celiac and/or food allergies that might be helpful. Of course, it’s always preferable to use these lists as a guide and to visit the college yourself to ask questions specific to your child’s needs.
Recently, my son, Morgan, and I spoke at a FARE Community Engagement Council event in Denver on “Preparing for and Going to College with Food Allergies.” It was a wonderful event with dozens of attendees – both parents and teens – managing food allergies.
During the presentation, the first thing we discussed was what parents can do to prepare their children in grades K-12 for college.After all, going to college is something that requires planning! And for children with food allergies, more planning is required. Also, more skills are required to be able to safely attend college.
Here was the list we shared that outlines what your child SHOULD be doing, or is able to do, before leaving for college.
Always carries epinephrine autoinjector – If your 18 year old is heading off to college and Mom or Dad is still reminding them to carry their autoinjector, there’s the potential for a very hazardous situation to occur. Parents aren’t going to be able to ensure that an EpiPen or Auvi-Q is being carried every time a child leaves their dorm room. Carrying epinephrine in a fanny pack or other bag can begin as early as four or five years old so that a child begins to understand that anywhere he/she goes the epi comes too!
Able to order food at a restaurant – This is a learned skill and one that took our family years to perfect. We had a chef card we created that explained Morgan’s allergies, but we also allowed him to begin to practice ordering his food at about age 10. If he forgot to mention something, we were there to assist. As he moved into high school and attended meals without us, we felt confident he knew how to explain his food allergies and cross contact to the wait staff and/or chef.
Can effectively read product ingredient labels – For Morgan, he does not eat any food that is labeled “may contain,”so he needs to be especially careful to accurately read every piece of text on a label. Learning how to read can become fun in looking for food allergens listed on a label, and we began that in kindergarten. It’s also important to know when to call the customer service telephone number for a product to determine whether the product is safe or not. Morgan continues to pick up the phone to call a company now that he’s an adult to provide for an extra layer of comfort.
Can identify an allergic reaction and/or anaphylaxis – This is more difficult if your child hasn’t had anaphylaxis since they were a baby, where they may not remember the symptoms. A discussion with your allergist can assist with your child being able to list symptoms and know when it’s time to administer an autoinjector or an antihistamine.
Can train friends and others about allergic reactions and epinephrine administration – This is especially important in the college setting, because there is no school nurse who is going to be training friends, Resident Assistants or professors. Practicing at home with expired autoinjectors, injecting them into oranges, helps your child know how to explain administration to friends. The Auvi-Q device was great fun for Morgan’s college friends to learn since it talked them through how to administer!
Is comfortable making appointments and speaking with a doctor – We had Morgan begin to complete all the pre-appointment paperwork for an allergist’s appointment beginning in late middle school. He needed to know what the names of his medications were and what dose he took. Then we transitioned to him discussing his concerns with the allergist at appointments, with Mom also in the room. Finally, he began to make his own appointments with the allergist and to go by himself. This was necessary before he went to college, because Mom or Dad wouldn’t be able to be with him at every doctor’s appointment.
Remembers to take medications for pollen allergies and/or asthma – This is a difficult skill, and will probably need plenty of parental supervision. There are also apps, alarms and other technological advances that can help with this. This skill comes in late high school or even later depending upon your child.
Can advocate with teachers, the Disability Services Office, chefs and employers – A college is going to view your child at 18 years old as an adult, capable of completing their own paperwork. Practicing this skill beforehand is vital for good outcomes in college. Advocating with teachers can begin in elementary school. If Mom/Dad resolve every issue, children don’t learn how to advocate for themselves. Talking through a situation, at home, with your child can help them to gain the courage to handle the situation at school. Of course, there are some situations that still need Mom/Dad to guide, but learning how to speak up early in life helps strengthen the advocacy muscle. Talking with an employer about food allergies is a life skill that your child needs to learn, unless they plan on being independently wealthy!
Able to shop for groceries and cook for oneself – Learning how to cook is great fun and can be a family activity starting in the toddler years. Label reading at the grocery store can start once your child can read. Both of these skills are so helpful for college students to keep themselves safe and well fed.
I imagine that no child with food allergies is perfect at all of these activities; however, knowing that your child can manage the most important skills will allow you, as the parent, to support your child heading off to college!
This newsletter interview of my son, Morgan, occurred in January of 2006. I will be continuing to add these “old” interviews to this blog.
Morgan became 10 years old the end of that January. At the time, he was anaphylactic to peanuts, tree nuts, sesame and shellfish. He was severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees.
If you were suddenly not allergic to peanuts, would you want to eat them?
No actually. I would not. I don’t really know why, but it just seems that I don’t like them, even if some day I’m not allergic to them.
If someone comes up to you in the lunchroom with peanut butter and jelly and wants to sit next to you, what do you tell them?
I tell them, “Can you please move away, I’m severely allergic to peanut butter.” Usually, that doesn’t happen very often because my friends literally swarm upon me protecting me. If that doesn’t work, I go tell the lunchroom monitor, or my Vice Principal, who usually walks around the tables.
When you go to birthday parties, what do you do to keep yourself safe?
I bring my own snacks to birthday parties, actually. Just to be safe, I check the ingredients on everything they serve, but if really nothing’s safe, I just eat what I brought.
Do you ever go on sleepovers? What has to be done for you to be able to attend?
If I ever go to a sleepover, I only go to a dog and cat free house, and I make sure they’re not having peanut butter and jelly sandwiches for dinner with sesame buns! I bring my own food for a sleep over, so really, I bring everything from home that is safe for me.
What do you fear most around your allergies?
I fear most that I will have an allergic reaction eating something that the label did not say something that I was allergic to was in it, and end up in the hospital.
Have you ever had to use your epinephrine kit?
No. I have not. I have had to go on Prednisone steroid a few times after a bad allergic reaction to something we never figured out. And I’ve taken Benedryl lots of times after a dog licked me and after eating eggs, which I used to be allergic to.
Do you think you could give yourself the epinephrine shot if you had to?
Yes. Only if it was right in the beginning of the shock, so I could still use my hands and not feel paralyzed.
What can you tell other children who have food allergies to give them help and hope?
I always tell them to stick up for them selves and always read labels. Those are what I mainly say, although I also give other advice. Also, besides reading labels and sticking up for your food allergies, just bring your own stuff everywhere if it’s out of your house just to be safe. If you go into anaphylaxis, have people know what to do if it ever happens. Have them know where your Epi Pen is and other medicine is. Don’t have them not know what is happening if you do go into anaphylaxis.
For those of you who manage mast cell activation issues, you know how things can go great and then reverse direction within a day! Mast cells can be triggered by foods, chemicals or scents, and by environmental triggers and seemingly by 100 other items where we’re constantly playing detective. I work hard to keep my diet completely organic and to stay away from foods I’m allergic to; to not be exposed to any chemicals (such as hair dye or cleaning solvents) and to mitigate dust, pet and other pollen exposure. That has helped me to progress tremendously since my activation issues began 12 years ago. I’ve also found a few new areas that create setbacks, which I’ll share below.
My daughter, Michaela, and I have both been on Dr. Xiu-Min Li’s protocol of Traditional Chinese Medicine herbs to assist with calming down the inflammation in our bodies from mast cell activation. We both use the herbs topically only, as neither of us is able to tolerate swallowing the herbs for consecutive days or periods of time. Dr. Li has been especially helpful in assisting each of us to feel better with an herb paste that we put on the bottom of our feet overnight. These specific herbs help with acid reflux and calming the gut. I also use a special cream on my entire body that helps to calm down the mast cells throughout my body – skin, gut, nasal passages, etc.
I’ve been on this protocol for 3 years; Michaela for 1 year. Each of us would love to be able to increase the foods that we are able to eat AND to have no stomach issues. We’re moving in the right direction, which is really wonderful.
Both Michaela and I also see a chiropractor in Denver who specializes in Network Spinal Analysis (NSA). This has helped our energy levels to increase and to balance out energy in our bodies. Mast cell activation can affect sleep patterns and also can affect how energy flows through the nervous system creating pain in the back especially. It’s not unusual for me to have hot flashes and awaken in an anxious state scratching an itch that isn’t prevalent during the day! NSA helps me to get better sleep, and has also helped me to be able to exercise again without extreme pain.
In May of this year I fell on gravel after tripping over a 3 inch lip in a trail. Not only did I cut up my hands and knees, but I also sprained my ankle and pulled muscles in my chest. My entire body went into a nervous overdrive. Within a few hours of the fall, my mast cells began going crazy causing me to feel nauseous and dizzy. I knew a mast cell degranulation was occurring because I’ve experienced it frequently enough in the past. I choked a few bites of food down and took an antihistamine along with extra Ketotifen (a mast cell stabilizer) to begin to calm my body. While it took a good month for me to be able to walk on my ankle, it took only a few days for my mast cells to calm back down. However, for those few days, I was so tired and nauseous it was reminiscent of years ago when I felt like that every day! Now, it was a minor setback. I learned that stress to the body (or to the mind) can have big ramifications for mast cells.
I also wrote about my bee sting that occurred in the summer here, which was also a minor setback. Thankfully, I know to respond quickly to bee stings and to get on Prednisone as soon as possible!
Michaela also experienced a strange reaction during this past summer. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our NSA chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. She has now learned to ask home owners where she will be staying overnight if they’ve had any recent renovations! The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.
Mast cells activation issues require constant vigilance and awareness of one’s environment. Injury and chemicals stress the body. Mast cells are only trying to protect, but with an activation disorder they end up hurting the body!
Back in December of 2005, I began sending out a monthly newsletter from me/AllergicChild. This was long before blogs came into being!
I created a Morgan’s Corner in the newsletter for our then 9-year- old son to answer questions about living with food allergies. Morgan is now 22 years old and a college graduate! Yet, many of these memories from these interviews are worth saving on the blog and sharing with you.
You will notice in the interview below that Morgan doesn’t list Fish as an allergy. He had yet to experience anaphylaxis on a camping trip to trout that illuminated the allergy!
I’m sure many of you will relate to his successes and challenges as I continue to add these to the blog and share them.
How old are you Morgan?
I’m 9 years old and in the 4th grade.
What are you allergic to?
Peanuts, Tree Nuts, Shellfish, and Sesame. I’m also allergic to Dogs and Cats, although it’s mostly anything that’s alive with fur on it. Although those are but a few what I am really allergic to, those are my main.
Do you ever remember not having allergies?
No, I do not remember not having food allergies. I was really young when we found out, so I don’t remember.
What’s the worst part of your allergies? In other words, what do you wish you could change?
I don’t know really what the worst part is. It’s either not going over to a friend’s house or I can’t eat something. I also wish that I did not have dog allergies just because a lot of my friends have dogs, so they have to come over to my house instead of me going over to theirs.
Have you ever been teased because of your allergies?
Well, twice actually. Once, a friend of mine went running around the playground, of course chasing me, holding a peanut butter cracker and yelling “Eat it Morgan! Eat it!” Another time is when another one of my friends actually went around chasing me pretending to be a peanut butter sandwich. All these times, I went and told the teacher and they did get in to trouble. We’re friends now, and I don’t think about it much anymore.
Have you ever been left out of activities because of your allergies? If so, what? How did that feel?
Food Fights, Food Fights, and more Food Fights. Seriously, I have to either not participate, or check the labels on all foods at a party at school. That usually takes a long time though. It sometimes felt great that I’m safe, but I also want to participate. I have also been left out when my 1st grade classroom went next door and I couldn’t go in. The classroom wasn’t peanut free. I told my teacher how it felt to be left out. She cried, and it didn’t happen again.
There are many people who suffer from a bee sting allergy, and most don’t have any food allergies. Thankfully, so far, neither of my grown children – Morgan and Michaela – have experienced any reaction to the bee stings that they have received.
It’s a different story for me. As a child and into my early 20’s, I received several bee and wasp stings without any issues other than a little discomfort. That all changed in 2006 when I was stung by a wasp on the back of my thigh. That was the beginning of my entire immune system going on “tilt”. I was later diagnosed with a mast cell disorder, which honestly could have been active for years prior to this bee sting. And the reaction to the sting brought my system over a threshold from which it hasn’t yet recovered.
The wasp sting reaction lasted for 3 weeks with hives on my thigh and itching. I didn’t realize then that I should have gone to the doctor and gotten steroids or some other treatment. Foolishly, I toughed it out.
I did tell my allergist at our next visit, and she gave me a prescription for an epinephrine autoinjector because of the severity and length of my reaction. I never experienced any breathing issues, which I’m grateful for. However, as with any type of allergic reaction, you never know what the next one could bring.
This past week, I was stung by a bee while out walking in my neighborhood. I sustained the sting on my left pointer finger right below the knuckle. I pulled out the stinger immediately and headed home to put on ice. I truly didn’t think I’d have a reaction this time since my mast cell disorder is better maintained with antihistamines and mast cell stabilizers, and I’ve never reacted to previous bee stings. Yet, the swelling began the next day.
By a day and a half after having the sting, my hand looked more like the Incredible Hulk’s than my own! It was itchy, and the swelling was so bad that I had to hold my hand above my head to keep it from throbbing. Again, I had no breathing issues thankfully, but the swelling was getting to the point that I was concerned that the skin on my pointer finger was going to burst.
I set out for my allergist’s office, ended up seeing a Nurse Practitioner since my allergist wasn’t in the office that day. She sadly had no knowledge of mast cell disorders, and thought a few extra antihistamines would do the trick. I had to beg her for a prescription of Prednisone. She acquiesced and said I should take 20mg of Prednisone each day for 5 days and then stop. I’ve never heard of this, with no titrating off of the drug. I asked her about that, and she said it wasn’t a problem. Again, not what should be done for someone with a mast cell disorder!
When I got to the pharmacy, the pharmacist had thankfully noticed that the 20mg tablets of Prednisone contain dye, which I react to, and asked if I’d prefer the 10mg tablets. I was so thankful that he noticed this! He then told me that she had prescribed two 20mg tablets a day for 5 days. So that’s 40mg of Prednisone a day with no titrating off!
I called the Nurse Practitioner and asked about this mixup and what should I be taking? She said the 40mg was fine. At this point, I knew I’d better get in to see a doctor, and went to my family practice doctor to get everything straightened out.
The doctor put me on a short course of Prednisone, starting at 20mg and titrating off over the next 4 days. The drug quickly began to lessen the itching, pain and swelling.
A few reminder lessens learned:
Past reactions to bee stings/wasp stings don’t indicate current reactions.
With any type of serious reaction, see a doctor! And if you have a mast cell disorder, it’s always better to see one who understands the nuances of reactions with mast cell patients.
Make sure to have any type of dye allergies listed at your pharmacy.
Never go off of a steroid suddenly. Always titrate down!
The first week of June 2018 was a whirlwind of graduation week (from college) for our son, Morgan, and our family. Graduations are an exciting time filled with activities and emotions for every family. And for us, it was a major milestone for Morgan to make it through four years of school with no serious allergic reaction with his allergies to peanuts, tree nuts, sesame, fish and shellfish!
Because Morgan was the Student Body President his senior year, he was the University of Denver student graduation speaker. And yes, that is a Winnie the Pooh bear on the podium with him! He quoted Pooh several times in his speech. Here’s one snippet: “I hope that we all have at least one something that makes saying goodbye hard. It will be something or someone that we cherish deeply. And it doesn’t have to be big either. As Pooh says, ‘sometimes the smallest things take up the most room in your heart.’ Let’s all take the time to express and celebrate that something or someone today.”
Morgan participated in and experienced so many wonderful adventures in 4 years of college: clubs, student government, study abroad, internships, jobs, friendships, roommates, and intimate relationships. Every one of these were affected by his food allergies, and he learned how to become an even better advocate!
The graduation has brought back memories of how far Morgan has come since he began college almost 4 years ago. And Mom has had to do a lot of growing too!
Living with a Roommate in College
When Morgan graduated from high school, (which I wrote about in a blog post here four years ago), we knew he was heading to the University of Denver. He really wanted to live in the dorm with a roommate in the Living and Learning community called the Pioneer Leadership Program.
Over that summer in 2014, Morgan and I had one meeting with the chefs at the school, and he determined that with their training from AllerTrain, and their willingness to continue to learn, it would be safe for him to live in the dorm and eat cafeteria food. We had a single room with a kitchen as a backup, but that would mean he couldn’t live with the Leadership program, which was a major barrier to participation.
He and I had many conversations that summer as I passed the baton, so to speak, to him to determine how he was going to tell his assigned roommate, Thomas, about his food allergies. Truth be told – he did so in a text message after having coffee for 3 hours chatting about how they each wanted their living situation to play out!! That was my first lesson in letting go. I really wanted for him to explain EVERYTHING about food allergies and his asthma to Thomas. And that was the first in a long list of Morgan learning how to take care of himself, in the way HE wanted to create his relationships and his life in college.
Through the years, Thomas was a roommate with Morgan during their first, third and last school years, and he was a travel companion through Europe prior to studying abroad. He now understands everything there is to know about Morgan’s food allergies, recognizing allergic reactions and how to operate Morgan’s Auvi-Q.
When I thanked Thomas for being such a wonderful roommate through all the years, he responded, “If I had to give up peanut butter to get a best friend, it’s a small price to pay!” Truth be known – he gave up a lot more than that, but this is why my son was so adamant to figure out a way to have roommates in college!
Learning How to Advocate Even More
Morgan’s activities in high school included playing piano for the Choir and participating in Speech & Debate, which allowed him to experience overnight trips and roommates. This helped him so much with the college experience, and having to manage food allergies.
I’d really encourage all parents to allow and encourage your children with food allergies to be involved with activities in high school that require them to go on overnight trips; to manage roommates in hotel rooms; to be responsible for carrying their medication(s); to train chaperones and teachers about food allergies; and to be faced with situations that don’t go as planned.
Morgan wrote about a last minute invitation to a business lunch here which offered an opportunity to advocate on the spot while working in college.
He also wrote extensively on his study abroad experience in his junior year at the University of Denver here:
The difference between high school and college really is that we parents have to trust that we’ve done as much as we can do to train our children how to make good choices. While they are still at home, we hear more about what’s going on. Once they go to college, a healthy relationship for my husband and I did not include having our son check in to tell us what he was eating, or to share about every one of his activities.
We did want to keep track of his trips and where he was located, but when he was in Denver, we would frequently hear from him via text every few days or so. And we spoke with him only every few weeks on the telephone. We live an hour away by car from Denver, so he was able to come home to visit (or we would go to DU) every 3-4 weeks.
For me, I was so accustomed to being VERY involved with all of Morgan’s medical issues, it was really difficult to loosen the grip I had on him, and to trust that he knew what to do with his pollen allergies, for example. When to take a Zyrtec for his nasal symptoms, or when his ocular allergies were causing his eyes to swell – he no longer needed me to ask “do you need…..?”
We are still working on me learning how to “zipper my lippers” on his medical needs!
Mom Learning How to Let Go
It truly has been a one day at a time process for me to learn how to let go of my obsession around Morgan’s health, which I wrote about in a blog post here.
Thankfully he never had a serious allergic reaction in college warranting a trip to the ER. He did land there once with a mystery stomach issue, which was enough excitement for us. I credit Morgan’s ability to manage and remain vigilant about his food allergies every where he went.
When he left to travel through Europe before his study abroad in England, I counted the days that he would be gone. It was 140 days. I counted them down every night. It was the longest 140 days of my life! We kept in contact with him more than we ever did when he was just one hour away from us. He managed everything beautifully. I knew then that we had trained him well.
Shortly after he returned he was telling me about how he was going out to dinner with some friends and that he would ensure he ordered a safe meal. I realized that the thought hadn’t even crossed my mind to be concerned. I told him that he’d made it through 9 countries and 33 cities during almost 5 months, and if he could do that without an allergic reaction, I knew he could take care of himself going to a restaurant in Denver!
Morgan grew from a boy into a man during college, which is what we all hope our children will do. He’s ready to step into the work world with his first “real” job as an Economic Development Specialist for the Longmont, Colorado Economic Development Partnership.
I will continue to have to work on letting go of him and his food allergies, asthma and various other medical conditions. I’ll always be a Mom!
Both my son and I had a childhood filled with eczema. For me, it was long before anyone knew that eczema was related to the atopic march of allergies and asthma. For my son, Morgan, we learned various ways to combat his eczema and make him more comfortable, which I have written about here.
Through the years, we’ve learned of many more skin issues that can occur related to mast cell issues and environmental allergies, and have found various products that have really helped both of us.
Morgan frequently had itchy skin, and not always from eczema. When he would play outside in the summertime, when the pollens were high, he would frequently itch afterward. We didn’t want to have to give him Benadryl or cover him with steroid cream each time. We found a product called Sarna which really worked. It was steroid-free and you can purchase the “original” or “sensitive” which is fragrance-free. My daughter says the original “smells like my childhood!” because we applied it to Morgan so frequently.
Morgan also has ocular allergies. Sometimes his eyes got so red and puffy we had to resort prescription eye drops and steroids. We tried to not allow it to get to that extreme by using Zaditor eye drops. These drops have Ketotifen as the active ingredient, which is a mast cell stabilizer. With my daughter and I having a mast cell activation diagnosis, we use these drops frequently during tree pollen season and enjoy great relief.
Colorado winters are extremely dry, and everyone in our family has been in need of more skin moisture this past season. We’ve found Vanicream to be an answer to our alligator skin issues, and to ensure that eczema doesn’t flare. It is naturally fragrance free, and can even be applied to facial skin without clogging pores.
My mast cell issues have created another issue on my facial skin – Rosacea. I will react to most makeups by just getting redder skin. I found the company Rosaceacare years ago, and love it! I use the ZincO cream that includes a sun block on my face. I also love the cleanser and moisturizer.
Kiss Freely has great lip balm that my daughter loves, and their body butter is amazing! It really helps dry skin and is free of all allergens and gluten that have caused us to react previously.
Lastly, I have eyelid issues. Specifically, it’s called blepharitis, and is frequently seen in people with mast cell issues and rosacea. My eyelids get red and swollen and need to be cleaned daily. This is important to keep me from having to ingest oral antibiotics or to be putting antibiotic drops in my eyes frequently. I’ve found a product called HypoChlor can be used on gauze to scrub my eyelids and keep them from becoming inflamed.
One last note – I am not being paid to suggest any of these products. They are what works for us, and I hope that if you have similar skin and eye issues, you might find the suggestions helpful!
I remember the fear I felt when my son was in elementary school around Valentine’s Day school parties. I knew, from my childhood, that candy and food surrounded every party in the classroom. I also knew that it would take preparation and education to ensure that my son’s classroom remained safe during and after any party his class had.
My son started kindergarten in 2001, when food allergy awareness was definitely lacking. My initial thought was to remove all food from the classroom and have a food-free party! I thought it was a brilliant idea – crafts, games and fun. When I shared that with the teachers and the other room parents, you would have thought I suggested we starve the children for the month of February! So, food was very much a part of every year’s school celebration in addition to the kids bringing in Valentine’s Day cards, many of which included candy treats.
For my son’s entire elementary school years (all six of them from K-5), I was a room Mom in charge of planning every party. What a job that was, but I felt it so important to do this for his safety. This certainly helped for me to know what was planned for fun and for food. It also helped to steer the menu away from my son’s allergens – peanuts, tree nuts, sesame, fish and shellfish.
The classroom teacher sent out a reminder the week before Valentine’s Day reminding every family to NOT bring in foods that contained the allergens of any child in the classroom as a candy attached to the Valentine’s card or as food for the party.
Despite this, there were several years where we had issues. One year, a Mom brought in beautifully homemade cupcakes that had peanuts sprinkled on the top. The teacher looked at me when they entered the classroom on party day, and I gave her the evil eye threatening to make a scene if she didn’t handle it right there and then. The cupcakes were removed from the classroom immediately.
Another year, one family who didn’t understand English very well, brought in sesame candy to celebrate the Chinese New Year along with Valentine’s Day and put it into every child’s Valentine’s bag to take home. Many children got into the candy during the school day, and sesame seeds went everywhere. Since this occurred in 3rd grade, the students were much more aware of the issues this posed for my son. The Principal had to get involved with this issue and brought the parents in to explain food allergies and why sesame covered candies can’t be sent in to school. I’m not sure they ever understood the issue!
By 4th grade, my son’s classroom had a dance party with fruit and punch as food and that was it! That was such a wonderful step in the right direction – I was thrilled.
Once my son went to middle school in 6th grade, there were no longer any Valentine’s Day celebrations or parties. I didn’t miss the party at all, and honestly, I don’t think that my son did either.
If you’re still battling an elementary school with parties, I’m feeling for you! We learned that even with reminders to families about not bringing in food allergens, mistakes can still happen. If at all possible, be in attendance at your child’s school to watch the food. And practice with your child before the day how to respond to food that doesn’t appear safe – tell the teacher, don’t eat it, and make sure to tell Mom/Dad! If you’re school is open to having parties without food, there are so many activities that can be enjoyed.
Here are more links for safe Valentine’s Day Candies, Kissing with Food Allergies and food free treats:
For the first time in 14 years, our family took a week long vacation with just the 4 of us: my husband, me and our two grown children – Morgan (almost 22 years old) and Michaela (27 years old). We headed to Orlando, Florida for a week’s worth of fun and sun in December. With Morgan on the quarter system for college, and Michaela already working, this was an ideal time to vacation during “low season”.
We flew Southwest Airlines on a non-stop flight from Denver to Orlando. Southwest has worked great for all of us in the past, and has allowed Morgan to preboard and wipe down his area. Traveling to Florida, we were on a brand new plane which was on its first day of flight, which was wonderful! That flight and the flight home worked perfectly – both were mid-morning flights, so not the first flight of the day, but we’ve never required that as part of our travel plans. When we boarded the flight home, the flight attendant told us that the previous flight also had no peanuts served, which made for a nice, clean plane. But we still wiped down the area where Morgan sat.
Traveling and managing Morgan’s food allergies – peanuts, tree nuts, sesame, fish and shellfish – along with his pet and environmental allergies pales in comparison to managing Michaela’s and my mast cell symptoms. She and I both eat only organic foods; however, her diet is vegetables and fruits, while I tolerate only a few foods – chicken breast, turkey breast, frozen Cascadian Farms hash browns and broccoli. My husband, Robert, is on the Whole 30 food plan – so cooking for all of us requires a short order chef!
Actually, we don’t ever eat out because of the organic food requirement, and the mast cell issues require much more vigilance than even food allergies. The type of water that I drink can affect my stomach! Unbelievable, but true. And for those of you with mast cell issues, I’m sure you know what I mean. So, braving a family vacation is a big deal. It also requires a lot of patience on each person’s part since each of us has different needs depending upon the situation. We’ve learned to also have activity days and rest days to keep positive attitudes!
We rented an AirBnB house that guaranteed it was pet and smoke free, and had a full kitchen since we would be cooking every meal. We planned ahead by finding out where the local grocery store (Publix) was, and I special ordered from them a week’s worth of the frozen potatoes that I eat. We also found a Whole Foods for Michaela’s foods, although it was 30 minutes from where we were staying. Morgan and Robert purchased their foods from each of these stores also.
I didn’t bring the organic ground turkey that I usually eat because I had called ahead to Publix and Whole Foods to ensure that they would carry it – plain with no spices added. However, when we arrived neither actually carried it, despite their reassurances that they did. This created a search across Orlando to find such a product. We finally did find a different brand, but I learned to bring it in the future since it’s so difficult to find elsewhere!
In regard to bringing food, we got a letter from our allergist to allow us to bring food onboard the plane through TSA. This letter was never requested, but we had it just in case it was. Also, the allergist’s letter delineated that we would be bringing frozen food in a cooler and checking it through as baggage. This too worked just fine with Southwest Airlines, and they never requested the doctor’s letter.
We found that the home we stayed in wasn’t well equipped with kitchen supplies, so thankfully I had brought a few frying pans and lids in my luggage. I always bring my own yellow colored spatula so that even my family knows which spatula is mine! I also brought my Instant Pot in my luggage. Since Michaela and I are part of Dr. Li’s private practice of Chinese Herbs for Allergies, Dr. Li has asked that I only eat meat cooked in the Instant Pot to help my stomach heal, and purchasing another one in Orlando didn’t make sense. So we brought a second suitcase with all these kitchen supplies!
All the grocery shopping and driving took us half of the first day in Orlando to set ourselves up. Then the fun began!
We went to the Kennedy Space Center and Cape Canaveral for our first outing. We packed our lunches and left them in a cooler in the car while we visited the Cape. We neglected to call ahead to see if a microwave would be available, and later we were told it wasn’t. In fact, they wouldn’t even allow any outside food in the space center, even with a medical condition from what we were told. So we ate our lunch cold (cold potatoes, broccoli and chicken will fill up the stomach, but doesn’t make a tasty meal!) in the car. Not the ideal situation, but we enjoyed each other’s company. And with my husband being a space enthusiast, we had a great time seeing all the exhibits.
We headed down to Cocoa Beach that same day. Being from Colorado, getting to see the ocean is a big deal. We enjoyed it thoroughly, especially since it is “low season” and there was hardly anyone else there, despite what we would call hot weather in December – mid-70’s!
The next day, we went to Disney Animal Kingdom. We wanted to especially see the new Pandora – World of Avatar, and to visit the Tree of Life. Michaela and I had to pre-make our meals the night before so that we would just have to heat them in the park. Morgan and Robert were able to bring salads and sandwiches – no heating required!
We searched online and found that they have lockers near the opening gate, which is where we put all of our lunchboxes plus snacks. Thanks to an inquiry on my AllergicChild Facebook page, I found out that the park does have one microwave for the public in the Baby Center area.
The park doesn’t have a lot of air conditioned locations, and with the temperature in the lower 80’s plus the humidity, our daughter began to have heat issues. You may remember me blogging about this issue here when she ended up hospitalized after having two grand mal seizures.
Thankfully, right next to the Baby Center, there was a First Aid office. She was able to get a bag of ice and sit in air conditioning for a little while to cool off. Twice more during the day, she went to First Aid to get more ice. I can’t say enough nice things about the Disney employees in First Aid – they were just magnificent. Each time she would come in, they provided a large plastic baggie of ice, and remembered her name from the first time. They treated her with such kindness, and we were so grateful for that.
Since the lockers we chose were at the park entrance, and the baby center was in the center, Michaela would walk with her plate of food piled high with cauliflower, carrots and squash nibbling until she got to the microwave. Several times, we had people stop us asking where she got her food! Dozens of people in the locker area brought their own food. Disney asked no questions about the coolers or even the water I brought in, which was wonderful.
The day was really long since we stayed for the River of Lights nighttime show, but it was well worth it.
We had all walked miles, and with feet hurting, we headed back to our AirBnB ready for bed!
We took a rest day the next day, and Michaela and I headed out to visit a Network Spinal Analysis chiropractor in the Orlando area. These doctors are specifically trained in a type of chiropractic work that involves gentle, precise touch to the spine cuing the brain to create new wellness promoting strategies.
We’ve found that part of the mast cell symptoms is extreme back pain, and all the walking we did the previous day was wreaking havoc on our spines. We found a lovely young woman who had recently opened her practice, and got us aligned and ready to walk the next day at Universal Studios Wizarding World of Harry Potter!
This was the big event that we were most looking forward to. Universal also had no issue with us bringing food into the park. And I brought my own water without anyone asking anything about it.
The lockers were once again near the opening gate of the park, however this time the microwave was very close in a “nursing room” in the family center.
We decided to purchase the 2-park pass since Hogsmeade is in one park, and Diagon Alley in another. My husband owns a marketing consulting firm, and he declared that as good marketing! And, of course, much more costly, but well worth it.
The weather was much cooler on this day (mid-60’s), and foggy which made for a great day to visit the magical world of London, feeling it was somewhat realistic to their actual weather.
We next went to Diagon Alley where Morgan got to taste his first Butter Beer.
Morgan had previously emailed Universal to inquire about whether Butter Beer would be safe for him. He listed his food allergens, and got this response:
Hi, in Universal Studios, we have fruit stands in the parks with apples, oranges, grapes, watermelon on them. Also have lemon and strawberry slush carts which will be ok, also have turkey legs on carts that are just smoke plain. We have a full service unit it is Lombard’s landing and Finnegan’s, we have a chef in each unit have the server bring the chef to the table and he can go over all the things he can do for you In Islands of Adventure we have 2 full service units one called Confisco’s and one is Mytho’s, we have Chefs in both of those units, have server bring Chef to table and he can go over the things he can do for you, we have another walk up unit it is Thunder Falls, we have smoke chicken, smoke pork ribs, and roasted corn on cob and roasted potatoes with fresh herbs and salt and pepper, also have French fries all natural cooked in soy blend oil that is the only thing cooked in those fryers too. I will also say no desserts at all from any of the restaurants too.
We also have three broomsticks which have smoked chicken and smoked pork ribs, roasted corn on cob, baked potatoes, roasted potatoes with onions, garlic, salt and pepper, and fresh herbs and some salads too.
The butterbeer is nut free, is made in a separate room. Pretzels and popcorn are ok too. The soft serve is ok at florean ice cream shop, not the hard pack ice cream. The restaurants in citywalk will be able to help you with your allergy all units have 4 chefs in them
If you need any more information or help feel free to give me a call at 321-388-2123, Chef Bob.
We never purchased any food product in the park, but it was lovely to have all this information if we did. There was a lot of fish and chips on the menus in both Diagon Alley and Hogsmeade, but obviously there would have been safe food items if Morgan had wanted to eat.
There were several shops with candies and sweets in them. This is the ingredient label on the back of Chocolate Frogs which states, “Contains Milk and Soy. Allergen information: Shares Equipment With and Produced in a Facility Containing Milk, Egg, Peanuts, Tree Nuts, Wheat and Soy.” We didn’t find one candy that didn’t have this labeling. The candies were great for gifts, but not safe for Morgan to eat.
The Wizarding World overall was superb. If you go, you have to purchase a wand! There is a map of all the locations where the wand will work it’s magic…I’ll leave it at that because that’s part of the fun figuring out how to create the magic!
There were rides and shops throughout both parks, and once again we walked until our feet swelled! We road the train, the Hogwarts Express, in between the two parks.
The next day was a rest day to pack up and get ready to fly home. We realized that we had cooked 21 meals on the 4-burner stove in the Air BnB kitchen, and no one went hungry!
If your family is like ours, and doesn’t or can’t eat out, it’s still possible to have a wonderful vacation and cook every meal yourself. With a lot of pre-planning and preparation, we had the most wonderful, magical vacation!
At the recent Food Allergy Bloggers Conference, there was an excellent session lead by Dr. Abby Herzig of WeBelay .
Dr. Herzig is a Child and Adult Clinical Psychologist who led one of the best discussions I’ve ever participated in about food allergy anxiety. The best part was the audience participation. So many Moms and Dads shared about their own anxiety, and that of their child. Some shared that their child was way too brazen creating more anxiety for them as the parent, while others were concerned that their child’s recent allergic reactions were affecting their ability to enjoy food and eat.
I had so much anxiety when my son, Morgan, was diagnosed with peanut and egg allergies in 1997 at the age of 18 months old. My anxiety was high because Morgan reacted not only foods, but also to pollens in the environment – dandelions were one of his worst reactions – and to dogs and cats. He also had weeping wounds of eczema all over his body. All of this created a fight or flight response in me every time I took him out of the house. I used to joke that Benadryl was a food group for him.
When children are too young to speak for themselves, it’s the responsibility of the parent to educate others about food allergies – and any other allergies too. And that’s a heavy load at times. How to stand up to extended family was a topic in the conference session, and many different ideas were brought forth.
Having everyone in the family over to our house was how we managed it. We cooked all the food that our son was going to eat, and we asked that none of his allergens – which grew to a list of peanuts, tree nuts, sesame, fish and shellfish – be brought into the house. (He outgrew his egg allergy by middle school.)
For some parents in the session, spending a holiday cooking for other family members wasn’t what they wanted to do. Some had made arrangements to go to other family’s homes with the caveat that none of their child’s food allergens would be served. For us, the biggest issue was the dog and cat allergies, and all of our extended family had one or the other in their homes.
At the conference, we discussed that managing extended family helps our children to learn boundaries as we set those boundaries about what is safe and what isn’t safe for our child. It isn’t easy to stand up to one’s mother-in-law, but showing a child how to do that gives lessons that no amount of talking can provide.
Another great part of the session was the support that everyone gave and received. Too many times on social media, I’ve found that parenting styles can be criticized. Food allergy accommodations are questioned by others as too lenient or too strict. When you’re looking someone in the eye during a conversation, it’s much easier to support them where they’re at, and to see their concern.
For those with children brimming over with anxiety, we spoke about the need for counseling to get underneath where the anxiety is coming from. Some children have stories in their mind about a recent anaphylaxis episode that might not actually be factual. Yet it’s important to discover what the story is, and to mitigate the anxiety.
My son has never shown much anxiety over his food allergies, even when he experienced anaphylaxis during a camping trip. When my husband called me from the ER, he put my son on the phone to let me know he was fine. My son’s first words were, “I’m not coming home.” Of course, I was an anxious mess hearing the harrowing tale of eating his first bite of fish, and I wanted to see him in person to ensure everything was okay. However, I yielded to his sense of himself, and agreed that he could stay with his Dad watching over him cautiously. Not every kid would feel that way after experiencing anaphylaxis, and that’s okay too.
If you or your child are experiencing debilitating food allergy anxiety, where depression is setting in and/or eating is becoming a difficulty for your child, I’d like to suggest: Share your feelings with a professional! You don’t need to suffer, nor does your child. Some of the strongest people I know ask for help.
If you or your child are experiencing food allergy anxiety on a situational basis, there are many articles and research online that might be helpful:
The online food allergy community can be a great resource too. There are Facebook pages for all age ranges, and various combinations of specific food allergies that are managed. Some local communities have in-person support group meetings on a monthly or quarterly basis, where you can meet people face-to-face managing a lifestyle similar to yours.
I’ve found the best anxiety reliever is to talk with an understanding friend…preferably someone who has been there!
I enjoyed another FABulous conference in Denver this past weekend with many of the top food allergy bloggers and consumer advocates.
This conference was the brain child of Jenny Sprague, who continues to run the conference along with Erica Dermer and Keeley McGuire.
My son was diagnosed with food allergies 20 years ago…before Facebook, before the Internet, before there was a support group or any food allergy conference, and before any food labeling law. About the only thing that was around was a very kind allergist who gave me copied materials from a non-profit group called Food Allergy Network (through several name iterations, it has now become FARE – Food Allergy Research & Education). It was a lonely place, and my neighbors certainly didn’t understand what it was like to try to raise a child with food allergies.
Going to the conference this weekend, I was most reminded of how grateful I am that there are so many people in the “food allergy world” now. Bloggers, parents, allergists, dietitians – all shared their experience, their knowledge, the latest research and hope. It’s not a group in which I ever aspired to be a member, but as I continue to walk the road of parenting a child – now a young adult – with food allergies, I am so thankful to be able to do so with a large group of friends.
Zac Chelini, a young adult with multiple food allergies, also spoke about his experience with bullying in grade school and beyond. If you’ve experienced bullying, or know someone who has, you can submit the experience on the website referenced above and help raise awareness of this very important issue.
The expo at the Conference is the best I’ve ever seen. It’s so wonderful to get to sample new products and foods – many of which are top 8 allergen free or more!
Enjoy Life Foods is a regular at expos and conferences, and for good reason. Their foods are free of the top 8 plus they are made without casein, potato, sesame and sulfites.
Kiss Freely is all natural, gluten and allergen free makeup, lip gloss, face paint and body cream. Their products are free of the top 8 allergens plus free of sesame, shea butter, peas, coconut, avocado and sunflower seed. I love the new body butter I discovered at their booth!
Allergy Superheroes empowers and protects allergy kids with their t-shirts, slap bracelets, buttons and Teal Pumpkins. Their focus is consistently positive and creative!
Sit By Me Bakery is a Colorado duo baking without gluten, wheat, dairy, egg, soy, peanut, tree nuts (they do use coconut*), fish, shellfish, seeds, potato, corn, yeast, artificial colors, and preservatives. They provided many of the sweets for the conference. Steve was nice enough to provide a cinnamon roll for my son, Morgan, to try. It was a hit!
The swag bags from the expo are filled with so many wonderful new treats, that I had to stop by my son’s place in Denver to share many of the goodies!
Free2b never allows peanuts, tree nuts, dairy, gluten/wheat, soy, egg, shellfish, fish, coconut, corn, mustard, or sesame in their plant or products. They are also free from artificial sweeteners, flavors, colors, sulphites, GMOs, hydrogenated oils and transfats. David continues to develop new products in an attempt to make them taste even better than their “original” counterparts.
There were probably two dozen more companies and products at the expo, so these are just a sample of a few of them. If you’re in Colorado, you REALLY want to come to this conference to sample all of the exciting new products every year.
For the past two years, Kaleo has been a major sponsor of the Conference. Evan Edwards is not only a founder and executive with Kaleo, he’s also a food allergy patient and parent. Which means that he’s just one of us. He participated in many of the sessions, learning about new research, and sharing his experience. It’s wonderful to have a pharmacy executive who is so down-to-earth. Kaleo has doubled in size as they continue to produce the wonderful Auvi-Q epinephrine autoinjector.
In separate blog posts, I will provide you some information that was shared about recent research and how to manage parental and child anxiety surrounding food allergies. Watch for those soon!
Thank you to everyone in attendance for a wonderful weekend!
The American Academy of Allergy, Asthma & Immunology recently released research on fatal anaphylaxis based upon research of deaths in the UK, France, Canada, Australia and the USA. They looked at fatalities from drug and venom anaphylaxis in addition to food anaphylaxis.
The research found that “Up to 5% of the US population has suffered anaphylaxis.” They found that fatal anaphylaxis is rare, and while drug anaphylaxis is increasing, fatal anaphylaxis to venom and food is stable. The time periods looked at for each country varied, but was at least for a time span of 10 years.
The research found that “infants and young children have the highest reported rates of food-related anaphylaxis and subsequent hospitalization, fatal food anaphylaxis in this age group is very rare indeed.” The highest risk for fatal food anaphylaxis occurs in the second or third decades (10-19 years old; and 20-29 years old). Most of the fatal food anaphylaxis occurred in people with a known food allergy where many of the previous reactions were not severe.
Another risk factor was the delayed use of epinephrine. This risk factor is the easiest to correct. Always carry your epinephrine autoinjector if you have been prescribed one!
Asthma is a risk factor for fatal food anaphylaxis, which was noted in approximately 70 to 75% of fatalities in the UK and Australia data. Yet, the data didn’t distinguish whether poor asthma control was associated with a fatal outcome.
Other risk factors were alcohol, recreations drugs and remaining standing upright in anaphylaxis. The researchers postulated that alcohol “or recreational drugs may, through disinhibition, increase the likelihood of accidental allergen exposure, mask the early warning signs of anaphylaxis, or suppress physiological responses to hypotension.” Also, alcohol can increase the absorption of food allergens into the intestine because of increased permeability.
In this research, which foods caused the fatal anaphylaxis was not reviewed.
What are the takeaways for food allergy families from this research?
Always have an epinephrine autoinjector within arm’s reach!
Be very mindful of teens and young adults and whether they are practicing a vigilant lifestyle around their food allergies. This training starts young, and children watch what we parents do, not what we say.
In our son’s school Health Care Plan, our doctor stipulated that should he experience any type of reaction, he should be laid down flat with his knees bent. She also stated that he should never be sent to the office, walking down the hallway, should he be feeling the beginning of an allergic reaction.
If your child has asthma, we have always been told that it’s important to keep it well managed to afford the best possible outcome if an allergic reaction occurs.
Have a frank, honest talk with your child about alcohol and drugs and the impact on all the areas of their life, but especially the consequences when managing food allergies.
If you’d like to read the full text of the research you can do so here.
At the recent FARE (Food Allergy Research & Education) walk in Denver, my son, Morgan, and I had the opportunity to have a long chat with Dr. David Fleischer of Children’s Hospital of Colorado. The conversation brought up a lot topics around living with severe food allergies.
When Morgan was 14 years old, he was sent by our allergist in Colorado Springs to see Dr. Fleischer, who was then at National Jewish Health in Denver. Morgan was going to have a food challenge to eggs and to pinto beans, and she didn’t want to have the challenge in her office because of Morgan’s past severe reactions and anaphylaxis to foods.
Morgan had to go through a battery of tests – a skin prick test and a blood test to ensure that his levels to both foods was low enough to warrant a food challenge, an asthma FENO (Fractional exhaled nitric oxide) test and numerous other breathing tests – before undergoing the food challenges. I was very impressed with the thoroughness of Dr. Fleischer, and the fact that the hospital prepared all the food to ensure proper dosing for the challenge.
He passed both challenges, which were done on separate days. Now 7 years later, we run into Dr. Fleischer at anything food allergy related in Colorado, and he always remembers Morgan and me. He’s very committed to assisting children with food allergy, eczema, and asthma and their families.
During our conversation at the FARE walk, we covered many topics. The most interesting topic was all of the ongoing research to find a cure for food allergies.
Morgan has never had an interest in participating in any of the studies, and at this point he is likely too old to do so under the guidelines of many research studies. At 21 years old, Morgan is accustomed to living with allergies to peanuts, tree nuts, sesame, fish and shellfish. He’s not interested in eating any of these foods, and he’s definitely not worried about cross contact to the point of limiting his activities. He is appropriately vigilant, and takes the time to prepare for any events that include food, and always carries his Auvi-Q’s.
For other food allergy families, who aren’t interested in trying out treatments, or participating in research studies, our family “gets it”.
Dr. Fleischer had commented that for Morgan, life is easier managing food allergies than being a study participant in the hopes of gaining tolerance. It was nice to get affirmation from Dr. Fleischer that Morgan can live a complete life, with all kinds of opportunities and adventures, managing his food allergies throughout adulthood.
Through the years I’ve shared our stories of managing food allergies (in our now college age son). Rarely have I shared stories about our adult daughter with celiac disease and mast cell issues. This time, I’m going to share about her recent experience, since there are so many things we learned.
Earlier in July, Michaela got overheated while being outside in the Colorado sun enjoying a festival. She was mostly inside a tent, but since there was no electricity, the air was stale and approaching 100 degrees. She estimates she drank 8 bottles of water during 4 hours of being at the festival trying to keep herself hydrated. She knew that she needed to keep pushing the fluids, even if it activated her interstitial cystitis. It’s a constant balancing act for her to drink enough to stay hydrated, but not end up in the bathroom every 30 minutes.
She began to feel drained and went back home and drank more water thinking she was still dehydrated. Her first mistake, we learned, was to not drink fluids with electrolytes. With her mast cell disorder centered in her gut, she is very careful to eat only organic foods and pure water. She doesn’t drink Gatorade because of the coloring in it, but there are electrolyte alternatives, we’ve since learned!
A few hours later she began vomiting every few minutes and having diarrhea, and felt thoroughly awful. At that point, I felt she probably needed an IV of saline to help her body get regulated. On a Sunday evening, there wasn’t any choice but to go to the Emergency Room. At the ER, we told them about her mast cell disorder and wondered if she could be triggered by the heat of the day and having a mast cell reaction. The nurse on duty was somewhat aware of mast cell issues, which was nice. They put in an IV, gave her saline, and Zofran (to ease the nausea), and gave her oxygen since her pulseox was low. She still wasn’t feeling great, so they gave her 25 mg of Benadryl with some extra saline so it wouldn’t burn on the way in.
Shortly thereafter, she began saying “I feel so disconnected” over and over again. Then, within a few minutes, she had a grand mal seizure right in front of my husband and me!
We’ve been through a lot of medical issues with our children through the years, but nothing compares to the horror of observing a seizure of this magnitude. It lasted for about 20 seconds, which seemed like 20 years. She was frothing at the mouth, with a horrible guttural sound emanating. Her arms were drawn up to her chin, wrists bent, while her face and chest turned beet red. Her eyes rolled back into her head and she became unconscious. We screamed for help and the medical staff came running and gave her 2 mg of Ativan.
Once the seizure stopped, they took her in for a CT scan of her brain to see if there was something occurring there, and she had another seizure, from what we were told, during the scan and received another 2 mg of Ativan.
Since we were at an Urgent Care Facility that transforms to an ER in the after hours, they needed to get her to a hospital for observation overnight. She was transported by ambulance to St. Francis Hospital, and my husband joined her for the ride while I drove behind in the car. She was completely unable to respond to any commands during the ride to the hospital. My husband said that the EMTs kept talking to her trying to get her to squeeze a hand or say something. There was no sign of any cognition or awareness at that point.
I called our son, Morgan, during my drive to let him know what was occurring. He is in Denver working this summer, and by this point it was 10 pm. He jumped into his car to make the hour drive to the hospital.
By the time I arrived, she was processed into a room. We were told there was nothing on the CT scan that would indicate it was a brain disorder causing the seizure. The hospital doctor thought that it was too much water, and not enough electrolytes since her sodium count was at 126. (Her normal sodium count is 140 from previous blood tests).
Morgan arrived by 11:30 pm and walked into the room, got really close to Michaela’s face and called out her name. It was the first sign of any recognition or response when she mumbled “back hurts” and then a tear rolled down her cheek when he was talking with her.
She slowly was able to respond to commands, but was completely confused as to where she was and why. We would go through the entire story, and 15 minutes later, she would ask again, “Where am I?” It was frightening, and we worked on not jumping to conclusions.
My husband remained in the hospital overnight with her, while Morgan and I went home to catch a few hours of sleep. All night she was writhing in back pain as the doctor and nurses tried to figure out why. They took an x-ray, which showed nothing broken in her back, and they summarized it as muscle spasms from the seizures.
The next day Michaela was sent home with instructions to do a follow up with a neurologist and her primary care doctor. The chest x-ray showed no issues of aspiration, so we felt she’d do better at home getting some sleep. She had virtually no short term memory though. We were frightened that there was a serious cognitive issue occurring, and spent a lot of time Googling seizure side effects and the aftermath.
Within 24 hours of her release, she was running a 103 temperature, and back to the emergency room we went – this time to the ER attached to St. Francis hospital. The ER doctor was concerned about meningitis, so a spinal tap was ordered in the ER. It thankfully showed negative. Then the chest x-ray came back and showed that she had aspiration pneumonia. She was hooked up to an IV for saline, and put back on oxygen because her oxygen percentage was plummeting into the low 80’s.
There wasn’t one doctor or nurse who was aware of mast cell activation disorders, so we were explaining over and over again what medicine to give her and what not to give her. Thankfully, each person was receptive enough to listen and to learn.
She was put into the hospital overnight again. She began receiving IV antibiotics immediately. She cannot tolerate Tylenol or any NSAIDS (NSAIDS are a mast cell degranulator and not recommended for those with mast cell issues). Therefore, the nurses brought cool cloths and ice packs to bring her temperature down.
Her back pain was still horrific, so she was started on an IV pump of Fentanyl, the only pain medication suggested for mast cell patients, other than Tramadol. That began to help the pain subside, and to allow her to rest.
The neurological tests were ordered while she was in the hospital. She had an MRI and an EEG of the brain. Nothing appeared to be abnormal, which was an incredible gift. The short term memory loss, we were told, was a normal by product of the seizures and should get better over time.
An MRI of her lumbar spine showed two bulging disks, which were the source of all her back pain. It was postulated that the seizure caused these, which is amazing that the body can hurt itself so badly!
Since Michaela owns a pet sitting and dog walking business, she was trying to keep up with everything while in the hospital. The short term memory loss made for some interesting issues as I tried to work her phone and to ensure all the dogs, cats, and pet sitters were taken care of! At one point, I had to ban her from being on the phone unless I was there to ensure she didn’t schedule something and then forget!
While she was in the hospital, my husband and I were running home to cook her safe foods to eat and then transporting them to her room. There was nothing on the hospital menu that was organic. And the hospital had no refrigeration that we could use, so we were bringing coolers from home or getting ice from the nurse’s station and adding it to mini tubs in the room to keep her food refrigerated.
It was a very long week. By Friday, we were both so exhausted from tag teaming. I slept in the hospital for 3 nights (if you’d call 3 hours of interrupted sleep really sleeping!) and then went home for a short nap. After that I monitored her pet sitters and her business during the day. My husband slept at home and then cooked safe food for her. He worked from her bedside during the day, and continued to train doctors, nurses and CNA’s about mast cell issues and celiac disease.
The infectious disease doctor wanted to release her with oral antibiotics since she’d had 3 days of IV antibiotics by the time she was being discharged. We nixed that idea since she has had so many gut issues with antibiotics, and were thrilled that she was tolerating the medication as well as she was. The doctor agreed to have a PICC (peripherally inserted central catheter) inserted into her arm to her heart, and to have her Dad and I taught by a home healthcare nurse how to administer the antibiotic every 6 hours around the clock for another 5 days.
In the almost 4 days she was in the hospital on the second round, we ran into only one CNA who had heard of mast cell activation. She had just taken a biochemistry class in school where it had been discussed. There were so many conversations where we had to explain what could occur if she was triggered by, for example, contrast dye in an MRI. There is so much need for the medical community to be trained on Mast Cell Activation!
Once home, we began the around the clock antibiotic administration. It was almost like a feeding schedule of a newborn baby.
After being on antibiotics for a few days at home, she began to experience burning mouth – a sign of oral thrush. We then added Fluconazole to her list of drugs administered through her PICC line.
When she visited her primary care doctor, as a follow up to the hospital visit, he thought that the heat had triggered a mast cell “event” creating the massive purge of vomiting and diarrhea that she experienced. On top of that, her not drinking electrolyte water created a sodium imbalance. The two issues combined to drop her sodium suddenly, creating the seizure. That was his best guess as to the cause of the seizures. We may never know for sure. However, we’re very grateful that it doesn’t appear to be anything related to her brain function.
She visited a wonderful chiropractor that has helped to re-align her back so that the 2 bulging disks are slowly dissipating.
With mast cell issues, and the various autoimmune diagnoses that she has, keeping her body in balance is a daily struggle. She has learned that she’s going to have to be FAR more careful about being in high temperatures and getting overheated. She’s also discovering many electrolyte drinks to enjoy.
It’s amazing what the body can go through, and that it can heal! We so appreciate all the love and prayers you have provided to her and to our family through this harrowing episode.
If you’re like me you’re prepared for an ER visit for an accidental food allergy exposure – even if you hope it never happens! However, when there’s an ER visit for a non-food allergy related event, different issues can come up in the hospital, and it’s vitally important for our grown children to know medical details about themselves. We learned and confirmed this firsthand this past weekend.
My college age son is working and living in Denver this summer. He awoke last Saturday morning feeling like he was catching a cold. Within a few hours, this turned into severe stomach pains above and around his navel, especially on the lower right side. After 7 hours of feeling worse and worse, with oncoming rounds of nausea, he called my husband and I via Facebook messenger (more on that detail below!) We went through the usual questions of “did you eat anything new?” and “what are your symptoms?”
After listening to his complaints and the severity, we were concerned about an appendicitis or a gallbladder attack (since gallbladder removal is common in my family). He hadn’t eaten anything new, and didn’t feel like he was dealing with anaphylaxis presenting itself differently. We felt he needed to get to the ER to be seen by a doctor and to have tests run. We have learned to not mess around with medical issues with Morgan, with his past history of anaphylaxis and other illnesses in college.
After learning that he was alone in his apartment – all 3 roommates were out of town – we needed to figure out what to do at 8pm on a Saturday evening to get him to be seen by a doctor. He was feeling so awful that he didn’t feel like he could drive, and didn’t want to wait an hour for us to drive to Denver to pick him up. After several text messages, he was able to find a friend in Denver willing to come pick him up and take him to the ER at Swedish Medical Center, which is less than 2 miles from his apartment.
His phone battery had been ceasing to stay charged, along with the phone having a shattered screen, so everything was being coordinated on an iPad with no data plan utilizing Facebook messenger on wifi, and texting, with no “regular” phone voice communication . Oy!
Morgan was picked up by his friend within 10 minutes, and we jumped in the car for the one hour drive to Denver. Thankfully that late at night there was less traffic. The same route during the day could take twice as long, and believe me every minute feels like an hour when you’re trying to get to your child in the ER.
Once we arrived, Morgan had already met with the physician’s assistant, reviewed his food allergies, and explained that he has had adverse reactions to pain meds (vomiting) when she offered him some pain relief. The PA ordered a blood draw, an IV saline drip, and a CT scan of his abdomen. When she heard that Morgan was allergic to shellfish, she wanted to ensure that the iodine dye in the CT scan was going to be safe. (Note: this is an old allergy myth that those allergic to shellfish will be allergic to iodine. The proteins are not the same, and therefore there is no risk. However, you can be allergic to iodine, and those with mast cell issues can have severe reactions to contrast dyes.)
We were very impressed with the thoroughness of Swedish Medical staff – physician, physician’s assistant and registered nurse – and their attention to the details of Morgan’s allergies and allergy history. I’d rather they be extra cautious about his food allergies than to blow past the long list of food allergies that he has (peanuts, tree nuts, sesame, fish and shellfish). They also listened to his history of pain medication issues, and honored his wishes to not take any of these medications.
This was the first time that he’s been over 21 years old at an ER. My husband and I were basically observers. All forms were signed by him, and all medical questions were answered by him. Of course, the required copayment was paid by us, since as a student, he is still on our insurance!
It took only a little over 90 minutes from the time he entered the ER to receive results of the blood tests and CT scan. Very impressive for a Saturday night! The CT scan showed no stones in the gallbladder, and the appendix appeared to be fine. Therefore, the stomach cramps could be from the virus he had, from an ulcer, or the start of some issue much larger – like the gallbladder or appendix – and it was too early for them to see anything on the scan. Who knows exactly what it could have been, in other words!
We rang in Father’s Day at midnight waiting for a little medication to be delivered. The IV saline drip was definitely helping Morgan feel better, even though he didn’t believe he was dehydrated. The doctor gave him a ” digestive cocktail” of Pepcid, Maalox, Lidocaine and Benadryl, which tasted awful but helped the stomach and intestinal cramping tremendously. He also walked out of the ER with prescriptions for more Pepcid and Zofran, an anti-nausea drug.
One of Morgan’s roommates had arrived back at their apartment while he was at the ER and was willing to be ‘on call’ should anything happen overnight necessitating assistance. As a Mom, this was a hard one – to let him go back to his apartment instead of coming home with his Dad and me. He’s a young man now, and he believed this was the best choice for him.
At the time of this writing, he is feeling much better and we’ve chalked up the ER visit to “who knows”! We’re very grateful Morgan knew to not wait until the middle of the night to ask for help. And we’re also grateful for the staff at Swedish Medical who treated him with utmost care and respect toward his food allergies and his wishes.
It is vital for our children with food allergies to know the details of their food allergies and medical history. I’ve written a blog post here about what we ensured Morgan knew before he went to college. Morgan’s previous issues with pain medications aren’t considered an allergy, but they are definitely pertinent for him to share with a doctor.
My husband and I enjoyed a traffic-free drive home to Colorado Springs in the early morning hours of Father’s Day grateful that no surgery is in Morgan’s immediate future. And hoping that he gets his phone fixed this week!
Food Equality Initiative (FEI), based in Kansas City, Kansas, provides hunger relief for those with celiac disease and/or food allergies through its pantry of safe foods for families in need. As its website states, “Food Equality Initiative, Inc. (FEI) is a recognized non-profit, public benefit corporation established in 2014 by Emily Brown and Amy Goode, to support the low-income food allergy and Celiac communities by providing safe, healthy gluten free and allergy friendly food, nutrition education and advocacy.”
For those of us managing either food allergy or celiac disease, we know how expensive it is to purchase safe foods. Yet, imagine if you couldn’t afford to purchase safe foods for your child! And to make matters worse, when you went to a food bank, there were no safe foods for you to obtain. Or imagine if you applied for WIC (Women Infants & Children) only to find out that there are no substitutions for peanut butter, milk or whole wheat bread. This is why FEI was created.
FEI is advocating for WIC substitutions in addition to the following, as quoted from their website:
Establish best practices for the charitable food system to identify, sort, store, and distribute special diet foods
Establish nutrition policies that reflects the needs of food insecure individuals with special diets in school and community settings.
Push for legislation that provides Insurance coverage of gluten free and allergy friendly foods for a medically necessary diet.
The amazing part of FEI is that not only do they have a pantry in Kansas City for families with food allergies & celiac disease to shop in. They could also box and ship safe foods to families requesting such from around the USA if they had more funding. This all costs A LOT of money!
This is where FEI could really use the assistance of the food allergy community. There are many areas of the USA where families are in need of having a pantry of safe foods set up, similar to what FEI has created in Kansas City. If you have the desire to create this in your community, please contact FEI through their website here.
Donations of money are always appreciated. You can donate directly to FEI on their website here.
If you’re reading this blog post and need assistance in affording safe food, please click here for more information about qualifications.
I applaud Emily Brown and Amy Goode on creating this wonderful organization, and I encourage each of you to support families in our community that can’t afford to provide safe foods for their children by donating your time or money to FEI.
Food Allergy Awareness Week is May 14-20 this year. Several of the food allergy non-profit groups have resources and suggestions for you to increase food allergy education and awareness in your community.
FARE (Food Allergy Research and Education) has resources and links here. FAACT (Food Allergy & Anaphylaxis Connection Team) has ideas of activities here. Kids with Food Allergies has social media awareness tools here. Turn It Teal has a listing, and an ability for you to suggest a location, of all buildings lit in teal (the food allergy awareness color) during the week here.
There has been a big push to get elected officials to declare the week with a proclamation. I’ve always felt that unless this is followed by specific education, and awareness information disseminated to the public about food allergies, or a food allergy awareness event, there is little gain for the food allergy community with a piece of paper.
When my son was in school at a public K-12 school district, our Food Allergy Task Force would create a press release for each of the 30 schools in the district (elementary, middle and high school) detailing information about food allergies – how many children have food allergies, what the symptoms of an allergic reaction are, and how to have fun without food! These public service announcements were very valuable and generated discussions for families, teachers and administrators. This Task Force is celebrating 10 years of existence this spring, and continues to create more food allergy awareness throughout the school year.
For May 14-20 of this year, create some food allergy awareness in your family, with friends and/or in your community! It may save a life.
Betsy Craig and her husband, Rocky, started AllerTrain, an ANSI accredited food allergy and gluten-free training course offered by MenuTrinfo (which, according to their website is “dedicated to bettering the food-service industry by providing two major services: Certified Nutritionals and food allergy/ gluten-free identification and education”.) The course teaches foodservice professionals about the top foods causing food allergies, proper protocol for preparing food so to avoid cross-contact and to how better serve diners with special dietary needs. This will help restaurants avoid food allergy related incidents, and prepare them to handle such incidents, should they occur.
Where did the idea of AllerTrain originate and how long have you been in business?
AllerTrain was born out of my original business MenuTrinfo (mash-up of the words menu – nutrition – information). Once we set up our company nutritional software for industry in 2010 my husband realized he could tag allergens in menu items for the restaurants we provide nutritional service for. I knew that in order for it to help those with food allergies, and this new movement of gluten-free, that training needed to be in place to make a difference. Having food allergy friendly food was only step one in keeping diners safe and meeting special dietary needs.
I reached out to others in the food safety, restaurant, food nutrition, and training space to begin to build a training program I called AllerTrain. This was October 2010.
Can you explain AllerSTAR and MenuTrinfo?
AllerSTAR takes learning objectives taught in the AllerTrain educational programs and makes them singular training points taught through a monthly poster and toolkit program. This is to enhance the learning in AllerTrain and also to keep the topics of food allergies, gluten free and proper standard operating procedures on top of mind. This poster training program is for all employed at a restaurant or college who does the month AllerSTAR program. Teach, test and sign off on the learning object creates ownership with the industry and staff at any food location that takes part in AllerSTAR.
I’ve seen that you’re training many chefs in colleges who have Sodexo. What other groups are you training?
Sodexo was a clear, eager and super helpful early adopter partner for AllerTrain but we have many folks who have trained within AllerTrain courses. Folks at almost all Ivy League schools, key brands like Eat’n Park in PA, Glory Days Grill in the New England area, a part division of Panera Bread in TN, WV and VA, Cattlemen’s Steakhouse in CA, universities and colleges throughout the US (in the FARE college training program and out). College food service management companies like Parkhurst, Culinart, Aramark, and Chartwells. Many different private schools, a number of public K-12 districts, hundreds of schools in Texas, Training centers throughout the country, Amtrak, over 300 health officials in Virginia, over 75 food service professionals that work within the federal prison system, Food service managers at airports in a number of major cities, the head of F&B for the Olympics, and the list goes on and on…..
Can you tell us what is involved with training a chef at a restaurant and the staff?
A combination of training of the disease of food allergies, Celiac and intolerances, best practices for front and back of house, policy and procedure assistance and emergency protocol. Ongoing training is also a major key to keeping folks trained and confident.
Does your training cover cross contact?
Yes there is a great deal of focus on cross contact. It is key to successful food prep, cooking, delivery and satisfaction.
Do you suggest that restaurants and dining halls use separately colored utensils in the preparation of meals for food allergy and/or gluten free customers?
We fully and completely promote this concept and encourage the use of separate colors for food allergies and Gluten-free. We use the same color for both of these special dietary needs, as the method to keep people safe is the same. That is also why we teach both in AllerTrain. The teaching and tools are the same and desperately needed for success.
Do you provide ongoing training for a site and their employees? Or is it just a one time training?
Ongoing training is addressed through the AllerSTAR program. Also many locations and universities have their staff go through AllerTrain once a year despite the fact the certificate is good for 5 years. They want to keep the information top of mind yearly.
Thank you so much Betsy for creating this wonderful program to keep those with food allergy safe when dining out or in college!
When my son, Morgan, started kindergarten in the Fall of 2001, we had already experienced every private preschool in our city denying my son entry. There was minimal food allergy awareness at that time, and no one had heard of a child reacting to touching peanuts! Preschool teachers and administrators were afraid to learn how to administer the EpiPen and didn’t want to take on the liability OR they didn’t want to provide an allergen free classroom. Therefore, they said they didn’t want him as a student.
This was heartbreaking to my husband and I. We had no idea what it felt like to be denied schooling for our child. I had big thoughts about filing a lawsuit against the various preschools, however I soon realized that I didn’t want to fight for Morgan to be admitted to a school that didn’t want to take proper care of him.
I continued my search, and my son finally landed in a public preschool within our school district, where the teachers were more than willing to provide an allergen-free classroom and to learn how to administer the EpiPen should that be needed. Thankfully, he had a wonderful experience, and never had an allergic reaction since they removed all of his allergens (peanuts, tree nuts, sesame, fish and shellfish) from the classroom.
Once he started kindergarten, the elementary school counselor had the foresight to put Morgan on a 504 Plan. She had already met with the school district 504 Coordinator prior to the start of the school year, and had received approval. This provided accommodations for him to have equal access to the curriculum. The Plan was pages long outlining classroom safety, EpiPen training, field trips, playground monitoring, and stipulations for all the other classrooms he would visit in a school day being allergen-free in addition to many other items.
This was long before the ADA Amendments Act of 2008 when eating was added as a “major life activity”, so the school district was really stepping out to put Morgan on a 504 Plan, (which he kept from kindergarten through 12th grade). I know many of you reading this are likely still fighting for all the 504 accommodations you believe your child needs. We were completely blessed with a school district who not only understood the law, but also were child-centered and wanted to create a safe, educational environment in which every child can learn.
Parents of other children in the classroom (and the school!) weren’t happy about the accommodations, especially if it meant that their child couldn’t eat a Snickers bar for snack. The school Principal kept a strong backbone, and stood up for Morgan (and me!) more times than I can count. She knew the law, and she knew what was right and what was necessary for Morgan to be in school safely.
If you’ve been reading my blog (and newsletter before that), you know that we had many ups and downs through the years battling other parents bullying and ignorant teachers. Yet overall, our experience was good, because 1) Morgan never did experience an allergic reaction and 2) if there was ever a question that the 504 Plan wasn’t being followed, a Team meeting was immediately called and the Plan prevailed.
During Morgan’ senior year of high school, he applied for and received the Boettcher Scholarship, a 4-year, full ride scholarship (available only to Colorado high school seniors) to any Colorado college of his choice. Only 40 scholarships were given his graduation year, which makes it the biggest honor of any Colorado senior. This is what equal access to the curriculum can yield from a Free Appropriate Public Education.
With all of our experience as a backdrop, when I read about the confirmation of Betsy DeVos as the Secretary for the Department of Education, after a hearing in which she, at best, is confused about the IDEA, and at worst, doesn’t realize it is a Federal law, I think of my son. What would have happened to his education had he not been admitted to an elementary school because of his food allergies? Or if he had been admitted, but had to worry every day about allergens in his classroom? You can’t learn in those situations. And it’s why we food allergy parents need to ensure that the IDEA remains in the forefront of Ms. DeVos’ mind as she seeks to revamp the entire public education system.
I’d like to introduce you to Steve & Angie of Sit By Me Bakery, a Branson, Missouri based company that creates wonderful cakes, pies, bundtlettes, cupcakes and cinnamon rolls that are baked without wheat, dairy, egg, soy, peanuts, tree nuts, fish, shellfish, seeds, potato, corn, and yeast! And they deliver!
For those of you who have attended the Food Allergy Bloggers Conference in Denver, you got to taste these wonderful treats! Not only are they delicious, they are also beautiful!
Hello Steve & Angie! Could you please share with us what food allergies your family manages?
Hi! Thank you for interviewing us! I (Angie) am allergic to milk, tree nuts, lettuce, and yeast. Steve is allergic to eggs, soy, and corn, and lives with Celiac Disease. Our oldest son is allergic to tree nuts. Our youngest son is allergic to tree nuts, soy, shellfish, and a long list of seeds.
How did Sit By Me Bakering come into being?
I write a blog about mental health and chronic pain issues, and Steve is an environmental scientist.
A year ago while at Enchanted Grounds, a coffee shop that sells board games, and hosts gaming meet-ups, I turned to Steve and asked if he thought we could open a similar establishment, geared toward the food allergy community. He said yes! That’s how Sit By Me Bakery was born.
Are your children part of the baking process? What do they think about this wonderful business?
While they do cook and bake, our sons do not help with business baking. They are, however, willing to be taste-testers, which seems like a great job, but actually requires a good measure of courage! They are excited about our business and we’re grateful for their interest and encouragement.
How did you find yummy recipes for cinnamon rolls, cakes, bundtlettes, pies and cupcakes without the top 8 plus without yeast, corn, seeds, potato and corn?
We started by converting old, basic recipes from the Betty Crocker Cookbook, but it didn’t go well. We read a lot, studied ratios, and began building recipes from scratch. Our current bakes are the culmination of five years, countless tears, and many, MANY experiments in the trash! Remember those taste-testers I mentioned? You can thank them for our delicious bakes! They worked very hard!
What is your best selling item?
When we first began, people mainly purchased cupcakes, but now cinnamon rolls are the clear winner! We often hear, “it’s been years since I had a cinnamon roll!” or even more touching, “my child has never had a cinnamon roll, and now they can!”
Do you plan on having a store front in the future?
Our vision is a commercial space where we serve desserts and coffee, and host meet-ups for food allergy individuals and families. It would also be great to meet the needs of more people by shipping bakes and getting our mixes onto market shelves.
Is there anything else you’d like to share?
Thank You to Colorado’s food allergy, Celiac Disease, and EoE community! We look forward to growing into a bakery that not only delivers your birthday cakes, but also invites you into a safe space for a slice of pie and a coffee.
Thank you Steve & Angie!
Nicole’s Note: I ordered a cake from Sit By Me Bakery for my son’s 21st Birthday to be delivered to his apartment near the University of Denver (when the company was still located in Denver) to surprise him. I’ve always had to bake cakes for him because of the cross contact issues in all the bakeries near our home in Colorado Springs.
My son said the cake was absolutely delicious – it’s the chocolate cake with vanilla frosting and ganache on the top – and a wonderful way to celebrate his birthday with his 3 roommates!
*** UPDATE ***
Angie and Steve experienced a sudden change of circumstances and subsequently moved their family and business back to their previous home of Branson, Missouri in January 2018. Their storefront bakery will open in Historic Downtown Branson in May 2018, and they look forward to serving both the local community and tourists. They visit Denver frequently, and have plans to make deliveries a part of those trips. In addition, some Sit By Me Bakery treats will soon be available for mail order! Angie and Steve thank the food allergy community for their continued support.
Kiss Freely products are free of the 8 major allergens and then some! They avoid the use of other potential allergens such as sesame, shea butter, peas,coconut, avocado and sunflower seed. Below is an interview with Jennifer Kurko, the Founder of Kiss Freely, to find out about these wonderful products.
Hello Jennifer. Can you tell us how you thought of creating Kiss Freely?
My oldest daughter was diagnosed with multiple food allergies when she was 9 months old. I really thought we were beginning to navigate life with food allergies pretty well. Until one night when I kissed my daughter on the cheek and she broke out in horrible hives. I knew it was not from the food I had eaten because we keep a house that is free from her allergens.
It actually wasn’t until a few days later that I realized it was my lip balm. It contained almond oil, Up until that moment, I had not thought to look at what was in personal care products. I went through everything in the house and threw out almost all our lotions and lip balms. All my makeup. I wasn’t able to find a safe line of products and as most food allergy moms know, you are already making a ton of food so making my own lip balm didn’t seem like too much of a stretch!
From there I began making body butter and make up. Friends began asking me to make them products. My daughter one night at dinner said, “I can’t be the only one who needs special lip balm. You should sell them.” We formed Kiss Freely so that people who did need “special” lip balm and other products would have those options.
What allergies do you manage in your household?
My oldest daughter is allergic to dairy, eggs, tree nuts, peanuts, sunflower seeds, flaxseeds, beef and sesame. My youngest daughter is allergic to eggs and is in the process of being tested for EoE and celiac disease.
What makes Kiss Freely so special for the allergy community?
Kiss Freely is unique in that it is the only cosmetics and personal care items to cater to the food allergy community. It is top 8 free. I also took great care to make sure we did not include other highly allergic ingredients so we are free from a lot of thing such as coconut, sunflower, corn.
I completely understand cross contamination. Our workshop is top 8 free. We use dedicated equipment for all our products.
I also wanted the products to be as natural and environmentally friendly as possible, so all our products are vegan. We use organic ingredients whenever possible.
I also take custom orders. They are my favorite because I know someone is able to participate fully in an activity or finally wear their favorite color lipstick after years of being allergic to it. I make a ton of custom dance orders and I am in the process of making the black under eye color for a young baseball player. I cry every time I get a picture of the person wearing our products.
What is your top selling product(s)?
Orange lip balm is our best seller. Our face paint is a close second though!
I love the face paint that you sell. Have you had any customers that can’t tolerate this product?
It was so nice to see so many kids get to use face paint for the first time! We have not had any customers who could not tolerate it. I try to use the least amount of ingredients as possible in every product. The products are simple, natural and that really helps most people be able to tolerate the ingredients.
I see that a portion of your income goes back to food allergy organizations. Which non-profits do you support?
We have supported FARE and FACCT both locally and nationally. We also really like to be involved with supporting local allergy and advocacy groups. That’s the wonderful part of growing as a business is being able to give more back and be able to make a bigger impact in the food allergy community.
Is there anything else you’d like to share with us?
We are always looking to create new products. We hope to have shampoo and mascara in the next few months. Longer term, we hope to create a safe sunscreen.
Thanks so much Jennifer!
Note from Nicole: My daughter, who has celiac disease and a mast cell disorder loves these products. She too has had multiple reactions to other makeup and has thoroughly enjoyed the products made by Kiss Freely.
There will be 3 epinephrine autoinjectors on the market effective February 14, 2017: the EpiPen, Adrenaclick and the Auvi-Q. All three devices are available in a Junior strength for children, and an adult strength.
Listed below are the pros and cons of each of these devices based upon my experience and upon the information available on their websites:
The EpiPen has been around since 1977, and owned by Mylan since 2007. There has only been one recall that I’m aware of, which was in 1998 when Meridian Medical Technologies manufactured the device. Almost 1 million devices were recalled since they weren’t providing effective doses of the medication.
The Adrenaclick has been on the market since mid-2013. The training video states that it needs to be held for 10 seconds after administration.
The cost at CVS pharmacies. With a $100 coupon, the cash price is $9.99.
The lifespan. Adrenaclick’s have an expiration date at least 24 months out.
Less bulky than the EpiPen.
No trainer comes with the package. You will need to contact the company and request to have a trainer sent to you. You can do so here.
Fewer people have been trained on the Adrenaclick in school systems and elsewhere. This may change as more people purchase the device and bring it to school, etc.
The cost at approximately $400 with high deductible policies if you don’t purchase the device at CVS.
The needle is exposed after use.
You need to pull both tabs off of both ends of the device before administering it. This can make for confusion as to which end to use for injection, even though it has a red tip. Seconds count in an emergency, and a layperson may have more difficulty with this.
The Auvi-Q was originally manufactured by Sanofi, and was introduced in January of 2013. A recall of all devices occurred in October of 2015 when two dozen of the devices were suspected to have not administered the correct amount of medication. Sanofi no longer manufactures Auvi-Q. Instead Eric and Evan Edwards, the inventors of the Auvi-Q, brought the manufacturing back to their company, Kaleo Pharmaceuticals. Both Eric and Evan, and their children, have life threatening food allergies.
The Auvi-Q training video states that the device needs to be held for 5 seconds after use.
The device can talk anyone through the administration of epinephrine.
A trainer comes with a prescription.
Size. It’s about the size of a thick credit card, which makes it easy to carry in a front pocket for men.
Cost. Kaleo is promising $0 out of pocket cost, even for those with high deductible insurance!!
The needle is not exposed after use.
The makers of Auvi-Q have food allergies themselves, as do their children. In other words, they are one of us – the food allergy community AND they have a social conscience when it comes to pricing autoinjectors.
The previous recall may be on some people’s minds; however, with the manufacturing moved in-house, I believe this issue has been resolved.
The lifespan of at least 12 months. But if you’re paying $0, I don’t believe that’s as big of an issue!
I was the woman at the end of the video clip who isn’t so thrilled about the Adrenaclick being offered for $109.99, and I’d like to tell you why!
First off, there’s a confusion that the Adrenaclick is the generic EpiPen. This is not true. In fact, a local CVS pharmacy that I called tried to tell me that the Adrenaclick is the generic EpiPen!
(Side note: Mylan is offering the brand name EpiPen as a generic at a $300 price tag for a two-pak. The brand name’s price tag currently runs upward of $600, however there are coupons that can bring the price down by up to $300. Cigna also announced on 1/12/17 that they will no longer be honoring prescriptions for the brand name EpiPen, only the generic.)
If you want your allergist to prescribe an Adrenaclick, you will need to have a prescription specifically written for the medication. And if your allergist is like ours, they may not prescribe it. (More on that later).
Next, to obtain the $9.99 price that’s quoted in the video for an Adrenaclick, you may need to pay out of pocket the $109.99 at CVS, submit a rebate form to the company, and wait for the $100 refund. To me, that’s not the same as a $9.99 price at the pharmacy. And remember you have to purchase the device at CVS in order to get this price.
As I said in the clip, I’ve been trained on the Adrenaclick. It isn’t near as easy as the EpiPen to use, nor is it as easy to train others, (especially since the package DOES NOT come with a trainer). It was for this reason that our allergist was not willing to prescribe Adrenaclick for our son prior to his study abroad in the fall of 2016. With him being in different countries where different languages are spoken, and eating different foods, she didn’t want to exacerbate the issue with him having a new autoinjector that he hadn’t ever used before nor had never trained anyone else how to use.
Many K-12 schools and school nurses are not trained on this device yet. If you plan on purchasing this autoinjector, make sure that everyone who could potentially need to administer it has ample training and feels comfortable using it. What may seem obvious to you or me, as an allergy parent, isn’t so obvious to a school administrator or teacher as far as the difference in this device and the EpiPen.
The Adrenaclick training video states that the device should be held for 10 seconds, instead of the current 3 seconds for an EpiPen. And, if you use the Adrenaclick, the needle remains protruding. I always disliked this about the EpiPen prior to its most recent redesign. I very much like that now the used EpiPen has the needle protected to ensure that no injury occurs after injection.
I am excited for competition in the marketplace, and I’d love nothing more than to have an epinephrine autoinjector cost just next to nothing!
I’m really excited about the reintroduction of the Auvi-Q, which should occur within the next few months. What’s really great about it is that it talks the user through the steps to administering it!
The Adrenaclick is just too similar to the EpiPen to cause enough confusion for the administration of the device to be compromised. It’s not a good alternative for our family.
Shelter in Place requires that you remain in your home or the location where you currently are situated. This can be very problematic if you haven’t stocked up on your child’s safe foods or medications at home; or if you are stuck in a store without an EpiPen!
Here are some of the ways that we have ensured that we are always prepared should a Shelter in Place be activated for our home, or activated when we have left our house:
Discuss with your family every individual’s needs, and have a box, envelope or carrying case for all items listed below.
Always have two unexpired epinephrine autoinjectors on hand. (This means that autoinjectors are always carried, even if eating isn’t planned). At home, we have at least two more as a backup, plus multiple sets of expired EpiPens, just in case!
Have a working nebulizer, along with unexpired medications, and clean apparatus tubing and mouthpieces. This is difficult to keep on your person when leaving your house, so we had an inhaler and spacer with us at all times, when our son was younger and his asthma was more active.
Have extra asthma medications and spacers on hand.
Any other medications that your child may need – Benadryl, Zyrtec, etc. – need to be on hand and within expiration dates. We always keep at least a 30 day supply of all medications.
Keep safe foods in large quantities on hand. Running down to the last slice of safe bread, or allergen-free milk, before re-ordering will make for grumpy children. And it will inevitably occur when you can’t run out to the store, or when Amazon is unable to deliver!
Now is not the time to try out new foods. Sticking with standard favorites, and products that you know are safe will mitigate any cross contact with an allergen.
Always bring a cell phone with you when you leave your home. If you end up sheltered in place, you can contact other family members to let them know where you are.
When our son was younger, we never left the house without safe snacks tucked into my purse.
Many customers in Colorado Springs lost power for hours of the day today. This is a VERY unusual situation in our city; however, if this occurs frequently in your location, be prepared! Obtain a battery operated nebulizer, or if you have to, have a generator on hand.
The key with food allergies and asthma is to ALWAYS be prepared – at home or away from home. Hopefully, you will never experience a shelter in place, but if you plan beforehand, the experience can be a mild inconvenience instead of a tragedy.
Stein & Vargas, LLP, a civil rights firm based in
Washington, D.C. and committed to the principle that all people have full and equal access to all parts of society. Stein & Vargas, LLP has a special interest in the rights of individuals with food
On December 28, 2016, the firm filed a complaint against American Airlines for targeting and discriminating against individuals with peanut and tree nut allergies in violation of the Air Carrier Access Act.
Hello Dean & Eileen! I’m thrilled to be able to interview you today about your company, Allergy Superheroes. I love the empowerment that comes for kids with food allergies being superheroes.
Eileen: Thanks Nicole! We love focusing on the positive too. There’s no better analogy for food allergies than kryptonite. If Superman can have a weakness and still save the day, then our kids can too!
Please tell us how your company came into being.
Dean: When our boys were diagnosed with food allergies, it wasn’t really a life-altering experience like it is for most new families since Eileen has a lifelong experience with it. But when they started school we became acutely aware that the rest of the world doesn’t really get it yet. When we realized the kryptonite analogy, we combined our love of superheroes with that positive message to help get the idea of food allergies across and spread awareness.
I especially loved the teal leaf bags you had available for Halloween. What are your highest selling products?
E: Our teal pumpkin products did really well this past October, especially the candy buckets. In general our slap bracelets do really well (and we’re about to release them in more allergens) and everybody loves our single-dose liquid medicine bottles.
Born out of my desire not to carry a full (not to mention heavy) bottle of liquid Benadryl with me all the time, those have really made my purse lighter and everybody else loves them too. But my personal favorite is our “I have a kid with a food allergy, you bet I’m a SUPERMOM” travel mug.
D: I sometimes wear the slap bracelets even though I don’t have any food allergies. It helps to spread awareness and they’re a lot of fun!
What food allergies do your two boys have?
E: Our older son is allergic to egg and peanut, though he is finally starting to outgrow the egg and he’s been handling it in baked form for a little more than a year. Our younger son is just peanut. Both of them have a big question mark around some of the tree nuts though, because introducing those has been problematic because of my allergy to them.
How do they feel about being a part of your company?
E: They love it! Modeling usually requires bribery of chocolate to get everyone through it, but they love being part of this and they know it’s something special. We have overflowing file folders of the artwork each of them has drawn of our characters.
D: Our boys are really into superheroes, so they love the idea behind the business and our characters. They wear their food allergy superhero shirts a lot and love helping to come up with new ideas on how to spread awareness. It really is a family venture!
Can you share a story of superpower one of them has enjoyed in life?
D: Our oldest is very active and outgoing. He has no issues with talking about his food allergies and spreading awareness about them. When a birthday party comes up, his friends know about his allergies so they make sure their parents talk to us so that their birthday treats will include him! He also loves to draw and we can see him doing a lot of the artwork side of the business when he gets older!
Eileen, you have had food allergies all your life. What was it like growing up in the 1980’s with food allergies?
E: Different, very different. There are times that I look back and just shake my head. I actually wrote a blog post a few months ago about how my “food allergy mom” life is easier than my mother’s was, where I highlight a bunch of resources and improvements. This could really be the subject for a novella since so much has changed, but some major points:
It was harder to get diagnosed and get proper medication–I had an anaphylactic reaction to eggs at 12 months, but the only prescription I received upon leaving the ER was for Benadryl (it wasn’t OTC), and we weren’t sent to an allergist or even told to avoid eggs (my mom avoided them anyway.) I had some smaller reactions and then another anaphylactic one to nuts in the months before my 4th birthday, and then I was finally prescribed epinephrine, but I wasn’t tested for allergies until I was 6. (By then there was no trace of an egg allergy.) And that was the only testing I had done as a child.
Most people hadn’t heard of food allergies. I did a lot of explaining and so did my parents, but it was rare to encounter anyone who had previously heard of allergies or could accommodate them.
There weren’t very many of us. I was unique in my dietary struggles, though I don’t remember feeling down about it very often. I was in middle school before I finally met one other kid who had food allergies. (I think my mom secretly hoped we’d become best friends and look out for each other, but he and I never hit it off.)
Epinephrine was carried in single doses and was basically seen as a last resort. We weren’t told to use it unless things got really bad. The whole concept of always having two doses and using epi “first and fast” is actually a pretty new concept (and one I’ll confess that I struggled with. Benadryl got me through so much in my youth, so the thought of using epi preemptively and then sitting around bored in the ER for 4+ hours was something I did not get behind for a long time.)
We didn’t have the internet. As a result, news of food allergy deaths seldom reached our ears so our perception of the risk was less. That may have put us at greater risk, but probably also reduced our anxiety level. But on the other hand, we didn’t have many resources available to us, either. My mom used to receive a monthly newsletter from a now-defunct allergy and asthma organization, and most of the articles were on asthma. If she’d had access to the community we have today, I’m sure our lives would have been a lot different–certainly a lot less isolated.
D: Nowadays, awareness is growing, but there is so much more work to be done. It’s hard to fathom going through that with virtually no awareness or support at all. The kids and parents of that time period and earlier are real superheroes in my book!
How did you manage to stay safe in school, dating, eating out without the awareness that’s available today?
E: I’m going to start by saying that I was pretty lucky to “only” be allergic to tree nuts. If I’d been allergic to, say, dairy or wheat, or if egg had stayed with me, I’m sure things would’ve been a lot harder, because I would’ve encountered them a lot more. Tree nuts aren’t as widely used, so my life was not as restrictive as it could have been.
My mom considered it a victory to actually get my EpiPen into the nurse’s office, though she has repeatedly expressed doubt that anyone there would’ve known how and when to use it. We put a lot less emphasis on inclusion back then and mainly focused on “do what you need to do to stay safe.” The world isn’t nut free, and my mom wanted to make sure I understood that I couldn’t always participate in shared treats. When foods came into the classroom I would ask questions, and sometimes I would just do without. I don’t think I ever had a backup stash at school. I don’t think that even occurred to my parents.
I think I started self-carrying around 5th grade, which I’m pretty sure made my parents feel safer. I had a fanny pack that year, then somewhere along the line I just switched to carrying it in my backpack. I don’t have very distinct memories of any of that, it just sort of happened when it happened. I got a fairly good handle on what I shouldn’t eat by then, and I can’t recall any school-related reactions beyond early elementary school.
Telling boyfriends about my allergy was definitely a priority. We had a “no kiss” rule growing up if my parents ate something I was allergic to, so that transferred over to dating. Generally, I would tell guys that they shouldn’t eat nuts while we were out. I wasn’t forward enough to add “or you can’t kiss me,” at least not early on, but no one ever challenged my rule, either. I can’t say I put any thought into what they’d eaten previously–but then, the first supposed “peanut butter kiss of death” didn’t happen until I was in my 20s, so that was another danger that I simply wasn’t aware of, nor did I fall victim to it. But I didn’t date a whole lot, either.
(Dean here, she was worth not eating any tree-nuts before or during our dates for that goodnight kiss!)
Something else that is very different today is awareness of cross contamination. Some might argue that cross contamination doesn’t have much awareness, but when I was little there was none–and I mean none. We were never warned against it by our doctors, foods never labeled for it, and the general principle we lived by was “don’t eat anything with nuts actually in it.” We knew you couldn’t pick nuts out, but even the concept that you couldn’t use the same knife was something we learned (painfully) the hard way. There were a handful of reactions from my childhood that we traced to contamination as we struggled to figure out the concept, and some other “mystery” reactions that must have been from CC.
Kissing, cross contact–basically, these things had to happen a few times before doctors, patients, the news, and lawmakers figured out the pattern and started doing something about them.
So when it came to restaurants, we did a lot of educating. It wasn’t uncommon for me (or my parents) to explain what food allergies were to restaurant staff–and after we learned about shared knives and foods touching, we told them not to do that, either. Whether any of them actually took precautions in the back is debatable–but on the other had we were pioneers, laying the foundation policies that restaurants are adopting today. It’s a wonder that we ate out at all–but without the internet shoving food allergy deaths in our faces every few months, the danger of that happening also seemed farther away. At times we coasted through on ignorance and luck.
Is there anything else you’d like to share?
E: It’s been great getting to be part of this community since we started up a few years ago–it’s such a welcoming and positive space. I also blog at www.allergysuperheroesblog.com and I started that up because I wanted to share my perspective of dealing with two generations of food allergies–my outlook is different since I’ve been through it myself, but caring for your allergic child is definitely different than managing your own allergies, too. Most of the time we don’t see the after effects of the things we’ve done, but it’s really all about helping people. On the rare instance that we get feedback that we’ve helped someone, or given good advice, or made someone feel more confident about the future, that’s when we know that we’re doing the right thing. We love all of the connections we’ve made over the past few years!
D: It really is the most fantastic community to be a part of! We’ve met a lot of amazing people and we’re continually inspired by them. And when we get to meet them in person at conferences like FABlogCon, it truly is a SUPER experience.
Hello Mary. It’s wonderful to interview you today. Can you please tell us how you became involved in disability law, especially as it relates to food allergies and anaphylaxis?
I’ve been a disability rights lawyer for almost two decades. I started my career at the National Association of the Deaf doing disability discrimination litigation. When my own child was diagnosed with food allergies and subsequently turned away from a summer camp because of his allergies, my worlds collided. I found myself in the uniquely familiar position of advocating for inclusion but this time I was advocating for my son. I realized that if the child of a disability rights lawyer was denied access because of food allergies, there was work to be done.
What food allergies does your family manage?
I have three boys and only my youngest has food allergies – peanuts, tree nuts and shellfish.
What lawsuit(s) have you litigated that pertain to food allergies and anaphylaxis?
Stein & Vargas, LLP has a special interest in pursuing litigation that will create safe and equal access for people with food allergies. We’ve litigated a number of cases throughout the United States on behalf of people with food allergies who have experienced discrimination whether it be in employment, education, or access to programs and services. Among the complaints we have pending now are a complaint against Young Shakespeare Players East in which the United States Department of Justice has concluded that Young Shakespeare Players East discriminated against my 11 year old client on the basis of his food allergies and retaliated against my 13 year old client for advocating for her friend’s rights. We are also co-counseling on a case with Laurel Francoeur against Panera on behalf of a child who had an anaphylactic reaction after being served a grilled cheese sandwich that contained peanut butter despite notice that the sandwich was for a child with a peanut allergy.
From your experience as an attorney, is there anything that a food allergy family should be aware of or take action on to ensure the safety and inclusion of their child in school?
The most important aspect of safety and inclusion at school for food allergic kids is the development of a strong and positive relationship between the school and the parents. The focus cannot be on highlighting where plans failed, but on building long term trust and commitment. Even the most knowledgeable and well-meaning schools will fall down sometimes.
Allergy Law Project was the brainchild of Laurel Francoeur who approached Homa Woodrum and I two years ago about the need for reliable legal information in the food allergy community. There is incredible power when parents of food allergic kids put their brains together for the good of the community.
I love the blog post called “A Seat at the Table – Bringing Allergy Friendly Food to Restaurants“. You said that’s the question you are asked the most. What can a family do, in the moment, if a restaurant forbids them to bring in outside food? Is it necessary to bring along the state law to reference or is there some other statement that can be used to allow outside food?
Generally, families can ask calmly and respectfully to speak with the manager. Explain to the manager that your party is looking forward to enjoying the food that the restaurant offers but your child cannot safely eat the food. If after calmly talking this through and explaining why it is necessary for your child to bring safe food in order for the rest of the dining part to eat at the restaurant the manager still refuses, you may need to go higher up the chain. You might send a politely worded letter to the restaurant owner to educate them about food allergies.
Many food allergy families are concerned about Donald Trump’s comments about “streamlining” the Department of Education and curbing the role of the Office of Civil Rights. What can food allergy families do to protect their child and do you think that is likely to occur?
I have grave concerns about the impact of the incoming administration on many aspects of the work we do. The Office of Civil Rights within the Department of Education, the Office of Civil Rights within the Department of Health and Human Services, and the Disability Rights Section all have a critical role in ensuring compliance with our federal rights. Significant cuts in staffing could jeopardize the ability of these agencies to safeguard rights and changes in philosophy could undermine enforcement actions throughout the United States. There is so much at risk and already resources are stretched tightly. I’m also concerned about the potential rollback of food safety regulations that has been threatened. My hope is that the allergy community has the potential to speak loudly and in concert to defend important rights.
If someone reading this feels they need legal advice pertaining to a disability law question, how can they contact you? Stein & Vargas, LLP’s website is www.steinvargas.com. Folks are welcome to contact me with questions through the website.
Thank you very much Mary!
Ms. Vargas is committed to ensuring full and equal access for all individuals. She has litigated cases pursuant to the Americans with Disabilities Act and the Rehabilitation Act throughout the United States in federal and state courts.
Ms. Vargas also represents women who are denied access to reproductive care and coverage. She has successfully obtained full coverage of late term abortion claims through insurance appeals. She also speaks nationally on issues including women in law, movement building, discrimination, pain, food allergies and anaphylaxis, and reproductive rights. Ms. Vargas is a co-founder of and blogger for the Allergy Law Project.
Prior to joining Stein & Vargas, LLP, Ms. Vargas was a staff attorney with the National Association of the Deaf. Ms. Vargas was a 1998 Skadden Fellow and a 1994 Truman Scholar. Ms. Vargas was the 2010 recipient of the Advocacy for People with Pain Award from the American Academy of Pain Management. She wrote for the American Bar Association, Mental and Physical Disability Law Reporter.
Ms. Vargas obtained a B.S. in deaf education from the College of New Jersey, and a J.D. from the University of Connecticut, School of Law. While in law school, she was appointed to the Client Advocacy Board and served as student director of the Yale Law School, Advocacy for Persons with Disabilities Clinic.
Ms. Vargas is a member of the bars in Connecticut and Maryland. She associates with local counsel around the country in bringing cases of special importance to individuals with disabilities.
The Food Allergy Bloggers Conference was held in Denver, CO this past weekend, and wow was it fun! The conference is more than just about blogging, there’s also a “disease” track that offers wonderful speakers who spoke about research that their children were involved in; doctors who detailed eosinophilic disorders, parenting tweens/teens with food allergies and much more! There are many gluten-free bloggers who also are a large part of the attendees. And the Expo is amazing – so many new products for food allergy individuals and new foods to sample.
I started off the weekend learning more about Instagram Stories, Facebook Live, Snapchat and more! You can see the proof of my learning Snapchat above!!
Jenny Sprague is the Founder and Manager of the conference. It is a year-long mission to put on this great conference, and every year she does more amazing things.
At the Welcome Dinner, we heard from Eric and Evan Edwards, the Founders and Co-Inventors of the Auvi-Q. They shared their personal experience of having life threatening food allergies – and the fact that their children also have them – hence it is personal for them to bring back the Auvi-Q as soon as possible. And they are planning on doing that before June 2017, at a “very low price” even for those with high deductible insurance policies. I asked them about this price, and it sounds like they are shooting for below $50!! The two met with several of us bloggers to find out more of the issues we’ve had gaining access to epinephrine autoinjectors at a low price. I came away feeling that they really are invested in helping our community, and as they said, “this feels like home” to be with the food allergy world!
Saturday was filled with presentations, not the least of which was my husband, Robert’s, and my presentation on Parenting Your Tween/Teen with Food Allergies.
We shared our experience and stories about raising our son, Morgan, and the various challenges and opportunities we had to empower him as a self-advocate through his tween years of school, campouts, overnight field trips and sleepovers. And through his teen years of homecoming, prom, dating, kissing and alcohol awareness. We had great audience participation and questions.
We were thrilled that our daughter, Michaela, was able to join us for the conference. Also, FAACT was the sponsor of our presentation. Eleanor Garrow, President & CEO of FAACT, is shown above with our family. We were definitely missing our son, Morgan, who is currently studying abroad in England.
One of the best parts of the conference is getting to meet in person bloggers and authors whom I’ve only met online. Above is Cookbook Author Cybele Pascal, on my right, and Allie Bahn, Miss Allergic Reactor, on my left. It’s so great to connect with these wonderful women!
And what would a conference be without a couple of superheroes from Allergy Superheroes? Love these two who marched around the entire conference in capes!
I was able to stay in the Denver Renaissance Hotel, for the first time, because Keith Norman was the first chef willing to take on feeding me! And believe me, that’s no easy feat with my mast cell and eosinophilic esophagitis diagnoses. I have so much appreciation for Keith’s willingness to provide safe food for all attendees.
The conference continued on through Sunday, although our family had other plans, so we had to leave early. It was an amazing weekend, and one that I’m already planning to attend next year!
There is a new issue that I’ve been hearing about frequently on college campuses, and it affects our children with pet allergies: emotional support animals.
For those students who have severe animal allergies (like my son, Morgan) living in the same dorm as these emotional support animals can be hazardous. An emotional support animal differs from a service animal, according to the National Service Animal Registry in that “an Emotional Support Animal (ESA) is an animal that, by its very presence, mitigates the emotional or psychological symptoms associated with a handler’s condition or disorder. The animal does NOT need to be trained to perform a disability-specific task, whereas a service animal does.
All domesticated animals (dogs, cats, birds, reptiles, hedgehogs, rodents, mini-pigs, etc.) may serve as an ESA. The only legal protections an Emotional Support Animal has are 1) to fly with their emotionally or psychologically disabled handler in the cabin of an aircraft and 2) to qualify for no-pet housing. No other public or private entity (motels, restaurants, stores, etc.) is required to allow your ESA to accompany you and in all other instances, your ESA has no more rights than a pet.
You’ll also need to be prepared to present a letter to airlines and property managers from a licensed mental health professional stating that you are emotionally disabled and that he/she prescribes for you an emotional support animal.
My son lived in a college dorm for 2 years, and in that time, there was a HUGE increase in the number of students with emotional support animals. At the University of Denver, they recognize that the needs of a student with severe pet allergies are equal to the needs of a student with an emotional support animal. However, the only way that a school is going to know that your child has severe animal allergies is for the paperwork to be completed and medical documentation provided.
My son was placed in a dorm on one end, and the students with animals were placed on the other end. That way there was no shared ventilation, which could have exacerbated his asthma.
I’ve recently heard of two situations at two different universities where a student brought in an emotional support animal without having paperwork completed until AFTER moving in. In both cases, the roommates were unaware that there would be an animal prior to moving in. And to make matters worse, in each case, at least one of the roommates had severe pet allergies, but had neglected to tell the university of such.
Both situations have caused a large amount of stress for all involved, and the university is caught in the middle of which student needs to move out and which needs to stay.
My suggestion: if your child has severe pet allergies (and this would also include children in K-12) make sure to have the paperwork completed so that the school is aware of these allergies. This will allow for any accommodations needed, such as no contact with the animal, no field trips where the animal is present, and no shared vents with the room where the animal is located. Prior to placing a child with a pet in your child’s classroom, or allowing a college roommate to have a pet, other arrangements can be made.
I have been a patient in Dr. Xiu-Min Li’s private practice for about a year now, and it was time for me to meet her in person. We have been having once a month telephone appointments. Meeting Dr. Li in person was like meeting a rock star! She and I hugged each other like long lost friends, having spoken on the phone for a year.
I have written about Traditional Chinese Medicine (TCM) before, and you can read that blog post here.
Most of Dr Li’s patients travel to New York City to meet with her before they start treatment. However, it is VERY difficult for me to travel, and being an adult, she was willing to consult with me after receiving a battery of blood tests and endoscopy results for my eosinophilic esophagitis and mast cell disorder diagnoses. I also have IgE allergies to several foods – peanuts, onions and corn.
Because of these diagnoses, and gut issues every time I try a new food, I am currently eating just 4 foods: organic chicken breast, organic turkey breast, organic broccoli and Cascadian Farms organic hash browns. (For some reason, those potatoes, having been parboiled to perfection, work for me while homemade hash browns parboiled do not.) Mast cells and eosinophils are crazy!
When I travel I must either bring these foods or be able to purchase them. And because all of these foods are low in calories, I eat 6 times a day, about 2 hours apart. I have to cook all the foods for my stomach to tolerate them – not that I would be eating raw chicken! But even raw broccoli doesn’t work for me currently.
My recent trip to meet Dr. Li felt like a big accomplishment. I was able to stay with a fellow food allergy Mom, and to use her kitchen to cook all my meals. I ordered my food from FreshDirect and had it delivered to her apartment prior to my arrival. What a wonderful service that is in New York City! And what a wonderful friend I have to put up with me cooking non-stop!!
As far as the Traditional Chinese Medicine that I’ve been taking – I’ve been on a cream IIIvb, which looks like avocado dip, and I apply it once a day, every day. I’ve recently begun an herbal foot bath, which is all that I can tolerate currently. Most of Dr. Li’s patients use herbs in a “real” bathtub, however I am currently too sensitive for that. The combination of these two treatments, which permeate the largest organ – the skin – have begun to decrease my body’s sensitivities. I have yet to begin to swallow any TCM treatments. Again, most patients are able to start with this, but my system is still in need of healing more before I will be able to swallow any teas or pills. Dr. Li’s protocol is not something that I could manage myself, and I couldn’t go to a local store to purchase the herbs. I feel very grateful that I have a doctor, with such knowledge, managing my care.
I realized how much better I’m doing when I was asked by Dr. Li to rate my improvement. I’m far less reactive to smells and contact with the environment. I have much more energy. (That’s the real issue with mast cell degranulation for me – it zaps my energy). And I’m far less anxious. I really want to eat different foods, and Dr. Li thinks that’s in my not-too-distant future. She wants to try some Chinese vegetables because it’s something I haven’t ever eaten, so hopefully my mast cells won’t recognize the food as an invader!
For me, TCM is more about how I feel than any blood test result. We aren’t trying to cure any food allergy. I’m willing to not eat a few foods that I’m allergic to…I’d like to be able to eat all those other foods that currently I can’t tolerate because of the mast cell/EoE issues!
Dr. Li suggested that I purchase a pressure cooker to cook the meats that I eat to make them more easily digested. Upon returning home, I immediately purchased an “Instant Pot”. What a wonderful little device! I can cook my chicken in 15 minutes, while my potatoes are cooking on the stove. This allows me to always eat fresh, and to cease microwaving foods to reheat them, which Dr. Li wants me to quit doing – “as much as possible in our busy lives”. She’s always so patient and kind!
I’m continuing to increase the amount of cream that I apply, and to increase the amount of herbs in my daily foot bath. It’s so exciting to feel healing occur in my body.
The various medications that I’ve been on – Ursodiol, Zyrtec, Zantac and Ketotifen – only mitigate symptoms. They do nothing toward a true cure or healing. I’m grateful to have them, and I’ve been able to decrease the amount of medication that I take daily since starting on the TCM protocol.
It has been a firestorm over the last week with consumers, doctors, and the media calling out Mylan for its price gouging of the life saving medication, EpiPen. While Mylan CEO, Heather Bresch, argued that the problem is with the health care system instead of with Mylan in particular, Mylan did come to the PR table to provide further discounts to consumers.
This is too little and too late, especially for the thousands of consumers who have already scrimped and saved to purchase EpiPen 2-Paks for their children to take to school this year. Nothing monetarily was provided for any family who has already made purchases.
Additionally, this appears to be a public relations tool to not only stabilize their stock price (which has dropped almost 11% over the last three days), but also to quell all the media attention.
What should Mylan REALLY do? Here’s what I’d suggest:
Give Heather Bresch her walking papers. She has been a controversial figure with her MBA credentials having been called into question, and the EpiPen price increases were destined to be an issue if anyone had had the foresight to see the writing on the wall. Let her take the fall for this and wipe the slate clean. She has stated that EpiPen is “her baby,” so she is responsible for the price gouging.
Cut the EpiPen 2-Pak price to $300, the price it was in 2013-14. With their new $0 copay card value of $300, this would allow consumers to pay nothing. It would also be decreasing the cost of the product for insurance companies portion of the prescription – which we consumers are still paying in the form of higher premiums.
Make Anaphylaxis 101 a non-profit. It’s going to be difficult for Mylan to find a spokesperson now that both Sarah Jessica Parker has stepped down and Kelly Rudnicki, a Food Allergy Mama, who is a beloved figure in the food allergy world. Making the website Anaphylaxis101.org would allow for some good to be coming out of Mylan toward the food allergy community. And put a few members of the food allergy community on that non-profit board of directors!
To further that thought, Mylan needs to get a PR makeover. The best way to do that is GIVE, GIVE, GIVE to the allergy community and to apologize for what they’ve done with raising the price of EpiPens beyond what American consumers can afford. Americans love a redemption story, and it’s time for the old Mylan philosophy of greed, corporate tax evasion and executive compensation packages to be burned to the ground. What can rise is a new company, with the philosophy of collaboration and innovation.
Lastly, Mylan needs to take the HUGE amounts of profits that they made from EpiPen sales and put the money into research of an auto-injector product that meets the needs and desires of consumers: small, lightweight and a stable shelf life of 2 years or more.
Mylan could be a hero to the Food Allergy World if they’re willing to make amends and give up their current corporate philosophy. Become the company that our children would want to work for! If not….then I cannot wait for the competition that’s forthcoming in the epinephrine auto-injector market!
I love this idea that Dr. Dave Stukus has for decreasing the cost of EpiPens:
I have been interviewed by numerous news agencies about the high price of EpiPens and I have told each of them that Mylan’s high prices would be better understood IF they were creating a smaller EpiPen and/or if they were working on extending the expiration date of the product to 2 or 3 years from the current 12-24 months. Since neither of these are occurring from every response that Mylan has provided to the media, I can only assume that they are increasing the price to pad their profit while enjoying their monopoly status.
I decided to write my two US Senators and my one US Representative and ask them to request an inquiry into Mylan’s pricing practices. Here is the gist of the letter that I wrote (and please feel free to copy/paste and add your pertinent information):
Hello Senator/Representative ____________________________ You may have seen the recent Denver Post article titled, “Allergy sufferers caught between EpiPen price hike, health plan crunch”. We are very dismayed at the rising cost of the EpiPen for no good reason. There are 15 million Americans with food allergies, and the EpiPen is providing $1 billion in sales for Mylan, the manufacturer of the EpiPen.
Certainly, part of the issue is the changing prescription coverage for those of us with high deductible health plans. Another part of the issue is Mylan who have raised the price of the autoinjector astronomically since 2007 when they purchased the patent.
My recent trip to purchase an EpiPen yielded a price of ________ for a 2-Pak EpiPen prescription for my child. Mylan offers what they call a $0 copay card, which actually maxes out at $100. Therefore, the cost of the prescription would still be ___________ for our family. We could not afford to pay for the medication.
This is lifesaving medication for my child, who has anaphylactic food allergies to _______________.
In the past, we would have purchased four to six 2-Paks of the medication for safety’s sake.Our child will have an expired EpiPen 2-Pak as his backup. This is not ideal, and we are not alone in having to make these difficult financial decisions.
I would like to request an inquiry into Mylan’s practice of huge price increases for this drug, when there have been no improvements at all. Mylan currently has no real competitors other than a generic alternative, Epinephrine USP, which would still cost us $400 with our insurance. Without competition, we consumers have no real hope for change, hence the need to ask for your assistance.
To date, I have received one response from Representative Doug Lamborn:
Plus I received a phone call from Senator Michael Bennet’s office telling me that he has a contact at Mylan that he will speak to regarding this situation.
I just saw this post today from Minnesota Senator Klobuchar:
Please write to your US Representative and Senators! We, the food allergy community, don’t have to accept these price increases.
Many of you have read my son, Morgan’s, recent posts about studying abroad with food allergies. If you’ve missed them, please read them on his Morgan’s New Corner blog here and here. He wrote extensively about the details of what it took for him to be able to study abroad safely. He will be traveling throughout Iceland, Spain, France, Italy & Greece in August; doing research in Copenhagen, Denmark in September, and studying at the University of Lancaster in Britain from October through December 18.
As a parent, it was difficult to wrap my head around him studying abroad when he first brought up the subject prior to leaving for college. At the University of Denver, approximately 70% of the students study abroad – generally in their junior year. There were seminars about studying abroad for parents to attend during the Parent portion of the Freshman Orientation Week. I sat through those discussions and wondered how we, my husband and I, would ever be able to support this endeavor! Yet we both agreed that this was an opportunity not to be missed, if it was possible. It was going to take plenty of preparation, but the good news was – Morgan would be doing that instead of me!!
Over the past 2 years of college, Morgan has shown more maturity in being able to handle the details of his medical care. He has also become far more organized, and took on looking into the schools abroad that could accommodate his needs for safe food. Since middle school, he has been responsible for ALWAYS carrying his EpiPen 2-Pak, which he does ALWAYS. He knows how to recognize an allergic reaction in himself, and how to teach others. He can also teach others how to administer his EpiPen. He has vast experience with traveling by himself, and in groups, and keeping himself safe.
Since he doesn’t speak a second language, we knew that he would need to have an English speaking country for his study abroad, and thankfully he agreed with that wholeheartedly. I remember speaking with a father at a Parent’s Weekend at DU who was telling me that his son went to Australia for study abroad and loved it. He then mentioned that his son has a peanut allergy. I commented that it was probably easier to manage his peanut allergy in an English speaking country. The Dad said that he’d never thought of that! For some parents of children with food allergies, there is a different level of vigilance than what we’ve practiced.
We have chosen the vigilant lifestyle, based upon Morgan’s past allergic reactions. I can’t imagine being cavalier about where Morgan chose to study. It was also important, however, that Morgan take responsibility for ALL parts of the study abroad. This included whether the college/university had classes that would fit into his major; whether he could find a living arrangement that would keep him safe; and which airline he would choose to fly to his various destinations.
There are so many pieces of this puzzle to put together, and we allowed him to be the Project Manager of this adventure. He learned about an app called Trello that he was using with another project at school. This became our go-to place for listing all the details of what needed to be done prior to his departure. He would list various items that he knew he needed to provide to get into the country; and I listed other items important to me. Together we made it happen, and I also had to quit micro-detailing him to death. At 20 years old, he had shown how responsible he was, and I needed to trust that whatever happens abroad is for his highest and best good.
Yesterday, we took him to Denver International Airport. I couldn’t believe that we were at the launch point! The years of teaching him how to be safe with food allergies were going to get the biggest test yet. He has a written plan for the cities he will be visiting detailing where he’s staying, and he’s checked out various markets and restaurants. He’s going to purchase a SIM card in each of the countries he’s visiting to be able to communicate with us and with others. We will be communicating through Skype while he is abroad, however he told me to expect a weekly update – not daily! He will provide a map “touch point” every time he enters into a new city while traveling during August. This will allow us to know he has safely arrived. He also provided us with his detailed itinerary for the month of August, so we know where he’s planning on being. He’s traveling with two DU friends – one of whom flew with him. The other one, they will meet in France.
It’s not easy to allow our children to grow up and participate in college life! I cried many a tear yesterday, and hugged him three different times before he got on the escalator to head to TSA. I’m so excited for this adventure for him. And I’ve already counted the days until his return – 139 to go!
Have you been to the pharmacy recently to purchase an EpiPen 2-Pak? If you have a high deductible policy like our family does, you may need a nitroglycerin pill when paying for the prescription!
We have an Anthem HSA (Health Savings Account) insurance policy with a high deductible. What this means is that we pay $4000 of a deductible before our insurance kicks in to cover any cost of prescriptions. This means that my son’s most recent prescription was going to cost us $600!! Yep, you’re reading that correctly.
I thought this wouldn’t be an issue since Mylan is offering a $0 copay card that’s easy to find all over the Internet.
However, the fine print states that the maximum amount of monetary coverage is $100. Therefore, Morgan’s prescription would still cost us $500. And we generally purchase two 2-Paks, a month apart, so that he always has one 2-Pak on his person, and the other 2-Pak is an extra set for his dorm room in college. That’s $1000 – of very important insurance – but it’s for a purchase that you hope to never have to use. And in fact, in the 19 years of having EpiPen Jr.’s and EpiPen’s prescribed, we’ve only used one autoinjector. It was certainly needed, and we were very grateful to have it. Yet there are many families who cannot afford to purchase even one 2-Pak of this drug at the current costs, and that’s dangerous.
For those of you thinking about a generic alternative, I too looked into that. The generic device is called the Epinephrine USP :
While this may be a wonderfully, cheaper alternative for some (depending upon your insurance coverage), this prescription was quoted by Anthem at $400 for a Two-Pack with our insurance.
As most of you know, there is no other alternative currently since the Auvi-Q has been pulled from the market in a full recall of the device.
We eventually purchased two EpiPen autoinjectors made by Meda (the European based pharmaceutical drug company that Mylan recently acquired) from Canada Drugs for $225. They were shipped to our home in a styrofoam package to ensure temperature stability, and had an expiration date 14 months into the future. Never did I think I’d be happy to purchase 2 EpiPens for such a high cost.
What is going on with the cost of EpiPens?
I’ve done a little research that I’d like to share with you:
As I said before, we’ve been purchasing EpiPens for 19 years. Some years, we’ve had great insurance that covered the entire cost of several EpiPens. Other years, we paid $100 or less. It’s been only in the last few years that the price has been skyrocketing.
Previous to 2011, I was able to purchase just one EpiPen at a time. In fact, it wasn’t until 2011 that Mylan began selling only the 2-Paks when the National Institutes of Health suggested that patients have immediate access to two doses of epinephrine. We always purchased an abundance of extra EpiPens (and Jr’s) to ensure we always had one at arm’s length, and the cost was rarely an issue. But for some people, purchasing just one EpiPen would be preferable to none – yet, this is no longer an option.
The Affordable Care Act has certainly changed the nature of insurance, and thereby the cost of medical care for consumers. Depending upon your insurance company and coverage, you may not even be aware of the increase in the cost of EpiPens…or you may be selling off your couch to afford this vital medicine. From what I’m hearing from our insurance agent, more and more insurance companies are moving toward covering less and less of the costs of prescriptions.
Then, there’s Mylan, the company that makes EpiPens. Mylan purchased the rights to manufacture the EpiPen in 2007 when the device had a wholesale price of $57, and the cost of the epinephrine in the device was about $1. Mylan has increased the wholesale price by 400% since then, while the cost of the epinephrine remains at about $1.
The spokespersons for Mylan will say that they don’t set the retail price, but any college business student can tell you that the higher the wholesale price, the higher the retail price. And if Mylan is counting on their $0 copay card to be the catch all for the price of an EpiPen 2-Pak, then they need to have the copay card be truly worth $600!
For those families who don’t have the money to pay for an autoinjector, they will likely have to rely upon a school’s stock epinephrine. Yet, these cost increases also affect schools and emergency services who cannot afford to purchase the drugs, even if Mylan did give away devices for free in the first years after legislation was passed to allow stock epinephrine in schools.
Marketing the EpiPen autoinjector has been CEO Heather Bresch’s key focus. In terms of market share, she’s basically got a monopoly. I anxiously await a viable competitor, which will hopefully bring the price of epinephrine autoinjectors down. Sadly, there aren’t any contenders on the horizon. I’ve seen several prototypes, but many require assembly, which would be extremely difficult to expect a Good Samaritan to be able to do in the middle of anaphylaxis.
Mylan has not only been increasing the cost of EpiPens, but also several other generic medications that they manufacture. There is a point where the market will not allow this to continue. Congress has stepped in before (remember Martin Shkreli?), so there’s always the option of writing your Congressional Representative and/or Senator to let them know how the price of EpiPens affects your family. I believe we are at a tipping point, but it’s going to take hundreds of thousands of us to make noise to get anything to happen.
It’s amazing how much more food allergy awareness there is in 2016 than there was in 1996 when my son had his first reaction – a contact one at that – to peanuts! Twenty years makes so much difference, yet there is still a long way to go.
Rare is there a preschool that doesn’t have some awareness of food allergies; however, there are so many colleges that need to be educated. Day cares have protocols for children with food allergies, yet employers don’t have any idea what’s coming as our children age and need special accommodations in the workplace!
And don’t get me started on discussing airlines and their needs to serve peanuts, or warm nuts in First Class! We still have a long way to go to create more awareness of our children’s needs and civil rights.
There have been several key items that have occurred in the last 20 years. The main item was the Food Allergen Labeling and Consumer Protection Act which was passed in 2004 and became law on January 1, 2006. The top 8 food allergens must be labeled in words a child can understand as a result of this law. It is so much easier than it used to be to know if a product is safe.
There is now an abundance of ongoing research occurring to find a cure for food allergies. When my son was little, there was nothing, and very little funding for research. The only “cure” was complete avoidance of the offending food.
I’m convinced that in the next 20 years, there will no doubt be a cure. In the meantime, living with food allergies is not as lonely as it used to be – sadly, there are so many more children being diagnosed each day. And the Internet has definitely made the food allergy world bond and be able to reach out to more families.
AllergicChild has been online since January 2000. We’ve been sharing our family’s experience of traveling, sending our son to school, and basically every aspect of our lives as it relates to food allergies. My son, Morgan, has detailed his life since he was 9 years old for the AllergicChild audience.
Morgan has shared his personal experience about preparing for trips alone and with school groups, about college and what it took to find the right school. He also shares all his writing from the age of 9 through the present, and how food allergies have affected his life. I encourage you to visit our blog to read more of his posts. You will see that your child has an amazing future ahead!
Thank you for all your support and encouragement through the years. One day, when we have a cure, we won’t need Food Allergy Awareness Week. In the meantime, let’s continue to trudge this road and support one another!
Now, it’s time for Morgan to move off-campus for his Junior and Senior year. He will be studying abroad for the Fall 2016 quarter in the UK at the University of Lancaster; however, waiting until he returns in December to find a place to live will likely yield him no safe place! Therefore, time is of the essence now, 9 months in advance, to secure housing.
We have lived in our family home for over 22 years. We have ensured that the home is allergy-safe for Morgan. We put in tile floors years ago, and added Air Conditioning, which many people do not have in Colorado. We have HEPA filters on the furnace, and have no pets. Basically, our home is and has been a safe haven for Morgan, and it was the only home he lived in prior to going to college.
I hear from many parents who assume that living off-campus in an apartment is easier for food allergic students than living on campus in a dormitory. That may be true in some cities; however, Denver is seeing a population explosion and rentals are scarce and over-priced. For Morgan, living in a dorm and eating in the cafeteria has worked extremely well, especially since DU Dining Services are well-versed on food allergies. And, on-campus housing is cheaper than any off-campus apartment or shared home.
Food allergies are just one part of the equation for Morgan. He also has mild asthma and pet allergies. Therefore, he has to find a place to live that has central air conditioning, no pets, no smoking, with roommates willing to not eat his allergens, AND come in at a price that’s below his scholarship stipend! That is a difficult combination!
He immediately was able to find the roommates he wanted to live with, and had a discussion about his food allergies to ensure they were okay with his needs. With that hurdle jumped, the real issue began – Denver is big on dogs. And many college students have pets, so about 85% of the available houses and apartments allow for pets in the DU neighborhood. Of the 15% remaining, most do not have air conditioning! That narrowed his selection of available apartments to about 3 buildings.
Thankfully, he started early and has just signed a lease with three other young men to live in a 4-bedroom apartment that has AC, no pets, and no smoking. These transitions are difficult for this Mama to stomach; however, I know that Morgan is making wise decisions of who to live with, and I’m hopeful that this apartment lives up to its promises!
Lauren is now in college at the University of Northern Colorado, and I wanted to interview her, and her mother Melissa, about her experience through the rest of high school. Also, I wanted to see how she is managing in college without having a robot!
Lauren – you were 14 years old when we last interviewed you. How was the rest of high school for you with your dairy allergy? Did you continue to have a robot go to school for you?
The rest of high school was amazing! After using the V-go, my friend had told me about a charter school that was able to accommodate my food allergy. They even banned pizza, and implemented a desk cleaning before each class at the school for me! Everyone was so accepting of my allergy. I still stayed away from food areas and washed my hands often. Except for the occasional hives from dairy contamination, I had no severe reactions while I attended.
Were there any more instances of anaphylaxis during your years in high school?
Not while I was actually at the high school, but during the summer of my junior year I had a really bad one at a women’s retreat that I went to with my mom. There was a miscommunication with the staff that tried accommodating me in terms of food at the camp. I had accidentally eaten a piece of bread with dairy in it. It was a very scary ordeal, considering we were in the mountains & the response time up there is a little longer. I was scared and not sure what was going to happen but after 5 hours, 3 Epipens, 14 times trying to find a place for an IV, 2 Inter muscular injections, a breathing treatment, and lots of prayers the doctors stabilized me! Now I am much more careful and I always make sure my food is extra safe!
How did you prepare for going to college at the University of Northern Colorado?
I set up an appointment to meet with disability services at my school. They were absolutely phenomenal with working with us to make UNC a safe place for me to go. They got me an on campus house where I have a separate, safe apartment. I also took the time to talk to my professors about my allergy.
What made you choose UNC?
I chose UNC because I wanted to go away to college but I knew I really needed to be close to home in case I had a reaction. UNC was a perfect choice because it was only an hour away from my parent’s house. Additionally it had the major I was interested in. Plus, it’s awesome to see family and not have to cook your own food on the weekends!
What is your current living situation at school? How do you ensure that you don’t get near dairy?
I am in a house with a self-contained apartment on campus, I have other girls who live in the same house with me but they are on a totally different side. When I first moved in, I made them all aware of my anaphylaxis, and the severity of it. They are awesome and completely understand the seriousness of my allergy. Whenever I want to hangout in the main house, they make sure to not cook using dairy and they clean the house for me! Two of the girls are from Colorado and two are from Germany, and all have been so supportive and amazing to me, and they are actually some of my best friends now.
What are you planning on majoring in academically?
I am studying Audiology and Speech pathology and I love it! It’ll definitely be awesome to help people with hearing and balance issues one day as an Audiologist.
Have you been able to have a summer job? If so, what “food threats” have you run into with working?
In the past I have lifeguarded during the summer. It was actually a very good fit for me! I have never had a reaction at the pool, and I carry a protective mask in case I ever have to perform CPR. I also talked to my boss about my situation and I let her know that my safety is just as important as the patrons I am guarding, since in order to keep them safe I have to keep myself safe. During my time guarding, there were food parties but I didn’t have to worry about it because the guests couldn’t bring the food near or in the pool. It was definitely an awesome job!
Melissa – when we last interviewed you, Lauren was participating in Dr. Li’s Traditional Chinese Medicine (TCM). Did this treatment help Lauren at all?
Lauren is still taking the herbs. When we started the herbs we simply wanted her to be able to go inside school or the grocery store without having a severe reaction, since there was a time before the treatment that it became impossible to be inside places where food was being warmed up because her body seemed to be even more hyper sensitive then usual. We think this treatment might have helped, since (unlike before the herbs) she has been able to be inside schools, food establishments and other public places without her throat immediately closing. She has no reaction when we simply walk past a pizza place anymore (where as before she would react)
Still, if the dairy is being cooked close enough, she does still react. But at least we are headed in the right direction.
What accommodations did you and Lauren request for her in college?
We asked for them to find a place for her that would be safe from dairy. This was quite the challenge, since we live in a dairy filled world. They came up with a self-contained apartment on campus. Separate from the rest of the house. She is able to cook for herself & steers clear of any areas where pizza or food is served. This has been enough to keep her safe at school.
It was very difficult for me to pass the baton of “health watch” over to my son when he went to college. How have you been able to do that with Lauren’s severe dairy allergy?
Passing the “health watch” baton over to Lauren has to be one of the scariest experiences that we STILL struggle with daily. The good news is that since she’s been gone, she has proven herself to be a good self advocate in keeping herself safe. She did have two anaphylactic episodes since she’s been away (one could have been avoided with better diligence but the other could not) Lauren was in fact able to treat herself immediately with her epinephrine and called 911 for help. Her fast response is always critical in her outcome, and she is well aware of that, she also knows that her body keeps needing more epinephrine after the first one or two shots wear off. For me the scary part lies with the ambulance, and hospital personnel, who seem unaware sometimes how fast her reactions or biphasic reactions change in the blink of an eye. It’s paralyzing for us to think about “what if’s” So this is when we had to put our trust in Lauren & ask God to take over, so we wouldn’t lock her inside our house and never let her out.
Thank you Melissa & Lauren for inspiring hope in all of us!
I received an email today telling me about the new Mylan and Disney digital book, “Show-and-Tell Scout”. The email went on to state, “Mylan and Disney are excited to announce the launch of the “Show-and-Tell Scout” digital book, an educational storybook aimed at raising awareness about anaphylaxis (a life-threatening allergic reaction) in the school setting. An estimated one in 13 children in the U.S. lives with a food allergy, putting them at an increased risk for anaphylaxis. Because anaphylaxis can occur anywhere and at any time, it’s important to educate all families about food allergies – even those not managing a food allergy at home.
“Show-and-Tell Scout” follows the story of Scout, a young fox living with potentially life-threatening (severe) allergies to milk and peanuts. We learn about his severe allergies and the importance of being ready to respond should he experience anaphylaxis.
The “Show-and-Tell Scout” digital book is available exclusively on, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents. The “Show-and-Tell Scout” digital book is available exclusively on MyAllergyKingdom.com, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents.”
I think this is a great idea for these two companies to combine efforts to put out information on food allergies. However, there is a lot of information that I don’t agree with in the text of this book.
Here is the email I sent to the team that emailed me: “Thank you for forwarding the book to me. It’s exciting that Disney and Mylan are launching this book.
I wonder if there’s a possibility of changing the language in this book prior to releasing it to everyone? There are several items in the book that just aren’t correct:
On the page about Mrs. Fox telling the teacher on the first day of school about Scout’s allergies – based upon our experience and thousands of others – no teacher wants to hear about allergies on the first day of school. For the success of a child with food allergies at school, it is ALWAYS recommended to have such discussions months in advance of the school year starting.
Secondly, no parent is going to be allowed to train a teacher how to administer an epinephrine autoinjector. In every public school, it will be the responsibility of the school nurse to do this type of training. I believe it is required by law in our state of Colorado.
This is a somewhat detailed point, however any child who accidentally eats one of their allergens would never walk to the nurse’s office. The nurse would bring the epinephrine autoinjector to the child. It is dangerous for a child in anaphylaxis, or where anaphylaxis is a potential, to remain upright and walking.
Other items that I noticed, and that I believe other food allergy families would notice, is that Scout is sitting with children eating his allergens. This can be a dangerous practice, especially for young children who spill food, and for those exquisitely sensitive to their allergens.
Lastly, many children with severe food allergies will have a 504 Plan in addition to a severe allergy action plan. Of course, this plan would only be available in public schools, but might be worth a mention in the back of the book.”
While I believe the intent of the book is good; I’m not supporting the book as it is currently written. I’m hopeful that an edit will be forthcoming soon.
Many readers suggested that I look into EAT – End Allergies Together – a new non-profit focused solely on funding research, and promising that 100% of net proceeds will go to research. I have communicated with the founders, Kimberly Hall and Elise Bates, via email and was told that they will inevitably have some expenses as they go forward for staffing, etc. and they still promise that at least 80 cents of every dollar will go toward funding research. That is a phenomenal percentage, and well worth looking into if you want to fund food allergy research. Below are their Food Allergy Research Areas. You can make a request for a specific area, such as gut bacteria, for your donation to fund.
I recently wrote about the DBV Technologies Epicutaneous Immunotherapy “Peanut Patch” in my blog post, FOOD ALLERGY RESEARCH & THE PATCH. While DBV does not allow individuals or non-profit food allergy groups to donate to their research, it is available for you/your child to participate in a research study. Information about this participation is detailed in the blog post.
I also recently wrote about Traditional Chinese Medicine in my blog post, FOOD ALLERGY RESEARCH & TRADITIONAL CHINESE MEDICINE. Dr. Xiu-Min Li is the only doctor researcher in the USA practicing both Traditional Chinese Medicine, although her work is confined to immune conditions such as allergies, not the full range treated by other herbalists and acupuncturists, and doing research on TCM to cure food allergies, eczema, asthma, etc. There is information in this blog post about donating directly to her research.
Lastly, some people choose to donate their time and expense to research by becoming involved in a research study. This is a great way to donate to food allergy research. Of course, there are always medical risks with any research participation such as anaphylaxis, eosinophilic esophagitis or other immune system issues. You and your family will have to decide what level of risk you are willing to undertake. There may also be travel costs in order to check in with a doctor on a regular basis. If you’re interested in participating with a research study, ask your allergist whether you and/or your child is a good fit. Many research studies have qualifying criteria to become a part of the study. You can find current research studies at https://www.clinicaltrials.gov/
As Albert Einstein stated, “No problem can be solved from the same level of consciousness that created it.” Therefore, I’d like to present researched treatment which corrects many of the behaviors in the immune system that cause allergies – – Traditional Chinese Medicine (TCM.) And, in my opinion, it has the best chance to truly CURE food allergies.
I have been a patient in Dr. Li’s private practice and am currently using a TCM cream to lower the inflammation in my body to help heal my Eosinophilic Esophagitis and Mast Cell Disorder. I am thrilled with the results so far, and have seen a much higher level of energy for myself and less medication needed to manage my symptoms.
Dr. Xiu-Min Li is the only doctor in the US practicing both Traditional Chinese Medicine, although her work is confined to immune conditions such as allergies, not the full range treated by other herbalists and acupuncturists, and doing research on TCM to cure food allergies, eczema, asthma, etc.
Dr. Li has been involved in the medical field since the late 1970’s when she got an MD in both Chinese and Western medicine at a Chinese medical school in Zhengzhou, China. She went on to study integrative clinical pediatric immunology in Beijing, and then clinical immunology at Johns Hopkins Medical School in the US. It was here that she worked with Dr. Hugh Sampson, a foremost food allergy researcher. Dr. Sampson’s support of Dr. Li’s research has been key in moving it forward.
It is the combination of her knowledge of Chinese medicine and the Western medicine of allergy and immunology that is creating groundbreaking research toward curing food allergies.
There have been multiple research reports regarding Dr. Li’s research in the Journal of Allergy & Clinical Immunology. You can see a partial list of her research here.
In addition to her research, Dr. Li has a private practice with patients, infant to adult, using creams, herbs, and teas, in combination or individually, depending upon the specific allergic issues that are presented. With my sensitive gut, I was not able to tolerate swallowing any teas at first. Therefore I am using a cream, which I apply to my entire body daily. I laugh when I tell people that I am like the witch Elphaba from Wicked – an entire body of green! I will soon graduate to soaking in herbs and then swallowing the tea.
Since my experience with Dr. Li’s protocol is more recent, I’ve interviewed two Moms, Selena Bluntzer and Deirdre Olsen, who discuss why they chose Chinese Herbal Medicine treatment and their daughter’s progress under Dr. Li’s care:
Selena, What made you and your child choose to pursue treatment with Dr. Xiu-Min Li?
My daughter has multiple food allergies, asthma, and eczema. I had researched various treatment options for years, and after a friend of mine made plans to have her children see Dr. Li, I realized it could actually be a reality for us, as well. We live in Texas, so it wasn’t an obvious thought for me to pursue treatment so far away. However, Dr. Li’s research and treatments had been the only ones that gave me a real sense of a possible future cure. There is no other researcher/practitioner in this space, to my knowledge, whose work encompasses the “whole condition” – addressing all of the stages of the “allergic march” – eczema, asthma, allergic rhinitis, food allergies, etc.
My daughter sees Dr. Li in her private practice clinic, which she manages independently of her work at Mt. Sinai. While Dr. Li is a researcher at Mt. Sinai and manages a full scale lab plus a production site for her medicine, she is also the only food allergy researcher that has a clinical practice. Patient data from her clinical care is used to fuel her research endeavors, the same way that other researchers use the findings from their closed clinical studies. She is constantly innovating and refining her numerous treatments. She is able to treat her patients as patients, not as study participants, so she can improve her medicine as she helps us. We are definitely receiving personalized medicine, as our protocol is tailored to my daughter’s specific needs. My daughter likes and trusts Dr. Li, which really helps with the treatment process.
Deirdre, What made you and your child want to participate in the Chinese Medicine research?
Our daughter (now 13) was diagnosed by 24 months with severe food allergies, eczema and asthma. It was very overwhelming. We were constantly going to the dermatologist and pediatrician to keep her skin and lungs under control.
We live in NYC and after seeing a number of dermatologists and allergists we finally met Dr. Paul Ehrlich. During a visit after another skin flare up, he looked at my husband and I and said, “I really would like you to consider seeing Dr. Xiu-Min Li.” We were in a vicious circle of flare up, steroid cream, calm, then it would start all over again. Jaclyn had allergic dark circles under her eyes, and her skin as well as her entire immune system was always “on alert” ready to attack. We spent many years like this.
We met with Dr. Li for two hours on the first visit. We took copious notes and hung on every word she said- and still do! Our daughter (then 9) took to Dr. Li who has a sweet, patient and loving demeanor. After spending so much time with us, we decided to start TCM with Dr. Li.
When did Jaclyn begin using TCM?
Jaclyn started 5 years ago and has had amazing results. Her quality of life has increased immensely. Her once off the charts IgE at 6600 is now hovering just below 800. She is able to eat a number of foods that she couldn’t 5 years ago. She is cleared for food challenges to egg, hazelnut, coconut and brazil nut in the upcoming months. She rarely, if ever, needs a puffer. She rarely gets sick now. Her skin is clear and smooth for 4 1/2 years.
Has Jaclyn had any type of reaction?
Jaclyn has not had any adverse reaction to the herbs. A few times she felt nauseous after a bath or starting a new capsule. In this case we contacted Dr. Li and she dialed back the dose or eliminated it.
Have you noticed any decrease in reactions to her allergens? Or any changes in overall health?
Jaclyn had contact eczema. Everywhere we went we put down a towel or sheet so she would not break out. We have not done this in 4 1/2 years. Where she used to get 4 colds a winter, she is down to 1 a season now. Jaclyn’s seasonal allergies are also much better. She still is allergic to a number of trees and pollen but no where near where she was.
Jaclyn’s overall health is much better. She is rarely sick. She eats well and is comfortable in her own skin.
Thanks Selena and Deirdre for sharing your experience!
If you’re interested in learning more about Traditional Chinese Medicine, please check out the TCM website here. There is also a Facebook page, Chinese Herbs for Allergies for anyone interested in the TCM treatments.
Lastly, if you would like to find out more about Dr. Li’s specific programs and studies currently open to funding, you can speak to either: Susan Weissman, a parent of a patient who volunteers her time as her fundraising coordinator. You can reach her at Susan@SusanWeissman.com; or Erica Edwards at Mount Sinai who can be reached by phone at: 212-659-8500.
For those of you ready to donate to find a cure for food allergies, you can support Dr. Li’s research at Mt. Sinai by making a check payable to the Icahn School of Medicine at Mount Sinai.
In the memo portion, make sure to write Dr. Li – Chinese Medicine for Food in Jaffe
Mail check to the following address:
The Mount Sinai Development Office
Attn: Erica Edwards
One Gustave L. Levy Place, Box 1049
New York, NY 10029-6574
In my quest, I came upon the company DBV Technologies. DBV is the company performing research on the Viaskin electrostatic patch, which administers an allergen directly on the skin.
I spoke with Susanna Mesa, DBV Technologies Vice President of Finance, Investor Relations & Strategy. I inquired whether an individual could donate to the research and was told that DBV does not take donations from any individual nor any food allergy non-profit. They want for their research to be completely free of any influence or desire for specific results. Therefore, the best way to support this type of research is to get involved in a research study. (More info on that below). Our discussion was so compelling that I wanted to pass on the information about their product.
As their website states, “DBV Technologies believes EPIT® (Epicutaneous Immunotherapy) has the potential to provide all of the intended benefits of a disease-modifying treatment in allergy, while avoiding severe or life-threatening allergic reactions.” In fact, there have been no systemic reactions to their product by any patient in their 10 years of research. Since the patch is applied to the skin, there have been mild topical reactions which usually decrease within a few weeks of wearing the patch.
DBV monitors patients involved in their research for 3 years. After the first year of wearing the patch, protection from anaphylaxis, in case of accidental exposure, has been seen to occur. Research has shown that those wearing the patch for longer periods of time, such as 24 months, have been able to consume more of their allergen without a severe adverse event. Patients do still carry an EpiPen, but they are able to travel and eat more comfortably. Additionally, if a patient removes the patch, there isn’t an immediate re-sensitization to the allergen within the first day.
As of November 1, 2015, renowned food allergy researcher, Dr. Hugh Sampson, became the Chief Scientific Officer of DBV. You can read the press release here.
The design of the patch has also taken into consideration the caregiver. I asked Lianne Mandelbaum of No Nut Traveler a few questions about her experience with her son, Joshua, who is involved in the peanut patch study.
What made you and your son want to participate in the Viaskin research?
I always had 2 allergists for Josh – one local in NJ and one at Mt Sinai because I always wanted Josh in a clinical study (as it seemed the allure of a cure was so far off) and Mt Sinai was always conducting studies. But to be honest, our bad airline experience with United (the one that spurred me to launch NoNutTraveler) made me even more determined to get him in a study. The experience really shook me to my core, thinking his allergy could potentially dictate his future life choices. For example, he is a great tennis player and is starting to really compete and at some point he will need to fly to tournaments (and Jet Blue does not fly everywhere).
I was that mom constantly calling Mt Sinai to check if there was a study he was eligible for. I had also started researching private practice OIT and Chinese herbs, but then we got the call for the patch study, and it was a no brainer to say yes. I read all the studies in Europe on the patch and there were no life threatening reactions due to treatment (which was always a fear of mine). Plus, if you got the placebo, after a year you got treatment at a higher dose patch , so I felt it was worth it even if we had the placebo to start. I felt we could always try the other options but this was a really great opportunity for him.
Which research study is he a part of?
He is part of CoFAR6 Peanut Epit- out of Mt Sinai NYC.
When did your son begin wearing the Viaskin Peanut Patch?
He started wearing it a little over 2 years ago.
Has he had any type of reaction?
His only reactions are hives at the site of patch which continues today although they are less angry looking.
Have you noticed any decrease in reactions to peanuts?
He had a reaction at 1/8 of a peanut at the oral challenge to enter the study. After a year he did go into anaphylaxis at his challenge but it was at 2 peanuts- a huge difference.
About 7 weeks ago he had a decrease in his peanut allergy skin prick test. This is the first decrease in 8 years and it was a big decrease- we are so hopeful as to what it means.
Our final challenge is at 2 years 6 months in May and we are hopeful but also cognizant that 2 years 6 months may not be enough time and hope to get more patches if that is the case.
Being in a study has empowered Joshua. He feels he is doing something that has the potential to really help other kids with peanut allergy. I believe he feels this is a way to “fight” the allergy. I am also grateful he went into anaphylaxis after year one, yes you heard that right – I am grateful. Josh had not had anaphylaxis since he was 2, and he did not remember what it felt like. He not only knows what it feels like now. He saw how quickly the Epi saved him and he is vigilant about carrying it.
Thanks Lianne for sharing your experience!
DBV is currently recruiting for three different clinical trials: peanut, egg, and EoE. More information about each of these trials is available here.
The PEPITES (Peanut EPIT®Efficacy and Safety Study) is the first food allergy research to reach a Phase III trial with the FDA (Food & Drug Administration) in the US. It will be a randomized, double-blind, placebo-controlled trial designed to assess the efficacy and safety of Viaskin Peanut in approximately 330 pediatric patients in around 30 centers in North America (United States and Canada), Australia and Europe, according to the DBV Technologies website. This is very exciting!
I’m very hopeful that the “Peanut Patch” will yield promising results toward research for a cure for food allergies!
I have recently begun speaking with local Colorado Springs, Colorado Allergists and their staff regarding the large number of teens and young adults who have died from anaphylaxis.
I wrote an article for Allergic Living, Teens Speak Up About Averting Food Allergy Tragedies, which showed me that too many teens aren’t taking the precautions necessary to keep themselves safe; however, the teens did state that they listen to their parents and their doctors about food allergy information.
In Dr. Ruchi Gupta’s newest survey of parents, which she titled, Parents in dark about using epinephrine for kids’ food allergies, she found that “Less than 70 percent of parents recalled their allergists explaining when to use epinephrine and less than 40 percent said the same of their pediatricians.” Therefore, I question whether teens and young adults are getting good information from their parents.
Therefore, I felt it was time to bring this information to the attention of allergists in my area.
Here is the checklist I’ve suggested for allergists to discuss with parents, kids, teens and young adults who have food allergies, EVERY TIME they see the patient. Similar to an asthma checklist, which my son completes each time he sees our allergist, this checklist would be given to the patient to complete and review the gaps in behavior that could potentially create a life threatening situation.
A PDF version of this checklist is available here.
From what I’ve found, allergists in my area are not currently reviewing these items with their food allergy patients. In an educated patient, the checklist could be reviewed quickly and rewarded with a high-five or fist bump! In patients who need more awareness, the allergist can remind the parent and child/teen or young adult which behaviors are risky and where to make changes.
If a food allergy patient isn’t seen but once a year to get an EpiPen prescription refilled, then it is especially important for the physician to review these questions to ensure safety. I’m convinced this would begin to educate the patients and parents who so desperately need to hear from their doctors how to practice vigilance.
Please FEEL FREE to share this with your allergist and/or pediatrician and help to save a life!
I have been a member and/or officer of several food allergy related non-profit groups for almost 20 years. I have the hope that when I send an organization my hard-earned money, they will be good stewards of my donation.
My review of four food allergy organizations showed me that salaries and operational expenses take up a large part of the revenue stream of many food allergy non-profit groups. As a percentage of income, only one organization is giving away large amounts of money toward research – in fact it’s 64% of their revenue! Read on for what may change the way you contribute to food allergy organizations.
First a disclaimer – I am not a Certified Public Accountant. I majored in Finance, and have a Bachelor of Business Administration from The George Washington University. I continue to work in the field of finance providing financial management to several businesses, in addition to my work with AllergicChild.com.
The 990 is just one avenue to glean information about a non-profit. Utilizing Guidestar.org and Charity Navigator can provide additional information in your search for the best organization to donate money, in addition to annual reports of the organization and information from their website.
FARE’s mission, as stated on their website, is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments.
FARE is the largest food allergy non-profit organization with $15.5 million in total revenue in 2013. They spent 35% of this, or $5.5 million on salaries and employee benefits. Then CEO, John Lehr, received a total of $341,968 in salary and other benefits. There were 8 other key employees listed with salaries above $100,000; and a total of 72 people employed in calendar year 2013. They gave $2.1 million (or 13% of income) in grants. The largest single grant was for $825,423 to Mt Sinai School of Medicine for “Food Allergy Programs”. The only grant listed for “Research” was $122,070 to Stanford University School of Medicine. FARE was the only organization with investments or other securities listed on their 990. They listed 2,982,570 shares in “ARC” which is Allergen Research Corporation, which develops desensitization treatments for food allergies. These shares have a book value of $2.4 million. Charity Navigator gives FARE four stars overall, but only 3 stars for “financial”.
FARE’s 2014 Form 990 was just released showing a decrease of annual income to a little under $13 million. They spent 47% of their income, or a little over $6 million, on salaries and other benefits of their employees. James Baker Jr. was the CEO from 8/1/14, and made $208,151 for 5 months until the end of 2014. There were an additional 9 employees receiving salaries above $100,000 for 2014, and a total of 81 employees during the year. There is no mention of the shares of ARC on the 2014 990 except that “Investments-other securities” now show a value of $150,505.
In 2014, FARE gave only $1.4 million away in grants: a paltry 10% of their gross income. “Research” was indicated in over $1 million of the grants. Charity Navigator has not updated their rating for the year end 2014.
AAFA – Asthma and Allergy Foundation of America
AAFA’s mission, as stated on their website, is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research.
AAFA was the next largest organization with $3.7 million in revenue in 2013. They spent $1.6 million (43%) in salaries in 2013. William McLin, President and CEO, made $274,251 in salary and other benefits. They had 2 other key employees with a salary over $100,000, and a total of 17 employees. They gave $161,500 (4%) in grants. The largest grant was $60,000. This same amount went toward “Biomedical research” to both Massachusetts General Hospital and to the University of Iowa. I will include KWFA here because of the merger with AAFA. KWFA had $229,566 in revenue with $102,372 (44%) going toward salaries. In 2013, there were no employees listed. Charity Navigator gives AAFA 4 stars overall.
In 2014, AAFA made $3.5 million and spent $1.9 million (54%) on salaries. Cary Sennett is the new CEO as of June 2014, and made $149,303 for that partial year. There are now 3 other key employees with a salary over $100,000, and a total of 26 employees. They gave $100,000 (2%) in the form of 3 separate grants – all for “Biomedical research.”
APFED – American Partnership for Eosinophilic Disorders
APFED’s mission, as stated on their website: To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.
APFED was by far the best steward of its funds in 2013. With $638,083 of total revenue; they spent only $56,549 (or 8%) on salaries. Additionally, they gave away $311,990 (48%!) in cash grants. Their largest single grant was for $100,000 to Children’s Hospital of Philadelphia for research. They listed 5 employees for 2013. APFED is not rated by Charity Navigator.
In 2014, APFED made $451,942 in total revenue; spent $93,393 (20%) on salaries, had a total of 4 employees, and gave away $290,000 (64%!!) on grants; the largest of which was for $70,000 to ARTrust. Once again, APFED was the best steward of funds in 2014.
FAACT – Food Allergy & Anaphylaxis Connection Team
FAACT’s mission, as stated on their website, is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis.
FAACT filed a 990 in 2014 and their total revenue was almost $136,000. They paid $10,637 in salaries, or 7%. There were no grants listed.
Summary: For the almost 17 million dollars given to these organizations in 2014, there is a little less than $1.8 million given in grants – and some of this is going toward educational grants and not toward research. The question becomes – do you believe in the mission of the organization? The vast amount of money is clearly NOT going toward research for a cure? Are you being helped by the conferences the organization provides; the educational webinars; and the lobbying efforts? Then send in a donation! However, if you thought your monetary donation was primarily going toward finding a cure for food allergies, I’d suggest finding somewhere else to donate!
My son, Morgan, is currently a sophomore at the University of Denver (DU). DU is a private university in the heart of Denver, with approximately 5000 undergraduate students.The school requires that all students live on campus for two years, which sounded impossible when managing food allergies. Yet we tried to be open minded when we first visited the campus. After touring the school, meeting with the Dining hall chefs and with the Housing office – we determined it was going to be not only safe, but great!
DU has been wonderful with accommodating students with food allergies; however their website doesn’t have very much information about the wonderful things that they do. We found out how great they were back in 2008 when our daughter, Michaela, (who has celiac disease and a mast cell disorder) attended a music camp for two weeks during the summer. The chefs prepared her meals based upon a list of safe brands of foods and menus that we provided prior to the beginning of the camp. Each meal was safely prepared for her, and it convinced us that this was THE school for food allergy students!
I recently spent 90 minutes in a meeting discussing food allergies and how it impacts students at DU with the Vice Chancellor of Campus Life, Dr. Lili Rodriguez, Dining Services Resident District Manager, Ira Simon, and the DU Communications Director, Elise Chester (who has a two year old son with severe peanut allergies!) I wanted to encourage them to provide the details of how amazing they are on their website. The meeting proved to me that they are totally ready to take on the topic of food allergies on campus.
Here’s some of the takeaways from the meeting:
After Morgan chose to attend DU, he emailed Ira Simon to request a meeting to discuss his food needs. Ira set up the meeting to include all the chefs that worked at all the residence halls on campus. That way Morgan would feel safe eating anywhere on campus. I attended this meeting along with Morgan. We were both very impressed with all the knowledge and willingness the chefs had to provide whatever safe food Morgan needed. A personal meeting with all the chefs on campus is a staple for every student with food allergies, and this personal meeting will now also be part of the campus tour for all families who request it so that they can discuss their child’s specific food allergies with the chefs.
All of the chefs have gone through AllerTrain to be trained on handling food properly to ensure no cross contact, and to be able to properly read labels. You won’t see this information currently on the DU Dining Services website, but this is soon going to be included.
What’s also forthcoming is a request for each student with food needs to quarterly (DU is on the Quarter system) meet with the chefs to review any needs not being met and to share compliments and concerns. This will ensure that the chefs maintain the personal relationship they like to have with each student with food allergies.
DU currently lists the ingredients of every food they serve on their Dining Services website and it’s also listed in their cafeteria. They want to expand the ingredient listings to be available on a smartphone App. Better yet, they hope to be able to have a student input their allergy or allergies and be able to view a menu of safe foods for the upcoming week. Morgan already utilizes the website to click on a menu item to see if any of his allergens (peanuts, tree nuts, sesame, fish or shellfish) is listed as an ingredient. Not all kids are accessing the website currently, which is also fine. The chefs enjoy getting to know the students and what food allergies they are managing.
DU currently offers “Simple Servings”, which are meals free of 7 of the top 8 food allergens, in one of their cafeterias. The only food they do serve is fish. Separate equipment, storage areas, utensils and preparation areas minimize the chance of cross contact in the kitchen.
They have a dietitian on staff to discuss individual nutritional needs of every student, and to manage food allergies, intolerances, diabetes, etc.
DU has been wonderful to Morgan and Dining Services basic motto is “We will provide anything you need to be safe.” That is so comforting as a parent! And this will also be expanded upon on the website in the future.
We also discussed how the University can better identify and manage the huge number of incoming students with food allergies. I was thrilled with how open minded everyone was to discuss better ways to manage students with food allergies, and to provide more information about the University’s current policies to incoming families.
The administrators plan to add the question of “Do you have food allergies?” to the housing request form, which is completed by all admitted students. This will allow the Housing department to match students better to ensure safe dorm living with no food allergens in the room. It will also prepare the Resident Advisor (RA) to be trained on EpiPen administration, and to ensure that other students in that area of the dorm are aware of which foods shouldn’t be eaten. Gathering information from students with food allergies months prior to the start of school will allow DU to share the information with professors too, should accommodations be necessary in the classroom environment.
Of course, any accommodations will need to be approved through the Disability Services Office (DSO) which will also be receiving an update to their area of the website to include food allergies as a potential disability. The DSO paperwork is also slated for an update to include food allergies.
The plan is for all campus staff to be trained on the administration of an EpiPen, including RA’s. Colorado passed a law earlier this year allowing for a Good Samaritan to administer an epinephrine autoinjector, and this law extends to college employees.
One of the housing issues that may impact students with environmental allergies or asthma is “comfort animals” that are brought to college to help calm anxiety issues. Some of these animals are furry friends, similar to service animals. Housing has to place students appropriately in zones so that shared ventilation systems do not cause issues for those with allergies and/or asthma. Again, DU is planning on obtaining this information sooner in the process by asking the question on the Housing application about service or comfort animals.
I’m very hopeful that the DU website and housing application paperwork will be updated by February 2016 to include all of this information for students with food allergies and their families. It’s so exciting to watch a university take on food allergies!
For those of you in attendance, you know what a special weekend we had at the Food Allergy Bloggers Conference in Denver! And for those of you who weren’t there, you were certainly able to keep up with all the activities via social media. We are a talkative bunch on Twitter, Facebook, and every other social media site you can imagine!! The hashtag is #fablogcon if you’d like to catch up on everything that was tweeted.
Robyn O’Brien provided the keynote speech about our food system. She asked the question, “Are we allergic to food or what’s been done to it?” Robyn is a fellow Coloradoan, and we got back 10 years to when her youngest daughter got diagnosed. She has really taken on the food industry, and was a real highlight to my first Bloggers Conference.
Jenny Sprague, shown here with me, is the organizer and founder of this great conference. She coordinates the entire conference from her home in Maine – and let me tell you that’s a feat in itself. It takes the better part of a year to obtain sponsors, presenters and speakers. And she has the best Expo of any food allergy conference I’ve ever been to. There are so many vendors showing off their new products that it’s easy to get lost for hours learning about new EpiPen cases and “free-from” foods. The swag bags we received were outstanding with samples from numerous vendors.
We actually received two bags because there were so many products! With my limited diet, my son was SO happy I shared my goody bags with him…he took them back to his dorm to share with numerous friends.
And speaking of Morgan, he and I spoke about College Accommodations for food allergies, along with Jim Long, former senior attorney for the Office of Civil Rights at the Denver branch. Jim is a rock star when it comes to understanding 504 Plans, and being able to mediate a solution for a student with food allergies.
Morgan also got to meet two wonderful chefs during the conference: Cybele Pascal is a favorite cookbook author in our house! Her lettuce wraps are superb. She and Morgan had a lively conversation about how to reach college students with food allergies. Morgan is a big fan of “Tasty”, a video production of recipes. Sounds like something will be forthcoming out of this!
and Keith Norman
Keith’s ability to provide safe foods for so many different dietary needs is amazing. He came in to the Denver Renaissance Hotel and trained their entire staff about cross contact and how to safely feed patrons with food allergies and gluten intolerance. I’m sure the hotel will never be the same – and that’s such a good thing!
So, mark your calendars for next year’s Food Allergy Bloggers Conference. I can’t wait!
Recently, both my son, Morgan, and I have had interesting issues eating out at restaurants.
I have been diagnosed with an eosinophilic disorder, which means that I make my own safe food and bring that to a restaurant when meeting friends. It would be wonderful to be able to eat food prepared by a chef, but currently that isn’t yet a possibility. I eat only organic foods, and I eat just 4 foods currently. It’s certainly not where I hope to be forever, but for now, it’s what my reality is.
My husband and I met friends in Denver, CO at the Vesta Dipping Grill expecting a wonderful dining experience for the three of them ordering food. Their expectations were met; mine however was a little different. While the restaurant claims to be very accommodating to allergies, the assistant manager was less than thrilled with me bringing my own food. In fact, after everyone else’s food was served, he marched over to the table to tell me I was breaking the law! When he commented that if I brought in the food because of a medical condition that would be different. This is when my husband stepped in (I was crawling under the table at this point), and informed him that yes, it was a medical condition. At that point the manager told me that the next time I come in, I will need a doctor’s note to bring in my own food. This entire interaction took less than 5 minutes, and I was mortified.
I have been bringing my own food into restaurants for literally the last 9 years. This is the first time I’ve had any restaurant employee even make a comment about the food, much less tell me that I’m a law breaker!
I’ve searched high and low through all of Colorado’s Retail Food Establishment Rules and can find nothing that states, “no outside food allowed” in Colorado restaurants.
The more interesting part of this story is that when I shared it with my son, Morgan, he told me about his experience with the same restaurant. He and a friend ate there a few months ago thinking they would be great with his peanut, tree nuts, sesame, fish and shellfish allergies with their 8 different allergy menus. Instead, his food was served with a dipping sauce filled with sesame seeds. This was after he meticulously discussed his food allergies and gave his Chef Card to the waiter. He is thankfully very careful about checking his food order when he receives it, and he noticed that his food was not safe. He said he will NEVER eat there again because of this mistake!
Moral of the story – don’t trust a restaurant automatically that says they are allergy aware! Always check your food before taking a bite, and of course always carry your epinephrine.
Update and Follow Up:
My husband, Robert, wrote an email to the owner of Vesta Dipping Grill, Josh Wolkon, explaining our disappointment and embarrassment with our dining experience. Josh followed up with a personal conversation with Robert outlining what they’ve done to change the dining experience for customers like myself who have to bring in food. They utilized our experience for a 2 hour training of all his restaurant employees in his 4 restaurants, and have developed a written, detailed plan for managing outside food brought in because of allergies.
My husband also explained our son’s experience with the sesame seed in the dipping sauce. Josh was very disappointed in this major mistake, and said that this too will be utilized to better train his employees of the seriousness of food allergies.
I’m very impressed that the owner of the restaurant would take his time to speak with my husband, AND to train his employees further. Additionally, we’ve been promised a gift certificate for a future dining experience, which I’m sure will be pleasurable!
This past week has been rough for those of us in the food allergy world. There have been two deaths from anaphylaxis: Andrea Marianoof Canada and Simon Katzof Colorado.
These deaths have hit me hard. Maybe because they both were teens who ‘always carried’ their epinephrine, but didn’t do so on this one occasion – a decision that would change the course of their life. Maybe it’s because Simon Katz lived just one hour from me. Maybe it’s because these deaths were so avoidable.
Regardless, I’ve come to the conclusion that we need to take a stand and say, “NO MORE DEATHS!”
I don’t want any more parents to become advocates in the food allergy world after they’ve endured an unimaginable tragedy. There needs to be a complete change in how the message is given to teenagers to “always carry your epinephrine!”
How to go about this?
I’d like to ask Mylan and Sanofi (the makers of EpiPen and Auvi-Q) to fund and lead a campaign, along with national food allergy organizations like FARE, FAACT and Kids With Food Allergies, to get this message out to the following stakeholders:
1) ER doctors – I can’t even count the number of times I’ve heard food allergy families recount the miscommunication they’ve been given from an ER doctor about food allergies and epinephrine auto-injectors. These doctors must be educated to counsel families properly about EpiPens and Auvi-Qs. The devices should never be left in a car glove compartment – it’s criminal for doctors to be giving out this advice!
2)Family Practice doctors and Pediatricians – It’s my belief, based upon my experience, that if a child has a peanut allergy they should be referred to an allergist. An allergist is better able to manage these allergies that research has shown are more likely to cause anaphylaxis. I’ve heard too many families tell me that their child’s peanut allergy isn’t serious enough to warrant an epinephrine auto injector, according to their pediatrician. This makes me cringe and shows that more education is needed for these doctors if they are not going to make a referral.
3) Allergists – My experience has been positive with allergist’s knowledge of epinephrine auto injectors and the need to always carry them. I do see an opportunity for allergists to have more training on how to work with teens to create an agreement on compliance however. Having a doctor empower the teen provides more weight than a parent reminding, “do you have your epinephrine?”
4) Parents/Families – There are many lessons that families need to pass on to their children, who grow into teenagers, with food allergies – always read labels, don’t eat foods that don’t have a label, and always carry your epinephrine. The likelihood is that mistakes will be made. But the one message that parents need to understand from the first day of diagnosis is to never leave home without epinephrine. Yet many parents have not understood this message enough to follow through every day, every time they leave the house. Children watch what we parents do, not what we say. American Express used the tagline “never leave home without it” for years. We need to encourage all families to follow this sage advice! We also need to encourage families to let the school know if your child has food allergies and is to carry epinephrine. Complete the school paperwork, and tell those who need to know to keep your child safe!
5) Teenagers – Today’s teens are immersed in social media. Let’s meet them on Facebook, Twitter, Instagram, Tumblr, etc. with messages about food allergy awareness and carrying their EpiPen/Auvi-Q. Using the technology of their smartphones, we can reach teenagers where they live, to show them it’s cool to have epinephrine with them. If something were “Apple cool”, I’ll bet teenagers would be clamoring to have it! It’s also ‘sick’ to train your friends on allergic reaction symptoms, and ‘dope’ to train them on EpiPen/Auvi-Q administration.
6) Schools – More and more states are passing legislation to allow for stock epinephrine in schools. Yet if the school isn’t aware of the students who have food allergies, or don’t have it available at school events, it’s not going to be helpful. Schools need to run “Anaphylaxis Drills” to determine if they are prepared for a teen suffering a severe allergic reaction. Many schools don’t know the steps to take for such a drill.
Lastly, I’d like to ask for Sanofi and Mylanto createan epinephrine device that is smaller and more likely to be carried by teenagers. The cost of EpiPens and Auvi-Qs have increased drastically over the last few years. Please take some of those profits to fund new technology in compact, easy to carry auto injectors.
If you haven’t heard of Traditional Chinese Medicine, you’re in for a treat! And if you have, you know that Henry is the author of “Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure”. Henry graciously offered to answer a few questions about this treatment option for eczema, food allergies, mast cells and even Eosinophilic Esophagitis!
First of all, Nicole, thanks for giving me this opportunity to communicate with your readers. I hope they will find it informative.
The six most obnoxious words in the English language are “as I say in my book” so at the expense of stealing my own thunder…. I met Dr. Li when I went up to her office at Mount Sinai at the suggestion of my cousin and co-author of an earlier book, Dr. Paul Ehrlich, a prominent pediatric allergist. We also had a new website, AsthmaAllergiesChildren.com, and he told me, “I have been practicing for over 30 years and this is the first thing that sounds new and hopeful to me.” So I met Dr. Li. When she showed me photographs of the dramatic changes her therapy had made on really bad atopic dermatitis, I knew something was up. I mean, these were bleeding, sores on the feet of a ten-year-old girl. Within a few months, the skin was clear and she was painting her nails. I have a daughter. That means something to me.
How is Oral Immunotherapy (OIT) different from TCM?
OIT, like all immunotherapy, works by essentially over-stimulating the part of the immune system that produces allergic antibodies—allergen-specific IgE—by feeding progressively larger doses of the allergen until it can’t keep up with demand, allowing the part that produces tolerogenic antibodies—IgG—to gain the upper hand. Instead of allergen-specific IgE occupying the receptors on mast cells and basophils, IgG starts to occupy them instead. Allergens that once triggered reactions by connecting with IgE on those cells are rendered harmless.
Traditional Chinese medicine as practiced by Dr. Li works on modulating the immune system. There are two kinds of helper cells involved, Th1, which helps fight infections, and Th2, which is associated with allergies. In a normal immune system, IgE is a tiny fraction of IgG. But for various reasons, Th2 and IgE gain a disproportionate share of immune response. Dr. Li’s therapies restore Th1 and Th2 to their natural equilibrium. Oh, and one thing I have to stress is that Dr. Li also treats digestion so that the gut has a better chance of breaking down allergenic proteins before they can be absorbed into the blood stream and find their way to different parts of the body.
Let me add that immunotherapy and TCM are not competitive or mutually exclusive. TCM patients are also receiving OIT, just as they are receiving shots and sub-lingual immunotherapy. There’s no single therapy that will help every patient in the long run.
How long has Traditional Chinese Medicine (TCM) been used by Dr. Li to treat patients for food allergies?
Her private, independent clinic got started to treat recalcitrant eczema while she did more conventional research in her “day job”. However, in the mid-1990s, food allergy mothers she met at a fundraiser for the Jaffe Food Allergy Institute, where she was doing research, upon hearing of her success with eczema, told her their kids’ stories and she was so moved she set out trying to find ways to help, backed by Dr. Hugh Sampson, her boss. It was a very bold move. Dr. Li was trained in both western medicine and TCM. She looked to the classical TCM formulary for answers, and started to find them, starting with a treatment for intestinal parasites. It is important for your readers to understand that while Dr. Li is following all the NIH protocols for her investigational drugs, she is also allowed to use versions of these medicines as supplements in her clinic.
Is she working on having fewer pills to take/teas to drink as part of her protocol?
Yes, Nicole. One of the problems with these treatments is that because they are derived from plants, therapeutic doses require lots and lots for prolonged periods. Compliance is a challenge for all of us, whether we have diabetes, asthma, or even just take a low-dose aspirin (as I’m supposed to do—don’t tell my doctor). Dr. Li works with her own lab and scientists in China to refine the medicines and reduce the burden on patients. Her food allergy herbal formula-2 had a dosage of 10 pills, three times a day for a phase-2 trial. Lots of subjects had trouble. The next trial will use B-FAHF-2–refined with butanol, a form of alcohol—that will take the dose down to six or eight pills a day total. Much easier.
Have there been any patients on TCM long enough to say that their immune system has been remodeled, and they are no longer allergic to foods?
Yes there have, although most of her patients have complex co-morbidities—and it’s a work in progress for many of them. I suggest your readers also check out an article published last year in a Canadian journal about three cases of frequent severe food anaphylaxis to see how dramatic the changes can be.
In a video at last year’s Food Allergy Bloggers Conference, you and Dr. Li were interviewed for a podcast. Dr. Li mentioned using TCM for patients with Mast Cell Activation Disorder (MCAD). Has she had any success with patients with this condition?
In the new book that Dr. Li and I have co-written, there is case of this, also called mast cell activation syndrome. Just so you know, MCAD or MCAS for mast cell activation syndrome is disease in which mast cell degranulation is triggered by all kinds of things, from foods, to exercise, to heat…really lots of things. It didn’t even have a name till 2010 or a practice parameter till 2011. It can be IgE mediated or not. We have one whole chapter in our book devoted to one case of a girl of 14 who suffered for 5 years without a diagnosis even, and almost died. Dr. Anne Maitland, a colleague of Dr. Li’s, is gaining a reputation as an MCAS specialist, and the two of them are doing great work. The case we write about it the book will tug your heart strings.
What about children with Eosinophilic Esophagitis (EoE) – are they able to tolerate the herbs? Have any children been ‘cured’ of their EoE?
The short answers are “yes” and “yes”. In my first book I have a case of a boy who was successfully treated, and according to his mother now has the enviable position of being able to eat pizza every day with his friends. Before he couldn’t tolerate dairy.
Let me add a key point here—all Dr. Li’s treatments are highly individualized. You don’t go in and get the food allergy pill, or the asthma pill, or the EoE pill. You get a combination of things that help with the multiple organ systems that are involved. The herbs overlap, and so do their effects.
And one more critical point: Dr. Li is a full-time scientist and a part-time healer. The scope and ambition of her research is breathtaking. Her chemists and biologists love working for her. A month doesn’t go by when I don’t hear about something new emanating from her lab or suggested by researchers elsewhere who have been following her work.
Tell us about the new book you are writing – when should we expect it? What’s the topic?
Think The Godfather and The Godfather Part 2, where the sequel is as good as the original. This book updates the food allergy research from the last book but also goes into greater detail on ASHMI—anti-asthma herbal medical intervention, which I only wrote about briefly the last time. But it’s huge for people with this condition. It also goes into the atopic dermatitis treatment at length, Crohn’s Disease, MCAS, and some other things. I wrote the first one the way I did because I was learning the science on the fly, but this story is much bigger than any single allergic disease. Dr. Li is getting an award next year from the Future of Health Technology Institute, which is normally very high-tech and where the people obviously see this as very important for the way we understand and treat disease. The new book will be out some time in 2016. After writing two books in three years, don’t expect a third one any time soon, although I know if there is it will be better than Godfather Part 3.
Henry Ehrlich is the editor of asthmaallergieschildren.com and co-author of Asthma Allergies Children: a parent’s guide and half a dozen other books. He was a long-time professional speechwriter, with three grown children and one granddaughter.
I’ve just finished reading this book about gut bacteria, which has led me to believe even more strongly in the role that good gut bacteria plays in health. While the book doesn’t specifically cover food allergies, it does state that “Dysbiosis, or microbial imbalance, is observed in people with a variety of health problems such as Crohn’s disease, metabolic syndrome, colon cancer, and even autism.”
The authors (both are PhD’s in Microbiology and Immunology at Stanford University) also cover the damage that our hyper-hygiene world does to killing off good gut bacteria – along with killing the bad pathogens. This phenomenon, the hygiene hypothesis, has been postulated as one of the potential causes of food allergies.
Research has found that the bacteria in our gut talk to other areas in our body, constantly regulating our body. So, if a child doesn’t have the proper bacteria to tell the body to NOT react to foods such as peanuts, tree nuts, eggs or dairy – the body believes these foods are a pathogen, and protection is needed – thereby initiating the allergic reaction.
Of further interest to those with children with Eosinophilic Esophagitis (EoE) is the information provided on the mucosal immune system: “The mucosal immune system contains two branches, one that reacts aggressively to a threat (the pro-inflammatory side) and one that dampens the aggressive response once the threat subsides (the anti-inflammatory side). The proper response to gut microbes involves a continual balancing act between these two branches, much in the way that a seesaw is balanced when equal weight is placed on both sides. When the seesaw is perfectly balanced, immune harmony is achieved.”
There is a link between gut microbiota and personality/psychological issues. In research with mice, microbe-free mice had memory-related problems. “Chemicals produced by these gut bacteria can penetrate the walls of the intestine and seep into circulation and reach the brain.” More research is being done to identify these chemicals and how they affect our mental state.
The book has convinced me that a healthy diet of vegetables, probiotics, fermented foods and MACs (Microbiota accessible carbohydrates) are in our family’s future!
Most of you reading this blog are probably familiar with asthma – the ‘regular’ asthma that is in the lungs, causing mucous production, coughing and wheezing. Asthma is a serious illness causing NINE deaths per day in the USA. For some people, it’s very hard to get it managed properly. For others, a cocktail of inhalers, bronchodilators and nebulizers are needed.
Now, imagine if you had asthma in your gut!
“Asthma of the Gut” is the best description I’ve heard yet to explain Eosinophilic Esophagitis (EoE). Gastrointestinal doctors are now using this term regularly to explain this debilitating condition.
What is EoE? According to APFED (American Partnership for Eosinophilic Disorders) it is: “an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.” APFED has more detailed information about EoE which you can read here. There may be a genetic link in some families, and environmental allergies may also be a component.
According to AAAAI (American Academy of Allergy Asthma & Immunology) : “In EoE, large numbers of white blood cells called eosinophils are found in the tissue of the esophagus. Normally there are no eosinophils in the esophagus. EoE can occur at any age and most commonly occurs in Caucasian males. The symptoms of EoE vary with age. In infants and toddlers, you may notice that they refuse their food or are not growing properly. School-age children often have recurring abdominal pain, trouble swallowing or vomiting. Teenagers and adults most often have difficulty swallowing. The esophagus can narrow to the point that food gets stuck. This is called food impaction and is a medical emergency.”
Diagnosis of EoE
The diagnosis of EoE can be tricky since it can mimic other illnesses, such as gastroesophageal reflux disease (GERD), celiac disease, parasitic infection, Crohn’s or colitis. In general, if you have the symptoms discussed above, an endoscopy is going to be performed, where esophageal biopsies will be obtained. If you (or your child) have at least 15 eosinophils in at least 1 high-power microscopy field, then you are likely to receive the diagnosis of EoE.
Mast Cell Involvement/Treatments
I haven’t heard of specific research on this; however, I want to mention some anecdotal evidence that I have. Almost every parent of a food allergic child that tells me that their child is inhalant allergic to a food has later been found to have EoE. I’ve had two GI doctors tell me that if eosinophils are elevated in a person, then mast cells are also elevated. When mast cells are elevated, a person is much more sensitive to their environment, and more likely to react to even the smallest exposure of an allergen.
It takes a special lab staining technique to check for mast cells in the gut, and most GI doctors in the USA aren’t using this stain. Therefore, if the doctor checks for mast cell involvement, too many times they erroneously think there isn’t a mast cell increase. Yet, both my daughter and I have later had the Alcian Blue 3 staining completed on our biopsies and found that our mast cells were extremely high!
In adults, GI doctors are regularly prescribing mast cell stabilizers (such as Ketotifen or Gastrocrom) for their patients with eosinophilic disorders. Yet children with EoE are commonly not receiving these medications. According to AAAAI, “Glucocorticosteroids, which control inflammation, are the most helpful medications for treating EoE. Swallowing small doses of corticosteroids is the most common treatment. Different forms of swallowed corticosteroids are available. At first, higher doses may be needed to control the inflammation but they are linked with a greater risk of side effects.
Proton pump inhibitors, which control the amount of acid produced, have also been used to help diagnose and treat EoE. Some patients respond well to proton pump inhibitors and have a large decrease in the number of eosinophils and inflammation when a follow up endoscopy and biopsy is done. However, proton pump inhibitors can also improve EoE symptoms without making the inflammation any better.”
Elimination diets and/or elemental diets (amino acid formula) are other treatments for EoE. Yet even those don’t work well for some people.
You may have read about a family who chose a wildly different treatment for their son when none of the standard treatments worked. You can read what Gerson Therapy did for this little boy here.
Eosinophilic Gastrointestinal Diseases (EGID)
According to APFED, “Eosinophilic esophagitis (EoE) is far more common than the eosinophilic gastrointestinal disorders that affect the rest of the GI tract. ”
I am that rare bird! I have a diagnosis of eosinophilic involvement throughout my gut – stomach and intestines in addition to esophagus – my diagnosis is Eosinophilic Gastroenteritis, which my doctor said is equivalent to the evil twin: Mastocytic Enterocolitis.
All of these terms just sound so much easier as “Asthma of the Gut”.
In the case of the gut, where 75% of the immune system resides, there is certainly a need for some mast cells to fight off parasite or bacterial infections. However, eosinophilic disorders create a gut with an abnormally high amount of eosinophils (and mast cells) in the esophagus, stomach, duodenum, intestines and colon. Inflammation occurs, and the lining of the gut is damaged creating malabsorption. It is a dangerous cycle to get into.
What are the symptoms of EGIDs?
Because there is virtually no research on EGIDs – there are so few people to study – I’ve taken on my own recovery. I do eat a very limited, organic diet currently to help my gut heal. I take several medications to manage my mast cells and eosinophils (Budesonide, Zyrtec, Zantac, Ursodiol and Ketotifen). My gut is healing enough now to slowly decrease my Budesonide!
The biggest healing force I’ve found is meditation. If I envision my gut healing, on a daily basis, I’ve found that my intention is stronger than any illness!
I remember when I first ran into another Mom whose son had food allergies. My son, Morgan, was 18 months old happily playing at the park. I was chatting with another Mom watching her 10 year old son playing. In the course of the conversation, she mentioned that her son had peanut allergies. Since Morgan had just been diagnosed at that time, I was ready for all the scoop on managing the allergy appropriately. She told me to be prepared to be in the Emergency Room a couple of times a year, like they were. She recounted a story about her son eating a cookie, which turned out to have peanut butter in it, and ending up going to the ER. I was horrified!
At that time, I didn’t know much about managing food allergies, but I knew that a couple of trips to the ER every year wasn’t acceptable to us. This was the beginning of an education about food allergies for me and for our family. Mostly, we wanted our son to know that vigilance about his food allergies was going to be required.
So what makes a family too relaxed about food allergies? Through the years, I’ve found that families who haven’t received all the information about how serious food allergies can be tend to be too relaxed. Sadly, these same families are frequently the ones who don’t carry an EpiPen or Auvi-Q with them at all times, and some haven’t even been prescribed an autoinjector. When anaphylaxis occurs, they say that they never realized how serious a food allergy could be. It’s tragic.
This points to another issue – many families only see their primary care physician and not a Board Certified Allergist about food allergies. We were so lucky that our primary care doctor knew when he was out of his league with Morgan’s reactions. He referred us to an allergist for proper care. A Board Certified Allergist should be able to distinguish the false positive from the actual food allergy. An Allergist can determine whether the wheeze is from asthma or another source. It’s their specialty.
Then there’s the too relaxed family where the child hasn’t had any food allergy reactions in years. It’s easy to become complacent. Like a snake in the grass, that’s when the complacency will come back to bite you! Just because a child hasn’t had a reaction in years doesn’t mean they’ve outgrown the allergy. It’s important to have your child retested to determine the level of their allergy as they age. We have done this every 4-5 years. Morgan hasn’t had anaphylaxis since he was 10 years old (and that was to fish to which he had previously tested negative!). He still tests allergic to multiple foods. He hasn’t grown out of any of his ‘original’ food allergies. He’s just been cautious!
There’s also the child who uses food allergies and complacency to ‘get back’ at a hyper vigilant parent. Instead of being empowered to take on their own food allergies, they’ve resigned their condition to Mom or Dad to manage it. We ensured that our son knew he was responsible for his food allergy care and management. From the age of 4, he carried his EpiPens on his body when we left home. He began carrying his EpiPens at school once the law was passed in Colorado allowing him to do so, which was when he was 11 years old. This encouraged his awareness of taking care of himself. We involved Morgan in every decision about going to parties, family gatherings, and school activities. He needed to let us know what he felt comfortable with when food was involved. This encouraged him to be responsible for his food allergies.
I recently was at a parent event at the University of Denver speaking to a father about his son’s study abroad experience. I mentioned that Morgan was choosing among universities in English speaking countries because of his multiple food allergies. The father says to me, “My son has peanut allergies, and we never thought about mentioning that.” Thank goodness his son studied in Australia! For Morgan, he’s very aware that a language barrier could mean the difference of a wonderful study abroad experience and one where he ends up in an ER!
We aren’t relaxed about Morgan’s food allergies, and we aren’t so hyper-vigilant that he can’t live life. There’s a balance in between those two extremes. It takes practice and lots of communication with your child to find the middle ground.
Many of you have probably seen the results of the LEAP (Learning Early About Peanut Allergy) study, which basically found that early introduction of peanuts into a baby’s diet can promote tolerance. According to The New England Journal of Medicine this study was supported by grants from the National Institute of Allergy and Infectious Diseases; Food Allergy Research and Education; the Medical Research Council and Asthma UK; the United Kingdom Department of Health; the National Peanut Board (emphasis added); and the United Kingdom Food Standards Agency. It was a follow up to findings that Israeli children who consumed a peanut snack called Bamba as infants had far fewer peanut allergies than Jewish children in the UK who didn’t eat Bamba.
Since the findings of the LEAP study have been released, I’ve been inundated with people, with good intentions no doubt, asking me “Did you see the study that said you should have been feeding your son peanuts?” For those of us parents of children with food allergies, those statements can make us cringe! This study has no bearing on those children who ALREADY have peanut allergies. And, in my opinion, there are a lot of other factors that weren’t taken into account with this study, despite how excited the medical community and the media appear to be.
My son, Morgan, would have likely been a candidate for this research. He was covered in eczema at a few months old, and likely would have tested positive for egg allergies as a small infant (we didn’t find out about his egg allergy until he was 15 months old and reacted to his MMR shot). He also could have been one of the children who reacted too violently to the peanut skin prick test (over a 4mm wheal) which would have limited his inclusion in the study. (We didn’t have a skin prick test completed for peanuts until he was 18 months old in 1997, and the allergist didn’t provide us the information about the wheal size – just that his peanut allergy skin test yielded a 4+.)
Looking back, had he been chosen to be a part of this study to eat peanuts, I would have had serious reservations. Based upon what I know today, I would certainly decline to ever feed my child peanuts when he already has eczema and an egg allergy. What concerns me about this research is the same concerns I have about Oral Immunotherapy. You can read my blog post, Food Allergies, Mast Cells & Hitting Your Threshold that outline those concerns. Yes, the researchers followed the children until the age of 5, but that is far from a mature, adult gut and immune system. And while they tested the IgE of all participants, high IgE is not the only indicator of having detrimentally affected the body. Eosinophilic Esophagitis and mast cell issues can be involved without a high IgE. There are many more bodily systems affected, and from what I have read, no endoscopy was performed on the subjects, so the inner workings of the gut were not looked at. The sinuses and lungs were also not looked at. What impact did eating peanuts have on those areas of the body? Having research that only looks at whether a child can consume peanuts doesn’t look at the impact on the body as a whole. Nothing in the study reported on findings in the atopic march.
Next, my concern is what about the multiple food allergies that my son has? If I were to have fed him peanuts, what impact would that have had on his “other” life threatening food allergies – tree nuts, sesame, fish and shellfish? We didn’t know about all of these other food allergies until Morgan aged and ate or came in contact with these other foods. In other words, a skin prick test at less than a year old may not reveal everything that’s going on in an infant’s body when looking at food allergies.
Lastly, feeding peanuts to a child with eczema and egg allergies SHOULD NOT be done without the consultation of a pediatric allergist. Parents with a Google MD degree don’t have the necessary information to safely embark on this study at home. If your child already is exhibiting allergic issues, see a specialist. Even the pediatrician may not have enough information to safely care for your child effectively.
There is an abundance of research trying to find a cure for food allergies. Because of the stomach issues in our family, mast cell disorders and EoE, we have chosen to seek out different healing arenas than eating what we’re allergic to.
About a year ago I began seeing a chiropractor that practices Network Spinal Analysis (NSA). For those of you who have read my blog for a while, you know that our family is very open to new modalities of healing AND we still see medical doctors too!
We have spent a lot of money seeing NAET specialists (see my write up on that here toward the bottom of the page), acupuncturists, chiropractors, Sacral Occipital Therapists, massage therapists…the list goes on and on. Many of these practitioners have provided temporary relief, at best. And the abundance of them have served only to lighten our wallet! I know that my son needs to have medication to manage his ocular allergies, his asthma and his nasal allergies; however, I’m always on the lookout for something that can assist his body to truly heal from these maladies.
My daughter and I have a mast cell disorder, and I was having severe lower back pain that wasn’t being helped by traditional chiropractic care. I decided to try something new and be the guinea pig in the family. It turns out that the mast cell disorder and the back pain were related, according to my new NSA chiropractic doctor. The more allergic reactions I was having, the more mast cell proliferation occurred. And the more mast cells, the more my back hurt. It was as if my spine was shutting down my entire nervous system in an attempt to protect me from myself!
Network Spinal Analysis works to utilize the energy in the spine to realign itself without the standard “cracking” of a chiropractic adjustment. The practitioner helps to point out where the energy is blocked, and gets the central nervous system to pay attention in an entirely new way. New neural pathways are opened up, and more energy is brought in to the spine, so that healing can occur. Within a few months, my back pain ceased, and almost a year later, my mast cells are beginning to behave better too.
Last summer, my son, Morgan, began seeing this NSA chiropractic doctor and almost immediately was able to go off of his Pulmicort steroid. I wasn’t sure that was a good idea until we went in to see the allergist and all of his breathing tests were normal!! He has had to use a rescue inhaler only once since then for a few days during a respiratory infection. He’s had no chest tightness, and feels great.
I really believe there is something to raising the energy in the body to create healing. Let’s face it, all the antihistamines and steroids are doing is helping with the symptoms. I really want my body, and my son’s body, to begin healing. Since Morgan and I had such good results with this new modality, my husband and daughter have also begun receiving entrainments (what the doctor calls the session). They too have had remarkable results with less body aches, better digestion and overall energy becoming higher.
There’s another line of thinking about accessing a higher energy through meditation to create healing. Dr. Joe Dispenza has written a book, “You Are the Placebo” that asks, “Is it possible to heal by thought alone—without drugs or surgery? The truth is that it happens more often than you might expect.” His book details scientific research where people have healed themselves, and where others have made themselves sick, simply by their thoughts and beliefs. I know that my mind is certainly powerful enough to create anxiety symptoms in my body. It’s powerful enough to create a stomach ache out of fear or worry. It’s also powerful enough to boost up my energy and overall capabilities to handle a crisis of one of my children, regardless of how I’m feeling physically in the moment.
I have begun to sit in meditation daily for the last 4 weeks, based upon the guided meditation provided in the book. I’ve already seen and felt a difference. I’ve been able to decrease the amount of medication that I take for my mast cell disorder! It’s mind blowing stuff, when you really think about it. Are our minds really powerful enough to heal our bodies? I am becoming a believer!
Ever since my son, Morgan, was a baby I’ve been obsessed about his health. I have a daughter five years older than Morgan, whose health I’ve also been concerned about at times, but never to the level of obsession that I’ve felt with Morgan. What is it about his health that creates these obsessive thoughts and behavior patterns in me?
If I analyze it (which I’m prone to do to try to find some missing tidbit of information that could help him!), I think that when Morgan got Respiratory Synctial Virus at 3 weeks old, I saw how much his health relied upon me ensuring that he got round the clock treatments of Albuterol and that he always had the oxygen canulas in his nose, even while I was breastfeeding him. This went on for 3 weeks, and it started my obsessive fear that if I did something wrong, my son’s health was going to suffer.
Once he was diagnosed with a peanut allergy at 9 months old, the health ante was raised. Now I was responsible for ensuring that he didn’t have any life threatening reactions to peanuts. I got a long list of items from our allergist that I needed to do to ensure that a reaction never occurred – read every label of every food every time he ate it, cook only safe foods in the house, make sure he didn’t touch anything he was allergic to…You get the point! You’ve been there too! If I wasn’t already tending toward obsessive/compulsive behavior, I’d have been put on the path with the doctor’s directions! Adding asthma to the mix in his toddler years once again upped the ante, and then adding more foods to his long list of severe allergies – tree nuts, sesame, fish and shellfish – raised my obsessive behaviors to a fever pitch.
Through the years, I’ve met so many mothers whose own health has deteriorated as they attempt to take care of a child with severe health needs. We parents of children with food allergies seem to suffer the most of any parents I’ve met. I think it’s because so much is riding on our ability to create a safe environment for our children at home, at school, with family and friends, at playdates – the list is endless. And research has shown that my anxiety about any of these issues can play out in my child’s emotional balance. Which means I need to be concerned about all of these life issues, but not anxious, fearful or worried! And that is so difficult.
If you read my son’s most recent blog post about his first quarter of college, you know that even with his excellent grades and heavy workload, he came home after having been sick throughout the previous 10 weeks to be diagnosed with mononucleosis. He was thankfully able to rest during the school break, which was 6 weeks long for him, and begin to get well. When he left to go back to college, he was by no means 100%. He’s still in need of an abundance of sleep, and just not fully energetic. This sets off an obsession of worry for me that he will overdo it, stay up late, volunteer for too many activities, and have another college quarter full of sicknesses. Or maybe he won’t be healthy enough to go to school at all! I’ve practically made myself sick with all my thoughts and scenarios.
I’ve heard men say that it’s a “Mom thing” to worry about our children and their health and safety. But what are we doing to our own health and peace of mind? Is it necessary to worry? Or would concern suffice?
I have an immune disorder – a mast cell proliferation in my gut – that definitely requires that I focus on my health. The ultimate fear for me with Morgan’s food allergies has been that I’ll do something wrong – serve him a food that will cause a fatal severe reaction, or that someone else will – and that has motivated this obsession with perfection in the area of food allergies. After all, our allergist has told us what he needs to be safe! I have all the data to show that I need to be this worried. Yet, me worrying about his health has taken away from my ability to focus on my own.
How can we parents of children with food allergies find a balance of safety without obsessing over our children? If you have an illness that also needs to be managed, how is that possible? I have a few ideas from what has worked for me –
1) I find it helpful to remember that there is a God and it’s not me. I can teach my son to always carry his EpiPen, to train others, to eat safely, and to take care of his health – that’s my footwork as a good parent. Then I get to turn the rest over to God or to whatever benevolent spirit you might believe in.
2) God has no grandchildren. Very similar to #1 above, but this reminds me that I’m not the go-between for everything that goes on in my children’s lives. My children get to have their own lessons in life, many of which have nothing to do with me. It was vitally necessary to teach Morgan how to advocate for himself, because I wasn’t going to be with him always, but it’s up to him to utilize that training now that he’s almost 19 years old!
3) I am responsible for taking care of my own health. As you hear on every airplane flight, “Put your own oxygen mask on first, and then assist your child.” In the book by Dr. Joe Dispenza called “You Are the Placebo”, he states, “You must observe and pay attention to those emotions that you’ve memorized and that you live by on a daily basis, and decide if living by those emotions over and over again is loving to you.” What better way to demonstrate to my children, who both have health issues, how to take care of themselves than for them to watch me on a daily basis take my medicines, watch what I eat, get enough sleep, and turn over those things outside of my purview.
4) I’ve ceased to expect perfection – from my son or from myself. Let’s face it, accidents happen. I’ve purchased foods from the grocery store that had an allergen in them (the box had a ‘may contain’ statement). I certainly didn’t mean to do it, and thankfully only a small reaction occurred. Another time, my son caught the mistake before he ate the food. This was a great learning lesson for everyone.
5) Forgive myself and others. Tying onto #4 above, I’m not going to be perfect, and when I’m not, I can apologize and then work on forgiving myself. Sometimes with other people’s lack of understanding of food allergies, I’ve had to work harder at forgiving them.
6) Practice the Serenity Prayer which is “God, grant me the Serenity to accept the things I cannot change; Courage to change the things I can; and the Wisdom to know the difference.” There are a lot of things I can and should do for my son’s health. Worrying about him isn’t about acceptance and it isn’t about courage either. Worrying is wasted energy. I look for what I can do, and do that. Now that he’s in college, I have far fewer things to be courageous to do for Morgan. The most courageous thing is to hold my tongue, and allow him to learn what he needs to learn in life at as young of an age as possible.
7) Talk with someone else. I have friends and mentors who have helped me through the years by listening to me recount situations, obsessions and worries. They listen, and by listening the burden is shared. Suddenly it doesn’t seem as big of a deal as it did when it was rolling around in my head. And many times I find alternative ways to look at the health issue that seemed insurmountable.
8) Stay in the here and now. Many times my obsessions are spawned out of fear of the future. I want to control what’s going to happen, and I want to make sure that my son is always safe. We did everything right to manage food allergies in college, and didn’t know that mono would be the tripping point. This shows me that I just need to do what’s in front of me to do, and the future will unfold as God sees fit.
9) Try to find the humor. If I’m not laughing at myself, I’m sure someone else is! After all, flapping my mother-bird wings is a sight to behold!
So, here’s to good health for all of us parents! Here’s to proper concern, and less obsessive thinking. I, for one, need to remember that daily!
For those of us with children with food allergies, awakening in the middle of the night worrying about cupcakes isn’t that unusual! Of course, if you share that concern with your neighbors who don’t have to worry about unsafe food, they may not understand. Food allergy parents understand all too well!
My son started college in September, so I was surprised to find myself awake at 2 am one night recently worrying about our son, Morgan. We had worked really hard to create a safe eating experience for him in the dorm cafeteria, and it was working great. His roommate was more than understanding about not bringing in Morgan’s allergens into the dorm room. Everything was working well – why was I worrying?
Morgan was heading off on a weekend trip with his leadership class. Prior to him leaving for college, we had talked with the coordinator of the leadership class, and the fact that there would be an overnight trip to a cabin in the mountains. It was the night before this particular trip that I found myself awake concerned if he had contacted the chefs like the coordinator had said he could. I was more concerned that he was also bringing along his 2 extra EpiPens (he always carries 2 in his pocket, but I wanted to ensure he was going to be extra cautious)!
So I lay there wondering if Morgan would think I was crazy if I sent him a text at 2am asking him to please remember his 2 extra EpiPens. After 30 minutes, I no longer cared what he thought and went to find my phone to fire off a text to him. Funny thing – he wasn’t up in the middle of the night worried like I was!! In fact, he had already handled the conversation with the chefs and had packed the extra EpiPens – as per his text back to me at 7 am.
No matter what his age, and how many times he has taken care of himself – I’m still a Mom. After 18 years of monitoring his food, his environs and his safety, it’s very difficult to let go and allow Morgan to take the baton and manage his food allergies himself. He’s doing a great job!
Our son, Morgan, had a great first week of Orientation at the University of Denver (DU). Then, on the first day of classes, he began to get sick – really sick! He continued to have a fever and chills for two days. He knew to start up his Pulmicort inhaler immediately. We discussed the breathing difficulties the Enterovirus 68 creates for children and teens sending them to the ER and Intensive Care. Yet Morgan didn’t have any classic cold symptoms – no runny nose, no sneezing, and only a mild sore throat.
After two days of feeling awful, and missing a few classes in order to sleep, he called me, aka Mom. At that point, I suggested that he go to the Health Clinic on campus; however, it was almost 7 pm and the Clinic was closed. So, we talked and he decided to go to a local Urgent Care. He was feeling so poorly that he asked his roommate to drive him. The wait was over an hour, and the doctor didn’t know what he had. The strep test came back negative, and sadly even if Morgan has strep, the test always come back negative. The doctor prescribed a very strong antibiotic for him to take to kill off any bacteria in his system. He took the antibiotic, and then was up during the night vomiting it back up.
By the next morning, he was feeling so awful, that we talked about him coming home to see our family doctor that has known him his whole life. Once he got into this doctor’s office, his fever was almost 103. He had vomited during the drive home from college, and again in the doctor’s office after another strep test – which also turned out to be negative . Blood was taken to ensure he didn’t have mono, but it would likely come back negative because Morgan didn’t have symptoms long enough for the test to be accurate. The doctor gave him a antibiotic specific to kill off strep.
We also took Morgan to a chiropractor that our family has been seeing who utilizes Network Spinal Analysis (NSA) and Somato Respiratory Integration (SRI) in her practice. She is amazing when it comes to diagnosing the underlying issues that occur with our bodies – and not only the spine, but all illnesses. She determined that Morgan had a bacterial infection just by the way his liver was reacting. She gave him a treatment, plus had him soak his feet in a foot back with herbs. Between this treatment, and the antibiotic, Morgan was feeling much better the next day.
One day later, however, he broke out in a rash that covered his face, torso and chest. Morgan called back in to the family doctor, who thought it must be some type of virus, and the doctor suggested that he stop taking the antibiotic! In other words, he didn’t know what Morgan had either. Morgan has continued to get better, and has also continued to take the antibiotic.
I wanted to write a post about this because part of sending our children with food allergies off to college is the “hope” that they can take care of their own medical needs, or find a doctor that can assist. In addition to monitoring their food, training others on their EpiPen or Auvi-Q, and if they have asthma, being able to monitor that – they also need to know how to manage the current healthcare system! It’s a lot to take on at 18 years old. And it’s something to consider when sending your child with food allergies off to college where they go far away.
What would you do if your child got REALLY sick and they are 2000 miles away? We were really grateful that Morgan is only 60 miles away, and that we could pick him up and bring him home to see doctors who know him well. We also wanted to see him ourselves to determine just how sick he really was. He was home for 2 1/2 days, and slept most of the time. We took him back to school when he still had a rash, but was feeling much better.
What can you do to make sure that your child is ready to manage doctors in our healthcare system while away at college? Well, here’s what we did long before Morgan left for DU:
1) Have your child fill out all the doctor office’s paperwork each time you go in. We started this when Morgan was about 12 years old. Name, address, phone number is the basics!
2) Review with your child what medications they take, what time they take them and what strength. Every time Morgan visited the allergist, he had to write this down on the intake paperwork. It helped him to know exactly what meds he takes. He was very adept at this by high school age.
3) Have your child make an appointment with a doctor. This is especially important for them to practice when they aren’t feeling well. It’s really hard to deal with a doctor office phone tree when you’re healthy. When you’re sick and have to press a lot of numbers in order to make an appointment, it can be very frustrating. This is good to practice in high school.
4) Get a health insurance card for your child to keep in their wallet. When you go into a doctor’s office with your child, have them present the card. Your child needs to know if they will have to pay a copay or not. Who is responsible for the bill? Is it Mom or Dad that holds the insurance? All of these details are vital when they go off to college.
5) Decide who is going to ensure that medications that are taken get refills in a timely fashion (parents or student). Some insurance companies require that refills are obtained through mail order only. Which address do you want to use – home or college? Who is going to pay?
6) Decide if your child will give you access to their medical records once they turn 18. With the HIPAA (Health Insurance Portability and Accountability Act) laws, at the age of 18, your child has to either handle their medical situations themselves or to authorize you, as a parent, to have access to their medical records. Believe me, even trying to get a doctor to call your child back can be problematic if you aren’t signed on as an authorized party on the HIPAA paperwork!
Thankfully, Morgan knew what to do when he was sick, and he also knew when it was more than just a mild sickness and time to call home. We’re grateful that he learned what to do before he left home, and we’re especially grateful that he’s feeling almost back to normal now!
Our son, Morgan, started college at the University of Denver (DU) this week. What a step it is to let him go, to make his own decisions, to take care of himself in the dining room, and to teach whomever he wants to teach about administering his EpiPen! This is what we’ve worked toward since he was first diagnosed with food allergies. It’s likely that he will make decisions different than I would, or than his Dad would. That’s part of growing up and learning!
We had worked toward his first day of college with DU Administrators for a while. Morgan, my husband and I met with the Disability Services Office back in March when we toured the campus. We discussed what accommodations he would need – safe food, no allergens in his room (no peanuts, tree nuts, sesame, fish or shellfish), and an A/C unit in his dorm room to mitigate his asthma. They didn’t think any of these would be an issue, but required that we complete some paperwork to get the university to pay for his A/C unit. We were given contact names for the chefs at DU to personally speak with them, and it was up to Morgan to discuss his needs with his roommate. If there was an issue, he could then get ‘outside’ help.
We problem solved various scenarios with the Housing Office at DU what could work for Morgan to attend DU if he was unable to get dining services to provide safe meals, and/or unable to get the roommate situation worked out. One of the Housing Office’s student employees has food allergies, and she talked in detail with Morgan about how she was safely able to eat in the dorm, how she texted chefs about her meals, and never had any allergic reactions! That encouraged us, but we also wanted a back up plan. The Housing Office offered that he could live in a dorm that had a kitchen in between two rooms. He could then have an RA (Resident Advisor) living in the other room to lessen the need for education of his food allergies. (Normally 4 boys live in these rooms, 2 on each side). Morgan would then have to shop and cook for himself. His preference was to live in a ‘regular’ dorm room with the Pioneer Leadership Program (PLP) – a Living and Learning Community that he applied to participate with. His one roommate would be a boy within this program, and Morgan would therefore eat in a dining hall.
Morgan and I roll played a few scenarios: what would you do if a professor is eating one of your allergens? (His answer: probably nothing unless I had to shake a hand, and then I’d tell them.) Where is the nearest hospital? (He looked on a Google map to find one). What would you do if your roommate is eating one of your allergens? (His answer: Talk to him about it!) What would you do if you knowingly ate one of your allergens – accidentally – but didn’t have any symptoms? (His answer: give myself an EpiPen and then call 911).
Morgan had several conversations with the head chef at DU over the summer, and he felt confident that he could live in the PLP dorm and eat safely since the cafeteria already labeled all of the foods that they made, and all the chefs were trained on food allergy awareness. Morgan and I met with the chefs one week prior to the school year starting. I wrote about that in a blog post here.
Morgan received his roommate assignment in July and started Facebook conversations with the young man. They met for the first time a few weeks before school started in a coffee shop in our hometown when his roommate was visiting extended family. They talked for 3 1/2 hours, and Morgan came home and said he never mentioned food allergies! I almost wanted to step in and start a conversation about how important it is for his roommate to be aware of his food allergies! Instead, I decided that I needed to step back and let him manage it. Morgan did mention his food allergies in a text message (kids these days!!) a few days prior to showing up at DU. His roommates response was, “Darn, I was really planning on eating fish in the room!” Apparently, it was no big deal to him at all to keep Morgan’s allergens out of the room.
When we arrived at DU, carting wheelbarrows worth of clothes and accessories into Morgan’s dorm room, we found the newly purchased A/C unit in a box. After inspecting the unit, my husband determined that he hadn’t brought the proper tools to put it together. I called the Housing Office to ask if someone was able to put the unit together for us. Within 5 minutes, the director of Housing was in Morgan’s room introducing herself! She called maintenance who had the unit operating within the hour!! Amazingly quick work! Morgan has been sleeping in air conditioning ever since. His roommate’s mother was thrilled since hayfever was a common issue for her son. She was hoping his allergies get better too!
Morgan brought practice EpiPens with him to college, with plans to train his roommate and others in the PLP program. Several of the chefs we met are EpiPen trained. Morgan is also capable of administering the EpiPen to himself. This is something I have to let go of. Morgan has ALWAYS carried 2 EpiPens since he was in middle school. I trust him to properly care for himself by training others.
At lunch the first day, Morgan went and talked with his chef contact about what was safe to eat, and whether he needed anything specially made. My husband and I were at DU for three days of Parent Orientation, and also ate in the cafeteria with the students. I was thrilled that they had a microwave out in the dining area for me to heat up my special meals, and my husband was thrilled with the tasty food! Morgan has had no problems finding safe, healthy food at each meal. At the last lunch that we ate with Morgan before we departed, the chef came up to him and asked him, “Where were you at dinner last night?” Morgan told him that he ate at a different dorm cafeteria, to which the chef replied, “Here’s my cell number. Make sure to text me when you don’t eat here so that I know you’re okay!” How wonderful that was to hear!
This is just the start for us, but a very good start it was! It takes a good amount of planning to get your child with food allergies to college, but it can be done. It can be especially rewarding when the college is so well-informed and willing to provide excellent care!
We are down to counting the days until our son, Morgan, goes off to the University of Denver (DU) for college. Before he moves in, we wanted to meet with the chef at the dorm cafeteria to discuss food allergies and safely feeding Morgan. Morgan had spoken with the DU head chef when we visited DU back in March, before he had made a firm decision on where he was going to school. The chef had suggested contacting him via email a few weeks before the school year started to discuss menus. Morgan took the lead in this, and he arranged a meeting with the chef for today, before DU starts its Orientation Week over Labor Day weekend.
Instead of just meeting with the head chef, we also met with 4 other chefs responsible for the various dorm cafeterias across the campus! What a welcome sight that was to see so many individuals interested in food and in Morgan’s safety! DU uses Sodexho for their food service, but this is certainly a different type of Sodexho than I have run into in K-12 schools or camps.
At the chef meeting, we discussed what foods Morgan was allergic to – peanuts, tree nuts, sesame, fish and shellfish – and found out that one of the chefs has similar allergies. Wow! How comforting that is as a parent to know that a chef not only knows what cross contact is, but also knows all about an EpiPen, and reading labels. In fairness, all of the other chefs also knew about these items too, and were more than willing to provide specific brands of bread, which is one of the biggest issues we have in finding safe bread without cross contact of sesame and nuts. This means they will specially order, or go to the grocery store, to purchase two specific brands of bread that are sesame and nut-free (Pepperidge Farm Pumpernickel and Roman Meal) for Morgan.
All of the foods/dishes in the cafeteria are labelled. The chefs were more than willing to make a safe meal for Morgan should he feel that was more to his comfort level, especially when one of his allergens is on the menu. And he was asked to talk with them at the beginning of every meal to discuss options.
The chefs all have experience with multiple students with food allergies in the past, and are prepared for any type of food allergy. We discussed the onslaught of forthcoming students with food allergies, and their mantra over and over again was, “We just want to feed you what you want that’s safe.” How wonderful is that?!
Two of the cafeterias have similar layouts with a pizza bar, a salad bar, international dish, and grilled protein. One of the cafeterias is more of a Food Court style where students can take meals to go. Also, the library has a cafe with foods that students can purchase. On the DU campus, there is a Subway – which is safe for Morgan – and is covered under his meal plan. He has many options, and certainly shouldn’t go hungry!
We are thrilled that we feel great about sending Morgan off to college knowing that so many chefs are interested in his well-being. And Morgan is excited for this next opportunity!
Some of you may think that you live in the best school district for managing food allergies. Some of you may think you live in the worst! For us, we KNOW we live in the best district! Many of you have heard me speak about how wonderful our district has been about providing 504 Plans, guidelines, policy and most of all care for food allergy students.
Since Morgan recently graduated, we thought it was time to give Academy School District 20 a formal thank you tonight by attending the school board meeting.
Here’s a part of what I shared:
Our story for tonight begins in 1999, when we began looking for a preschool for Morgan. No private preschool in Colorado Springs would accept him as a student because of his life threatening food allergies. They didn’t want to take on the liability. I was heartbroken, and I didn’t know where to turn.
I approached the District 20 preschool and explained his severe food allergies to the teacher, Miss Linda. When I explained that she would need to keep his allergens out of the classroom and learn to administer an EpiPen, she stated “That’s It?” I can’t tell you the relief I felt. Morgan enjoyed two years of preschool there before attending Foothills Elementary school for kindergarten. That’s when the real challenge began.
There have been so many teachers, counselors, school nurses, custodians, bus drivers and staff members who have been willing to learn about food allergies, and to help Morgan stay safe at school. It would be impossible to thank all of them, but we are so appreciative for how wonderful the D20 teachers and staff have been to keep Morgan safe and included.
There is one Administrator at the district level that we have to thank. The Director of Legal Relations has been instrumental with the creation and ongoing efforts of the Food Allergy Task Force which began in 2007. This committee has spawned similar groups in school districts across Colorado. The creation of guidelines for severely allergic students in our district was used as a basis for policy at the state level in 2009 when legislation was introduced and passed. District 20 has always been on the forefront in education, and your support for guidelines and policy to keep children with food allergies safe continues that stance.
Morgan never had an allergic reaction at school, and that was due to the incredible teachers, staff and administrators in District 20.
Here’s part of what Morgan shared:
I’d like to directly thank two individuals who are also here this evening.First, my elementary school counselor. When I first entered elementary school, there weren’t any procedures or policies to deal with food allergies. She had the foresight to put me on a 504 plan that provided accommodations for me to safely attend school and be included – a plan I kept even through my Senior year of high school.
Second, I would like to also thank my Principal at Foothills Elementary, for being my champion. She took a hard line and kept a strong policy with parents who didn’t want to abide by classroom accommodations, like an allergen-free classroom. Some of these parents, as I’m told, were particularly vicious, but she kept her stance that school needs to be safe for all children to attend, and I would like to thank her for that.
But finally, I would like to thank you, all of you. You have created one of the kindest, most open and accommodating school districts in the nation. I cannot express my gratitude for your willingness to help me and other food allergic students in this district. Many other children are not as fortunate to have such welcoming attitudes; they face obstacles on a day-to-day basis, and their parents fight teachers, principals, school boards, and even superintendents to keep kids safe.
Thank you. Genuinely, thank you for 15 wonderful years. I would not be standing here, a successful graduate of Air Academy High School without you all, teachers and administrators alike. I’ll be proud to represent Academy School District 20 at the University of Denver as a Boettcher Scholar in the fall.
Morgan and I had the pleasure of posing for a picture with Academy School District 20 Superintendent Mark Hatchell at the Board meeting. His leadership keeps more than 600 students with life threatening food allergies safe and included in the school district.
I hope that your experience with your child’s school and school district is as positive as ours has been!
A friend of ours says that God answers prayers in one of four ways:
and Beyond Your Wildest Dreams!
When my son, Morgan, started kindergarten in the Fall of 2001, I prayed every day when I dropped him off at school, “God, please take care of my boy!” It was such a part of my routine, and it helped me to be able to walk back home knowing I’d done everything that I could do to keep him safe, including a little prayer humbly asking for help.
What I didn’t know then is the many positive things that Morgan – and our family – have received because of his food allergies. It’s so easy to focus on all the hardships and issues that food allergies create. I don’t need to list those here, because if you’re reading this you no doubt know what those are! Back then, I couldn’t imagine what the future would look like for Morgan blazing the trail in our school district.
He was the first student to have multiple life threatening food allergies. He was also the first student to have a 504 Plan for his food allergies. An entirely new culture was going to have to be created in the school, and there were a lot of parents not happy about that!
Now that Morgan has just graduated from high school, I have been reflecting on his entire school career. Some of the good things that Morgan has received from his food allergies are:
Compassion for other children who manage an illness
A desire to read (at a young age) to be able to read food labels
A healthy lunch for school each day made by his Dad in elementary and middle school – usually with a positive hand-written note included
Learning how to advocate for himself in various situations, not just when it involves food
Close friendships created with kids across the USA by attending food allergy conferences
An ability to tell who really is his friend, because real friends care about keeping him safe
Great food at overnight camps since Mom packed his safe food
A healthier diet than most of his peers!
The ability to mentor younger children with food allergies
Learning that he is a REALLY good public speaker
Creating his own website design company (since working a minimum wage job at a restaurant wasn’t going to be preferable for money-making)
Another reason to say NO! to drugs and alcohol
A distinguishing element when he applied for college scholarships
It’s been quite a learning experience for him and for me to get him safely through school and to keep him included in activities. He went from preschool through high school in Academy School District 20 – fifteen years in all – without an allergic reaction. We certainly didn’t know that was possible when he began school. That result is beyond our wildest dreams and certainly an answered prayer!
In the Fall, he is off to the University of Denver (DU), where I’m sure he will continue to blaze a trail with food allergy advocacy. And I’ll bet that when my husband and I drop him off at his dorm, I’ll be saying a little prayer, “God, please take care of my boy!”
I’ve been asked recently to provide a checklist for preparing for college when you’re managing food allergies. We’ve had a lot of experience over the last 5 years preparing and getting both of our children (with different food issues) into college.
Our daughter, Michaela, has celiac disease (diagnosed in high school) and a mast cell disorder, which wasn’t diagnosed until college. She has a very limited diet with many intolerances and a wheat allergy too! Our son, Morgan, has life threatening food allergies to peanuts, tree nuts, sesame, fish and shellfish along with eczema, environmental allergies (pets and pollen) and mild asthma.
We’ve visited almost every college in Colorado, and a few outside of Colorado too. With all that experience, here’s a college checklist to assist your child with food allergies get prepared for college:
Take an accurate self-survey to determine how responsible you are with your food allergies and/or asthma:
Be honest – do you ALWAYS remember to carry your EpiPen/Auvi-Q? Can you train someone on the administration of your epinephrine autoinjector?
Do you remember to take your other medications (antihistamine, inhaler, etc.) without your parent(s) reminding you?
Are you willing to talk with a cafeteria worker about the seriousness of your food allergies?
Do you feel comfortable talking with a dorm roommate about your need for a safe living space?
Can you cook for yourself and shop for groceries if you’re going to live in an apartment?
If you can answer in the affirmative, you’re probably responsible enough to go away to college and appropriately manage your food allergies. If there’s still a few questions you’re concerned about, I’d suggest working toward that level of responsibility to ensure that your freshman year in college isn’t fraught with a trip (or two or three) to the ER.
In addition to my own children, I’ve communicated with dozens of young adults who are in college managing food allergies. Each of them finds a way to manage their own unique living situation along with their food allergies, yet several of them have experienced anaphylaxis while away at college. Having an EpiPen or Auvi-Q within reach is vital. Accidents do happen, so be prepared!
Get an idea of what you want to pursue academically
Food allergies aren’t the only thing you’ll be managing in college! Having an idea of what you want to major in will narrow down some of your choices for schools. We’ve learned that it’s expensive to pay application fees to multiple colleges, so it’s best to delve into the college website to see what degrees they offer.
If you have no idea what you want to major in, check out a local community college. Our daughter, Michaela, went to Pikes Peak Community College for two years and loved it. It allowed her to decide what she wanted to major in, and then she transferred to a 4-year university after completing her Associates Degree.
Are you ready to leave the safety of home?
How do you feel about going FAR away from home? Will you need to get an allergist nearby to help manage your allergies and/or asthma? Or would you rather your college be closer to home yet enable you to live on campus? Or do you prefer to live at home?
There are a lot of kids without food allergies that don’t do well thousands of miles from home. Others seek that special Ivy League degree, and are more than ready to be a far distance from home. If you have asthma, you might need to live in a dorm with air conditioning, or filtered air. Not all college dorms have air conditioning; therefore this issue may require discussions with the Disability Services Office (DSO) of the college and a letter from your allergist to get what you need from the Housing Office.
The 504 Plan from K-12 schools doesn’t follow you to college. Every college we’ve visited has stated that accommodations are available in college, however there is a whole new set of paperwork to complete, and documentation of the medical condition will be necessary for the DSO to authorize the accommodation. Many DSO’s aren’t yet up to date with their paperwork for food allergy accommodations. They generally deal with learning accommodations, so some patience and education may be necessary on your part.
At the age of 18, students are considered legal adults. Therefore, Mom & Dad won’t be negotiating accommodations – you will be! Know what you need to stay safe and healthy.
Visit the colleges/universities that interest you academically
These visits are vital we’ve found. Schools can look great or horrible if you only look at their website. Visiting in person gives you a whole different feel for the school. A visit also allows you to check out the dorm rooms and the cafeteria meal plans, meet the students and the professors, take a tour of the campus, check out the emergency procedures and ask LOTS of questions!
What is your ideal living situation in college? What is your ideal college academically? Can these two scenarios be found in one college?
We’ve found that it never hurts to ask for exactly what is wanted. If you want a chef to specially prepare your meals, ask if that can be done. Do you want to live in an apartment? Ask for that. First, you need to know what you’re comfortable with:
When visiting a college, here’s what we look for in relation to food allergies/asthma:
Are ingredients listed on all foods in the cafeteria? Is there a chef on site to take special orders? How many of your allergens are regularly served? Can you speak with a Dining Manager about your needs during your visit? How old are the dorms? Has there been any water damage? Are the dorms Air Conditioned?
If not, what documentation will be necessary to submit for a medical necessity to live in Air Conditioning?
Can the Resident Advisor be trained on the administration of an EpiPen/Auvi-Q?
Can roommates be selected to ensure no food allergens are in the dorm room?
Where is the nearest Emergency Room?
How is 911 handled on campus?
Is food allowed in the classrooms?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office?
Can you obtain that package of paperwork?
There are probably a dozen more questions to ask, but you get the idea that we are VERY thorough. We’ve found that talking directly to the person in charge while visiting the campus is vital. Take the time to set up personal meetings with everyone when you visit and pick up business cards to be able to follow up later. We’ve found that coming to campus with a list of questions generated from Mom/Dad and from the potential student is helpful.
Make a decision!
The best thing to know is that just because you’ve made a decision to attend a specific school, this is rarely set in stone. If things don’t go as planned, you can chalk it up to a learning experience and move on from there.
Our daughter, Michaela, lived at home for the first year and a half while attending the local community college. She wasn’t ready to live in an apartment, shop and cook for herself while trying to adjust to college academics. After 18 months, she was ready to move in to a room in a house she shared with a housemate. She transferred to the local University of Colorado at Colorado Springs, and graduated from there in May 2013. She has her own cooking utensils, cutting board, silverware and dishes. It has worked fairly well, although she has had to do a large amount of education and then remind her housemate when things are accidentally shared.
Our son, Morgan, has decided to attend the University of Denver (DU), where he is hoping to be able to get approval for a room air conditioning unit in his dorm room. The Disability Services Office will be reviewing his paperwork soon. He will eat in the cafeteria where the head dining manager has extensive experience preparing safe meals for students with food allergies. The students get assigned to one chef whom they can text message prior to each meal. Their meal is then prepared separate from everyone else’s. It’s a wonderful system that has worked well for other students managing food allergies! Should the air conditioned room not come through, Morgan will live in a dorm with A/C that also comes with a kitchen, which will be a nice backup. We feel very blessed that DU became a possibility for Morgan when he received a Boettcher Scholarship. It is a dream come true!
We hope that your dreams come true with the college of your choice that can keep you safe and healthy while enjoying a full college experience!