All posts by Nicole Smith

Sweet Debbie – from Accountant to Allergy-Free Baker!

Debbie Adler

 

Thank you Debbie for being willing to be interviewed by AllergicChild!

My honor and pleasure!

Your son has multiple food allergies. What allergies are you managing?

My 5-year-old son has life-threatening, anaphylactic allergies to dairy, eggs, peanuts, tree nuts, flax seeds, sesame seeds and shellfish.

It’s a big leap to go from being an accountant to a baker. Tell us about that transition.

The transition from accountant to baker took an alphabet’s worth of career moves from accountant to b-movie actress to comedienne to director of development to editor of a teen magazine all the way through zen yoga instructor. I won’t bore you with each job I had in between.

Then I started at a again to become an allergy-free baker when my son was diagnosed with allergies to almost everything in the USDA food pyramid. When I got involved with the food-allergic community, I realized there were millions of children in the United States alone that had these severe food allergies. I wanted to bake for them as well since I had already figured it all out for my son.

I see that you use unusual ingredients like Acai Berries and Coconut Nectar. Have you found that kids with food allergies have any trouble with these ingredients?

There is a misconception out there that a coconut is a tree nut because it grows on a tree and ends in n-u-t. But in fact, coconut is a drupe, or a one-seeded fruit. Therefore, if you have a tree nut allergy you can still eat coconut and all its derivations, including coconut nectar. Now, if you have a coconut allergy, and I know some people do, that is a totally separate issue. Acai berries are just like blueberries, but they come from Brazil. So if you’re not allergic to berries you should have no problem with acai berries.

Tell us more about your book “Sweet Debbie’s Organic Treats: Allergy-Free and Vegan Recipes from the Famous Los Angeles Bakery “

Hi res Book Cover_Debbie Adler

My cookbook contains all the recipes that I developed for my bakery, that took me years to develop, including those for cupcakes, cookies, brownies, muffins, energy bars, donut holes and breads. All of these are not only allergy-free, but also gluten-free and sugar-free as well.  I developed them with the goal of making them highly nutritious as well. So there is a lot of information about the alimental values of all the ingredients and each recipe contains information about calories, carbs, sugars, etc. per serving. There’s a lot of humor in it as well. Remember, I was a comedienne when I was up to the c’s in my career choices.

You’ve been on tour recently. Do you attract more interest from the gluten-free, autism or food allergy community?

It seems there is usually a mix of people, most of whom have none of the above issues, believe it or not. They just want to learn how to bake healthfully. But, of course, there is an epidemic of people who need gluten-free items lately so I would say after the general population, gluten-free audiences are my biggest and then the food-allergic.

What are your hopes for your bakery?

I hope my bakery continues to thrive and make delectable and safe treats for everyone who wants a baked good, no matter what his or her allergy or intolerance.

Is there anything else you’d like to tell us?

My customers all know that they are not sacrificing taste or pleasure when eating Sweet Debbie’s treats, but sometimes I find there is a prejudice when people hear that everything is dairy-free, egg-free, nut-free, gluten-free, soy-free and sugar-free. They think it can’t possibly taste good. I’d like to dispel that myth because it is not only possible, it’s imperative, otherwise I wouldn’t be in business.

Kissing & Food Allergies

When our son, Morgan, was diagnosed with food allergies at 18 months old, I never thought that kissing my child could cause problems! Yet, if anyone has eaten their child’s food allergens and then given a cheek buss – well, you may be in for a big surprise! Even that minimal contact can cause an allergic reaction in a highly sensitive child. Passionate kissing can cause full blown anaphylaxis. So, it’s important to know the facts of what works with showing affection for your loved one after you’ve eaten their food allergen(s).

In 2006, Dr. Scott Sicherer of Mt. Sinai researched peanut allergen exposure through saliva.  The research looked at how long the peanut protein remained in saliva. The protein is amazingly persistent, even after teeth brushing or chewing gum. The research conclusion was as follows: “Patients with peanut allergy require counseling regarding risks of kissing or sharing utensils, even if partners have brushed teeth or chewed gum. Advice to reduce risks, though not as ideal as total avoidance, includes waiting a few hours plus eating a peanut-free meal.”

Dr. Sicherer’s research did not involve cheek kissing or a “Grandma buss”. However I have heard from parents that their child has experienced welts, hives and/or a rash after receiving such a kiss when Grandma has just eaten the child’s food allergens. It’s vital to be cautious and for all family members to understand that even this small act of love can prove dangerous for a child with food allergies.

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Once a child with food allergies becomes a teenager, that’s when the real fretting comes into play! I would encourage you and your teenager to speak with your allergist about this topic. This has also been a frequent topic at the Teen Summit. While it might be overwhelming for your teen to talk about kissing, keeping them safe supersedes potential embarrassment. When we spoke with Dr. Fleischer at National Jewish Health about kissing, he encouraged Morgan to have his date either not eat food that he’s allergic to or to eat another non-allergen meal and wait at least 2 hours after an allergy-laden meal. That could make for a very long date! Or, better yet, it makes for the necessity of having a conversation with his date prior to the day of the date.

Kids with Food Allergies has a great resource for Teens and Kissing here. The magazine, Allergic Living, has an article on the topic here.

I interviewed Sloane Miller, aka Allergic Girl, about her kissing experience that ended in anaphylaxis. Check out my interview here. Who would have thought that a beard would be the culprit!

Go out there and pucker up!

 

 

 

 

Why Your Child with Food Allergies Needs a 504 Plan at School

Through the years, I have received hundreds of emails and phone calls from parents asking if their child with food allergies needs a 504 Plan in school. From my experience, the answer is a resounding YES. Too many parents think that a 504 Plan is only written once things go sour with a school district. That is not correct! Or they think that their Health Care Plan is enough. That may be true, but the sad part is that you’ll only know if it’s untrue after a serious issue has occurred. Lastly, they think that since their school district has guidelines for food allergic children, their child’s teacher is already on board with food allergy accommodations. Sometimes that may be true, but when it’s not – it sure is nice to have a 504 Plan in place!

Your child needs a 504 Plan in place on the first day school starts. (By the way, your child needs a Health Care Plan too, and the staff needs to be trained how to administer your child’s epinephrine autoinjector. And all of this needs to be done prior to the start of the school year!)

What is a 504 Plan?

A 504 Plan is a written plan of accommodations for your child to safely attend school and to be included. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance. So, we’re talking about some food allergies being labeled a ‘disability’. 

A publicly funded school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function (such as breathing or eating in the case of severe food allergies). There is no cookie cutter approach. Two children both having food allergies and a 504 plan would not have the exact accommodations in a 504 Plan. And there are some children who, when evaluated, will be determined to not need a 504 Plan. For example, a child allergic to goats will likely not require accommodations to be in a school classroom safely, while a child severely allergic to dairy likely will. The 504 Plan is written in a group setting of your child’s teacher(s), the principal, the school counselor, school nurse, the parents and the child (age appropriate). There may be others in attendance depending upon your school district’s policies.

How does a 504 Plan differ from a Health Care Plan/Allergy Action Plan?

Some school districts will use this language interchangeably. We use the Health Care Plan for the emergency actions to take in case of an allergic reaction; and the 504 Plan lists all the accommodations necessary for our son to be safe and included.

A Health Care Plan that includes written accommodations generally does not include procedural safeguards for parents to have should the plan not be followed.  A 504 Plan does include these procedural safeguards, and you will sign an acknowledgement at the end of the 504 meeting stating that you have received these. Should your child’s plan not be followed, pull out these papers and follow the items exactly as written to rectify the situation.

Why does your child need a 504 Plan?

From our experience, it has kept our son, Morgan, who is now a senior in high school, safe and included in school. If your child has a 504 Plan, it will not be acceptable for a teacher to ask you to keep your child at home while the rest of the class does an ‘unsafe’ activity. Instead, the activity will need to be altered so that your child can be included. A peanut butter birdfeeder project becomes a Crisco Oil birdfeeder project – and every student can participate!

From our experience, a required yearly meeting keeps everyone aware. Health Care Plans are supposed to be looked at yearly, but that doesn’t occur in every school. A 504 Plan requires at least an annual review which means that all the appropriate staff members are brought back together to discuss the necessary accommodations. Morgan always attended the annual meeting which provided additional information to the staff for what was working and what needed to be amended.

From our experience, written accommodations ensure that all staff know what is expected. If the school agrees to have the playground monitor take your child’s EpiPen to the playground every day, yet nothing is in writing, how does that information get passed on to the appropriate staff? Having a 504 Plan with that stipulation in writing ensures that the right people receive the right information.

From our experience, if/when the 504 plan isn’t followed there are procedural safeguards. When we have had issues with a teacher not following our son’s Plan, we have had a discussion with her. Then if the plan still isn’t followed, we’ve contacted her supervisor. This has only occurred once in 13 years of having a 504 Plan. But all it took was the statement – “this is stated in Morgan’s 504 Plan” to have the issue fixed instantly. No school wants to be reported to the Office of Civil Rights. Ultimately, if a 504 Plan isn’t followed, and the school/school district doesn’t provide a solution, that’s where the issue can go to be resolved.

If there are any accommodations necessary for your child to attend school, ask your school district to evaluate him/her for a 504 Plan. You’ll be glad you did!

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More Resources about 504 Plans:

http://www.wrightslaw.com/info/sec504.index.htm

http://www2.ed.gov/about/offices/list/ocr/504faq.html

http://blog.foodallergy.org/2013/08/19/what-every-parent-needs-to-know-about-section-504-plans/

https://home.allergicchild.com/food-allergy-504-plans-title-ii-and-k-12-schools/

 

 

What works to keep food allergic children safe in elementary school?

Since my son, Morgan, is now starting his senior year in high school, we’ve had a lot of experience with the anxiety of the start of the school year. It’s much better now, but I so remember the fear that I might miss something that would be the key ingredient in keeping him safe at school!

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Hopefully, you have already visited your child’s elementary school and let them know (preferably last spring) that your child has food allergies and will be entering kindergarten – if that’s the case for you – or will be back for this school year with food allergies that need to be managed.

If your child has been homeschooled until elementary school, there will be an adjustment period for both you and your child. With our son’s experience in preschool being so positive, we wanted to continue that trend in elementary school.

There are generally a lot more children in an elementary school, multiple classrooms where your child will be, and likely a playground that is much further away from the office (where medications may be kept) and less monitoring on the playground than what occurred in preschool.

Here are some suggestions that we’ve found vital to keeping your child safe in grade school:

Set up a meeting with the principal to discuss your child’s needs and allergies.

Again, hopefully you’ve already done this last Spring. If not, make an appointment today! You don’t want to show up on the first day of school with an EpiPen and trying to tell the teacher how to care for your child while he/she is learning the names of 25 students. That isn’t fair to the teacher nor to your child.

Most public and private elementary schools today have dealt with a child with severe, life threatening food allergies. Other food allergic parents may take a more laid back approach which can cause confusion for a school administrator when you request more vigilant food allergy awareness and procedures. Do what’s right for your child based upon the advice of your doctor!

Have a letter from your allergist/physician stating the accommodations needed 

Your child may need an allergen-free classroom because of contact reactions to peanuts, for example. Your child might need a milk-free zone in the cafeteria for lunch. Your doctor has the best knowledge about your child, and should therefore put in writing what will be necessary for your child to safely attend school and to be included in all the academics.

Become knowledgeable about the laws available to manage food allergies

Public schools (those who receiving funding from the US Government) must provide FAPE – Free Appropriate Public Education. The term ‘reasonable accommodations’ was believed to be the standard in years past, but this standard is for colleges and employment. FAPE applies to children with food allergies.

Private schools likely do not receive funds from the US government, and therefore are subject to a different standard than are public schools. There are private schools that are willing to accommodate children with food allergies; however public schools are required to do so. Schools receiving government funds must comply with the Individuals with Disabilities Act (IDEA), Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA). The ADA Amendments of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities.

Have a Health Care Plan/Food Allergy Action Plan 

The Health Care Plan, also called a Food Allergy Action Plan, specifies the steps to be taken in the case of an allergic reaction. Distinguishing between the severe allergic reaction and the mild allergic reaction is very important. The school nurse may not be present at your child’s school every day. Therefore, someone not in the medical field would be responsible for noting the reaction and determining the correct course of action. The school nurse would be responsible for developing the Health Care Plan, and for training specific personnel.

You will want to have this plan in place BEFORE the school year starts. Also, EpiPen® training MUST occur before the first day of school. Children can have reactions at any time. Waiting until the second week of school, when things calm down for teachers, may be too late for your child in an emergency. Make sure to include a photo of your child so that all staff will know not only your child’s name, but what your child looks like!

Ask that your child with food allergies be evaluated for a 504 Plan

A 504 Plan isn’t just for those students who can’t get what they need to be safe at school. In other words, it doesn’t have to be a contentious relationship for your child to need a 504 Plan. A 504 Plan is provided so that your child can enjoy inclusion in all activities, and have the accommodations in writing. It’s a way for all the parties involved to have agreement.

Volunteer at your child’s school

Seeing what goes on in the classroom is vital to knowing how many times food is a part of the lesson. You can help provide examples of alternatives for peanut butter birdfeeders or sesame seed art projects.  Also, the staff gets to know you – and how nice you really are!

What makes an outstanding Food Allergy Aware School?

A school with outstanding food allergy awareness is willing to 1) provide accommodations in writing for your child for their specific allergies, 2) admit what they don’t know and learn, 3) follow a written health care plan (provided by your doctor) that outlines the steps to take if anaphylaxis were to occur, 4) train all necessary staff on the use of epinephrine, 5) have a school nurse in the building at all times, 6) include your child in every activity possible including field trips, 7) educate the community about food allergies, 8) refuse to allow any bullying behavior regarding food allergies, 9) find ways to celebrate without food and 10) stand up to parents (and educate them) who say that food allergies are ‘hogwash’!

Our school district has done all of the following except for having a school nurse in the building at all times. The middle school my son attended did have an almost-full-time health aide, but the elementary school did not. It still worked with the front office staff becoming thoroughly versed on allergic reactions and how to administer an EpiPen. Good luck to the start of your child’s school year!

The History of “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies”

 

Back in 1999, when my son, Morgan, was preparing to attend preschool, I began the search for an age-appropriate book for him to share with his classmates about his peanut allergies. He also had several other food allergies, at that time, but his contact reactions to peanuts made it the most worrisome. Sadly, there were no children’s books about food allergies anywhere. I came up with a wild idea that I would write a little book about peanut allergies that would teach the other preschool children why Morgan wouldn’t be sharing their snacks and that would also explain to them what an allergic reaction looked like.

I thought about what animal was always known to eat peanuts – an elephant of course! I sat down one afternoon and created the text to the entire book based upon the multiple times that I had explained to babysitters what an allergic reaction might look like.

Since I’m no artist, I asked a then-middle school neighbor, Maggie Nichols, if she could draw some pictures to go with each of the pages in the book. We put all this together in a spiral bound book to send with Morgan to school. The kids loved the book, as did the teacher. In fact, the preschool assistant told me that she learned a lot about peanut allergies from reading the book to the children!

My daughter is 5 years older than Morgan, and was in 3rd grade when Morgan started preschool. Her grade school was having an art fair, and the librarian asked me if I’d be willing to do a book signing for the event. I jumped at the chance to showcase “Allie.” To my surprise, our local newspaper wrote an article about my book signing, complete with a picture of the book cover. It looks a little different than now!

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That newspaper article ended up being picked up by two dozen newspapers across the USA and Canada. I began getting calls from people wanting to purchase the book. They also wanted to talk about peanut allergies and how was I managing day to day? It opened up our world to help others. In 1999, the Internet wasn’t the knowledge base that it is today. We had felt very isolated trying the manage food allergies. No one in our community knew what we were talking about when we shared that our son had life threatening food allergies!

Our initial printing of 300 spiral bound “Allie” books sold out! We tried to get a publisher to print the next printing to no avail. No one was interested in a first time author. Nor were they interested in backing such a niche market. So, my husband and I funded the publishing and printing of the book.

We decided to start AllergicChild.com as a vehicle to sell the book, and to share our experience of living with food allergies. AllergicChild.com came into existence in January of 2000. As they say, “What a long, strange trip it’s been”!!

Since then, we’ve updated the pictures of the book with the same illustrator, Maggie Nichols, who grew up and grew into quite an artist! We’ve sold thousands of books through three editions to date.

“Allie” is now available in Kindle format too – just to keep up with the times. As for me, I still prefer “Allie” in its book form. There’s something special about reading a book to a child sitting in your lap. And reading a book about managing peanut allergies is even better!

Summer Camp & Food Allergies

When our now 17 year old son, Morgan, was very young, I never signed him up for day camps, and I never allowed him to sleep overnight at a camp for fear of the food involved. As he aged, he began to want to participate in these activities. He also had more of an ability to monitor the food and to determine if an activity was safe for him as he got older.

Day camps frequently are run by volunteers and/or high school age kids in our area. These types of camps include art lessons, church camps, Cub Scout day camp and music camps. We have found this to be a hazardous situation in most cases unless my husband or I participate. There are many wonderful activities in which to participate during a 4-hour or 8-hour day camp, however most volunteers are unaware of how to manage children with severe food allergies and possible allergic reactions. And during that time period, lunch or snacks will inevitably be served.

Having the ability to explain food allergies the day one arrives at a camp and teach every adult how to administer an EpiPen® isn’t likely to occur. We’ve found it virtually impossible to prepare in advance for these day camps, since the volunteers show up only on the very day of the event. We therefore participated as Den Leaders for Cub Scouts, or as an adult volunteer with any of these activities. That afforded us the opportunity to monitor the food, which allowed our son to be a participant.

Day camps hosted by a local school district or college have been very positive for us. I have completed the necessary paperwork to sign Morgan up for camp adding a copy of his Health Care Plan and 504 Plan and asking that the person in charge contact me. Then, I have gone to the location to train one or numerous individuals how to operate his EpiPen® prior to the first day of class. We’ve then had the opportunity to discuss necessary accommodations, and what to do in case of emergency. Morgan has participated in numerous of these types of camps, and has never had an allergic reaction. I think the difference between these day camps and the previously mentioned ones is that there is a qualified teacher in charge!

As Morgan aged, day camps geared toward a sport such as golf have proven to work well. One of the reasons this did work so well is that the golf pro and assistants never changed. We could train all of them how to use the EpiPen® on the first day of camp, and feel comfortable that no new faces would be teaching golf by the end of the week.

One summer, Morgan volunteered as a swim instructor at a local pool. He was in the water for 1 ½ hours per day with the 3-6 year old kids helping them learn to swim. There wasn’t any issue with food at all, since there’s no food in the water! We do choose his activities carefully, yet as a teenager he’s so much more able to monitor the food that does appear.

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In regard to overnight camps, we’ve had very good luck. My son has gone for a week to the local YMCA camp and for a week to a Boy Scout Camp with much preparation beforehand. He even attended the Boy Scout National Jamboree in the summer of 2010 for a total of 17 days! These camps are more likely to have medical personnel on staff, and are manned by paid employees. There are medical forms to be completed prior to camp. We can list all his food allergies and the daily medications required to keep him properly medicated.

We specifically include EVERY medication that he might need or will need during camp, and we send all of those with him with a written explanation of doses and possible reactions. Our son has to remember to go to the nurse’s station to receive the medication, and he is old enough and responsible enough to do such. If your child is likely to forget their medication, some camps are better than others in reminding campers to take their meds. A really good camp will have a system for kids to be reminded without unnecessarily drawing attention to them.

The YMCA camp called it the “Secret Service” which was the cue for all kids who needed to take meds to head to the nurse’s office. This was a very nice way to keep medications discreet and keep campers properly medicated.

To prepare for overnight camp, I spoke with the EMT in charge of the YMCA camp a month prior to my son’s arrival. I described the medicines he would be bringing, and that he would also bring his own food. The EMT assured me that every camp counselor would know of my son’s allergies and also that they were all taught how to administer an EpiPen® should the need arise.

They served peanut butter only to those children who wouldn’t eat anything else, and it was carefully monitored at a separate table. My son had friends from school joining him for the week at camp who all understood his food allergies and all knew that no peanut butter could be eaten near him. They were a wonderful support, and exclaimed that the food brought from home looked better than the camp food!

Before choosing an overnight camp for your child, make sure that you and he/she are ready to take on this big step! Food allergies add that extra amount of precaution and potential worry that other first time campers don’t have to experience. It’s hard enough to sleep away from home for the first time, so worrying about food allergic reactions shouldn’t be part of any potential upset. Morgan was ready to handle any situation that arose, and knew the safe adults he could speak with should a reaction occur.

Earlier this summer, Morgan stayed at Colorado State University in Pueblo for Boys State, a week long summer camp about government. He initiated the calls to the Camp Director and spoke with the Nurse on staff prior to going to camp about his medications and their awareness of anaphylaxis. He also called the Chef on duty to speak with her about the possibility of safe food. I listened in on that phone call just to ensure that everything from cross contamination to ingredient listings was covered. For the first time ever, he was able to eat the camp food! The President of the University has Celiac Disease and the awareness of the kitchen staff was amazing about food allergies. Morgan learned the right questions to ask, and how to prepare for camp – a skill he will need for the future!

Experiencing Anaphylaxis

When our son, Morgan, was diagnosed with life threatening food allergies, we were lucky that he had ‘only’ previously experienced a mild reaction to touching peanut butter and had experienced a moderate reaction to his MMR vaccine. The combination of these two events caused our family care physician to realize that Morgan’s allergic reactions were beyond his medical training. He sent us to an allergist who diagnosed Morgan with several life threatening food allergies.

By following up unidentified sources of mild to moderate reactions with blood and skin prick tests, we discovered Morgan had more and more food allergies – all likely to cause anaphylaxis. At 10 years old, he had a diagnosis of peanut, tree nut, sesame and shellfish allergies. Some of these he hadn’t even eaten – he had only touched them!

At 3 years old, he had tested negative to fish, which allowed us to falsely assume he could eat trout on a camping trip the summer before his 5th grade year in school. This ended with the life altering experience of anaphylaxis. You can read about Morgan’s story here and about my husband’s story of the camping trip here (go about half way down the page).

For anyone with diagnosed food allergies, there is a possibility of anaphylaxis. Those at the highest risk for life-threatening food-induced anaphylaxis and resulting fatality are adolescents and young adults; people with known food allergy and a previous history of anaphylaxis; and people with asthma, especially with poorly controlled symptoms. Peanuts and tree nuts cause the majority of fatalities from food-induced anaphylaxis. Fatalities are also associated with delayed use or improper dosing of epinephrine.

Our son is now 17 years old, with a previous experience of anaphylaxis, has asthma (controlled at the moment), and has peanut and tree nut allergy. He has several strikes against him, so he ALWAYS carries his two EpiPens! He was old enough when he experienced anaphylaxis that he well remembers the symptoms. Some children who experienced anaphylaxis as a baby may not remember the experience. By the time they get older, they forget why their food allergies are a big deal. If your child is in this category, help them to remember by discussing with your child and your allergist why food allergies need to be taken seriously. We’ve found that doctors can get points across that we parents never can.

Your child may not yet have experienced anaphylaxis, in fact only 38.7% of children with self-reported food allergy have. This is another sub-set of food allergy patients. Sadly, they are frequently the families we read about who neglected to carry an EpiPen with them any more. Or they didn’t read a food label and just figured a product was safe. Or they never realized how serious food allergies are. Then, the child experiences anaphylaxis for the first time and is not prepared with medication to counteract the effect of the allergen.

For those of you who have experienced anaphylaxis with your child – and believe me it feels that way! – I don’t have to explain the terror of the event. I felt as if our world had tipped over. I just read the Summer 2013 edition of Allergic Living in which Gina Clowes, Parenting Coach, wrote about how to help your child after an anaphylactic reaction. It’s a great read and I’d highly suggest it.

While it’s difficult to move on after experiencing anaphylaxis, we felt it was important to allow our son to continue to live his life – go to school, participate in Boy Scouts and go on camping trips again. We also are keenly aware of what can happen with just ONE BITE of an allergen! We live and learn. And Morgan ALWAYS carries his 2 EpiPens just in case!

Food Allergy Bullying – What’s the Solution?

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There has been an abundance of publicity surrounding Food Allergy Bullying recently. My now 17 year old son, Morgan, experienced bullying around his food allergy in first grade, so I certainly empathize with this problem. What concerns me, however, is that it appears that news organizations, research and a public service announcement continue to focus on the problem and not on a solution. With many more years of parenting under my belt, experience of what does work and a long term view of bullying, I want to share some solutions to Food Allergy Bullying.

First, let’s look at some of the history.

In October 2010, a research study by Dr. Scott Sicherer and Anne Munoz-Furlong (then CEO of FAAN, the Food Allergy & Anaphylaxis Network) and others, published a study of bullying among pediatric patients with food allergy. Their calculation of the percentage affected: “Including all age groups, 24% of respondents reported that the food-allergic individual had been bullied, teased, or harassed because of food allergy.”

The Food Allergy Bullying publicity was refueled with a research study reported in the January 2013 Pediatrics Journal of the American Academy of Pediatrics that cited “31.5% of the children and 24.7% of the parents surveyed reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates.”

FARE (Food Allergy Research & Education) created a Public Service Announcement about Food Allergy Bullying: It’s Not a Joke, and a recent New York Times blog post by Catherine Saint Louis called “In Bullies Hands, Nuts or Milk May Be a Weapon” furthered the discussion of this issue.

All of these sources talk about the problem of food allergy bullying, which does raise awareness about food allergies in general. The raising of awareness is a good thing, and I will certainly agree that Food Allergy Bullying is a problem. However, none of these sources are providing a solution to it. Emotional stories about children being bullied pull at our heart strings. They cause fear for parents of children with food allergies, especially if those children are young and not yet in school. Parents of young children who hear only that the school cafeteria is a scary place have expressed to me “that’s why I’m going to homeschool my child.” Rather than scaring parents (and children for that matter!), or allowing parents to think that the only solution to Food Allergy Bullying is to homeschool – let’s start talking about what parents and children with food allergies can do. And what schools and school employees can do. Let’s stop talking about fear and start talking about the existing laws, accurate statistics and empowering our children. Fear and frothy emotional appeals gain headlines, but they don’t help our children to live in a world that doesn’t yet understand the seriousness of food allergies. Let’s be educators ourselves, and talk solutions.

What are the solutions to food allergy bullying that we need to be talking about?

We need to be talking about the laws that are available for children with food allergies in schools. 

  1. A child with a food allergy has the right to an evaluation for a Section 504 Plan by the public school district where the child will attend school.  This Plan will list the accommodations necessary for that child to receive FAPE – a Free Appropriate Public Education. The ADA Amendments Act of 2008 have made big changes to what is considered a disability in school. The ADA no longer focuses on the disability but on what services a child needs. The 2008 amendments expanded the list of major life activities to include eating. While many parents take exception to the label ‘disability’, we’ve found that the benefits of having a 504 Plan in school include inclusion and safety. The old idea of having Mom ask the teacher nicely to not have allergens in the classroom is passe. If your child needs accommodations such as a peanut-free classroom, get it in writing in a 504 Plan. If another parent or child takes exception to the peanut-free classroom, they can deal with the principal of the school. As a food allergy parent, you shouldn’t have to deal with an upset parent who can’t send in Snickers bars for a classroom treat. That’s the job of the school principal. This keeps you and your child anonymous, and therefore much less likely to be bullied.
  2. The Family Educational Rights and Privacy Act (FERPA) is a Federal law that protects the privacy of student educational records. A school employee cannot tell ‘everyone’ about your child’s food allergy. In fact, the school employee will only tell those who need to know – for example, the school nurse, principal, teacher(s). Additionally, it has been our experience that not every parent and child in your school needs to know that your child has a food allergy. Telling close friends is important. The old idea of having Mom stand up in front of the entire school to tell everyone that your child has a food allergy is not only not helpful, but can be harmful for your child if it puts a target on him or her. Again, keeping your child’s food allergy on a ‘need to know basis’ keeps your child anonymous and much less likely to be bullied.
  3. Educate yourself about your state’s anti-bullying law and your school district’s anti-bullying policy. Every state, except for Montana, has some type of school anti-bullying law. These laws could certainly be widened to cover food allergy bullying specifically. When Morgan was bullied in first grade by another first grade boy waving a cracker saying “I’m going to kill you with this peanut butter cracker” the incident was taken seriously as a bullying incident. Within one hour, the ‘bully’ was suspended from school by the principal. His parents were brought into school and educated about food allergies. This was in 2002, long before there was food allergy awareness. Our school district has an anti-bullying policy, and our principal followed that policy. It made no difference that the offending item was food – the behavior was bullying.

We need to have accurate statistics – not just self-reporting.

Colorado captures bullying statistics based upon any child that is in  a ‘protected class’  (race, color, religion, disability, sexual preference, etc.) I’ve spoken with the Director of Legal Relations for our school district who stated that with disability as a protected class in Colorado, a child with food allergy who is bullied in school, should have a report sent to the state detailing the bullying incident. There is more work to be done to educate the educators about food allergy as a disability, and therefore as a protected class. The research cited above about the statistics of Food Allergy Bullying are all based upon self-reporting or parent-reporting. I’d much prefer to have exact statistics rather than self-reporting which tend to overstate what is occurring. Again, this creates fear for parents of children with food allergy, who end up believing that their child has a much higher chance to be bullied than what may be true.

We need to empower our children and quit the fear mongering.

My friend, Dana Gordin, wrote an article for Today Moms entitled “A Family’s Battle Against Food Allergy Bullying” where she discussed their family’s experience of empowerment. My son, Morgan, and I were interviewed for Health Day last year about the topic also. A quote from this article is a key part of the empowering solution: “The incident involving Morgan Smith, who is also allergic to tree nuts, sesame, fish and shellfish, was taken seriously at his school. The boy who chased Morgan was suspended for the day. He never bullied Morgan again, and the two even later became friends.”

My son never viewed the school cafeteria as a scary place. He wasn’t afraid of his classmates, nor was he afraid of his food allergies – even after he experienced anaphylaxis at age 10 to fish on a camping trip. We helped Morgan to make choices – safe choices – for his life. He viewed the bullying incident as a minor part of his childhood. After the bullying incident, we didn’t move to a new house, or pull Morgan out of school. In fact, he and ‘the bully’ became friends, and the boy became one of Morgan’s biggest advocates. This boy’s house was the only place Morgan could go for a sleepover, because the family understood food allergies so well. They are friends still today.

Morgan had other instances of children in grade school harassing him because of his food allergies. The school principal took those incidents seriously by calling in the parents and educating them, and by suspending a boy in 4th grade who wouldn’t move out of the peanut-free zone in the cafeteria with his Butterfinger bar. Our family continued to work with the school and school district to raise food allergy awareness. I sat on numerous committees within the school and PTO, and in the school district on the District Accountability Committee. This allowed other parents and district employees to get to know me. I became known as “The Food Allergy Lady.” I’ve certainly been called worse! When I suggested that a Food Allergy Task Force be created in our district to help increase food allergy awareness, the superintendent agreed. The Task Force continues to this day helping to ensure that the district guidelines for keeping food allergic children safe at school are followed, and that we continue to raise awareness about food allergies.

Morgan continued to self-advocate throughout elementary and middle school. Now in high school, he teaches his friends how to operate an EpiPen, how to help keep him safe during lunch and on overnight trips with his high school Speech/Debate team. Morgan isn’t afraid of living. He has food allergies, but his food allergies don’t have him.

Empower your children. Utilize the laws available for your child with food allergies. Don’t buy into the fear. Believe in the power of forgiveness. A bully might become your child’s friend and a food allergy advocate!

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Emergency Planning for Food Allergies & Asthma

There have been several events across the USA this Spring – the Shelter in Place in Boston, the tornadoes in Oklahoma City and the fires here in Colorado – that bring to mind the need for each food allergy family to have an Emergency Plan.

Your child no doubt has an Allergy Care Plan (or some similar name) for school. Does your family have an Emergency Plan for any of the possible emergencies that your community could face? You may be required to remain in your home, as those residents in Boston, MA had to do after the bombings. Or you could face the destruction of tornadoes or fires where you will have to evacuate your home – either temporarily or permanently.

Until last year in Colorado Springs, we never thought we would have to evacuate our home for any reason. We have had to prepare for blizzards, where we ensure that we always have enough safe food for at least 3 days to last out the storm. However, we don’t have earthquakes, hurricanes, or tornadoes. And until last year, we never had a major fire in our area. Now, two years in a row, we’ve had life altering fires where hundreds of people have lost their home and thousands have been evacuated. At least three families who lost their home in the Waldo Canyon Fire in 2012, moved to Black Forest, and lost their home again in that fire this past week!

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 The Black Forest Fire within 3 hours of starting to burn

We have come to realize the importance of having an emergency plan for our family. In the case of the recent Black Forest fire, all roads in the area were closed within 2 hours of the fire beginning. Once evacuation orders were put in place, the fire was bearing down on people so quickly that they only had 10 minutes or less to grab their essential items.

Would you know what to grab in that amount of time? Do you have a safe place to be able to take your family? When you vacation, do you know the possible threats facing the area where you are staying? These questions and more need to be part of your plan.

We have a ‘grab and go’ large folder for our “10 minutes and out the door plan”. This folder contains: our wills, recent tax returns, account numbers listing, passports, safe deposit box key, cash and other important paperwork.

If we have more time, we’ve learned to bring and do the following:

Understand Evacuation Terminology.  These definitions have been used throughout the fire evacuations in Colorado. We’ve learned to tune in to the radio and local news reports, Facebook and/or Twitter to keep up with the advancing evacuation notices AND to remain at home if we are placed on pre-evacuation with all items packed and ready to go.

  • Pre-Evacuation – No immediate threat, but the danger may be moving closer; Prepare for possible evacuation.  Pre-evacuation means there is no immediate danger to your home, family, or business, but the threat may be moving toward you.
  • Voluntary Evacuation – The danger is moving closer and a mandatory order may be issued at any time. Officials say you do not need to wait for a mandatory order before leaving.
  • Mandatory Evacuation – Leave now. You will not be allowed to return until after the threat has passed.

The 5 P’s: People, Pets, Photos, Prescriptions and Papers.  We don’t have pets, but if you do many evacuation centers won’t allow your pets to stay if you aren’t there with them. Hotels may not allow pets. For us, prescriptions were our big deal. Some prescriptions are very expensive, and we didn’t want to lose this investment when we evacuated last year. We also grabbed Morgan’s 504 Plan paperwork file and his Allergy Testing history file.  Sure these could be recreated, but what a lot of work that would have been! If your child’s asthma care plan isn’t committed to memory, you might also want to bring that with you.

Have a written list of evacuation items in addition to the 5 P’s. Have everything written on a list of what you would bring should you need to be evacuated. It’s so difficult to think of everything you need to bring in the middle  of a crisis. This list could include clothes, computers, hard drive back ups, phone chargers, checkbooks, purse.

Plan for your relocation. Know where you can go and what type of an arrangement you will need. Can you go to a shelter and have your child safely eat their food? Are you comfortable eating out every meal by going to a hotel? If not, what types of condos or extended stay hotels are in your area? Or within 100 miles of your area? Is it safe to stay with a family member?

Bring Food with you. If you have ordered special food online, you certainly want to bring it with you because you likely won’t be able to have it mailed to you in time wherever you are staying. Even businesses, like specific grocery stores, can be in an evacuation zone. So if you get food from just certain stores, keep some on hand at all times.

Be prepared to be gone for more than 72 hours. The officials told everyone here to pack enough clothes and supplies for 72 hours. Obviously those with burned homes won’t be back in a rebuilt home for probably a year or more. And others in the neighborhood won’t be allowed back in for months because of the gas and electric lines needing repairs. Many of them only packed for 72 hours and have had to get clothing, prescriptions and other supplies while they wait to be able to go home.

Bring your nebulizer and peak flow meter even if they haven’t been needed recently. We learned this one the hard way last year! It would have been much easier to have had these items with us than to have to race off to the doctor’s office. Lesson learned!

Plan for a rendezvous point. If your family members become separated, have an established location where you will meet.

Having a plan in place will help you and your family to prepare for the worst, and hope for the best – that you’ll never have to put your plan to use!

 

Here’s To Success For All Our Children

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This is our daughter, Michaela, on her first day of Kindergarten in 1996. It’s been a long road of education since then!

We didn’t know that Michaela would come to be diagnosed with several learning disabilities, or that she would also have multiple broken bones from osteopenia caused by celiac disease, or that all the stomach aches she had for years wasn’t because of anxiety about school, but rather from a mast cell disorder.

We were new parents to a second child, Morgan, who on that day was just 7 months old and yet to have his first allergic reaction.

I hear from so many of you who manage children with food allergies in addition to diagnoses of Eosinophilic Esophagitis (EoE), Celiac Disease, Attention Deficit Disorder, Dyslexia, Autism and more. Sometimes all of these diagnoses are in one child, or they span multiple children – all with different needs, and many times with different food allergies! It’s not easy on us parents, and it can become very disheartening if you’ve heard messages from teachers or others similar to what we’ve heard, “Don’t expect too much from her.”

My husband and I did and do expect a lot from our two children. We expect them to listen to their bodies and to honor their physical needs – to carry EpiPens and Benadryl always, to eat safe food always, and to take their medication appropriately and consistently. We expect them to listen to their brain and to challenge themselves academically – to try their hardest even if they receive a grade of a “C” or worse, to go to school every day and to try to learn. We expect them to listen to their heart and to follow their passion in life – to be of service and helpful to others and to treat others with respect even if they haven’t received that in return.

We encourage them to find a higher power in their life that brings them joy and peace. We encourage them to love and value each other and to spend time together. We empower them to self-advocate for their needs with their friends, family and especially at school. We empower them to question the adults in their life, because sometimes even an adult doesn’t know the safe food to feed them.

Mostly, we enjoy them. We enjoy their sense of humor; we enjoy laughing and laughing until we cry; and we enjoy the life that all these challenges of so many diagnoses have provided to our family. All of these things together have made our children who they are.

When I heard a psychologist say to me “Don’t expect too much from her” when my daughter, Michaela, was in 3rd grade – I didn’t have the 22+ years of parenting under my belt that I do now! I had just heard a list of diagnoses a page long from the experts in a “child study” the school performed on my daughter. We knew she was having difficulties in school, but even that list of diagnoses the experts provided didn’t include celiac disease or a mast cell disorder which she was diagnosed with later.

She struggled for years with dyslexia, for which we got her a reading tutor; ADHD, for which we determined to not medicate her but instead to completely change her diet away from foods with preservatives, colorings, sugar and caffeine; and an auditory processing disorder, for which we obtained a 504 Plan, along with the other two conditions. This combined effort still didn’t create ease and comfort for her to attend school. It took until high school to get the diagnosis of celiac disease. By that time, the enamel on her teeth had worn off, and she had suffered multiple bone breaks in her arms and toes! She was in college before she got the diagnosis of the mast cell disorder.

Michaela expected a lot from herself despite everything that she was experiencing. We didn’t focus on what she couldn’t do well. We helped her to focus on everything that she could do – like laugh at herself when she made a mistake, think outside the box on school projects, intuitively know how others were feeling, and encourage her to embrace being different in her thinking processes.

I remember when Michaela graduated from high school. We were on our way to the graduation ceremony when she said, “I’m so glad I’m done. The last good year of school was kindergarten!” If that doesn’t make you feel terrible as a mother! Yet, she signed up to go to college at a local community college, and found that the college lifestyle fit her needs much better. She could schedule her classes later in the day, when she was ready to go to school. She could focus on an academic area of her choice – Communications (she was always good at talking, having gotten many infractions for chatting in grade school!) She started to understand that she was good at school when she could ‘do school’ the way it fit her.

She transferred to a larger school, the University of Colorado at Colorado Springs (UCCS), for her last two years. She didn’t like this school nearly as much since the classes were larger, and the professors not near as caring. However, she kept going, while working two jobs, and graduated in May with a GPA of 3.3! What a wonderful accomplishment for a child with so many diagnoses!

 

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If you’re wondering if your child can do this – I assure you they can! Take it one day at a time, love your kids, be proud of their accomplishments however big or small. Don’t let a few diagnoses alter your hopes or your child’s hopes for the future.

It makes me think of Kermit the Frog who lamented being green, which is not unlike lamenting being diagnosed with food allergies, celiac disease, ADHD or any other thing. In the last stanza of the song, he sang:

When green is all there is to be
It could make you wonder why
But why wonder why wonder
I am green, and it’ll do fine
It’s beautiful, and I think it’s what I want to be

 

 

 

 

 

 

Does Your Child With Food Allergies Dislike Being ‘Different’?

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My son, Morgan, is now 17 years old and has a long time to process feeling ‘different’ from his peers. He frequently hears from other children with food allergies who ask him questions like “Do You Get Tired of Being Different?” Morgan got the opportunity to answer this question in an email that he received earlier this week. I so enjoyed his response that I wanted to share it with all of you.

I can’t personally say I’ve ever been tired of being different; I actually rejoice in it! It makes me, ME. In the same way, having food allergies to peanuts, eggs, or animals makes you, YOU. I really enjoy being different. Why? Well, I went to a Boy Scout camp when I was younger called Camp Alexander. My mom and I really didn’t feel comfortable having the chef cook my food, so we pre-cooked and brought up all of my food for the week long camp – it was a lot of work, I know! But, it was completely and absolutely worth it.

While other Scouts were having bouncy macaroni or dried out cereal, I got to have steaming hot pancakes and sausage that I knew was both tasty and safe! If I wasn’t different, I’d never be able to have that awesome food; instead, I’d be stuck with the regular ol’ cereal. I really don’t like to be stuck with the generic stuff…it’s boring!

However, I know there’s a lot more to being different than just tastier camp food. Sometimes in school you may have to eat something different than all the other kids, and it really doesn’t feel good, right? I know the feeling. You just want to be like all the other kids instead of being different, right? Or, as you said, you have to have your mom organize all the food parties to make sure you’re safe. I’m sure you’ve been playfully teased about your food allergies – like kids complain about the fact that you just have to have food allergies. 

I say move on. Ignore them. I don’t know if you look up to someone or you want to be like someone, maybe a superhero. Iron Man maybe? I’m not sure. But if you do, just know they’re different too. They are someone SO different than everyone else and that is what makes them so special and awesome! 

I like being the “allergy child” or the “allergy kid.” It tells me they’re jealous. They don’t get special treatment (like kings. I mean, come on, we’re definitely treated like kings.) from their moms or dads or get special food simply because they’re different. They’re stuck with that plain ol’ bland cereal instead of awesome food that you like! I really do think they’re jealous. So, you know what I do? I have a lot of fun with my awesome food and ignore them.

 

It makes me a proud Mom to read my son’s response and to know that he means every word of it. I’m too am glad my son is different. We Moms didn’t ask to be on this path of advocating for our children with food allergies, but I for one am glad that I’m on this path with many other fabulous, intelligent Mothers who just want their children to be safe and happy!

 

Kicked Out of College Because of Food Allergies?

Many of you probably saw the blog post by a young Washington state woman titled, “How I was Kicked Out of College Because of My Allergy.” The blog post was taken down, but a local news station interviewed this young woman here. I was horrified and confused how this situation had occurred, especially after the young lady contacted the Disability Services Office of her school.

Since my son, Morgan, is now 17 years old and a junior in high school, we have begun the college search in earnest. It is frightening at times how little a college really knows about food allergies. However, colleges and universities need to get ready. There are approximately 15 million Americans with food allergies; and one out of 12 are under age 18. That’s about two in every classroom. Guess where they are going to end up? In college!

I wrote a blog post last year about Food Allergy, College & 504 Plans after attending a talk by a Senior Attorney with the Office of Civil Rights (OCR) in Denver. The OCR Attorney suggests that all students with food allergies should start with the school’s Disabilities Services Office (DSO) rather than go directly to the Dining & Housing Office and ask for assistance. The DSO is more likely to know what is legally required with accommodations to access the curriculum. The problem we found is that if you go to DSO first, prior to being admitted to a university/college, you might find your child not admitted. While this is not supposed to occur, it’s easy to see how it could.

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When I called a ‘certain’ Colorado university last year inquiring about meeting with the DSO when our family was visiting the school, I was told that they wouldn’t meet with us unless their 6 pages of paperwork had been completed AND that an accommodation had been determined to be warranted. I then asked how many students with food allergies the DSO had dealt with. The woman I spoke to had never heard of one student! She did say she was on the job for only a month, but that really didn’t help me feel any better. If this wasn’t part of her training, my son would be in for a long road toward educating the DSO about food allergies and what accommodations could be expected. Additionally, we didn’t want to put a big red “A” (for allergies!) on his application to the engineering program which is a highly competitive program. It would certainly be easy for them to deny my son’s application under the auspices of anything but accommodating for food allergies. (I later learned that the information we had gotten about not meeting with us until paperwork was completed was erroneous. Lesson learned: ALWAYS ASK TO SPEAK WITH THE HIGHEST LEVEL MANAGER IN THE DSO OFFICE!!)

I’ve spoken with the OCR Senior Attorney several times through the last year about numerous situations in schools where food allergies are concerned. One thing to remember is that public K-12 schools are held to the standard of FAPE – Free Appropriate Public Education, while public colleges are held to the standard of “reasonable accommodations.” The attorney prefers to not get hung up on the term ‘reasonable’ and instead to focus on “effective” accommodations for the student. The question becomes – What’s reasonable to accomplish an equal opportunity for the student? The accommodation has to be effective.

The idea is that the DSO of a school and a student should have a continued dialogue to determine what accommodations are necessary. In this interactive process, the school goes back to the student to see what’s working and what isn’t. The student reports back to the DSO with similar information. There aren’t magic solutions or one-size-fits-all. It may take some creativity, and it also varies with each student and each school. While it may be reasonable for a professor to learn how to administer an EpiPen – in a class of 300 students, is it effective? Additionally, this process necessitates that a student have complete understanding about the exact nature of their food allergy. Do they have contact issues? Have they ever had an inhalant reaction? What accommodations will be necessary for the student to have equal access to the curriculum?

There are two affirmative defenses for a college to deny an accommodation request by a student: 1) the accommodation would require a fundamental alteration of an academic program and 2) the accommodation would put an undue financial or administrative burden on the school.

The OCR Attorney told me that food allergies are a new experience for colleges, and neither the OCR nor colleges have come up with solutions. There really is very little that the OCR can do, other than provide guidance at this point since every student and every college is different. I was told that the OCR comes out with “Dear Colleague” letters to colleges on various topics, and such a letter about food allergies is somewhere in the queue. The release date of this has not yet been determined.

 

 

 

 

AllergicChild.com & Food Allergy Mama, Kelly Rudnicki

Kelly Rudnicki

Kelly Rudnicki is the author of the The Food Allergy Mama’s Easy, Fast Family Meals, The Food Allergy Mama’s Baking Book,  and Vegan Baking Classics. She’s also the creator of the award-winning blog Food Allergy Mama. Her blog has twice been named Babble’s Top Food Blog and ranked #6 in Healthiest Eating. She has appeared on The Martha Stewart Show, Windy City Live, WGN News, ABC News as well as in numerous publications including The Wall Street Journal, USA Today, Chicago Tribune, Chicago Sun Times, Parents, Parenting, Shape, Family Fun, Woman’s Day, and others.

As the mother of five young children, one of whom with severe food allergies, Kelly also spends much of her free time advocating for food allergy awareness and improving school nutrition. She volunteers and speaks on behalf of food allergy organizations such as FARE, and helped write the food allergy guidelines for the Chefs Move to Schools Chicago, an initiative launched by First Lady Michelle Obama’s Go for the Gold campaign to promote higher standards for food, fitness and nutrition education. Kelly also serves as a Parent Ambassador for Healthy Child, Healthy World.

She lives in Southern California with her husband and five children.

Kelly, can you please tell us what food allergies you manage in your children and how you found out about them? My 10-year-old son John was diagnosed at age one with severe food allergies to dairy, eggs, peanuts, tree nuts, peas and legumes. The only allergy he outgrew was egg at age three after a successful food challenge confirmation. We found out about John’s allergy like many other parents of food allergic children, a scary reaction. John was nearly a year old and ate one of his first finger foods, a Gerber Veggie cheese wheel which actually contains very little veggies but is coated in cheese powder. He immediately broke out into hives on his face, started coughing and then vomiting. It was a horrifying experience.

Kelly Rudnicki cookbook

What was your inspiration in writing your newest cookbook, “The Food Allergy Mama’s Easy Fast Family Meals“? After the success of my first book The Food Allergy Mama’s Baking Book, many of my blog readers routinely wrote me asking for my favorite family meals that are fast and allergy-friendly. As a busy mom of five, they wanted to know how I get meals on the table day in and out. I realized that there was a real need to have a practical family meal cookbook that is no nonsense, easy to use and produces delicious recipes every time. The bonus of this book is that many non food allergy families love the book just as much!

What meal is your children’s favorite? My family loves pizza night!

Are there any budding cooks in your family? As a mother of four boys I feel it is equally as important to teach them how to cook as much as my daughter. It’s an important life skill that can easily be taught by mastering a few simple cooking techniques and recipes. Cooking is the epitome of inner creativity, and something that should be fun, approachable and not scary. When people say they don’t know how to cook it is usually because they made a recipe that failed them, not the other way around. It’s wonderful to teach our children to feed our bodies good food made from the heart. And in turn they will teach their own children the importance of family mealtime and cooking. The ripple effect is amazing.

With 5 kids, do you make safe meals that everyone can eat? Or do you ‘short order cook’ a safe meal and then a meal for everyone else? If I was a short order cook, I would lose my mind! It’s hard enough as it is to cook one meal on a busy weeknight! I choose to make recipes that aren’t fussy, complicated or require a ton of ingredients. They are crowd pleasers. However, one child absolutely dislikes the main dish I’ve made for dinner, oh well. They eat the sides and move on. Parents shouldn’t feel obligated to make everything perfect for their children, it’s really OK to serve one family meal and be done with it. If anything, it teaches children to “roll with it”.

Since Mother’s Day is this month, can you share with us any special celebrations that your family has for this occasion? I usually take the day to go for a run and reflect on being a mother and what it means to me. The day I became a mother I was forever changed. Having children forced me to get out of my comfort zone and challenge me to be the best person I could be. I wanted them to watch and learn from not only my successes but most importantly my mistakes. There is no greater reward in my life than my children. I also take the day to remember my own mother, who passed away 16 years ago. My heart broke the day she died, and I don’t think you ever fully recover from the death of your mother. But you do learn, grown and become a mirror of what she was to you.

What can you share with us about sending in safe school lunches – anything wonderful and new for kids tired of the same old thing in their lunch bag? I recently discovered the greatest thing about making safe lunches your child will actually eat and enjoy…have them either help or make their own! I admit I stumbled upon this concept out of part desperation, part selfishness. One day I was exhausted, running in a million directions and literally too busy to spend the extra few minutes to make lunches for my four school aged children. My kids were lounging around waiting for me to take them to school and I had an A-ha moment….have THEM make their own lunches. I had rules; make a sandwich or something with protein, a veggie and a fruit. Cracker and snacks were optional. It was a true epiphany! The kids took ownership in their meals, and were proud to make lunches THEY liked. And it was fun for them to be creative in what they packed every day. I do check the end result to make sure there isn’t just frosted flakes packed. But they’ve done a great job and I think they have really learned the value of making your own meals.

Thank you for including me!

Thank You Kelly and Happy Mother’s Day!

 

How Vigilant Is Your Family With Food Allergies?

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Having read about yet another tragic death from food allergies last week – a peanut allergic 11 year old boy in Utah – it reminds me of the discussions we had with other food allergy families about how vigilant they were. Some families didn’t have the benefit of the knowledge about food allergies from an allergist. Some didn’t properly know how to recognize the symptoms of an allergic reaction. Some felt that an overly vigilant lifestyle around food allergies would thwart their child’s ability to enjoy life. Other families were so scared of an allergic reaction that they hovered over their child not allowing them to ever be without parental supervision. We’ve found the more understanding and awareness we have of the potential for an allergic reaction, the more able we are to make an informed decision about  what level of vigilance is needed. With food allergies, once a family figures out how vigilant they need to be, sometimes it’s too late – and that is beyond tragic!

When our son, Morgan, was diagnosed at 18 months old with a severe peanut allergy (and an egg allergy too), he had experienced hives upon touching a peanut butter sandwich. After that, we were in that stage of denial, hoping that the skin prick test was an anomaly. I thought maybe he would outgrow the peanut allergy. He was able to eat eggs baked in foods just fine, so maybe we were over reacting to the food allergy diagnosis.

A year or so later, at the local school playground, I was talking with another Mom whose 8 year old son had a peanut and egg allergy. She told me about how they never tell the school about his food allergies because he only reacts if he eats the food. And according to her, he knows to never eat peanuts or eggs. She also said something like, “Besides we end up in the ER a couple of times a year, but it’s no big deal.” I was horrified and scared! Was that in our future? Was that really the level of vigilance that was acceptable?

Something shook me to the core about that conversation, and I decided that our family wasn’t going to live that way. There had to be a way to stay away from Morgan’s food allergens and to keep him safe. We needed some agreements to keep him safe in all situations. If my husband and I agreed about these when he was a little boy, Morgan could then continue living by these rules when he took on keeping himself safe.

Here were our rules about food:

Eat foods that have an ingredient label

With the labeling laws in existence now, even this can be problematic if a teacher is expected to read an ingredient label and understand that “May contain…” is a voluntary statement on a label. That’s why we needed more rules than just this one! We read the label of every product along with Morgan from his earliest years. I believe Morgan wanted to learn how to read at a very early age to be able to read food labels.

Read every ingredient label every time you purchase a product

Product ingredients change even if the product packaging stays the same. We made this mistake once with a Klondike ice cream bar. We had purchased this product for at least a year and while the packaging stayed the same, the product contained a “may contain peanuts” warning that I didn’t read. He had a horrific stomach ache after eating, and we were able to trace it back to the ice cream bar. We were graced with a warning on this!

Any baked foods that don’t have an ingredient label aren’t allowed

Think about bake sales at school – a disaster waiting to happen!! Another little girl in Morgan’s kindergarten class had a peanut allergy. She had never had a reaction, but since her older brother had a peanut allergy the parents had her tested too. They had an EpiPen for her at school, but they didn’t give her any rules about her peanut allergies other than “don’t eat peanuts.” Therefore, she would ask another child at a bake sale, “Does this have peanuts in it?” I cringed when I heard this. Thankfully, she outgrew her peanut allergy and nothing bad happened along the way. This situation could have easily turned out otherwise.

Eat only foods that Mom & Dad give you or approve

When Morgan would go to a birthday party, I would either prepare a safe snack for him OR he would decide to not eat OR on the rare occasion that the food was safe, I would have read the label and approve it for him. Usually this was with ice cream. Morgan has brought his lunch to school every day. While the school is required to provide a safe meal for him, we were able to provide a safe lunch for him and did so. It was one less worry for us.

– Carry a Chef Card for Restaurant eating

Eating at a restaurant with food allergies is a big deal. Carrying a Chef Card really helps to let the wait staff and the Chef know EXACTLY what your child is allergic to. Better yet, speak with the chef about cross contamination and how to keep your child safe. Have your child practice giving the information to the wait staff when they get older so that they will be able to do so alone when they are a teenager.

Carry Your EpiPen AT ALL TIMES

There will be mistakes with food allergies. Having two EpiPens with you at all times will ensure that when there is a mistake, you have this life saving medicine within arm’s reach. Additionally, keeping an EpiPen in the car will ruin the medication (too hot) or the injector device (too cold).

Don’t make food allergies the center of your child’s life

Morgan has been able to do so many activities because we look at the opportunity for him to enjoy and experience life first, and then we figure out how to manage his food allergies. He is an intelligent, loving, wonderful son who happens to have food allergies.

AT 17 years old, Morgan now is responsible for caring for himself when it comes to food allergies. He’s very cautious and makes good decisions. And he ALWAYS carries his EpiPens. Yep, you’re reading a little Mother Pride on that one!!

Have You Become a Food Allergy Detective?

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When my son, Morgan, was little we were constantly trying to figure out what caused his red, weeping eyes. Or his runny nose. Or his bad eczema. Or his hives. It was a daily battle in becoming what I now call a “Food Allergy Detective.”

Truly, it was frightening to not know why he was reacting when we went to the library, for example. We’d bring home several books. I’d look over at Morgan and he would be a mucousy mess. We never quite figured out that reaction for sure. It was probably a combination of the fact that the library had a “Paws to Read” program where they brought a dog into the library on a weekly basis to listen as kids read. Morgan had bad dog allergies, but at the time I didn’t understand that the dog hairs left behind could be enough to cause a reaction for him. It could have been the various pollens, dust, smoke, peanut dust and dander on the books themselves. Or it could have been something that we never thought about.

All one summer, Morgan had horrific eczema. We thought it must have been the sunscreen we were using. I continued to purchase new and different products in an attempt to find the mysterious cause. It took years to figure out that it was the ‘kid foods’ at the pool where we frequented. Kid foods have lots of food dyes in them. Turns out that Morgan got eczema from all food dyes. We found this out when we eliminated food dyes from his diet, at the suggestion of our allergist. So the Popsicles he was eating daily at the pool helped to exacerbate his eczema. What a relief it was to come to that realization!

After Morgan had an anaphylactic episode to fish on a camping trip, we thought we could still grill fish at home. We’d grill it outside our house on the deck, use a special grilling ‘cage’ for the fish, clean up scrupulously afterward – and all would be fine. This worked for a few months. Then, one morning we weren’t so lucky. We had eaten fish the night before, and Morgan had been fine. But the next morning, his eyes swelled shut and then began bulging. We dosed him with steroid eye drops, Benadryl and raced off to the allergist. Our doctor determined that Morgan had touched the fish that probably wasn’t cleaned entirely off the countertops or some surface inside our house. He had likely then wiped his eyes. That was a frightening experience! We determined then that it’s not worth eating fish even with preparing it outside on the grill. We just aren’t able to be careful enough to ensure his safety.

All this detective work has been necessary to try to have some control over Morgan’s environment. Ultimately it’s helped him to gauge whether a situation is safe for him. We talked through many situations with him as he was growing up to determine what might happen based upon past experience. He is one of the most sensitive food allergic children that I know. We learned though how to keep him safe. We’ve found that it’s REALLY necessary to have a safe home. It allows his immune system to be on ‘pause’ while he’s sleeping.

As for Mom here – I’m sure the local police force would appreciate my detective abilities. I’ve honed them well through the years!

Growing Up With Food Allergies

In December of 2005, when my now 17 year old son, Morgan, was just 9 years old, I asked him if he’d be willing to start writing a column for my AllergicChild.com Newsletter (which has since become our Blog). We decided to call it Morgan’s Corner.  This was before he’d had anaphylaxis to fish on that fateful camping trip. He was still in elementary school, and wasn’t yet allowed to self-carry his EpiPen since the law in Colorado was yet to be passed.

However he was certainly knowledgeable about his food allergies! He’d experienced teasing/bullying on the playground, been left out of activities at school (even with a 504 Plan in place!) and gotten to self-advocate with a teacher. The life of a child with food allergies is filled with lessons. If you ask your child the questions below, do you know what answers you would get?

A trip down memory lane found Morgan’s original column:

 

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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.

Food Allergies, Mast Cells & Hitting Your Threshold

Food Allergies, Eosinophilic Esophagitis (EoE), Autism, Asthma, Celiac Disease and Eczema all have mast cell issues in common. There is a huge need for research into food allergy and its relationship with these other diseases. You have probably heard of most of these diagnoses except for maybe a new diagnosis called Mast Cell Disorder.

My daughter’s and my diagnosis with a Mast Cell Disorder has led me to do some research into mast cell disorders and how they relate to these other diseases, especially since my daughter also has tree pollen allergies, celiac disease and ADHD; I have EoE, environmental and other severe food allergies; and my son has a diagnosis of multiple life threatening food allergies, eczema, environmental allergies and asthma. I believe there’s a huge opportunity to find a cure for these diseases by combining research efforts.

I’ve heard from so many families who have one child with celiac disease and one with food allergies; or some other combination of the issues above that there seems to be a link between these conditions. And as far as I know, no research has been done to look at a ‘main cause’ of all these diagnoses. Yet, all are on the rise in our children.

Additionally, with the Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) research that’s currently being done in an attempt to find a cure for food allergies, it concerns me greatly that children participating in a research study may not be aware that they might be trading one disease for another. They may be getting rid of their food allergies, and end up being diagnosed with EoE or a mast cell disorder somewhere in their future.

In fact, some children have to cease participation in a research study because of a diagnosis with EoE, that later resolved after ending peanut desensitization. Research on milk OIT was reported at the recent AAAAI meeting where patients were found to become more reactive to milk after three to five years of desensitization. I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder.

So much isn’t known about how the immune system functions, and approximately 75% of our immune system is in our gut. It’s quite a gamble in an attempt to find a cure for food allergies!

The Allergic Response

I’m not a medical doctor nor an allergist, but this is what I understand occurs in our body when the body senses an invader, or foreign substance, and the immune system is triggered. An allergy is an overcompensation of the body’s immune system when confronted with the protein of a food, a drug (such as penicillin), a bee sting or an airborne pollen that the body views as an invader. The body releases an overload of histamines in response to the attacker substance, which can create symptoms such as a runny nose all the way to the extreme of anaphylaxis.

The immune system normally protects the body from harmful items such as bacteria or viruses. In the case of allergies, the immune system has a hypersensitivity or an allergic reaction. During an exposure to an allergen, B cells are alerted and turned into plasma cells which produce IgE (immunoglobulin E) antibodies to fight the “invader.” These antibodies travel through the body until they come into contact with the immune cells called mast cells.

mast cell

Mast cells are present in the skin, respiratory system and the gut and are important to keep us healthy by fighting off  viruses, etc. The antibodies attach themselves to the mast cells via a receptor on the surface and remain attached. That way the next time the immune system meets up with the same invader, the system is primed to react again.

Eosinophils are white blood cells that are one of the immune system components responsible for combating parasites and certain infections. IgE, mast cells, basophils, and eosinophils are essential components of allergic inflammation. Mast cells are tissue resident cells and uniquely required for immediate hypersensitivity. Basophils are largely circulating cells, but home to areas of allergic inflammation during the late phase response. Eosinophils are resident to the GI tract, but also home to allergic inflammatory sites.

Patients with EoE have a high level of white blood cells, or eosinophils, in their esophagus. Research has shown the relationship between high eosinophils and high mast cells.  Dr. T. C. Theoharides of Tufts University has found that children with autism have high mast cells, which he postulates causes the severe form of “brain fog” that these patients experience. The brain-blood barrier is compromised and affected by high mast cells. Research has found that patients with untreated Celiac disease have depressed levels of mast cells, as do patients with eczema in different recent research.

Patients with mast cell disorders may or may not have true IgE food allergies; however most of these patients are triggered by high histamine foods. Many are triggered by pollen allergies, and/or certain drugs that increase mast cells. Some, like myself, are so sensitive that food dyes in medications can cause a reaction. It’s interesting that all of these conditions involve mast cells not being “normal.”

A Little History

Since my diagnosis of a mast cell disorder in 2010, I realized how long I have suffered from other allergic issues. I had severe environmental and pollen allergies as a child; got diagnosed with several food allergies in 1993, three years after my daughter was born; and continued to have more and more stomach aches after my son was born in 1996. I got stung by a wasp in 2006, which put my body ‘over the threshold.’

It took 4 years before I got a diagnosis of a Mast Cell Disorder from Dr. Philip Miner, a gastroenterologist with the Oklahoma Foundation for Digestive Research in Oklahoma City, OK. I later found out that Dr. Miner has been researching mast cell disorders since 1988, and only recently has his work been incorporated into medical literature. More and more patients are being diagnosed with mast cell disorders since Dr. Miner has developed the various criteria to review. There are only a few research centers in the USA that have knowledge about mast cell disorders. You can find a listing of these here. Dr. Miner has trained several of these physicians. He is the ultimate researcher, and tells his patients to ‘never give up hope’ that he can help you feel better.

Mast Cell Disorders

You may have heard of systemic mastocytosis or urticaria pigmentosa (also called cutaneous mastocytosis); however Dr. Miner found that there is a spectrum of mast cell disorders that don’t necessarily biopsy in the bone marrow or the skin. One can have a pooling of mast cells in any organ, and my daughter and I have such a pooling in our gut. Patients diagnosed with systemic mastocytosis or urticaria pigmentosa also frequently have stomach aches, since the high mast cell count is not only in their bone marrow or skin, but also frequently found in their stomach.

I’ve learned from Dr. Miner that those of us with mast cell issues have a threshold over which we begin to react. This is true with most of the allergic issues. A high pollen day along with a virus can send your child’s immune system over the edge to where they break out in hives for no apparent reason. Yet what’s really going on is an onslaught of mast cell activity that has made it appear that your child can no longer tolerate certain foods, for example. Or it appears they are having inhalant reactions; or suffering from stomach aches during the Spring and Fall when pollen season is high. Too many mast cells in the body react, and the child goes over a threshold, and begins to react to virtually everything.

The high mast cells in our gut affect the mucosal barrier in our stomach and intestines leading us to ‘leaky gut’ syndrome. This allows even more food proteins to pass into our blood stream causing more food allergies and more reactive issues. My daughter’s leaky gut was exacerbated/created by her celiac disease which she had for 10 years prior to a diagnosis.

The immune system threshold may be reached by a virus, a fragrance, pollen in the air, a drug or a high histamine food. If a patient with a mast cell disorder is skin prick tested or blood tested for an allergy, there may not be a true IgE allergy to the “invader.” The mast cells are just twitchy and ready to react to anything and everything. These reactions can be in the form of hives, stomach aches or life threatening anaphylaxis.

Patients with mast cell issues may be diagnosed with celiac disease yet find their stomach aches continue even on a gluten-free diet. Or the patient may be diagnosed with Irritable Bowel Syndrome, without any biopsy completed to check for high mast cells in the stomach or intestines. Information about mast cell issues is not in abundance on the Internet. Some information about Mast Cell Disease can be found at www.tmsforacure.org and emergency care can be found here.

Published research can be found here. Most of this information is about the systemic form of the disease.

Mast Cells, Histamines, Drugs and Foods

If you believe that you and/or your child is having some mast cell issues and going ‘over the threshold’ on a regular basis, what can you do? Dr. Miner has stated that there are 7 deadly sins for mast cell patients to eat: beef, pork, onions, tomatoes, wheat, oranges, and chocolate. These foods are all high in histamine and his research has shown that mast cell patients can clear up a lot of stomach issues by ceasing to eat these foods. If your child is suddenly “over their threshold” and seemingly reacting to everything, try removing these foods from their diet and see if their system calms down.

Additionally, bananas hold histamine in the body. You may not have an allergy to them, but can still experience symptoms, like hives, if you eat them.

My daughter and I are currently on a very limited diet of foods to try to calm down our mast cell activity. We eat completely organic currently and it’s working! We never had to go on a feeding tube (which many mast cell patients have to do to give their gut a rest), for which we are very grateful. It’s really hard to eat very few foods every day diligently. But constant stomach aches and hives are no fun, so there’s a lot of willingness that we both have to feel better.

If you remove preservatives, GMOs, food dyes and packaged foods from your child’s diet – even if you don’t go completely organic – you might find that your child begins to feel better. That has been our experience.

There are certain drugs that also increase mast cell degranulation. They are:

Aspirin
NSAID’s (Ibuprofen, Motrin, Aleve)
Morphine
Iodine
d-tubocurarine (used in anesthesia)
polymixins (in over the counter bacitracin)
decamethonium
alcohol (if it makes symptoms worse)
Taking even one Ibuprofen pill can affect my stomach. I’ve learned a lot of other ways to get pain relief for muscle aches!

Mast Cell Drug Regimen

There is a drug regimen that is necessary to stabilize the mast cell. Zyrtec and Zantac are used for H1 and H2 histamine blockers. Additionally, to stabilize the mast cell, Gastrocrom (Cromolyn Sodium) is often prescribed, but neither my daughter nor I could tolerate this. Instead, we are on Ketotifen in pill form, which we obtain from a compounding pharmacy since it isn’t formally FDA approved in the USA. Patients may also benefit from Budesonide, a corticosteroid, especially if EoE is also diagnosed.

For those of you with children diagnosed with EoE, you probably notice that many of these drugs are also prescribed to manage Eosinophilic Esophagitis.

In order for mast cell patients to get better, their food, drugs and environment all need to be managed. If a patient is constantly ‘bumping up’ to their threshold, the immune system is constantly firing. And likely they are miserable with stomach aches, nausea, hives, nasal congestion, etc. Eating a low histamine diet, taking all prescribed medications, and watching for individual triggers are necessary to begin the long road to feeling better.

Mast cell disorders are a chronic disorder, and one that will not be outgrown. A patient can go into remission, but it’s very difficult to get to that point if you have been suffering for years with a high mast cell count. It can take months and even years for mast cells in the gut to normalize.

Food Allergy Research & Mast Cells

I have read a lot about the research utilizing Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) for a cure to food allergies. These desensitization protocols concern me greatly because of the mast cell involvement with food allergies. I’ve yet to see one research study wherein patients are first put through a biopsy of their esophagus, stomach and intestines to get a baseline of their mast cell count at the onset of the study. In my mind, this would give researchers a better idea of which patients are more likely to go over their threshold if their gut mast cell count is already high. I have queried this idea with a leading food allergy research doctor in the USA. His response was that it’s so difficult to get patients to enter into research trials, that asking for a child to have an endoscopy would likely have more parents decline to participate.

Ingesting small amounts of allergens is certain to increase the mast cell count in the gut, and the result could be mast cell issues in years to come. We just don’t have enough research to know what is going to happen to these study participants 10 or 20 years down the road. I say this because of the history of what has happened to me. A child with multiple food allergies may not be able to eat 4 or 5 foods. An adult with a mast cell disorder may only be able to eat 4 or 5 foods!

I receive dozens of emails from families whose children have been diagnosed with EoE, yet most have never heard of a possible mast cell involvement with their child’s EoE. Some GI docs are doing biopsies for mast cells in addition to eosinophils, yet they aren’t using the Alcian Blue 3 stain, which is the only staining that effectively picks up the true level of mast cells according to Dr. Miner. So the GI doc isn’t getting the correct information to properly diagnose the problem.

I’ve also had many discussions with parents who believe that their children have an inhalant allergy to a food. They tell me these stories that are heart wrenching about their children suddenly reacting to peanuts on someone’s breath or something similar. The reactions are frequently quite severe. Inevitably, years down the road I hear from the parent that the child has been diagnosed with EoE. This makes sense in light of the mast cell involvement. If a child has a diagnosed food allergy to peanuts, for example, that may be only part of the story. The child may also have a high mast cell count that manifests into a diagnosis of EoE. Wouldn’t it be nice if the allergist who hears a story of a child having inhalant food reactions could/would send the child to a GI doc for a mast cell disorder check up?

I wish there was more shared research on these various disorders so that children wouldn’t have to suffer needlessly without a proper diagnosis. There is still so much to learn, but I hope that my diagnosis with a mast cell disorder might help others who are suffering recognize some similar symptoms and get help!

I wish that we knew more about the workings of the immune system so that not only could we find a cure for food allergies, but also a cure for EoE, mast cell disorders, autism – the list goes on and on.

I wish that the research of all these conditions were more easily shared with all the various doctors (allergists, pediatricians, GI docs) so that patients didn’t suffer for years before getting a diagnosis.

In the meantime, our family is going to be cautious about what we eat to ensure that we do our part to cease adding diagnoses to our long list!

Read my daughter’s story of mast cell issues here.

You can also read all of the mast cell & Eosinophil blog posts here.

 

Food Allergies in School: 3 Allergists Answer questions

Our School District’s Food Allergy Task Force wanted to find out what several allergists thought about managing food allergies at school. I sent these three allergists several questions:

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Daniel F. Soteres, MD MPH is a Board-Certified allergy/immunology physician with offices in Colorado Springs and Pueblo. He has been in private practice at Asthma and Allergy Associates and Research Center since 2005.

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Todd Mahr, MD, is a Board Certified director of pediatric allergy/immunology at Gundersen LutheranMedical Center in La Crosse, Wisconsin.

Bonnie Baswell

Bonnie B. Baswell, MD, FACAAI is a Board Certified Allergy & Immunology physician in Colorado Springs. She has been in Colorado Springs since 1984 and in practice at Colorado Springs Allergy & Asthma Clinic.

Each allergist was asked the same questions, and their responses are copied exactly as they responded. The hope was that we would be able to better manage some of the nuances of food allergies in the school classroom.

When you  are asked to write a letter outlining school accommodations for a severely food allergic child, do you always suggest an allergen-free classroom(s) for the child? Or does this depend upon age or previous allergic reactions of the child?

Dr Soteres: No, in general, I do not suggest and allergen-free classroom.  However, I do make exceptions depending on the history and testing information.  Multiple factors contribute to the decision.  There are objective criteria like skin test and blood test results and subjective issues like the history of reactions and their severity, student and parent anxiety, as well as the school’s (administration and teacher’s)  responses to these issues.

Dr Mahr: Personally for me, it depends on the age of the child. As they get into 4th grade or older, I try and include the child in the recommendation as they often do not like to be singled out. However, safety is always first. We try and recommend no food in the classroom.

Dr Baswell: I would recommend an allergen free classroom for peanuts and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut, this would have to be addressed on an individual basis.

As an allergist, if you suggest an allergen-free zone in a classroom, are you also concerned about foods containing an ingredient label stating “may contain…” being in the classroom? Or are you only concerned about products that actually include the child’s allergen? 

Dr Soteres: This is variable.  A few kids are so sensitized to their allergens that the “may contain.” label may be a threat.  For most, this is not a threat.

Dr Mahr:   We try and concentrate mostly on the labeled allergens, and this is difficult as with the labeling act, so many foods have had the “processed in..” it is hard for schools to operate in this gray zone. So with that, we usually have them acknowledge the labels.

Dr Baswell: I would recommend an allergen free classroom for peanut and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut this would have to be addressed on an individual basis.

In a school setting, would you be concerned about a peanut allergic child touching a food that had a label stating “may contain peanuts”? 

Dr Soteres: In general ,“no”.  Of course there are exceptions.

Dr Mahr: Age dependent again, but indeed the younger the child, the greater the risk of that contact getting into a mucous membrane (mouth or eye).

Dr Baswell: Yes, I would be concerned about contact reactions even if it was the ” may contain” labeling.

In the school environment, is there an age or a level of ‘milder allergy’ where you feel comfortable with a patient of yours being in a classroom with their allergen being eaten or being used in an art project or science experiment? 

Dr Soteres: As kids get older I expect them to be less messy with their foods and kids with food allergies become more savvy and better self-advocates. The art projects and science experiments make me a little more concerned.  In the past year there have been some nice studies that show some younger kids with allergy to say milk or egg seem to have a better chance of outgrowing their allergens if they tolerate the allergen in baked products AND continue to consume those products.

Dr Mahr: Art projects generally not until middle school, but even then I prefer no food allergen in an art project, even at that age, but again we try and not have food in the classroom.

Dr Baswell: I do have patients with milder food allergies that are manifested only by eczema on ingestion that I do not feel are at risk in a regular classroom. I would not want them to have contact with the offending food such as peanut butter in a science or art project so I would exempt them from this.

If a parent tells you that their child has had inhalant reactions to an allergen, is there any way for you to test for this level of an allergic reaction? For example, does a higher IgE to an allergen signify a higher likelihood of an inhalant reaction? 

Dr Soteres: There are not good studies or any test to really back up the claim that a child has had an inhalant reaction or that they are at risk for one.  We try to trust the parents’ judgment on this.  When the lab tests are high, then it supports the history as well.

Dr Mahr: Unfortunately IgE level does not correlate with sensitivity.

Dr Baswell: In general, this is rare and the usual cases are of reactions to aerosolized fish or shellfish at home or in a restaurant. I would expect their specific IgE to be significantly high. I   don’t do bronchial challenges for foods but there is some research on this. I would rely on their history of inhalant reactions and if this exists, their individualized health care plans would need to address this to prevent accidental exposures and to provide immediate treatment with EpiPens .

What have you suggested for school accommodations for your patients with reported inhalant reactions?   

Dr Soteres: We have a few situations where we have suggested an allergen free classroom.  My concern is that this can lead to a false sense of security. The main accommodation is to avoid contact and be prepared for a reaction when/if it occurs.

Dr Mahr: I think this is an area where a more personal directive is needed, rather than a global policy, as they are all so unique.

Dr Baswell: Avoidance!

Thank you to these three doctors who took their time for our Task Force. After extensive discussion about the responses, the Task Force decided that every child with food allergies needs to be looked at individually for the accommodations necessary for the child to enjoy equal access to the curriculum. It was certainly helpful to be aided by the medical standpoint however!

Food Allergies & Dating with Sloane Miller

Author Sloane Miller

Sloane Miller, food allergy advocate, author and life coach, is founder and President of Allergic Girl Resources, Inc., a consultancy devoted to food allergy awareness.  She consults with private clients, the healthcare, food and hospitality industries, government and not-for-profit advocacy organizations. Ms. Miller earned her Master of Social Work at the New York University’s Silver School of Social Work and her Master of Fine Arts in Writing and Literature at Bennington College. In 2006 she started Please Don’t Pass the Nuts, an award-winning blog for and about people affected by food allergies. In 2011, John Wiley & Sons published Ms. Miller’s first book, Allergic Girl: Adventures in Living Well With Food Allergies, the definitive how-to guide. Ms. Miller combines a lifetime of personal experience and passion with professional expertise to connect with people about how to live safely, effectively, and joyously with food allergies. You can find her at www.allergicgirl.com.

Sloane, can you please tell us what food allergies you manage and when you were diagnosed?

I have always been an allergic girl.  I have had food allergies since birth and I developed environmental allergies, eczema and asthma in early childhood.  I am also a social worker and writer.  In 2006, I became “Allergic Girl” and started the award-winning blog, Please Don’t Pass the Nuts, as a way to talk about food allergies.  I wanted to share my experience and connect with other people with food allergies; talk about what I was going through dining out, traveling, dating and working and the things I learned.

My work as a food allergy advocate—“Allergic Girl”—combines my commitment to helping people with my personal experience as someone with food allergies and my professional expertise as a social worker and writer.

What is your most recent experience with food allergen-related anaphylaxis? What were the circumstances and what did you learn from the experience?

My most recent anaphylactic experience was in 2009 after kissing a man I had been dating. Earlier that evening, we had gone over my allergens, my anaphylaxis action plan and where I kept my emergency medications. This was prescient. Later that evening, while kissing, I broke out in intense hives and started wheezing. He had eaten cashews earlier that day and, even though he had no proteins in his saliva, he had cashew nut dust in his beard. My reaction to that nut dust was swift and severe, but because we had discussed what we needed to do in an emergency, I were able to take care of the symptoms with his support and without further escalation.

The experience underscored that how vital is it to have and to know your anaphylaxis action plan, to have your emergency medications on hand in all circumstances and to communicate your needs clearly and concisely to others around you so they can support you.

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I love your book, “Allergic Girl: Adventures in Living Well with Food Allergies” especially the chapters about dating. What can you suggest to teenage girls and boys about how do you say “No” at that age to a good night kiss from a date who ate your allergen?!

Thank you! No one ever talks about food allergies and dating so I devoted a whole chapter just on that topic.

Truly, the best defense, as they say, is a good offense. Don’t wait and watch while someone you want to kiss eats your allergen then goes in for a big smooch! As difficult as it may be, speak up about what your needs are in a clear and factual way to your potential kissing partner. The last thing they’d want to do is hurt you!

Extra credit homework: It really helps to practice having this conversation. So, enlist a safe friend or parent to practice how to talk to your date about food allergies, your anaphylaxis plan, where your medications are and what you need to smooch safely.

As kids grow, they become involved with activities where the parents are no longer involved. How can parents prepare their teens and preteens for handling food allergies while away from home? Are there some ‘absolutes’ in terms of “You Must Do This…”?

Teaching a child learn self-advocacy skills can never start too early; alternatively it’s also never too late! Ideally, once your child has been diagnosed with food allergies, engage them with age-appropriate advocacy skill sets. For example, n=knowing exactly what their allergens are, how to speak up about their food allergy needs to an appropriate adult, identifying allergens, how to read labels and that you have to do it every time and most essential: knowing their personal anaphylaxis action plan and having access to emergency medications at all times.

As every child is different, go where your child is; for example, a shy child will advocate differently than a bold one.

How can parents prepare a child with food allergies with the steps to take in an ‘emergency’?

Once your child has been diagnosed with food allergies and you receive an anaphylaxis action plan from your board certified allergist, think of it as the beginning of an ongoing process and conversation. Like a fire drill, run through the steps of that anaphylaxis action plan and equally important, engage your child about what an “emergency” means. Explore with your child the possible scenarios, solutions and outcomes as well as their feelings, fears and concerns. With younger children, this conversation can happen with play or through art; with middle school and high school children let them lead you to the emotional place they need to go.

And keep practicing. At different life stages, fears, concerns, worries as well as strengths and accomplishments change. Remember, an anaphylaxis action plan is a live document and what constitutes an emergency is living conversation.

What are the key tools/rules you use to keep yourself safe?

I find for myself, my readers and my coaching clients that the best tool to create a safe environment where ever you are is to take your food allergies seriously and manage risk. What does this mean? See a board-certified allergist. Ask a lot of questions of your allergist so you will fully understand your diagnosis. Fill your prescriptions and always carry them with you; also know your anaphylaxis action plan. Communicate your food allergy needs to those a round you so they can help and support you. And, be patient with yourself. There will be mistakes.  Being prepared will help.

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Yep, that’s Morgan and Nicole with Sloane, whom we met in Chicago at last year’s FAAN conference in March 2012

Sloane and Morgan hit it off right away. It takes a food “allergic girl” to really understand a food “allergic boy”! They shared stories about managing food allergies in restaurants and school and more. It’s so wonderful for our kids to have great mentors like Sloane.

You’re probably also wondering…just how tall are Morgan and Nicole? Or is Sloane just a tiny little thing?! She is a ball of energy…and a tiny little thing next to the two of us!

Food Free Classrooms – Can You Imagine?

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Wouldn’t it be amazing if your child’s school removed all food from the classroom? Imagine what that would be like for those students with food allergies! You wouldn’t have to worry about a safe snack box; you wouldn’t have to worry about snacks at all! No birthday celebrations of cupcakes, no holiday celebrations of buffets of sweets, cookies and candies – no food at all!

There was a time, when my son was in elementary school, that such a thought was a pipe dream. Yet, there were other parents even then – 10 years ago – who thought like I did. Why is there so much food in school these days? When I was in school (back when the dinosaurs roamed, as my kids remind me), we ate at lunch time in the cafeteria. That was the only time food was allowed. Now, children get morning snacks in kindergarten. And they are only at school for 2 1/2 hours! How hungry can a child get in that amount of time? In my son’s high school, students can eat anything, anywhere, anytime. And they do! They eat and eat and eat. And sadly, most of the time, they don’t clean up after themselves, which causes even more issues for students with food allergies to have to deal with the mess that’s left over.

In 2006, as part of federal and state initiatives, our school district formed a wellness committee that looked at how much food is offered in school. We also looked at what kind of food was offered. Many of the teachers who were on the committee were blind to the fact that they gave candy as a reward for good behavior. Additionally, they used M&M’s or Skittles for counting and grouping in math. Food was used in science to “examine the chocolate chip cookie.” In art students would draw a box of Captain Crunch and then eat it. It became apparent to me why we have such an issue with obesity in this country! Food – and mainly unhealthy food – was being offered to my kids every day at school.

Getting food out of the classroom will assist with not only obesity, but also with the many medical conditions that students manage. A child with diabetes has to monitor their carbohydrate intake, and doesn’t need the constant barrage of candy that many teachers use to reward good behavior. Parents of children with ADHD, Crohn’s, and autism also wanted to have food removed from lessons. Additionally, parents made choices of their children being a vegan or vegetarian, and I found parents of these children to be of a similar mind to mine. Get food out of the classroom!

There are schools that have implemented “No food” rules. Here’s a short list of schools/school districts that have their policies listed on their websites.

Chatham, NJ school district

Guilford, CT public schools

 

Madison, CT public schools:   Go to Section 5120.3.4 called “Managing Food Allergies”. Look for #14 in the School Responsibilities.

Pottsgrove School District, Pottstown, PA

 

Howard County, MD public schools: See page 2 of the School’s responsibilities

Great Neck, NY public schools

Robert C. Hill Elementary School, Romeoville, IL

 

I’m sure there are more out there, but these are the school districts that have it in writing on their website.

I’ve been beating this “No Food in the Classroom” drum for 10 years now. This past Halloween, our school district had two elementary school students, at two different schools, go into anaphylaxis during Halloween parties. Thankfully, both students had EpiPens at school which were administered and they survived. Both incidents involved snacks being brought into the classroom by another well-meaning parent for the party. One snack had “may contain peanuts” written very small – and sadly everyone missed that statement on the label. The other snack was homemade cupcakes and included tiny crumbles of Reeses peanut butter cups on top of the frosting. That mother was supposed to bring in pretzels and thought she was doing a good thing to make homemade cupcakes.

After these two frightening incidents, our school district is progressing toward food free party celebrations. The district has been given the grace of a warning. I really hope they heed the warning and remove food from classroom parties, at the very least. I understand that there are those students who medically need to have snacks during the day and that can certainly be managed on an individual basis. My hope is that one day, schools will move back toward when the dinosaurs were roaming, and all students will eat in the cafeteria ONLY!

Stock Epinephrine bills in many state legislatures!

Many state legislatures are currently hearing testimony about “stock epi” bills, which will benefit school children with diagnosed food allergies, and those who haven’t yet been diagnosed. Several states, including Virginia, California, Georgia, Illinois, Kansas, Missouri, Nebraska, and New York, already have stock epinephrine laws in place.

Colorado HB 13-1171, concerning the use of auto-injectors in emergency situations in school settings, has recently been passed by the House Public Health Care & Human Services Committee  by a vote of 11-2. We have a long way to go to get it through the House and then through the Senate before the legislative year ends in May 2013, but it is a good start!

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More than two dozen states have either introduced legislation or are very close to doing so this year regarding stock epinephrine in schools. Some of the legislation allows for voluntary compliance, while others are mandating stock epinephrine in every school in the state.

What is stock epinephrine? It allows a school (generally defined as K-12, public and private) to have an epinephrine device (either EpiPen or the new Auvi-Q) that is non-student-specific. Stock epinephrine can be used in anaphylactic emergencies at schools for students who do not have epinephrine auto-injectors on campus. A student may have a diagnosed food allergy, or may not.

What are the benefits of this legislation? There have been at least two deaths in the last 18 months where a child had a severe allergic reaction at school and did not have epinephrine prescribed for them. If the school had a stock epinephrine device, these children could have received a dose while 911 was being called. The hope is that a school nurse, or a nurse’s designee, would be able to administer the epinephrine after noting the allergic reaction. In other words, lives would be saved!

Most doctors and allergists that I know are in favor of this legislation, as is the National Association of School Nurses.

What are the potential issues with the legislation? For those states where school nurses are handling thousands of students across several campuses, there are designees  assigned under the nurse’s  license to carry out doctor orders. Therefore, you could have an issue of a non-medically trained school secretary attempting to determine whether a child’s stomach ache is from the flu or the beginning of an allergic reaction. While epinephrine shouldn’t cause any harm to most people, giving the shot unnecessarily certainly isn’t what any school district wants to happen because of potential liability.

The other issue is the cost of the epinephrine devices that generally expire after one year. Most schools are woefully underfunded and spending $250 per 2-pack for an epinephrine auto-injector for every school every year adds up quickly. The expense is the biggest issue I’ve been hearing about in my school district that overall supports the legislation.

The last issue that I heard was brought up by a Colorado parent of two children with food allergies. She was concerned that cash-strapped parents may assume that if this legislation passes in our state that the child’s school will always have an extra epinephrine auto-injector on hand. Therefore, parents may not spend the money to send in an extra EpiPen or Auvi-Q to school with their child, only to find out that the school doesn’t have the money either!

I think a voluntary stock epinephrine law is preferable to a mandatory law because of the current fiscal environment. That will also allow individual school districts and schools to determine what is right for them. Check out your state legislature to see where you can help – testify, send emails, and get involved with this legislation!

 

Should your child’s school district have a Food Allergy Task Force?

We have one, and it’s the greatest group of advocates our school district has ever had to increase education and awareness of food allergies, and to keep children with life-threatening food allergies safe at school.

Life Before the Task Force

Before our task force was created, each parent of a child with food allergies had to train the teacher and school administrators about food allergies and what accommodations would be necessary to keep their individual child safe. In a district of over 23,000 students, we had almost 300 students with food allergies in 2007 when the Task Force was created. Today, in 2013, there are over 600 students with food allergies in our school district. The number continues to increase every year.

Each school was trying to develop its own set of best practices, yet there was no systematic way to share information about successes and challenges from one school in the district to another. Each time a new student with food allergies showed up at a school, there was another reinvention of the wheel.

How the Task Force Came into Existence

Some parents of children with food allergies became frustrated and sent letters and e-mails to the superintendent and school board, asking that a standard set of guidelines be developed to assist every school in our district to appropriately manage food allergies. Our school district, Academy District 20 in Colorado Springs, Colorado, formed a Food Allergy Task Force in response to these concerns. The school district’s superintendent supported and encouraged the group’s work.

Who’s Part of the Task Force?

Founding members included three principals (one from each level), five parents, a school nurse, the food services director, the district Section 504 coordinator, the director for legal relations and the chief operating officer. It was important to include all of these stakeholders to ensure that information was gathered to create complete guidelines for a child in the classroom, on the school bus and in the cafeteria – to name just a few. Since the group formed, others have joined, including a local physician specializing in treating children with severe allergies and asthma, three parents and two more school nurses. Members come and go depending upon new topics that come up in our school district and/or state. More and more school nurses attend the meetings over the years, since they continue to be faced with managing the treatment plans of more and more children with food allergies!

What the Task Force Does

Our Task Force submitted recommendations to the superintendent for policy revisions and guidelines for protecting children with severe allergies. Those guidelines were implemented by all schools in the district the following year. (You can review these guidelines here.)

This implementation effort involved collaboration and cooperation between school administrators and school nurses. Nurses train all district staff (including bus drivers, cafeteria staff, teachers, etc) on how to recognize symptoms of anaphylaxis and how to administer an epinephrine autoinjector.

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The Task Force continues to meet approximately two to three times a year to evaluate how things are going in our schools and to provide support to members. The success of our Task Force in creating guidelines was used as a foundation for The Colorado Schoolchildren’s Asthma and Anaphylaxis Act of 2009. This act requires the Colorado State Board of Education to promulgate rules for the management of food allergies and anaphylaxis among students enrolled in public and charter schools in the state.

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The Task Force hosted a Food Allergy Summit promoting awareness of life-threatening allergies and asthma in both 2010 and again in 2012. The keynote speaker in 2010 was a physician in internal medicine, allergy and immunology, who is also an Anaphylaxis Community Expert (ACE). A panel discussion followed his remarks, providing perspectives from two students, one elementary and one high school, a principal and two teachers, a school nurse, a school attorney, the food services director, and a parent on how to keep severely allergic children safe in school.

More than 120 parents and students attended and the task force is committed to continuing efforts to raise awareness about the need to protect children with severe, life-threatening allergies in our schools.

In 2012, the Food Allergy Summit included information about the psychological impacts of food allergies and helped students with food allergies learn how to self-advocate with a question and answer session for them to practice with difficult situations presented for them to resolve. Students got to meet other kids “just like me” and parents were able to meet with other families facing similar challenges and successes.

Our school district was the first to create a Food Allergy Task Force. Since then, there have been at least two other districts in Colorado that have also created one. The result: more children with life-threatening food allergies are safe at school! Will your district be next?

 

AllergicChild.com & Food Free Valentine’s Day Parties

Valentine’s Day is traditionally a day of chocolates and candies in celebration of the day. Too many of my son, Morgan’s, school parties were laden with treats. I rarely looked forward to helping plan the party.

There are so many ways to celebrate Valentine’s Day without food – or at least with safe foods for everyone! Here’s some ideas to help you plan a great safe party for all kids. Many of these ideas came from readers on our Facebook page here.

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  1. Beading friendship bracelets
  2. Beading keychains
  3. Bingo
  4. Card-making party and exchange
  5. Balloon games (if no latex allergies)
  6. Fruit kabobs (check for allergies first)
  7. Pin the heart on Cupid
  8. Bowling for hearts
  9. Decorate a picture frame for parents
  10. Minute to Win it games
  11. Musical chairs
  12. Freeze dance

Morgan says: Well, Valentine’s Day has been a very interesting experience, especially with school. Let’s go with what worked first. In third grade, my teacher asked that all the Valentine boxes be put in the hallway. That definitely worked, so that there would be no problems with M&M’s and various other candies that were brought in with the Valentine cards. My fourth grade teacher asked that no candy be brought in, and said that she would supply safe candy. This definitely worked. We had a dance that year during the school day and everyone dressed up. It was great!

In fifth grade, my teacher asked that no candy be brought in and she would supply none either. She was tired of all the sweets brought into school.

What didn’t work? In second grade, a kid brought in peanut M&M’s as treats with his cards. That did not go over well. He was Chinese and knew only a little English though so that was technically a misunderstanding. He brought in his cards early, so my teacher was able to send the candy and the cards home and ask his parents to help him bring in something safe.

In 6th grade, I wasn’t in school on Valentine’s Day because it was a teacher workday in our district. Our classrooms didn’t have any parties. Students could sign up for a candy stick to be sent to a ‘special someone.’ I didn’t sign up for one or receive one. In 7th and 8th grade, this candy stick event didn’t go. Nothing really happened for Valentine’s Day, besides a hat day or a fundraising event.

In high school, there are no classroom parties for Valentine’s Day nor is there anything to purchase to send to someone.

Overall, it’s a great opportunity for food allergic children to practice self-advocacy.

Back to Mom:

Isn’t it amazing how many holidays and celebrations involve food? We never realized how much food is a part of the American culture until we had a child with food allergies. With Valentine’s Day we had to always be mindful of the various ways that our son could come in contact with his allergens.

Many children at our son’s elementary school brought in candy along with Valentine’s Day cards. Yearly, we reminded our son and his teacher to watch for unsafe candy coming into the classroom. It’s always best to prepare for such prior to the event occurring and to ensure your child’s teacher knows what to do!

We’ve found that many candies are not safe for the peanut, nut or milk allergic. Reminding teachers to ask students to bring in safe treats, or none at all increases awareness of food allergies when students and parents may not remember. One year when my son was in preschool, a parent was asked by the teacher to please bring in safe candies, upon which she commented, “you mean he’s still allergic?” Yes! Every day of the year, he’s still allergic!

We hope that you can enjoy Valentine’s Day this year safely and maybe without food being part of the celebration at school!

Court cases define Food Allergy as a Disability

Recent court settlements have determined that a child or student’s food allergy is a disability. While I would have cringed several years ago to think that my son has a disability, I now see this as welcome news!

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Here are the details of the first lawsuit: A lawsuit was filed by Shannon Knudson against Tiger Tots Community Care Center after they refused to accept her daughter with tree nut allergies in to their care because they feared liability. Ms. Knudson claimed that the daycare was discriminating against her daughter and should be forced to accommodate her. The ruling won on appeal, overturning a lower court’s opinion which said that the daycare had the right to refuse a child whose care would be extraordinarily burdensome. The Iowa appeals court disagreed. They said the child’s allergy is a disability and must be accommodated under the American Disabilities Act. More information about this ruling can be found here.

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The other settlement was between the Department of Justice and Lesley University, a private non-profit institution of approximately 8,000 students in Cambridge, Massachusetts. The Lesley settlement stemmed from a student complaint in October 2009, which alleged that the university violated ADA (American with Disabilities Act) by neither addressing the needs of students with food allergies nor ensuring them an equivalent dining experience. Under the settlement terms, Lesley – and presumably, other institutions that want to stay in line with ADA – must do more than simply provide gluten- and allergen-free options in its cafeterias. It must also develop individualized meal plans for students with food allergies and allow them to preorder meals; provide a dedicated space in its main dining hall to store and prepare foods to avoid cross-contamination; display notices concerning food allergies and identify foods that contain specific allergens; train food service and staff about food allergies; and try to retain vendors that offer food without allergens. More information about this settlement can be found here.

Both of these institutions – Tiger Tots Community Care Center and  Lesley University – are NOT K-12 schools required to provide FAPE – Free Appropriate Public Education. Therefore, these rulings have really changed the landscape for day care centers and colleges. The fact that Lesley University is a private institution means that the Department of Justice oversees them, rather than the Office of Civil Rights. However, the ADA rules still apply. The rulings have determined that in these cases, food allergies are a disability. Why is that a good thing for your child?

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First let me say that when I look at my son, Morgan, I don’t see a disabled child. I see my wonderful son, who has a hidden disability. The question that has to be answered in regard to a disability is: Does a child’s impairment substantially limit one or more major life activities defined by the ADA Amendments Act of 2008 ? An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. And for school and college, that definition of a ‘disability’ works for us because my son does need accommodations in order to remain safe and to have equal access to the curriculum.

Gone are the days when a child with food allergies is seen as an imposition in a school or day care. It’s not up to parents to beg and plead for a safe classroom, hoping that some kind-hearted administrator will ‘get it.’ We have the law on our side, and it comes in the form of allowing the classification of our children’s life threatening food allergies as a ‘disability.’

 

 

 

Food Allergy Anaphylaxis – A Tragedy

Some children will have mild reactions to eating a food they are allergic to. They may experience watery eyes, a runny nose or hives, and then quickly recover with a dose of Benadryl®. Still others may vomit and immediately feel better. Other children will experience anaphylaxis, the most severe of allergic reactions and end up in the emergency room receiving shots of epinephrine. Tragically, some children will die.

This is a picture of Sabrina Shannon, a 13 year old Canadian girl when she died at school from anaphylaxis to dairy in 2003. Sabrina’s mother, Sara, has become one of the most renowned advocates of food allergy guidelines in schools to help children with food allergies stay safe. I’ve met Sara, and to say that she is wonderful doesn’t begin to explain her fortitude. I can’t imagine becoming an advocate at the level that she has – and she lost her only child. She understands how serious anaphylaxis is. Now, she just needs to impress that upon the rest of the world.

Friends and family couldn’t understand how vigilant we needed to be when our son, Morgan, was diagnosed with food allergies. How can anyone die from eating one bite of a food? Is it really necessary to read EVERY label of EVERY food that is eaten? We heard these questions and more: Why can’t your child eat the cake I made for the birthday party? Won’t he grow out of his severe food allergies?

It is estimated that five Americans die each day from anaphylaxis (from allergic reactions to medicines, food and/or insect stings). Tens of thousands of emergency room visits occur each year from anaphylaxis.

The most recent tragedy involved a 15 year old British boy who died after eating what he thought was a safe carry out meal at a restaurant. You can read about that story here.

Accidents occur, and for the food allergic child, such an accident can cause death. It is the reality of what we live with daily. We try to not focus on this; instead we try to gain an understanding of what we can learn from these tragedies. This is a preventable death, and our family does everything we can to stay safe and enjoy life.

In the April 2007 “Journal of Allergy & Clinical Immunology” research was submitted on the deaths of 31 individuals who suffered fatal anaphylaxis. Peanuts accounted for 17 of the deaths (55%); tree nuts caused 8; milk caused 4; and shrimp 2.  Epinephrine availability is a key factor in the cause of death with only 4 of the fatalities having received epinephrine in a timely fashion.

What can be learned from these tragedies for those of us with food allergic children?

It seems to me that education and awareness are the footwork that is available to us all. The more people are aware that my son has severe, life threatening food allergies, the better the chance that he will not experience anaphylaxis. Telling family members, friends, teachers, etc., about his food allergies is necessary so that they realize what they eat could potentially impact him.

Secondly, my son needs to be his own advocate. I hope that impressing a teenage girl won’t scramble his brain to the point that he forgets what he’s allergic to now that he’s a teenager! Learning at a young age how to advocate for his safety was something we worked on daily. Lastly, our allergist has told us that children with a dual diagnosis of asthma and food allergies have much more likelihood to experience anaphylaxis. For that reason, more precautions will have to be practiced. For better or worse, my son will have to know what his date ate for dinner, and maybe even for lunch!

Dr. David Fleischer, an Allergist & Immunologist at National Jewish Hospital in Denver, told Morgan and I that Morgan could have a reaction to kissing a girl if she ate one of his allergens within the previous 2 hours. She could mitigate this issue by not eating the particular food (best choice!) or by eating some other food or brushing her teeth to remove the allergen.

Various research has shown that teenagers are the highest risk group for fatalities from allergic reactions. Teenagers, in general, tend to believe they are invincible, and are more likely to take risks. When it comes to food allergies, they are less likely to have an EpiPen immediately available, and are no longer under the watchful and careful eye of their parents. Only 61% of teens reported always carrying their EpiPen in a “Risk Taking Study” by Dr. Hugh Sampson of Mt. Sinai Hospital.  In our house, we want 100% compliance with EpiPen carrying!

Food allergy reactions are extremely serious. I want to give my son every chance to learn from others, be a good advocate and enjoy life … while always carrying his two EpiPens!

Marriage, Divorce and Children with Food Allergies

If you have a child with life threatening food allergies, I’m sure you know how stressful daily living can be and how difficult it is to keep your marriage healthy and happy in the middle of all that stress. My husband, Bob, and I wrote about the Emotional Aspects of Food Allergy on Marriage in a previous blog post here.

If you’re beyond the point of staying in your marriage, my interview with Elizabeth Goldenberg is below. Elizabeth Goldenberg is the Founder and President of Onespot Allergy, a blog and retail site dedicated to food allergy safety and legal issues since 2009. She is also President of EpiCenter Medical Inc, co-founded in 2012 with Toronto Allergist Dr. Mark Greenwald, which focuses on access to epinephrine and anaphylaxis first aid training.

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Hello Elizabeth. Not only are you a divorce attorney, but also the Founder of Onespot Allergy. Can you tell us a little information about both of these careers?
I’ve been a divorce lawyer for 20 years, and I’ve practiced as a sole practitioner for my entire career. I’m actually very well suited for that work and extremely effective at it. When my younger son with diagnosed with severe food allergies eight years ago, after I learned how to keep him safe, I had a business idea. I held onto that idea for several years, then finally gave myself permission to start Onespot Allergy. I know too many people who refused business opportunities because they were afraid to take a risk, and I didn’t want to be one of them. I now spend only 20% or my time practising law. In the new year, I may cut back my practice even more because I’ve partnered with a Toronto Allergist, and we’re launching two new allergy safety products.

What food allergies does your son have and how old is he?

I have two sons, Aaron and Jacob. Aaron has no food allergies, and Jacob is severely allergic to peanuts and tree nuts. Jacob is now ten years old, and he’s doing very well.

Not having ever experienced divorce, what issues are you seeing regarding children with food allergies when a divorce occurs?

I’ve represented 817 divorcing spouses (but who’s counting). I ask every parent during the intake interview if their children have any special needs. Given that 1 in 13 children has food allergies, I should have seen over 100 parents of children with food allergies. Until very recently, no one raised food allergies as a concern. I suspect they don’t think of food allergies as a special need, and now that you’ve caused me to reflect on this, I will revise my intake interview to include a more specific question.

I was consulted on only one case where a child’s anaphylactic food allergies were the main issue inhibiting access to the child by his father. In that case, the father wanted to take the child on extended trips and to family events, but he’d never learned how to choose or prepare safe food for his son, how to inform caterers and hosts of his son’s special dietary needs, how to avoid accidental exposure, or how to recognize anaphylaxis. He knew how to use an EpiPen, but without avoidance training and the ability to recognize anaphylaxis, that wasn’t satisfactory. During one anaphylactic episode that occurred while he was having access, he left the emergency department and drove his son home while the poor child was still unconscious. Understandably, the mother had deep concerns about his most recent request to travel with the child to attend a wedding and related events. She proposed to escort the child and attend to most of his needs while letting the child attend the events without her, but the father applied to Court, since he wanted his son to make the trip alone.

What can parents who are divorcing do better to take care of their food allergic child?

A certain amount of chaos develops upon separation, as each spouse adjusts to parenting alone. Sometimes the children’s needs aren’t taken care of as effectively, for example, notes from the school don’t get shown to both parents, homework or backpacks might be left at the other parent’s house when needed for school, and permission forms might not get signed. There’s just general confusion as the dust settles.

A child with food allergies can’t afford any mistakes to happen when it comes to his or her allergy management. As much attention as prior to separation needs to be given to his or her food safety, avoidance measures at home and at school, medical forms for the school, training of teachers to recognize and treat anaphylaxis, and having EpiPens always in reach. I recommend that children always wear two EpiPens or at least one in an EpiPen belt, rather than keeping them in a backpack or loose, since they can easily be left behind. That belt must stay on the child and move with the child between each parent’s home and school, since if it’s misplaced and a reaction occurs, there can be deadly consequences. Putting the allergic child’s needs first and staying completely focused on carrying them out during separation and divorce is the key.

In relation to custody issues do the courts view children with food allergies any differently than non-allergic children?

In my jurisdiction, custody and access decisions are based on the “best interests of the child.” You use the facts of a case to make arguments in support of your client’s position, and food allergies could definitely form part of your argument and influence a decision for custody or access to that child.

Having sole custody means that you have sole decision making power. Parents may not be able to make decisions together as joint custodial parents, if one parent is uneducated or negligent about food allergies. Access to a child can be completely unrestricted, have terms attached to it, or even be supervised. If a child were repeatedly exposed to his or her allergen by an access parent, you would want to attach terms to the Order. Examples would be providing that the child must only eat food supplied from the custodial parent’s home, that the child must be in the care of the access parent the entire time (no babysitters or only approved babysitters), that EpiPens must be kept with the child at all times, or that access occur only within a reasonable distance from a major medical center.

Have custody cases been decided based upon which parent understands food allergies better? Or which parent can provide a safer home?

Definitely. The case I described involving a trip for a family event was decided completely upon the father’s lack of understanding of food allergies, and his motion to the Court was unsuccessful. Every custody case is decided upon the child’s best interests, and an aspect of that is which parent can provide a safer home. The facts surrounding each parent’s food allergy management skills would be one factor to be considered.

How is ensuring that your child’s food allergies are properly managed by your ex-spouse different from going to the extreme and being accused of Parental Alienation Syndrome?

Typically for any serious allegation affecting custody or access, like allergy negligence or excessive drinking, the spouse would have documented concerns from prior to separation and there would be ongoing incidents after separation. I would ensure that anything you’re alleging is well documented, preferably by doctors, rather than relatives swearing supporting Affidavits. When there’s a clear trail like that to follow, rather than allegations arising only after separation, a parental alienation argument would not be successful. After so many years of divorce cases, I’ve never had a client accused of parental alienation, so it’s a stretch for me to imagine food allergy concerns being used to support that argument.

Is there anything else you would like to add?

I want to thank you for this opportunity to weave my legal experience into my work as an allergy advocate. I thought my career was taking a 180 degree turn from law when I started Onespot Allergy, and it’s lovely to contribute where law and allergy intersect, bringing my passion for allergy safety full circle into my work as a lawyer.

Thank you Elizabeth!

Pumpkin Bread – Nut, Peanut, Dairy & Soy Free!

This is a food allergy favorite recipe of ours – especially at this time of year! You can also make it egg and/or wheat free by substituting safe egg replacer or a gluten-free flour mix.

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Pumpkin Bread – makes 2 loaves

Grease bottoms only of two 9x5x3 loaf pans with safe butter or our favorite – canola oil.

Mix together:

3 1/2 c. flour

2 teaspoon baking soda

1/2 teaspoon baking powder

1 1/2 teaspoon salt

2 teaspoons pumpkin pie seasoning  – and set aside.

3 cups sugar

1 cup vegetable oil

4 eggs

1-15 ounce can of pumpkin

Directions: Beat eggs. Add sugar and oil and beat.

Add pumpkin to the mixture and beat again. Add dry ingredients. Beat until smooth, not lumpy.

Bake for one hour at 350 degrees. Allow to cool prior to removing from baking pan and slicing.

Eat and enjoy! It’s especially good with a cup of (safe) hot chocolate – with marshmallows of course.

 

Becoming Part of a Food Allergy Support Group

I have found it really helpful to be part of a local support group of food allergy families. Our local group is called MOSAIC – Mothers of Severely Allergic Infants and Children in Colorado Springs, Colorado. There’s a very active MOSAIC group in Denver, Colorado which has been meeting for several years. Our group in Colorado Springs is newer, but we continue to grow and to have great meetings.

It’s great to have other food allergic parents to talk to about schools, local grocery stores and local laws. In fact, our group had a paramedic come to one of our meetings and tell us what would occur should one of our children go into anaphylaxis.

A local allergist and I started the MOSAIC group here by contacting as many people as we knew who have food allergies in their family. Then, he continued to give the information to his patients as they were diagnosed. The group has continued to grow from there. Other allergists in town now participate in the group and give out flyers to their patients. We’ve had several discussions about accommodations for food allergies in school. We’ve also discussed Eosinophilic Esophagitis, nutrition for children with food allergies, the emotional aspects of food allergies – the list goes on and on!

If you are a member of a support group, please let me know and I’ll send you an AllergicChild brochure for FREE via email to pass out to your members. If there’s no support group in your area, maybe you should start one! Speak with your allergist about other families in your area who have food allergic children, and start from there.

Some support groups combine efforts to get legislation passed in their state. The picture above shows several Colorado support group leaders with their children watching while then Colorado Governor Ritter signs into law the COLORADO SCHOOL CHILDREN’S FOOD ALLERGY AND ANAPHYLAXIS MANAGEMENT ACT. Since meeting through the process of getting this legislation signed, the Colorado support group leaders meet once a year to discuss food allergy issues and initiatives in the state. It’s a great group of advocates, and lifelong friendships have transpired.

Our statewide support group leaders also help to run booths at the  FAAN (Food Allergy & Anaphylaxis Network) walk. There’s no end to what several concerned parents can do!

Thanksgiving and Food Allergy Safety

The Thanksgiving holiday is almost upon us, and if you’re like us food allergies can take center stage! This can be a wonderful time of joy and sharing time with friends and extended family members. It can also be a stressful time worrying about what your child eats or what food is being served!

A plan of action before the day is a must.

We have spent Thanksgiving Day at home and at the home of relatives. I’ve found myself being more comfortable in the safety of our home because I know what foods have been made in the kitchen. If your child has pet allergies in addition to food allergies, as our son does, then all celebrations need to occur in a safe location. For years, that was at our house, because all the relatives had dogs or cats.

When we do go out of town, we have rented a condominium that is pet and smoke free, and then we invite the relatives there. If you don’t have these multiple limitations, you can still choose a safe location where the food can be monitored in its preparation. This might end up being at your house to ensure no cross-contamination issues.

Plan for the food.

We have found that it works best if we give our relatives a list of food items that our son cannot eat. We have explained to them the seriousness of the potential reaction, and that he cannot even touch peanuts, tree nuts, sesame seeds, fish and shellfish. I can tell you that the best laid plans still aren’t followed in the cases of some families like ours! At times like this, we’ve found that it’s best to get out of their kitchen, and carefully monitor our son’s whereabouts. If possible, we remove the offending food item, especially if it won’t seriously damage the family relationships.

Make sure that you read all labels of any store-bought products.

Natural flavors can include almost anything. Call the product manufacturer prior to the day of Thanksgiving to ensure the product is safe. Waiting until the day of Thanksgiving will be too late, since most manufacturers are closed for the holiday! For home baked items we’ve found it’s best to make them ourselves. There’s always a chance of a peanut butter sandwich being in the kitchen while the other food items are prepared at someone else’s house. Where we would be careful about such a chance of cross-contact, people unaware and inexperienced with food allergies wouldn’t necessarily take such a precaution.

Traveling with Food Allergies

Traveling by car is easier than traveling by plane, especially if you plan on bringing safe foods from home. We’ve traveled many times by car, and brought a cooler of food. I’ve even heard of some families traveling with a refrigerator and microwave to ensure safe meals for a long road trip! Some airlines will announce a peanut-free flight; however I’ve heard from many families that giving the airlines the information about your child’s peanut allergies at the time of reservations doesn’t necessarily mean the flight will be peanut-free when you arrive at the airport. Various airlines have information on their websites stating they are peanut-free, yet I’ve seen these exact airlines serve nut and peanut products!

Find out what is being served on the flight when you make a reservation and request a peanut-free flight. Then be prepared to speak with the ticket agent and others when you arrive at the airport. Bring hand wipes, and even a twin sized sheet to put on the airline seat to protect your child from having any contact reaction. Traveling in the morning is better because the planes tend to be cleaner. Let the flight attendant know about your child’s food allergies. With so many people bringing food onto airline flights today, there’s a high likelihood that someone will bring on peanuts or nuts to eat while in flight. You may be able to change seats should that someone be seated right next to you! The flight attendant may also be willing to announce a peanut-free flight over the loudspeaker, or provide a 3 row buffer zone in front of and behind you.

My son and I have flown Southwest Airlines for the past several years, and have had very good experiences overall. While other flights are served peanuts, our flight is not. When we purchase the tickets online, there’s an area to mark a disability. Peanut dust allergy is listed in this area. When we arrive at the airport, my son is given a pre-boarding pass which allows us to pre-board the plane, wipe down his seat, tray table and surrounding area. He has never had an issue with any peanut residue left from previous flights, but if your child is HIGHLY sensitive this airline may not be your best choice.

Plan for the fun.

We try to focus as much on non-food fun for our son’s sake so that the entire holiday doesn’t end up being a long list of don’ts. We take a walk, play board games, and play cards. We make sure that every visitor is aware of our son’s allergies so that they can protect him from harm. Morgan’s allergies were better understood by the other children in the family– almost more than the adults – when he was young! The children wanted Morgan to be a part of the fun, so they were careful about their food choices.

We have more information about traveling and eating out with food allergies click here

Let me know what has worked for you on Thanksgiving by emailing me – Nicole at AllergicChild.com .

Interview with Susan Weissman, Author of Feeding Eden & her son, Eden

Susan Weissman is the author of Feeding Eden: The Trials and Triumphs of a Food Allergy Family, a mother’s story of her son’s childhood food allergies and the life of her family.  Susan was a middle-school English teacher before turning to writing full-time. She writes for The Huffington Post and Psychology Today, has contributed to Parent & Child, Allergic Living, and various sites on the topic of allergies and parenting. She was a PBS Parent Expert. Susan holds an M.Ed and is committed to strengthening the relationship between teachers and parents, and providing information to expand awareness around an issue that affects so many of us. Her son, Eden, is now almost 10 years old.

Susan, what made you decide to write Feeding Eden: The Trials and Triumphs of a Food Allergy Family?
Like so many other food allergy parents, I felt that with all we had gone through, there had to be a way to make some sense out of what was happening, and maybe help others.  After I started, and I began to achieve some rhythm with the project, I raised my sights a bit.  I decided I wanted food allergies families to know that they were not alone. And I wanted families, teachers, grandparents, even doctors and nurses, to understand what the food allergy life feels like for us.

What I wasn’t quite prepared for after Feeding Eden was published was that so many parents would reach out to tell me that they felt like they were reading the story of their allergic family and their parenting experiences.

For parents reading this interview, what hope or suggestions can you give those newly diagnosed or still struggling to get an accurate diagnosis?
I’d say that parents should have hope and optimism as they help their children navigate their allergic condition but they must have the right doctor and accurate diagnosis. The first step: make sure parents and their doctors are communicating clearly about tests results and what I call “food history.” This is the key to defining an allergic child’s medical needs. In the first chapter of my book, titled Searching For a Savior, I describe how I bounced between specialists like a ping-pong ball, waiting for one of them to “save” Eden from his symptoms. The problem was that I needed to find an allergist whose treatment I could both understand and implement.

You mention in your book attending a support group meeting. Do you still participate in one? What value do you find for parents managing food allergies in attending support groups?
I do still participate because there is always something to learn and share. The great thing about a food allergy support group is that even if you don’t feel like sharing your personal concerns or questions (for example – how your mother-in-law just “doesn’t get it” or how hard it is to convince your teenager to wear their medical ID bracelet) simply listening to the other parents’ stories helps everyone. Time and again, I’ve been in an unfamiliar situation with Eden, and I’ll think back to other parents’ suggestions. It’s a great way to learn about resources in your community, vent frustrations in a safe environment and learn about the latest food allergy research and treatment progress. And it’s a way to “give back” even to people who don’t read the book.

Do you have plans for an additional book?

Right now, my focus is on bringing Feeding Eden into schools and family communities all around the country.

Do you have a blog (or somewhere else on the Internet that you write?)
Yes. I write at www.susanweissman.com On my site, I have a blog where I post on topics of interest to all parents, including allergy friendly recipes and food ideas. I also contribute to The Huffington Post, Psychology Today and a site called Asthma Allergies Children, among others.


Eden, thank you for being willing to answer some questions for our readers.
Are you old enough now to carry your EpiPen at school? What about on the weekends or when you and your family go out – who carries your EpiPen?
No, I don’t carry my EpiPen at school. I have two emergency kits, one is with the teachers and the other one is with the nurse. On the weekends my parents carry it. Or whoever I’m with.

I have a lot of readers who have preschool age children with food allergies. What can you suggest for these kids with food allergies when someone offers them food to eat?
I don’t think I’ve been offered food I’m allergic to at school, even pre-school, really since everybody knows I’m allergic before the school year starts. Once in a after school class a PE teacher told everyone they could have a cookie that I knew wasn’t safe so I just didn’t take one. But if they can maybe they should say, “I have food allergies. Do you know what is in the food?” That’s what I say to anyone who offers me food and I’m not sure. Then I read the label too.

Eden, when you go out Trick-or-Treating for Halloween, how do you manage your food allergies?

I go out Trick-Or-Treating I try to take safe stuff, but there usually isn’t a lot.

Does your family have any “rules” about the candy that’s brought into your home later?

If something isn’t safe in my bag I give it to my sister and my dad. I don’t really care about the candy. It’s gets annoying that I don’t have as much to eat but I just like the fun of trick or treating.

Do you know what you’re going to dress up as this Halloween?

A Dark Sorcerer

Thank you Susan and Eden!