Category Archives: School & Food Allergies

A School District Food Allergy Thank You!

Some of you may think that you live in the best school district for managing food allergies. Some of you may think you live in the worst! For us, we KNOW we live in the best district! Many of you have heard me speak about how wonderful our district has been about providing 504 Plans, guidelines, policy and most of all care for food allergy students.

Since Morgan recently graduated, we thought it was time to give Academy School District 20 a formal thank you tonight by attending the school board meeting.

Here’s a part of what I shared:

Our story for tonight begins in 1999, when we began looking for a preschool for Morgan. No private preschool in Colorado Springs would accept him as a student because of his life threatening food allergies. They didn’t want to take on the liability. I was heartbroken, and I didn’t know where to turn.

I approached the District 20 preschool and explained his severe food allergies to the teacher, Miss Linda. When I explained that she would need to keep his allergens out of the classroom and learn to administer an EpiPen, she stated “That’s It?” I can’t tell you the relief I felt. Morgan enjoyed two years of preschool there before attending Foothills Elementary school for kindergarten. That’s when the real challenge began.

There have been so many teachers, counselors, school nurses, custodians, bus drivers and staff members who have been willing to learn about food allergies, and to help Morgan stay safe at school. It would be impossible to thank all of them, but we are so appreciative for how wonderful the D20 teachers and staff have been to keep Morgan safe and included.

There is one Administrator at the district level that we have to thank.  The Director of Legal Relations has been instrumental with the creation and ongoing efforts of the Food Allergy Task Force which began in 2007. This committee has spawned similar groups in school districts across Colorado. The creation of guidelines for severely allergic students in our district was used as a basis for policy at the state level in 2009 when legislation was introduced and passed. District 20 has always been on the forefront in education, and your support for guidelines and policy to keep children with food allergies safe continues that stance.

Morgan never had an allergic reaction at school, and that was due to the incredible teachers, staff and administrators in District 20. 

Here’s part of what Morgan shared:

I’d like to directly thank two individuals who are also here this evening. First, my elementary school counselor. When I first entered elementary school, there weren’t any procedures or policies to deal with food allergies. She had the foresight to put me on a 504 plan that provided accommodations for me to safely attend school and be included – a plan I kept even through my Senior year of high school.  

Second, I would like to also thank my Principal at Foothills Elementary, for being my champion. She took a hard line and kept a strong policy with parents who didn’t want to abide by classroom accommodations, like an allergen-free classroom. Some of these parents, as I’m told, were particularly vicious, but she kept her stance that school needs to be safe for all children to attend, and I would like to thank her for that. 

But finally, I would like to thank you, all of you. You have created one of the kindest, most open and accommodating school districts in the nation. I cannot express my gratitude for your willingness to help me and other food allergic students in this district. Many other children are not as fortunate to have such welcoming attitudes; they face obstacles on a day-to-day basis, and their parents fight teachers, principals, school boards, and even superintendents to keep kids safe.

Thank you. Genuinely, thank you for 15 wonderful years. I would not be standing here, a successful graduate of Air Academy High School without you all, teachers and administrators alike. I’ll be proud to represent Academy School District 20 at the University of Denver as a Boettcher Scholar in the fall. 

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Morgan and I had the pleasure of posing for a picture with Academy School District 20 Superintendent Mark Hatchell at the Board meeting. His leadership keeps more than 600 students with life threatening food allergies safe and included in the school district.

I hope that your experience with your child’s school and school district is as positive as ours has been!

 

Beyond Our Wildest Dreams

A friend of ours says that God answers prayers in one of four ways:

Yes,

No,

Not Yet,

and Beyond Your Wildest Dreams!

When my son, Morgan, started kindergarten in the Fall of 2001, I prayed every day when I dropped him off at school, “God, please take care of my boy!” It was such a part of my routine, and it helped me to be able to walk back home knowing I’d done everything that I could do to keep him safe, including a little prayer humbly asking for help.

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What I didn’t know then is the many positive things that Morgan  – and our family – have received because of his food allergies. It’s so easy to focus on all the hardships and issues that food allergies create. I don’t need to list those here, because if you’re reading this you no doubt know what those are! Back then, I couldn’t imagine what the future would look like for Morgan blazing the trail in our school district.

He was the first student to have multiple life threatening food allergies. He was also the first student to have a 504 Plan for his food allergies. An entirely new culture was going to have to be created in the school, and there were a lot of parents not happy about that!

Now that Morgan has just graduated from high school, I have been reflecting on his entire school career. Some of the good things that Morgan has received from his food allergies are:

  • Compassion for other children who manage an illness
  • A desire to read (at a young age) to be able to read food labels
  • A healthy lunch for school each day made by his Dad in elementary and middle school – usually with a positive hand-written note included
  • Learning how to advocate for himself in various situations, not just when it involves food
  • Close friendships created with kids across the USA by attending food allergy conferences
  • An ability to tell who really is his friend, because real friends care about keeping him safe
  • Great food at overnight camps since Mom packed his safe food
  • A healthier diet than most of his peers!
  • The ability to mentor younger children with food allergies
  • Learning that he is a REALLY good public speaker
  • Creating his own website design company (since working a minimum wage job at a restaurant wasn’t going to be preferable for money-making)
  • Another reason to say NO! to drugs and alcohol
  • A distinguishing element when he applied for college scholarships

It’s been quite a learning experience for him and for me to get him safely through school and to keep him included in activities. He went from preschool through high school in Academy School District 20 – fifteen years in all – without an allergic reaction. We certainly didn’t know that was possible when he began school. That result is beyond our wildest dreams and certainly an answered prayer!

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In the Fall, he is off to the University of Denver (DU), where I’m sure he will continue to blaze a trail with food allergy advocacy. And I’ll bet that when my husband and I drop him off at his dorm, I’ll be saying a little prayer, “God, please take care of my boy!”

Food Allergy, Colds & Other Nasty Bugs!

 

1996 RSV

When our son, Morgan, was 3 weeks old he was diagnosed with RSV – Respiratory Synctial Virus. It was a frightening illness that landed him in the hospital with oxygen necessary around the clock and nebulizer treatments every 4 hours. The illness lasted for three VERY LONG weeks. Thankfully, Morgan fought through the illness and still gained weight like a champ!

Nine months after this occurrence, Morgan touched a peanut butter sandwich, reacted with hives, and we were baptized into the food allergy world.

At 18 months old, Morgan got a horrible cold that got considerably worse during a blizzard that we had. (We are in Colorado, so blizzards aren’t uncommon occurrences). My mother was unable to get home from work, and stayed at our house that night. All through the night, I got up to check on Morgan and his breathing. I knew by the early morning hours that he needed to get to at least get to our doctor’s office. My Mother thought I was crazy. She was accustomed to letting kids just battle through illnesses. I had an instinct that something was clearly not right, and listening to my Mother could have had disastrous consequences. I got into the doctor’s office and we were able to thwart off the need for oxygen thankfully. Morgan was given a large prescription for nebulized albuterol to have on hand for any future similar occurrences.

Morgan continued to have bronchial spasms every time he got a cold, which was eventually diagnosed as mild asthma at about age 3. The impact of RSV, food allergies and asthma was much more problematic for me – aka Dr. Mom. I was forever scared that every sniffle was another major illness requiring an emergency room run. It was difficult to know when to get him immediately into the doctor and when to allow a virus to run its course.

Morgan also had strange reactions to illnesses. He would break out in hives during a virus, for example. Or he would be the only family member who didn’t get sick when everyone else was sharing the germs. I don’t understand everything with the immune system, yet I have learned that children with food allergies just don’t respond the same to illness that other children do. Either Morgan’s system goes way overboard, or he doesn’t react at all.

In the elementary school years, Morgan would want to stay home upon the first touch of an illness. Maybe he felt better at home – almost like he didn’t trust what his body was going to do and he’d rather be at home when something happens! Children at this age are sick so frequently, but I really felt better being able to watch over him.

As he aged into high school, he was more able to handle illness and go to school when he had a cold. And I’ve learned how to let go a little more and realize that not everything necessitates Dr. Mom’s hovering presence!

This past weekend was another one of those scary illness times. Morgan had been at a Speech/Debate tournament all afternoon Friday and into the evening until 11:30pm. He was up very early and back at the tournament by 7:30am Saturday morning. I didn’t see him Friday night or Saturday morning, but I had a sense that he was going to be getting sick. Call it Mom’s intuition. He’s been cramming a lot of activities into his schedule during his last semester of high school, and sleep is frequently missed.

He had 6 rounds in the tournament and he won every round, which no one else was able to do. This means that he will be going to the National Speech/Debate tournament in June. He was thrilled with his accomplishment and must have let out a large sigh of relief.

Then he called me and said that he was so sick that he didn’t think he could drive home. He had chills so bad that his teeth were chattering. I had no idea what illness he could have that was causing such dramatic symptoms so quickly! I drove over to the tournament, which was thankfully in our same city. My husband talked to Morgan about coming home and not staying for the awards’ ceremony. That was a big disappointment for him since he worked so hard, but we needed to get an assessment of what was going on and we wanted to keep the other participants healthy.

We took him to an Urgent Care facility. The doctor determined that it was possibly Strep Throat. Since Morgan had two college scholarship interviews occurring all day Monday (about 36 hours later!), we asked the doctor to put him on an antibiotic immediately even though the Strep Test came back negative. The doctor understood the situation, and graciously agreed!

Morgan slept for 16 hours, got up the next day feeling a little sluggish but knew that he was on the mend. The Strep Test never did show as positive, but the antibiotics worked and he was able to make it to the Scholarship Interviews early Monday morning.

I’m sure we will one day be able to laugh about this past weekend, but it was harrowing to watch him so sick and pale. We can add another crazy immune response to Morgan’s list of odd things – he never tests positive for a strep test even though he has the illness!

 

 

 

Managing Food Allergies? Mistakes That We’ve All Made!

 

 

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Nicole Smith is the Founder of AllergicChild.com and the author of three best-selling children’s books about food allergies. Allie the Allergic Elephant: A Children’s Story of Peanut Allergies was her first foray into writing. She is an almost-native of Colorado, and continues to speak and advocate for children with food allergies at the state level and in her school district’s Food Allergy Task Force, in addition to writing a blog about living with food allergies on AllergicChild.com.

Gina Clowes is an author, speaker and Master Certified Coach whose advice and parenting tips have appeared in numerous print, radio and television features including CNN, ABC World News Tonight and People Magazine.  She is the author of the best-selling children’s book One of the Gang: Nurturing the Souls of Children with Food Allergies and writes a regular column The Parenting Coach for Allergic Living Magazine.

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Children with food allergies don’t come with an instruction manual, so it probably wouldn’t surprise you to know that over the years we’ve received thousands of emails and phone calls from parents struggling to manage their child’s food allergies. As our allergic children are both teenagers now, we have the benefit of hindsight.  We can easily spot common mistakes that parents make because we’ve made the exact same mistakes ourselves at one time or another.

If you’re like us, you’ve seen a lot of articles telling you what to do to help your child with food allergies at school, camp or on a sleepover. In this article, we’d like to try a different approach by outlining some of the most common mistakes that parents of food allergic children make. Our hope is that with a heads up and some advance warning, you can learn from our mistakes without the painful consequences.

Mistake #1: The Unprepared Parent

Nicole:

I really feel for the Mom who calls or emails me two weeks after school has started. She is likely to have a kindergarten student, and hasn’t done anything to prepare the school for her child’s allergies. Inevitably her child is contact allergic in addition to ingestion allergic, and therefore the child needs a number of accommodations. The school is overwhelmed and balking at everything she is requesting. This Mom is likely crying and overwhelmed herself. What did she do wrong? She didn’t prepare the previous spring before the school year started!

It’s unfair for a parent to expect a school/school district to be able to manage a child’s food allergies if they are informed on the first day of school! Lesson plans frequently need to be changed, epinephrine autoinjector training needs to be done…there are so many details that cannot be completed on the first day of school.

Gina:

Some parents think that a passing conversation they had with the nurse at the kindergarten registration or with the principal months ago laid the foundation for a safe plan for their child.

Then they are devastated when they find out that the bus driver is not trained and their child is sitting alone at lunchtime or during classroom birthday celebrations. These parents expect their schools to be ready to accommodate allergic children but in many cases, they’re not.

Developing an individual written accommodation plan is one of the most important projects parents will ever manage. It takes planning, education and dedication to see this through. A great place to start is by reading the CDC Guidelines for Managing Food Allergies in Schools to learn about the recommended practices for parents and school administrators.

Mistake #2: Ineffective communication

Gina:  Another issue I see with parents is that their communication style affects the process in a negative way.  I’ve received emails that are 300 words long in one dense block of text. And even upon re-reading, I’m not sure what the parent wants or needs.

Before you open your laptop, know why you are emailing.  Start with a concise request, and then fill in the details.  Then re-read your message to make sure that the tone is appropriate and that your message is clear.

Nicole:  I’ve found that I also need to read and re-read my emails to ensure that I’ve spelled everything correctly. Anaphylaxis needs to be communicated as a serious issue, and spelling it correctly – along with EpiPen, Benadryl, and Auvi-Q – are all important to ensure that school personnel get educated appropriately.

Mistake #3: Asking for too much

Nicole: When my son started kindergarten, our allergist wrote a letter to the school district 504 Administrator outlining exactly what he needed to remain safe in school. In our case, the main items were an allergen-free classroom and peanut and tree nut free zone in the lunchroom(figuring that most children wouldn’t be bringing in fish or sesame for lunch); and for kids to wash hands after lunch.

Had we asked for a peanut-free school without the medical support of our allergist, we would have been asking for too much. And in our son’s case, a peanut free school would do nothing for his tree nut, sesame, fish or shellfish allergies.

Gina: I am all for restricting food or allergens from the classroom, the learning environment, especially when there is a separate cafeteria. However, school-wide bans are often not a feasible food allergy management strategy especially when you are dealing with milk, wheat, or egg allergies.

If a district decided to manage food allergies with a school-wide ban for a peanut-allergic child, what would they do when they had a child who was severely allergic to milk and egg?

Would you ban a food for one child but not the other? Again, restricting food or allergens from the classroom is different and is an accommodation that can work well to foster inclusion and minimize risk of exposure.

Mistake #4: Taking on the burden of all accommodations yourself

Nicole: I made this mistake with my son at first. He was the first child with severe food allergies that our school district had ever educated. We were blazing a trail, and when the kindergarten classroom teacher wanted to hand out safe treats to all the students DAILY, I provided a safe snack for my son to have. I also provided safe cupcakes for birthday celebrations frozen in the school freezer for ‘just in case’ a party occurred! Today, I wouldn’t do that. I would ask that either all the students have no snack or I’d ask that every child get the same snack that would also be safe for my son.

Gina: What tends to happen is that teachers and other school officials think that when Johnny needs a treat due to an upcoming birthday celebration, it is his mother’s job to provide a safe one. When in reality, if the school is serving a free treat in class, there needs to be a free treat for Johnny as well, and it needs to be safe for him. For classroom parties and other school celebrations, schools are responsible for what is served in the classroom regardless of who bakes or buys it. This doesn’t mean that parents can’t send in “safe” treats for their child. This option should be available to parents, however it should not be a requirement.

Mistake #5: Disclosing Private Medical Information

Nicole: We probably disclosed too much when our son was in elementary school. We wanted for everyone to know about his food allergies so that he would be safe. The problem was that it backfired and our son ended up getting bullied because other boys knew where he was different. And kids being kids – they pounced on that! I’ve learned that it isn’t necessary to give all the parents, teachers and students the medical details about my son’s food allergies. Instead, it’s the school’s job to adhere to the 504 Plan and FERPA (Family Educational Rights and Privacy Act).

So, it’s not up to the parent to send out a letter stating, “my child has food allergies, please keep him safe.” The school needs to send out a letter stating, “we have students in kindergarten who have milk allergies, please refrain from sending in any food with dairy.” It’s best if this letter is signed by the school principal and/or school nurse.

Gina: Severe food allergies weren’t often recognized as a disability back then, so parents felt they needed to take on the entire burden themselves. They were trying to get classmates and other parents to understand in the hopes that they would protect the allergic child. They were asking for favors from the other parents to keep their child safe and included. I favor a more formal approach.

We don’t have wheelchair ramps, rails in bathrooms and handicap parking spaces because someone asked for a favor. Accommodations like these are made because they are the law.

It’s fine to educate all students about food allergies in general, and certainly kids can let their friends know about their allergies.  However, in my experience appealing to classmates is not the most effective approach to keeping your child safe and included at school.

Mistake #6: Not understanding the law

Gina: This leads into the most serious mistake that parents can make- not understanding the laws as they pertain to severe allergies in school.  When we have our first baby, we typically buy the book, subscribe to the magazines, and we read about the pacifiers, formulas and car seats. We acclimate to a whole new world. It’s a similar shift in reality when you have a child with food allergies, but some parents don’t buy the book, or read the reports.

Advocating for your allergic child in school is the most important job you will likely face. It is a huge undertaking that takes education and preparation. It’s a project. If you approach it casually, by chatting with this person and that person, by thinking you know the facts by comments you read on social media, you’re likely to start off on the wrong foot. When this happens, it’s difficult to right the ship.

If you haven’t started yet, I’d encourage you to start by reading the CDC Guidelines for Managing Food Allergies in School and Early Care and Education Programs.  Learn the laws and the recommended accommodations, plan how you will proceed, and document your steps throughout the process.

There is a concept called “Sensitivity to Initial Conditions” and this means that subtle differences in the beginning can result in wildly different outcomes at the end. I’ve seen this play out time and again with parents and schools.  Your initial contact with the school including the form and content of your communication, and your tone and demeanor lays the foundation for your relationship going forward.

Nicole: We were lucky that our school district understood the laws available to them in 2001 when our son started kindergarten. Additionally, my husband and I had an understanding that anything we agreed to with our school district needed to be in writing.

We relied on the 504 Plan and the Food Allergy Action Plan that were developed to keep our son safe and included. We started out on the right foot by having both of these plans prepared in the spring before he started kindergarten. The principal of the school and the school nurse together wrote the letter to kindergarten parents asking for none of our son’s allergens to ever be present in the classroom. This was met with much consternation on the part of several parents. Yet, these two school professionals took on our son’s medical condition with decisive action and kept my husband and I updated with any issues that they had to handle. It has been a partnership with the school district ever since between our family and the district staff. We had the law on our side, and thankfully a wonderful school district that was more than willing to abide by the law and to do anything necessary to keep our son safe and included.

When food allergy parents learn to advocate well for their child, they pave the way for every parent who comes after them. They makes it that much easier for the next parent and that much safer for the next child. Every conversation, every email, every EpiPen or Auvi-Q training is like a coat of paint that we apply and someday soon, we’ll have painted a whole new landscape: a world where food allergies are understood and accommodated everywhere.
 

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/

http://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!

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.

 

 

 

 

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 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 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?

 

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?

FAAN Anaheim 2012 391 (2)

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, 504 Plans, Title II and K-12 Schools

I recently attended a presentation by a Senior Attorney for the Office of Civil Rights (OCR) in Denver, about Section 504, Title II and Students with Disabilities in Public Schools. This presentation was made to the MOSAIC support group in Denver, Colorado on  May 7, 2012 in regard to 504 Plans in the K-12 school setting. Information in this blog post should not be used to argue a specific issue that you may have with a school, but is provided here for informational purposes only.

The attorney started the talk with 3 rules:

1.            There are rules about this “stuff”
2.            The rules are your friends
3.            Follow the rules

The presentation covered the following two areas: Section 504 of the Rehabilitation Act that was created in 1973, and Title II of the Americans with Disabilities Act (ADA) created in 1990 which are read together. However Section 504 pertains to those institutions receiving Federal funds, while Title II pertains to all public entities.

OCR is part of the US Department of Education and enforces civil rights laws prohibiting discrimination in education programs on the basis of: race, color, national origin, sex, disability, and age. Religion is not a category. OCR is headquartered in Washington, DC and includes 12 regional offices across the US including the Denver office where the presenting attorney works out of.

Which schools are covered by 504 and Title II? Section 504 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance; while Title II prohibits discrimination against people with disabilities by public schools (including public vocational schools and public charter schools).

OCR enforces compliance to Section 504, but rewards no damages. Section 504 is a civil rights statute and there is no funding for 504 Students. OCR has a database of recipients (schools) of federal funds.

Individuals with Disabilities Education Act (IDEA) is different. Many students are served under another federal law known as IDEA. OCR doesn’t enforce this. There are 13 specific disabilities covered under IDEA and it is a funding statute and not a civil rights statute. IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services.

What do school districts need to know about 504 and Title II?

Every year, each school district must: Identify and locate students with disabilities in the district who are not receiving a public education and notify parents/guardians of children with disabilities of the district’s duties under Section 504. Location is done from parents, teachers, doctors, Child Find, etc. A school district’s Special Education Coordinator is responsible for IDEA enforcement. A school district’s 504 Coordinator is responsible for 504 enforcement. A school district must have 1) a non discrimination statement, 2) a Section 504 coordinator and 3) a grievance procedure. Who the District 504 coordinator is must be published and that person must be adequately trained in 504 procedures.

A 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.

What does Free and Appropriate mean?

Free means free!  No charging for costs related to disability, but school/district may charge usual fees paid by all students.

Appropriate means regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met. It is equal opportunity for all students, not equal results. It gives students the opportunity to achieve.

Identification and Evaluation of Students

A school district has the unilateral responsibility to get/obtain information on the student’s disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function. There is no cookie cutter approach. Two children both having food allergies and a 504 plan should not have the exact accommodations in a 504 Plan.

The school district must individually evaluate any child who, because of a disability, needs or is believed to need special education or related services.

When must the evaluation occur? Before the child’s initial placement in a regular or special education program. The evaluation is intended to answer two questions: 1) Does the child have a disability under Section 504/Title II? If so 2) What are the child’s individual education needs?

Regarding Question 1 above: does the student have a physical or mental impairment which substantially limits one or more major life activities? The ADA Amendments Act 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. Some of these are (but are not limited to):

Caring for oneself
Performing manual tasks
Walking
Seeing
Hearing
Speaking
Breathing
Learning
Working
Eating
Sleeping
Standing
Lifting
Bending
Reading
Concentrating
Thinking Communicating

Major life activities also include operation of “major bodily functions” such as:

Functions of the immune system
Normal cell growth
Digestive
Bowel functions
Bladder
Brain
Circulatory
Endocrine
Reproductive
Neurological
Respiratory

What is an impairment? Any physiological condition that affects a bodily system, or any mental or psychological disorder. A 504 Plan doesn’t have to have anything to do with a learning disability if a child has “just” the disability of food allergies. The question is: Does the student’s impairment substantially limit one or more major life activities? A temporary impairment like a broken arm is not a disability. 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. Conditions lasting more than 6 months need to be carefully considered.

Substantial Limitation does not mean severe restriction or inability in performing major life activity. Look to condition, manner and duration. Must consider the individual without mitigating measures such as an EpiPen or insulin to determine disability. The one exception to this is eyeglasses. There is no vision disability if eyeglasses correct the problem.

IDEA vs. Section 504/Title II

IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services. Under Section 504, a qualified student with a disability is protected regardless of whether the student needs special education.

Regarding Question #2 above: What are the child’s individual education needs?

Needs are identified by looking to a variety of evaluation sources, including: aptitude and achievement tests, teacher recommendations, physical condition, social or cultural background and adaptive behavior. Placement of the child must be by a group of knowledgeable persons knowledgeable of the evaluation data, knowledgeable about the child and knowledgeable about the placement options.

The group should answer the question: what is the child’s need related to the disability? (not to the diagnosis). This group should include the 504 coordinator, parent(s), teacher, school psychologist, etc. There are no unilateral decisions in this area. If a parent disagrees with the group/team’s placement then the parent can go to due process. You don’t have to have an attorney for due process (nor does the school district). Due process has to do with the content of the 504. It is a procedural issue if the school is not following the 504 Plan. It is best to use a school district’s grievance procedure first. A parent has 180 days after the last act of discrimination to file with the OCR.

A 504 Plan doesn’t have to even be written, but it is strongly suggested to do so. If a child has no 504 Plan and “just” a Health Care Plan that outlines the accommodations, a parent should make sure to receive procedural safeguards (which outline what to do in case the plan isn’t followed). If there’s a need for accommodations, then you have to have a plan and it’s best to have it written. Call it whatever you like, (as the attorney said, you can call it Fred (!) or a Health Care Plan or a 504 Plan) and include whatever is agreed upon by the group/team. Does every child with food allergies need a 504 Plan? It depends on if the disability limits a major life activity.

Placement is defined as appropriate educational services designed to meet the student’s individual needs. The Team carefully considers evaluation information from a variety of sources and all significant factors affecting the student’s ability to receive a FAPE. The Team documents all the information considered and does not rely on assumptions regarding persons with disabilities or classes of such persons. It’s about the individual!  Food allergic students should be integrated with other students.

Also discussed was the Court Case: U.S. Education Department Reaches Agreement with Memphis City Schools on Aids, Services for Students with Disabilities OCR does investigate complaints but it can also ensure compliance by completing a review which is what they did in Memphis. They screened all health care plan students to see if they were offered 504 Plans for food allergies. You might want to bring this court case to the attention of your school district.

The 504 Plan should be re-evaluated at least every 3 years or before a significant change in placement.

FAPE – Common Compliance Concerns

1)            Making decisions unilaterally instead of by the Team

2)            Making decisions that are not based on evaluation information or child’s needs

3)            Failing to implement IEP or 504 Plan

4)            Not affording parents procedural safeguards (a system regarding identification, evaluation and educational placement). Procedural safeguards include: notice, records review by parent/guardian, due process-impartial hearing with participation by parent and counsel (if desired) and a review procedure.

The term ‘least restrictive environment’ was discussed in the question/answer session. There is a careful balance of confidentiality between the school’s responsibility to implement the plan and the child’s need for privacy. The child’s disability may be announced to keep the child safe in some cases.

Reasonable accommodations is a concept for post-secondary education and employment places. Section 504 requires that the individual education needs of students with disabilities are met as adequately as the needs of students without disabilities. See Question 14 here.

FAPE is regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met.

For children with food allergies going to college, a transition plan in the last two years of high school is suggested.

 

 

Food Allergy & the School Lunch

The US Department of Agriculture oversees the national school lunch program and has a guidance document here.  On page 25 of this document, it states “The school has the responsibility to provide a safe, non-allergic meal to the child if it is determined that the condition is disabling.” Setting forth this statement is one thing – the application of it depends upon educated cafeteria staff, accurate ingredient listings of foods and in some cases good luck!

There are many ways to deal with the school lunch. We have opted for Morgan to ALWAYS bring his own lunch. We are very mindful of eating nutritious food, and the school lunches in our school district are based on a different idea of nutrition! Additionally, with Morgan’s multiple food allergies it has always seemed too risky to attempt finding a safe school lunch.

However, we are probably among the minority of even food allergic parents in our school district. Many times I receive questions from food allergic parents wondering how to create a safe menu for their child to eat school cafeteria food.

My first question to them is what is the motivation? Is it important to YOU that your child participate by eating a school “hot lunch” or is it important to your child? If it’s important to your child find out why. They may feel more a part of the crowd, and that is certainly important. If your child really isn’t thrilled with the idea, then maybe it’s best to send in a lunch made from home.

If it’s really important to your child, your next step would be to contact the lunchroom staff. Your school district will likely have a supervisor over the cafeteria staff who could obtain ingredient information. You could review safe foods and watch for those as they are available on a monthly menu. If your school doesn’t provide such a menu, then you may need to rethink if it’s safe to send your child in to school to figure out whether a food is safe. Remember, looking at a food to determine its safety generally doesn’t work. And taste testing to see if a reaction ensues is horribly dangerous!

Cafeteria staff will need to be trained to not cross contaminate foods. Picking up different foods with spatulas can cross contaminate the entire kitchen. If peanut butter & jelly sandwiches are made in the kitchen, and your child is allergic to peanuts, you may need to opt out of school lunches on pb&j days.

You will also need to find out how the cafeteria will let you know if a product’s ingredients have changed. The menu may have been safe in September, but by February the safe bread roll may come with sesame seeds, for example. Our school district provides a parent meeting in the beginning of the school year for all families dealing with food allergies. Parents can read all ingredient labels of all foods served. The glitch is that there is no system yet available to tell the parents if the ingredients have changed during the school year. And there have been problems with that for the severely allergic children.

Lastly, the cafeteria staff will need to be trained how to properly clean up. If your child can eat a few menu items, you will be relying upon them to clean up after unsafe foods are made in the kitchen area.

It takes a lot of work, and I’ve known too many food allergic children to have reactions eating cafeteria food. Yet some families have managed to find certain safe foods for their child to eat at school, and all is going well. It’s up to each family to find what works for you. After meeting Sara Shannon whose daughter, Sabrina, died at school after eating cross contaminated cafeteria food, Morgan and I decided his food allergies were too severe to take the risk.

Your state or school district may have guidelines for schools regarding special dietary needs especially for those students with food allergies. Check out the resources available and be cautious!

AllerSchool and Allergen Free Eating at School

AllerSchool is a complete end-to-end solution designed for the management of food allergies in K-12 school systems. It helps food service departments and school dieticians to manage complex issues involved with serving everyday meals to students with varying combinations of food allergies and dietary restrictions. is an interview with one of the two creators of AllerSchool, Mr. Dilip Chopra.

Mr. Chopra, can you tell us how you came up with the idea of AllerSchool? Who or what was your inspiration?

The inspiration behind this project was my daughter, who has had food allergies since she was only a few months old.  When she started school, we quickly realized the absolute need to be able to look into the ingredients of the food items served at the school cafeteria. The process of securing reliable ingredient information was so frustrating. We, as a family, started thinking that there had to be a better way! It is not that the school authorities did not want to cooperate with us, but the process of getting accurate information was just not very organized in general. As the years passed by, we came across other parents in similar situations but with children that had different combinations of food allergies, as well as different levels of allergic severities.

It became clear that there had to be a system that could quickly identify problem ingredients and generate safe food choices without requiring parents to go through the cafeteria’s hundreds of ingredient labels. We also realized the challenge that school food officials were facing by trying to accommodate all of the different combinations of food allergies into their daily menus.

As a result, AllerSchool designed to help students and their parents identify safe meal options, taking into consideration each student’s unique combination, and to help the school districts efficiently manage the complex issue of serving their students safe meals. AllerSchool was made a reality with the help of my friend Atul Ahuja, the other co-founder of AllerSchool and the technology architect behind this effort.

Please tell us about AllerSchool and how it works ‘in action’?

AllerSchool is a comprehensive solution with a lot of ‘bells & whistles’, all aimed at making it easier for students with food allergies, their parents, and the school food services departments to efficiently identify safe food choices from existing meal options at the school cafeteria.

Basically, a parent/guardian registers their student and their food allergy restrictions and based on that unique combination of food allergies, the system securely logs the parents on to a ‘parent portal,’ where they can view safe options for their child from the school’s existing menu. The parents are able to view detailed ingredients and can place direct electronic meal orders with the school cafeterias days, weeks, or months in advance.

AllerSchool aids school’s food services departments by automating the complex process of identifying safe meal choices for their students with allergies. It eliminates the process of manually identifying ingredients, including their many food derivatives. These tasks can only be efficiently carried out with the help of automated systems such as AllerSchool.

What do you hope it will accomplish for school districts?

For school districts, AllerSchool has the potential to increase meal revenues by increasing the number of students purchasing meals at the cafeteria. It also can reduce the risks associated with serving the wrong foods, improve parental involvement, and increase operational efficiencies that come with automation. By simplifying some of the complex issues related to food allergies, we hope schools are able to offer more inclusive meal opportunities for a larger number of students with food allergies.

How many school districts are currently using AllerSchool? What do they think about it? Has there been any upgrades or improvements made based upon user suggestions?

The AllerSchool system made its debut in Colorado Springs District11 last fall. Since most school districts implement new systems at the beginning of the school year, we hope to have more implementations this fall. We are currently talking to several school districts across the country which have expressed an interest in the system.

Both parents and the food services departments have expressed great satisfaction with the system. Improvements based on user requests are an on-going process at AllerSchool. We are continually upgrading, improving, and adding new features to the system.

How do you ensure that if ingredients in a product change that parents and students will know this?

The system is  a web-based, “real-time” system. Ingredient changes need to be communicated from the school food suppliers to the school food services and, if there is a change in ingredients, the district officials must make the change in AllerSchool, which is then instantaneously is reflected in all information that is available to parents. The system is in no way designed to replace manual responsibility and diligence at different levels of the food distribution process. Diligence, therefore, is an essential element of the process.

Does your system address cross contact in the cooking process? If so, how?

The AllerSchool system is designed to identify, detect, and interpret potentially unsafe items for individuals considering their unique set of food restrictions. It is not designed to address the issues related to cross-contamination. That falls within the realm of exercising care and diligence that must be carried out during the cooking and preparing processes.

With the AllerSchool system, is peanut butter still being served in cafeterias with your system?

The AllerSchool system has a unique feature that assigns an “Allergy-Friendly Index” (AFI) ranking to all recipes that are served at a given school district. In a nutshell, this is an index ranking that is computed based on the overall macro-allergy profile of a school district. So if peanut products are on the planned menu for a district with a large number of students with peanut allergies, the school food services will see a very low AFI ranking and a “flag” for menu items with peanuts, peanut by-products, and peanut derivatives. It is then up to the school district to decide if they still want to offer peanut products. AllerSchool provides the tools to make such decisions.

Is there anything else you’d like to add?

We (along with D11) were selected as the semi finalists in the Operator Innovations Awards by the National Restaurant Association yesterday. Here is the news link for their announcement.

It is an honor considering we started as just a small grassroots effort and we were selected under the ‘Food Safety’ category for food allergies management nationally. The award also increases the awareness of the subject in the food services industry in general which can only help the efforts of our entire community including FAAN.


Food Allergies, School & a Tragedy

Sending your child off to school for the first time is difficult for most parents. When your child has food allergies, there can be even more anxiety. Then, hearing about the death of a 7 year old girl at school in Virginia can tip the anxiety over the top! The details around the sad, tragic death of first grade student, Ammaria Johnson, may never be fully known. (Click here for more info about this tragedy.) What is known is that Ammaria never received epinephrine at her school. Her Mom had authorized an Allergy Action Plan, but it appears to not have been followed. With good preparation and communication, your child with food allergies can be safe at school. As parents, there is a lot we can do to avert such a tragedy.

I’ve heard from many parents after this sad story hit the news. Many were concerned that no school could ever keep their child safe. There’s a lot to be learned from this situation. It’s my experience that children with food allergies can go to school AND can stay safe and be included! Here’s what we have found to work from preschool into high school.

Before the first day of school, every one of our son’s teachers has read his 504 Plan and Health Care Plan. They know what to do to decrease the chances of him coming into contact with his allergens in their classroom and the lunchroom. They also have been trained  how to administer his EpiPen.

  • We provided multiple EpiPens to the school for the classroom, nurse’s office and playground monitor prior to our son being able to self-carry his medicine.
  • We made sure our son, Morgan, knew exactly what he was allergic to. He wears a MedicAlert bracelet that details this also.
  • We had an agreement that he ate only food that Mom or Dad packed for him or brought to school (for a party) when he was in elementary and middle school. He never purchased the school lunch or anything from a vending machine.
  • Morgan, my husband and I educated his friends about his food allergies through classroom presentations and Cub Scout/Boy Scout meetings. Books like Allie the Allergic Elephant were read to the class so that his classmates could learn what an allergic reaction looked like and what symptoms could occur.
  • We keep communicating …with the Principal, teachers, custodians, bus drivers, etc…education about food allergies isn’t a onetime shot. It needs to be brought up over and over again. And when the conversation does occur, we focus on being kind about the message that we all want to keep Morgan safe!

It doesn’t have to be complicated, but that doesn’t mean it’s easy! It does take a lot of preparation and communication with the school to keep your child safe.

Accidents do occur, so talk to your child about what they would do if someone offered them a food. Roll play situations. What would they do if someone sat in their allergen free zone in the cafeteria? Help them with options and solutions. What if someone teased them? Help your child learn how to become a good self-advocate.

Morgan’s friends watched out for him because they knew about his food allergies. We never kept his allergies a secret, and that has continued to work for us as he has aged into a teenager.

For those of you with children entering preschool or kindergarten in the Fall – it’s not too early to begin discussions with the school of your choice. Check out our e-book on Food Allergies & Schools and our Nut Free Zone posters to help raise awareness!

 

Inhalant dairy allergies & a creative solution – a robot!

Below is an interview with Lauren & her Mom, Melissa. Lauren’s inhalant dairy allergies forced a creative solution with going to school!

Lauren – can you tell me how old you are and what your allergies are? 

I am 14 years old and I’m allergic to all forms of dairy including goat milk.

Have you ever gone into anaphylaxis?

I have been in anaphylaxis over 40 times. If my EpiPen wears off I need more EpiPen before I reach the hospital. Sometimes I only need one EpiPen if it’s just a little contamination, but many times I need at least two EpiPens and then more meds at the hospital. If I do not take my EpiPen immediately I get VERY sick. In the last few years I have gotten better about taking my Epi right away and this helps me not get as sick as I used to get.

One time I swallowed a bite of cheese without knowing it was “real” cheese ( I thought it was my soy cheese that I always eat) and my throat hurt immediately, then I got a blister on my lip and then I got red all over my body like a sunburn. I was throwing up and felt very sleepy. I started wheezing. I began getting hives that burned all over. I was screaming that my back burned. All of this happened in minutes, and got worse until we arrived at the hospital. My parents said my eyes rolled in back of my head in the trauma room. They said the doctors were very helpful and knew exactly how to help me. I fell asleep. When I woke up I felt better and we spent two nights in the pediatric intensive care unit.

Tell me about your robot. How does it work? Can you see the students and teachers as you sit at home?

The Vgo works like Skype on wheels. I log on at home and then I drive my Vgo to class from home. I can see the teacher and the students, and can even work on group projects together or with a partner. If I want to raise my hand I press a key on my keyboard and a light on the robot flashes so the teacher can call on me.

How did you feel about your safety at school with your food allergies before getting your robot? And now?

I was always worried about what was going to happen to me that day…would the ambulance have to come to school again? Would I be careful enough? And now that I go to school with this robot I feel safer BUT I still want to go to school.

Do you participate in extra-curricular activities like sports, clubs or dances?

I have done field hockey this year but I have to make sure I’m wiping everything down and I can’t go on the bus to away games and I can’t be around their snacks and I can’t do food events with them. I’m in karate also. I also am involved volunteering at the hospital and other philanthropies around my town that are safe. I also volunteer at our church (but I can only do certain jobs that are safe.)

How do you socialize with your friends?

When my friends come over they need to be sure and wash up and don’t have it on their clothes. When they come in and they don’t eat obvious dairy before they see me (like pizza cheese doodles or Doritos). Sometimes I go to other friends houses if they clean before I come. Sometimes I go places with them if there is a low risk of contamination while I’m at a place. But there is a high risk with most things. I try not to take high risks.

Melissa – when did you know that Lauren was no longer safe at school and that something needed to change?

We knew that Lauren was no longer safe in school when she went to one of her classes and walked into the room after they had a pizza party and her throat began to hurt. The teacher washed down everything correctly but it was still airborne and enough was still around to cause a significant reaction.  She took her EpiPen, the ambulance came and took her to the hospital and she was on steroids for a week that time.

Did Lauren have a 504 Plan and Health Care Plan prior to having the robot?

Yes she did, we felt that it was important to have a 504 & a Health Care Plan , but our needs became above and beyond what the school could handle. To keep her safe at school would mean to eliminate dairy. Also when she has a reaction she needs to take epinephrine immediately or she becomes way too sick. We could not take the chance that she would not get medicine immediately. Also her doctor said we should take her out of school before something happens that we can’t “get back” from.

How did you get the school to pay for the robot?

Lauren’s home bound supervisor was working hard on finding a way for Lauren to attend school safely. This past summer he was reading “Sports Illustrated” and read a story about a boy in Texas who went to school using a robot. He thought that this robot would be the safest way for Lauren to get to go to school. He went to the Asst. Superintendent to ask for her support to let him try this “robot” out with Lauren. He purchased the unit out of his home bound budget. His concern was having Lauren spend her freshman year in school.

What do you hope for Lauren as she ages through high school and goes into college and beyond?

Lauren wants to work, go to college, become a forensic scientist, get married and start her own family. Our hope is to find ways to keep her safe through living out all of her dreams.

Is there any hope for her dairy allergy to lessen?

Our hopes for Lauren is that the Chinese herbal treatment that she is on (from Dr. Li at Mt. Sinai Hospital in NY) will work! First the hope is that she will stop reacting from inhaled dairy, and then of course we wait for the day of the cure. In the mean time we continue to remind her to wash hands, keep her hands out of her mouth, remind others to wash hands, especially when they come in our home. And remind ourselves to  keep our eyes open for hidden dairy, or airborne dairy. Also we need to read labels over and over and find ways to live in a dairy laden world.

Is there anything else you’d like to add?

Dairy is in so many things…and in surprising places. Lauren has been in anaphylaxis so many times because of a combination of factors. First it was hard for our family to understand how sensitive she was….it started with eliminating dairy from my own diet so I could continue to nurse her but it went on to having to eliminate dairy from our home because I would contaminate her from the dishwasher items in addition to cross contamination issues. Dairy has been found in places I never would have thought of. We have had so many mistakes because we could not always grasp the seriousness of invisible dairy and because of human error…like manufacturers that make mistakes in labeling. We now know that more than 20% of medications have dairy. We find out things like that the hard way. Food labeling laws have made life MUCH easier for us. Restaurants like in Disney World makes our life easier when we go there. And people who “get it” also make life easier.

Thanks Lauren & Melissa!

The 504 Plan – Is it Necessary?

There are many schools and school districts that have guidelines or policies for severely allergic children. Some states have mandated these policies; other states have provided guidelines for schools to follow. If you’re interested in this type of legislation, please click here. There is a Federal law – the Americans with Disabilities Act – that can provide coverage for your child with life threatening food allergies regardless of where you live in the USA. Every entity that receives public funding (therefore generally not private schools) must adhere to the ADA.

The Asthma and Allergy Foundation of America states,  “The ADA borrows from Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability in employment and education in agencies, programs and services that receive federal money. The ADA extends many of the rights and duties of Section 504 to public accommodations such as restaurants, hotels, theaters, stores, doctors’ offices, museums, private schools and child care programs. They must be readily accessible to and usable by individuals with disabilities. No one can be excluded or denied services just because he/she is disabled or based on ignorance, attitudes or stereotypes.”

The Section 504 Plan in an educational setting stipulates the accommodations your child with food allergies will need in order to safely attend school and participate in activities. This plan will generally be created with a group of administrators and you, the parents, in attendance. Many school districts have 504 administrators who oversee such plans. The school principal, school counselor, teacher and parents are also frequently participants.

This plan is legally binding. Beyond that, having a written plan of accommodations ensures that there is no confusion as to the exact steps that need to be taken to keep your child safe and included in as many school activities as possible.

Some schools will be apprehensive to create a 504 Plan for a food allergic child and will want to only agree to a Health Care Plan. Our experience was that our son was too often asked to not participate in school activities, whether it was in the classroom or a field trip, because of his food allergies when he started elementary school. We wanted to ensure his inclusion in all safe activities, or for the teacher to find an adequate substitute for the entire class. A 504 Plan ensures that a child with a disability is included in the activities as much as possible, whereas a Health Care Plan didn’t cover the exclusion issue. We therefore asked for both a 504 Plan and a Health Care Plan.

You will want to have the 504 Plan in place BEFORE the school year starts. Ensure that every teacher who will teach your child has read this plan, and is aware of the specific accommodations.

We rewrite the 504 Plan on an annual basis in the spring. This allows next year’s teacher(s) to be brought into the meeting. We review what went well during the school year, what problems we had and what needs to be changed in the 504 Plan for the upcoming school year. Our son always participates in these meetings.

The Americans with Disabilities Act was amended in 2008 to include eating as a major life activity. Therefore, obtaining a 504 Plan for your food allergic child should no longer be as difficult to obtain. You can read the new amendment to this Act here.

Does every child with food allergies need a 504 Plan?    No, not in my opinion.

In our school district of 23,000+ students, there are approximately 600 with life threatening food allergies (indicated by having a prescription for an EpiPen). Only 10 of these students have a 504 Plan. Why is that? Our school district has a policy and procedures for dealing with students with severe food allergies. Additionally, the district has guidelines for the parents, student, teacher, school nurse, administration, transportation and cafeteria to follow. Most students will have all their needs met with these layers of protection. However, for students who have a history of severe reactions and/or contact and inhalant reactions, and/or have severe peanut or tree nut allergies (indicating more likely to experience anaphylaxis), in addition to eczema and/or asthma – an added layer of awareness is necessary. Those are the students who have 504 Plans.

I recognize that our school district is certainly not the “norm.” If your school district does not have any guidelines, policy or procedures for students with food allergies, then you will likely not only want, but need a 504 Plan to ensure your child is included in all activities with the highest level of safety.

In Morgan’s Corner below, Morgan explains his experience with 504 Plan specifics. We feel it is very important to include him in all 504 discussions so that he knows the ‘safe adults’ in the school building. He also knows what is expected to keep him safe, and that has been extremely important in situations where the 504 Plan was not followed – accidentally.

We have never had to involve a lawyer to get our school to provide a 504 Plan. Our allergist listed out what accommodations would be necessary for Morgan to attend school in a letter, and the school district agreed that a 504 Plan was necessary. When there has been an issue about the plan not being followed, we’ve had an immediate meeting with the Principal to discuss what actions should have been taken. The plan has been updated or reiterated, and thankfully no serious allergic reactions have been the result of the error. The 504 Plan has allowed us to separate out the emergency actions, which are iterated in the Health Care Plan – with the accommodations which are listed in the 504 Plan.

We’ve found benefit in having both, and Morgan continues to have both in high school.

Morgan’s Corner: The Importance and ‘Evolution’ of a 504 Plan and Meetings

As school starts, accommodations start entering our minds. Dealing with school and all the food related issues can seem complicated and challenging, but it’s not!

Section 504 of the American Disabilities Act allows people with a disability that can impend on a learning environment (in our case, food allergies) have a plan for accommodations- a ‘504 Plan’. It is not the same as a Health Care Plan – I do have both.

I have had my 504 Plan since Kindergarten. It has helped me stay safe in school- from having staff and kids wash their hands to having a peanut-free zone during lunch. My 504 Plan has helped me stay safe and healthy throughout all of my school years.

A 504 Plan allows you (or your child) to have accommodations in school. This ranges from everything- I’ve had no pet policies, training of the staff on EpiPens, and no-nut zones at lunch and in my classroom(s). Of course, I’ve had help along the way to create guidelines and keep me safe at school.

Over the years, my 504 meetings have changed dramatically. A 504 Meeting is an annual meeting that occurs with your counselor or other staff member (such as your principal), yourself and/or your child. It is required by Section 504, as every year you can revise accommodations placed in your 504 Plan. I’ve always participated in my 504 Meetings, ever since Kindergarten. Back then, I would sit there and listen, and my mom primarily led the meetings.

As I grew older, I started to participate more- adding comments, responding to questions, etc. In 8th grade, I led my first 504 Meeting.

In my case, I have two ‘504 Meetings’- one at the beginning and end of the school year. At the end of the year, I go over (with my mom) the accommodations laid out in my 504 plan with my counselor. We take out some policies, revise some, sometimes even add more- it all depends on what was needed in the past school year and our vision for the future. The one at the beginning of the school year is the more ‘important’ one- I meet with my teachers for the next year, train them on the EpiPen, and discuss policies of food in the classroom.

In 9th grade, all but one of my teachers applied a ‘no-food’ policy- which worked out just fine. Certainly, there were incidents where people brought in food, but for the most part, it didn’t happen. Most of the food brought in anyways was safe for me to be around. Even in the classroom where food was allowed (but not my allergens) worked out fine. Most of my classmates are very aware, so it usually always works out fine.

Over the years, my 504 Plan has been a very important part of my school life. It allowed accommodations to make me feel safe in school. Over the years, it has allowed my self-advocacy to arise, yet still assist me in food-related issues, especially in high school.

Morgan