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Back to School With a Life-Threatening Peanut Allergy

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My youngest daughter was born by emergency c-section on May 30, 2001.

She was small and fragile and had breathing difficulties from the start. She was also the most beautiful baby in the whole world -- all red-headed and chubby and happy all the time. By the time she was 14 months old, we had spent several weeks in and out of the hospital for intestinal troubles and several bouts of pneumonia. She was on a constant stream of medications. Inhalers and hospital-grade breathing equipment became part of the furniture in our home.

EPI PEN AUTOINJECTOR 0.15 MG EPINEPHRINE

As we started to introduce solid foods, her asthma became worse, so we backed off, and she was almost completely breastfed (aside from fruits and veggies) at 18 months. One evening she found a honey-nut cheerio on the floor and popped it in her mouth. Within a few minutes, she was covered in angry hives, her lips and tongue were swelling and she was coughing and gasping to catch her breath. An ambulance arrived approximately 8 minutes after she ingested the cereal and administered epinephrine. Over the next few years, she had three more reactions from undetermined sources, and in each case the reaction was faster and more intense. She was diagnosed with life-threatening allergies to peanuts, tree nuts, and dairy. (She outgrew the dairy at four years old.)

I didn't put her in preschool, and she never left my or her father's side for the first five years of her life. When the time came to enter her in kindergarten, I agonized over making the choice between homeschooling her or sending her to school. She was socially lagging because of her allergies, and we came to the decision that school would be best for her. I researched public and private schools, and was more comfortable with putting her in a private school with very small class sizes and a core belief in parent participation. I met with the principal and the kindergarten teacher early in the summer to create an action plan to deal with the allergies. This school was amazing in their willingness to do anything to make my daughter safe.

We agreed to make the school peanut and tree nut free, to have direct supervision of my daughter during snack times, and to alter the school's cooking program to create a safe environment. I am aware that there is some controversy surrounding nut-free environments -- that they create a false sense of security -- but for me, it was the safest possible solution, as even peanut butter on another child's breath held the possibility of causing an allergic reaction.

I purchased "Nut Free Zone" stickers for every door of the school, and held a special training session with every staff member. I brought oranges and expired epi-pens and had them all practice. I explained in detail how to handle an emergency situation. The public health nurse joined me, and we also had a video for them to watch.

As the school year approached, I sent a letter to every parent in the school and followed up by phone to ensure they all understood the severity of my daughter's allergy -- that the school needed to be nut free from day one.

I was turning into "that" mom. But I didn't care. My daughter's safety and my apprehension about leaving her alone for the first time ever were my number one priority. About a year earlier, we had purchased a new home, and on our first morning sitting around the built-in kitchen table, my son reached under the table and brought his hand back up covered in peanut butter. Luckily, my daughter was safe that morning, but the shock of realizing that nowhere is ever 100 percent protected was etched into my brain. On the evening before school started, I went into my daughter's classroom and scrubbed down every surface. Every pencil, book, chair. Everything.

She spent three years at that school, and we never had a single incident. Every summer, I would go through the same ritual with the parents and the staff, and every eve of school starting, I would scrub down those classrooms. My daughter felt safe and secure. In the end, our paranoia actually eased her anxiety. She was able to play and learn and create without thinking about her allergies.

When she entered grade three, we made the transition

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frmrswife 5 pts

I'm so glad you are having a good experience with your daughter's schools. My husband is a farmer, so I don't support schools' going completely nut-free; if all of the schools (and airlines, etc.) went nut-free, it would be devastating to our farmers. However, I would completely understand if my daughter was in a class with a child like your daughter, and I would certainly support a nut-free classroom. I try to see it from a farmer's side and a parent's side.

I taught in a private school for 6 years, and we had two kids with severe peanut allergies. The high school guy carried an epi pen with him, but he never had any problems. When the young boy came as a new kindergartner, the administration passed out a picture of him so that we would all know him. The school did not go nut-free, but his class was. His teachers were also very careful to wipe down his spot at lunch before he ate. Everything went well. I admire parents who let go of their kids even through scary allergies like your daughter's. My daughter has chronic lung disease, and we have to be very careful about her getting respiratory viruses. It is very hard for me to trust someone else to be vigilant about washing her hands and keeping her away from others who might be sick!
I hope you all have a great school year!

MoreThanMommy 5 pts

My son is allergic to peanuts/tree nuts (and has grown out of soy and close to growing out of egg). I don't think his allergies are as bad as your daughter's, but he does have some problems with asthma, so that's a concern as well.

He's in preschool now. They're fantastic... they're nut-free, but they are also very accommodating for a variety of food issues from other allergies to a gluten sensitivity to a child with diabetes! Bringing in a class snack (other than fruits and vegetables) verges on the impossible.

I'm trying to walk a fine line between keeping him safe and preparing him to live in the real world. I'm pretty sure that the majority of food allergy related fatalities happen in teens and adults, who don't take their own allergies as seriously as they would their child's. I do know that the solution for us isn't to keep him home and away from any possible danger (heck, he's more likely to be hit by a car at this point), but to try to educate the people around us and him about taking precautions. I think we are fortunate that we live in a liberal area where people are less likely to put their child's "need" to eat peanut butter ahead of the needs of my child to stay safe. By the way, I love the idea of a peanut table rather than a peanut-free table! =}

Christy

@morethanmommy

Laura@OurHouseOfJoyfulNoise 5 pts

I am AMAZED with how sympathetic, co operative, and accommodating your daughter's kindergarten school was, at making so many changes throughout the school and really allowing you to advocate for her the way you did. You did an great job covering all of the bases too!

One of my boys of my triplets, also has a severe peanut allergy. We happen to home school, and his allergy is one of many reasons I am so happy we do. Our local school is not, and would not consider, even being peanut-free. Peanut butter sandwiches is an option for kids lunches every day. They have a -peanut-free table for the peanut allergy kids to sit and eat at, but we all know the extent of what good that does. Not much, in the big picture. Further more, the epi-pens cannot be kept near the child, but all medications must be held in the nurse's office, a good jaunt from the classrooms. But 'the school uses the walkie-talkie system'. Sorry...wouldn't be good enough for me. I want that epi pen WITH him every second, and people on hand nearby every second, who know when and how to use it. If he went to school, I'd be an anxious worried mess, every day. Everywhere we go even as a family, to outings, mass, you name it....we have that epi pen. It's a fanny pack with the pens, Benadryl, and all. In stores, at fairs, etc, he is wearing that fanny pack over his shoulder across his chest diagonally. He's not a worrier about it, but he has become his own little advocate for himself. If anyone offers him anything at all at a party, etc., he asks what it is, what's in it, and asks to see the package. (And as we know, not even the packaging and lack of mention, is nota safety guarantee sometimes.) Of course, we as his parents and his big sister, do all of that too, but it's comforting to see him confidently look out out for himself at his age.

I do wish more schools, would take these allergies more seriously, and provide more safe environments. Of course, all of the controversy about safe environments increasing the allergy population, is not helping.

I'll pray your daughter's health issues keep improving. I know serious peanut allergies are not all that likely to go away, but dairy and some others can. My son's rast test number just keeps going up. He to had a big scary reaction the very first ingestion. We have not had an accidental contamination yet, in good part to our advocacy, and the understanding of some family/friends in our life for get togethers, etc.

Best wishes, and thanks for the great post! It can only spread the awareness, that food allergies are no joke. It's not about a rash, it's about a life!

~ Laura (a.k.a. LLR) www.ourhouseofjoyfulnoise.com ( http://www.ourhouseofjoyfulnoise.com )

TheAngelForever 5 pts

Neither of my sons has a food allergy. My life as an aunt and teacher has exposed me to the reality of severe food allergies. My niece was visiting us with my brother. He decided to give her egg yolk for the first time. While he was showering she sat at the table finishing. Suddenly I noticed her face was swelling. Then I looked closer and saw hives all over her body. I could even hear her wheezing. We quickly called my brother and ran to the pharmacy for Benedryl (he's a pharmacist). Obviously, my niece is severely allergic to eggs. We used to have to wash our hands if we ate anything with mayo for fear of her getting blisters on her skin.

As a teacher, I remember when the school I worked for held trainings for EpiPens. We had several new students that had extreme nut allergies. There would no longer be food in classrooms, hand washing was a must after lunch and there would be a nut free table.

GaelMc 5 pts

WOW. My son's friend came to eat, I was fastidious about being a nut free zone for him. He ate the gelato, no reaction. When we ate at his house I confidentally took more gelato, delighted to have a desert he could safely enjoy. It nearly killed him. No warning on the label. One batch was safe the next near lethal. The manager told his mom they do manufacture products with nuts. No apology, no caring, no intention to add warnings, pure beligerence. Your child is blessed to have you and her dad. You need to be THAT mom.

Great article.

Karen T. Smith 5 pts

Good luck, Jaelithe. I think you're at the beginning of a long hard road in terms of educating other parents about food allergies and keeping kids safe.

In a situation where one parent is expected to provide snacks for an entire room of children, one of whom is allergic, I don't think it's unreasonable that the snack always be nut-free.

however i think the "birthday treat" category is a little different and families may be less willing to accommodate a food sensitivity (although avoiding nuts in baked goods and cakes isn't that hard, but avoiding more allergens like eggs and dairy can be a real burden for families who aren't accustomed to dealing with those issues.)

My son's best friend is one of "the peanut allergy kids" and thus I've been trained on the epi pen (I would like to practice with an expired one and an orange, though - great idea from the original article) and we are very careful with him. He also knows to only eat foods that he/his mom packs for him (he's 4th grade now.) But it's still hard. He used to only be peanut, tree nut, egg, dairy allergic.

He's recently been diagnosed with a ton of other food sensitivities, so it's become impossible to find a treat that's reasonable to share with the class that he can enjoy (no soy, no wheat, no corn, plus nuts, eggs, dairy. Poor kid!) So as a solution, my son decided this year to just bring a surprise for each kid - a pencil, fun pencil grip, and cool eraser - in lieu of a treat. His bday is tomorrow so we'll see how it goes.

Our whole school is now nut-free, except individual lunches (which if they contain peanut products must be eaten in a certain area, and faces and hands washed afterwards.) It's hard, but we're a small school and we can do this - we can commit to all of our children that we'll do our best to keep them safe. Luckily we haven't had any incidents to my knowledge, phew.

Good luck to you in your quest!

I write on Suburban (In)sanity ( http://beckersmith.typepad.com/my_weblog/ ). I have two kids, two cats, a dog, a husband and a minivan. I live in the suburbs now and try to stay sane. Some days, I succeed.

jaelithe 5 pts

Did any of the parents at her first school balk at the nut ban? Did they misunderstand what was safe to send in and what wasn't? Did they fail to follow your directions about class treats? If so, how did you handle it?

My son has a peanut allergy that is not quite so severe as your daughter's (He does have a serious, anaphylactic allergy, but he does not have asthma, and he is not prone to airborne reactions.)

The odd thing in his case is that he was, in fact, able to eat peanuts for years, and only developed the allergy, last year, at age 5 -- in the middle of the school year, AFTER he was already enrolled in kindergarten. So we had to do some serious ad-hoc scrambling to get an allergy plan put together at his school. A very small private school that has never before had a student with a dangerous food allergy. Though the school has been accommodating, because of their inexperience with this issue, they have mostly looked to me for answers about how to structure an allergy policy and approach other students' parents. And though I had an allergist to guide me through the policy part, I'm still trying to figure the dealing with other parents part out.

I haven't faced any open hostility from other parents -- but I have dealt with ignorance and indifference, and I get the feeling some may assume I am just being overprotective, which is FAR from the case -- I haven't asked the school to go totally nut-free -- I haven't even asked for a nut-free lunch table. Last year I sent out a list of safe and unsafe candy, and asked that parents only bring in treats for the class that were safe for my son to eat, but no one seemed to pay any attention to it. Again and again people continued to send in class treats that weren't safe for my child -- including things that were actually clearly marked with allergy warnings like MAY CONTAIN PEANUTS.

This year, I sent the letter again, before the school year even started, but I'm not optimistic that the safe list will be followed. And I am trying to figure out the best way to persuade people to pay attention without making them angry (and therefore even more dismissive).

My son's teacher is vigilant, and my son is, luckily, precocious enough at this age to read ingredients and ask the right questions, so I'm not as worried about his safety as I might be if he were less capable of taking care of himself, but it DOES scare him and hurt his feelings when people who KNOW him and know he has an allergy give him dangerous food that is clearly marked as such. And he feels left out when he has to watch his class eating cake or candy he cannot have.

I really hate feeling like THAT PARENT. The loud, exacting, demanding one. But I'm starting to think being THAT PARENT may be my only option to get people's attention.

fedupwithlunch 5 pts

That sounds like a ton of work! Schools and especially school lunch is tough for kids with allergies. When ingredient lists aren't public information, it's bad for every child's health.

http://fedupwithschoollunch.blogspot.com

Karianna 5 pts

I'm so glad the schools have been supportive. When my oldest was small, I worked at a preschool that had a very strict no-nuts policy. And yet, I repeatedly got backlash from parents who didn't understand the severity of the allergy. Parents saw the life of a child not their own as being an unnecessary "burden" on them. What a shame. To this day I am shocked at their selfishness.

Thankfully in our current school I haven't heard any complaints - whew!

-K

www.kariannaspectrum.com ( http://www.kariannaspectrum.com )

planetjoshmom 5 pts

My oldest son who is almost 14 has a long list of severe food allergies (peanuts, treenuts, eggs, legumes, shellfish, sesame, potato...) so I am right there with you. Last spring he went on a school trip that was 3 days long - it was the first time he'd ever been anywhere for that length of time without me or his dad and I was a wreck at first. Spent many hours menu planning with the parents who were going with them, got in touch with the restaurant they were going to on the second night to discuss options for him, etc etc. He's really very good about checking ingredients on things and he's probably even more conscientious about his allergies than I am, if that's possible! He was fine, and it was nice to have that "first time" hurdle under our belts :)

Sarah

http://planetjosh.squarespace.com

http://sarahndipity.onsugar.com

alexandraRS 5 pts

We live the same life over here: our 3 boys have peanut allergy.

It's a different level of vigilance, isn't it?

You gotta live to know what it's like. On high alert at all times.

I enjoyed this post. I'm on my way to meet you.

JennaHatfield 10 pts

Kudos to you for being proactive and raising a daughter who can also handle things on her own. She's a lucky one!

Contributing Editor Jenna Hatfield (@FireMom ( http://twitter.com/FireMom )) blogs at Stop, Drop and Blog ( http://stopdropandblog.com ) and The Chronicles of Munchkin Land ( http://thechroniclesofmunchkinland.com ). She is a freelance writer and newspaper photographer.