Parents who do not have a child with an anaphylactic allergy often gripe and complain about how inconvenient it is to provide a nut-free environment. They ask why the whole group of children should suffer just because one child has an allergy. I would like to share what it is really like to live with a child who has a life threatening allergy, and suggest ways you can support these children.
My 7.5 year old son has anaphylactic-shock allergic reaction to peanuts. He also has an anaphylactic-shock allergic reaction to dairy, but peanut particles are more easily air-borne, so while he may be in the same room as someone eating dairy, he can not be in the same room with peanuts.
When my son was only a few months old he developed severe eczema on his face, hands, feet, and behind his knees. At one point it was so severe every time I would lay him down he would frantically grind his hands and feet into the carpet, sheets, or blanket until they bled, just to get a little relief from the itching. He was a real trooper and kept a sunny disposition through out, but I could tell he was in agony, especially at night when trying to fall sleep.
I took him to his pediatrician, who was also a Naturopath, and we tried natural remedies of Calendula cream first. No improvement. We tried mainstream medical remedies like steroid creams. No improvement. When he was about a year old they ran a RAST test (blood work to test for allergies) and he tested positive to wheat, corn, dairy, eggs, soy, bananas, and peanuts. We had tried introducing him to solids around 1 years old, but he was really resistant to eating solids and would gag until he pulled up, so other than the occasional crackers, he was exclusively breastfed. Our ped referred us to a pediatrician allergy specialist.
At our first appointment the allergy specialist laughed at the rast results and told me there was no way any child that young was allergic to that many foods. He recommended we do a skin prick test to confirm which false positives and which were true positives. There were no false positives. He was truly reacting to all the foods that tested positive with the RAST test.
I was instructed to eliminate all the foods from my diet while I was still nursing, to not give him any of the foods he tested positive for. The doctor explained what an anaphylactic allergy was, and that the allergy testing indicated he probably had anaphylaxis allergic to peanuts and dairy. He cautioned me that each consequent exposure would produce increasingly reactions.
Around age 3 my son was accidentally exposed to peanuts for the first time. His grandpa was eating peanuts earlier in the day before meeting up with us, and did not wash his hands. Hours later we got a ride with him, and Grandpa helped my son out of his car seat and held his hand up the stairs. My son rubbed a hand across his lips, and his lips immediately swelled up like little golf balls. It was a dramatic visual for what would happen if he ever ingested even a particle of peanut. He was treated for his allergic reaction at the ER, and we were fortunately the peanut was not ingested. He was fortunately we knew about his allergy and were able to take the appropriate preceditions.
When my son started public preschool at 30 months old they were 100% supportive in providing a nut-free environment. The parents were sent notices, and a nut-free classroom policy was strictly enforced.
When he started kindergarten at our small town public school there was no nut-free classroom policy in place to protect children with anaphylactic allergies. It was up to me to advocate for my son and ensure his classroom was safe. I worked closely with the principal and his home room teacher to educate them about his allergy. They implemented routine hand washing and made sure the children were not bringing nuts into the classroom.
The Province of British Columbia, Canada, where we live, has an Anaphylaxis Protection Order that requires every school board establish and maintain policies, procedures and staff training in order to ensure the safety of children at risk of anaphylaxis in BC schools. There is also a list of resources available for teachers and students to assist in implementing anaphylaxis safety in the school.
A couple months after my son started school I was on the playground watching my son play, and a parent I had never met was making small talk with me and said “some kid in the class has stupid nut allergies and it really irritates me that I can not send peanut butter or granola bars in my son's lunch anymore. ” Another parent immediately spoke up to point out I was the parent of the child with the “stupid nut allergy.” I took the opportunity to educate that parent, and he had the grace to apologize, but I was really shocked that anyone would feel so negatively about being inconvenienced by something so simple that could potentially save my child's life. We have no problem accommodating children with disabilities that are more visible, and no parent would complain about accommodating a child in a wheel chair, but not sending peanut butter in your child's lunch is a problem. Really ?! Quite frankly the inconvenience factor is a minor concern in contrast to preserving a child's life.
Living with a child with anaphylactic allergies is no walk in the park. You think it's hard to keep peanut butter out of your child's lunch? Try living with it on a daily basis, and being 100% vigilant all of the time. There is no such thing as simply going to an event or a birthday party or a play date for our son.
When my child wants to socialize outside of his nut free classroom or our home, here is what is involved:
- Ensure it's a nut-free environment. Absolutely no nuts, or anything with nuts as an ingredient. This usually involves a phone call prior to the event to give the parents a heads up.
- If nuts were eaten at the location, or by other people attending earlier in the day I ensure all hands are washed and surfaces where the food was eaten clean.
- Pack a lunch or snack so he has nut-free food to eat. If food is being prepared for our child, I have to ensure all surfaces, cutting boards, dishes, knives, utensils, and serving bowls are washed so there's no cross contamination. Usually we opt to bring our own safe food to simplify matters.
- Ensure the child has an Epi-pen on hand and make sure the adults know where it is (in his backpack) and how to manage it. There are simple step by step instructions on the side of the Epi-pen that takes literal seconds to review.
- Let the adults know symptoms of anaphylaxis may include: hives or other epidermic swelling, breathing difficulty, throat tightness, choking feeling, nausea & vomiting, stomach pain & diarrhea, pain or dizziness, low blood pressure, rapid heart beat, extreme anxiety, and cardiac arrest.
- Tell adults what to do an emergency – administrator Epi-pen, call 911 and tell the medicines it is anaphylactic shock, and call parents – in that order.
- Trust God.
I know the idea of a child's life being at risk is terrifying for some, and mildly scary for others, but I firmly believe that my child needs to learn how to function in the real world. We do not isolate him from other children. He knows not to accept food from others, and is very good at saying a firm “no thank you, I have allergies.”
Our son knows that if we go to an event and there are nuts present, we will need to leave and although this may be disappointing, this has been such a huge part of our life for so many years he has learned to handle the disappointment very well, and my husband and I make a concerted effort to make up for it later by giving him safe trips and doing fun family activities that do not involve allergy hyper-vigilance.
How can you best support a child with life-threatening allergies?
- Treat the child normally. Do not ostracize the child or act fearful.
- Take the initiative to talk to the child's parent and learn about the child's allergy and the appropriate action to take in an emergency. Ensure you know where the child's Epi-pen is at all times when in a caregiver capacity.
- Ensure the child has safe food available and does not feel left out at meal times.
- Double check that the environment is nut-free. Wipe surfaces clean, and have other children and parents wash their hands when they arrive.
Next time you hear a parent requesting a nut-free environment for their child, please remember that it's not just an inconvenience, you could be saving a life.