Talking Allergies

Hi gang -

A member of my support group sent me an email today looking for some assistance, and said it was okay to share her dilemma on the forum in the hopes that you all might have some words of wisdom as well. I have to admit, I do not have a lot of experience with kids not eating. I've been pretty fortunate so far on that front.

Here is what she wrote:
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I thought I would send you a quick note in hopes that maybe you would have some suggestions or could be of some guidance.

Here's the scoop~

I received a call one day from the school telling me that my son (8 years old) was not feeling well, could I come and get him. He was presently lying down in the Nurse's room. I didn't even know they had such a thing !!! They certainly don't have a Nurse.

When I got there, my son was actually sitting in the Reception area of the office waiting for me. He appeared fine but wanted to get out of there.

Once outside, he burst into tears and said he was dying. I asked him what was wrong and why did he say that he was dying. He informed me that it was a fellow classmate's birthday and that the mother had sent in some cupcakes. Cupcakes that had been bought at the grocery store.

When I asked him if he had eaten any, he informed me that he had only had a bit of the icing when the lunch monitor had told him that maybe he shouldn't have it because the package said "may contain treenuts". So, needless to say he freaked.

They asked him if he felt OK and he said that he felt a little woozy, so they sent him to the office. End of story!

Besides having with many issues about this scenario, my biggest concern at the moment is that now, my son won't eat anything! Not even when I prepare it and give it to him.

At first he wants it but then quickly changes his mind, and very quickly gets upset yelling that he doesn't want it, he won't eat it, etc.etc.

We were at a friends home the other evening and he didn't eat. He "wasn't hungry". The next morning he quite proudly announced that "I've got it figured out Mom, if I don't eat, then I'll never have to use my Epi-pen!"

He's absolutely terrified. And of course, fortunately having never experienced a reaction other than the initial one, when he was 1 1/2 years old, he doesn't know what to expect.

Any help of suggestions would be greatly appreciated. If you want to put my email out there, I don't have any problem with that either.

thanks Karen,

Nancy

(And here is part 2, with a few more details, provided after I emailed back:)

My son has always been very cautious yet never paranoid about asking about food being given to him. It's just something that he's always known to do. He's known how to use an Epi-pen trainer since he was 2 years old. Given that he may not have known how to actually go about getting it and doing it, he understood the concept and what it was for. I always felt that at least he was informed about it and that should anytime it ever have to be used, he'd understand the process and feel comforted by it. Does that make any sense ?

I really don't know what to do and I understand that the logic part of it just doesn't hold any value for him. I will contact the therapist as per your suggestion. Thank you!

By all means, you are more than welcome to use any part(s) of my email(s) to you for the Allergic Living forum. Maybe someone will have come across this in their past and have some ideas that I could apply here at home.

I don't think I mentioned that the lunch monitors that sent him to the office without any explanation to the receiving staff, were fellow students. I think that they are in Gr 5 or 6. Not too comforting when from the beginning this was a bone of contention with me that there was no adult supervision provided.

Anyhow, I don't know exactly what else to do. I understand that when people aren't directly affected, they aren't possibly as careful or cautious, however, with that being said, the classroom has always been deemed a peanut/ treenut free classroom, from day one. I can't help but feel I should be "taking it further" but I don't know to whom.

I'll let you know how I make out.

Nancy

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So... thanks in advance for any ideas you have!

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Have you read the article in the most recent issue about talking to kids about allergies? I found it very helpful. It said for example that in nearly every case where a child has died, it was because they either didn't have their meds with them, or they did and did not use it (thought it was asthma and took puffer instead). They also gave an analogy that calmed my mind a little (I don't have kids right now but I worry about having them given my family history). Think of it this way: the liklihood of your house burning down is fairly small because you take certain steps to protect yourself and keep things taken care of. But that doesn't mean you don't have an emergency plan to get out of there just in case Could the child die of anaphylaxis? Theoretically, yes. And one should not pretend it is not a serious condition. BUT there are steps one can take to protect themselves, and if these steps are taken, the liklihood of dying is fairly small.

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Asthma and eczema
Drug allergy (succinylcholine)
Food (corn, raw apples, green beans, tree nuts, flax)
Misc (pollen, grass, mold, dogs, cats)

I think getting professional help is a good idea. It sounds like the little boy is trying to take control of his condition and the only way he sees to do that is to not eat. No food = no reaction = no epipen. Maybe he might feel more comfortable if there was more education in his classroom and school community. I am sure that there has been but a review of procedures and information might bring comfort to the child. Perhaps a reassuring talk from the teacher and others in charge will help the child feel protected in his environment. He might have lost confidence in the ability of others to respond to him. Could he talk to an older child with allergies? Maybe having a role model might help him also. It might help him see that there is a life with allergies.
What a hard situation. Good luck.
Kate

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

I asked my daughter and she said that she thought about not eating anymore but realized that it was not a good solution. I think this is a typical reaction to a threat-avoidance.

I agree that he has lost confidence in others protecting him. He also has no idea of what to expect in a reaction. He may think that you eat a food with your allergen and you die instantly. (he hasn't had a reaction since 1 1/2 years old)

I would go back to eating very basic foods which he helps to prepare (don't try to eat out or at freinds homes).
Focus on what he can control (create a list of things you do to keephim safe)
Send safe treats for such times.
Link him up with other children his age who also have food allergies.
Maybe if he talks about his worries or hears from another child what a reaction is like, it will help him work through this anxiety.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Great ideas Susan. I agree that he has lost confidence and maybe feels like he is swimming around on his own, unprotected. I would let him choose what he wants to eat and give him the same basic food with which he feels comfortable. I would also make sure that the school is well informed about this situation.

I can sympathize. Although my daughter has never shown this particular behaviour, after anaphylaxis we always have behavioural issues regarding control. There is not very much information on this topic out there.

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daughter: 6 years tree nuts, peanuts

I think the procedures and processes that are currently in place may not be sufficient. and perhaps your son knows that. Anaphylactic kids are sometimes wise beyond their years.

I would set up a meeting with his teacher and the principal (at the same time )to review the procedures and processes that are in place in his classroom and the school. I would explain this particular scenario and why the existing processes lack proper safeguards. I've always found writing everything out in point form helps so you can touch on all the points you think need to be more carefully examined.

Once everything is reviewed and the process is adjusted I would explain the process to your son so he understands that there is a support system in place. I would also practice situations with him so he knows that he has a role and what he should say and what actions he should take. I would also set up a meeting with his teacher, yourself and your son so he understands that there are people there to assist him.

I think Susan's comments are really good ones. Having him involved in the preparation helps him see that the ingredients are safe and also has the added benefit of having him feel more control over the situation.

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Mary

My son went through this after he had a reaction at school. It was very hard, but he completely recovered. I wrote him a little story about strategies he could use to keep himself safe, and wrote it from the perspective of him being a Superhero, keeping himself safe. The idea was for him to focus on all the things he could do to make sure he did not have a reaction. And that if he did accidently have a reaction, he always wore his Epipen, so he would still be okay. I wanted him to feel in control again.

It took a long time. We had to be very patient and not freak out when he asked for the 10th time if something was safe.

It made me really interested in the link between anaphylaxis and anxiety and so I took a course about childhood anxiety. The good news is that anxious kids are really smart .

Here's a link to a great site:

http://www.anxietybc.com/