Talking Allergies

My 7 year old was diagnosed with peanut allergy at 21 months and has had no other incident since then. He has always been very cooperative about his allergy and its limitations and in fact is by nature a 'rule follower' for lack of a better term. Most recently he has become hyper vigilant about his allergy and even more recently quite sad and upset that he has food allergies.

Specifically, it seemed to start by him asking to read a label for a food numerous times (ie each time he had that cereal he would want the label reread); he stopped eating at anyone else's house even if the food was packaged and had the peanut free symbol on it (something that previously always gave him confidence - still does at home mind you) and he will not even eat fruit or anything at someone's house even if i pack it (fortunately he will still eat at school his lunch!); recently he started taking his Epi pen and hanging it on his bedroom door handle "in case i have a reaction at night" and then he will ask every night "what time did we eat at" as he is trying to figure out if it has been long enough that he is safe from having a reaction; just tonight he expressed his fear by saying "I am afraid that i will have an allergic reaction when i am sleeping and wake up in hospital" ( we have explained to him that this will not happened and that most allergic reactions will happen within 20 minutes); and finally he is wishing that he no longer had the allergy and really hates it (which i can completely understand and empathize with and feel confident we can work thru this part).

What i am wondering is if it is fairly common for kids of this age to have similar increased fear and anxiety? I am thinking about asking our allergist to have a conversation with him, what do you think? and the other thing i am wondering is if it comes to the point where we are not able to help him work through these fears and anxieties, is there a child counsellor or psychologist in the Victoria, BC area who is very familiar with children who are at risk of anaphylaxis?
We appreciate hearing any experiences any of you may have had with this.

TZ, Our Ottawa Anaphylaxis Support Group had a psycologist talk to our group last year. She was wonderful - specializes in allergy anxiety /she has a son (now adult) with allergies herself. I have her card somewhere and I'll PM you her name. I realize you are in Victoria but I believe she has a few books out although I'm not sure what the topics of the books are.

He does appear to be having some type of heightened anxiety right now, not sure if that is usual or not at his age. The good news is that he does appears to have a good understanding of his allergies which means you and your DH have done a great job explaining them to him. I hope someone on the forum can help you out.

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

TZ, you are definitely not alone. We wrote an article about this in the Spring 2008 issue: http://allergicliving.com/index.php/201 ... aphylaxis/

I went through a similar period as well, although I was in my late teens. In my case, it was directly related to watching my brother experience a pretty serious reaction. Since neither of us had reacted since we were very young, it reminded me that our allergies are very real and I suppose that scared me.

There is a whole emotional aspect that comes with having food allergies. While we usually become comfortable with managing them, sometimes a stressful period makes us hyper vigilant and nervous. Try to get him to open up to you. Talking about it can make a world of difference

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Associate Editor at Allergic Living.
Allergies to all nuts and legumes except soy and green beans.

Is it possible for him to go to event where there are other children with food allergies?
It made a huge difference for dd when she first met others. It's good for kids to see other kids who are living and thriving with food allergies. Maybe Kyle Dine can do a concert nearby...

Help him see all the things that you and he do to keep him safe. Help him see that in these ways, he is in control, not the allergy.

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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

Thanks Lisa for reminding me of that article - fortunately i keep all of my AL mag's as i knew the various articles would come in handy over the years! From the article, it sounds like it is very much like the anxiety and more in depth thought is in keeping with his developmental stage.

Susan, thanks for the idea; we are "fortunate" (okay not quite the right word) that we have many friends with food allergies both adults and children so he has some very good role models and sees people at various stages in their lives with various allergies living and living well.

I also think that i may have him chat with our allergist or family doc just so he can get the "professional opinion" about some of his concerns. and BC2007, would love name of the psychologist and her book names - thanks.

I do appreciate everyone's experiences and thoughts!!! The great thing about this forum for sure! Thank you.

I think it's normal for our kids at this age to recognize the life threatening aspect of allergies and worry about death. I think it's normal to notice how different they are from "normal" kids.

Our daughter went through a period where she kept mentioning how she would die if she ate one of her allergens. I eventually had to say to her, "Dead...Epipen. Dead..Epipen. I think I'd giveyou the epipen!" Allergies do not necessarily mean a death sentance if you are prepared to take precautions and, in the event of a reaction, act swiftly.

On being different: Everyone has something to overcome. True, a life threatening allergy is a big thing to have to deal with but so is any disability or a disfunctional household. Dwelling on how hard we have it is fine for forums where we come to learn, relate and support each other. In real life, it can become a weight. Focusing on how strong we are and what we have is a much better way to manage the day to day. Sure, we can't share in the birthday cake but, we can bring something to eat and have fun anyway! Food does not make the party, friends do.

These may not be the issues affecting your son but they were the issues afecting our daughter at that age.

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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

I think Susan has made great points before too about teaching children about all dangers. Just as how we teach our kids to cross a street or to stay away from water. Realistically you could die from any such event but we don't say that to our kids. Susan pointed out to me once that allergies apply the same. We can instead say if you look both ways for cars you can cross safely, if you wear a life jacket and wait for an adult you will be safe. I like that thought process, (amount of info. of course depends on a child's age). As we begin to really teach DS about his allergies I try to say things like 'we take these precautions to make sure you are safe so you don't get sick...if you do get sick we will do this ____and that will help you to be ok. '

This of course might not take away a child's natural developmental stage of anxiety etc. but Susan's advice gave me a good starting point for how to approach teaching about allergies.

TZ, I really feel for your son. At his age now the reality of his allergies and consequences (reaction) must have really sunk in. You're a great mom for really listening to his concerns and addressing them. No matter what the issue in life it sucks if a parent downplays any fears/concern as trivial or silly. By posting you also help parents like myself who are not at that stage yet. I learn a lot and pay attention as it all will hopefully help me as DS gets older.

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

Many of your comments about your son sound like my daughter. She is a teen now but has gone through various levels of frustration and anxiety. I realized that I was causing some of that anxiety but my actions and I had to learn to lighten up --- not to jeopardize her safety but to just lighten up and not let my anxiety affect her. It's tough sometimes!

She thought that if she used the epipen wrong it could kill her. Didn't learn that she thought that until after we did have to use it and she saw how much it helped! She had carried an epipen for 6 years and for much of that time worried about it.

We talk about everyone's challenges and try to focus on all that is easy for her.

School can be tough too if others are saying things or when there is food at an event --- sometimes my daughter gets really tired of 'being different'. One time, at age 7, my daughter had her epipen taken away by another student and then the kid waved one of her allergens in her face (no reaction). That is a really tough thing for a kid to deal with and she didn't tell me for months. Sometimes I have to push and push for her to tell me something as she doesn't always open up but by her actions I can usually tell when something is bothering her.

Now she loves to cook which we do together often.

Sometimes, I let her have a little pity party and then move on. It's tough for us parents too!

May not have helped whatsoever but want you to know there are parents who understand and feel for you and your son. Take care.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental