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Son just diagnosed with peanut allergy

I wasn't sure where to post this, but my son, who will be 5 in June was diagnosed with a peanut allergy and tree nut allergy today. He has had eczema and environmental allergies since he was a baby. He had a skin test when he was only a year old and it did not show any food allergies. Right before Christmas he had an allergic reaction. He was eating dinner and his lips swelled up. We thought it was probably from the pecans. I finally got him in with an allergy specialist today. She did the skin test and he is allergic to peanuts and all of the tree nuts they tested for.

I am feeling very overwhelmed right now. She gave me some info, but not much. I know to read labels on EVERYTHING and I have 2 epi-pen jrs. What else do I need to know? She didn't test for coconut or sesame, should I be concerned about those? How do we handle going out to eat? Birthday parties? Public places? What if there is a kid at the children's museum who eats a peanut butter sandwich for lunch then goes and touches the toys without washing his hands? She didn't give me any idea how severe the allergy is. Can smelling it or touching it cause a reaction?

By minifigME on Fri, 03-08-13, 10:38

Hi EmilyAnn. Please know that you are not alone, we have all been at that first frightening day and that there is support to be found here. Also know that this will be the hardest thing you ever have to face as a parent. You will have to stand tall to protect your son and be hyper-vigilant at nearly every turn in order to keep him safe... and it's not an easy task. You will need to grow thick skin as you will be confronted with ignorance and sometimes even anger from adults, teachers and other parents (who you will think should know better) on a regular basis in a world that does not, and possibly cannot, truly understand what it's like to have a peanut allergic child.

The good news is that there is real hope that more and more PA kids will be able to access treatments that will cause them to be able to be non-reactive if they accidentally ingest a peanut. My son Ian has been in an out-patient oral desensitization clinical trial at Stanford Children's Hospital for the last 16 months under the care of Dr. Kari Nadeau, an unbelievable advocate and groundbreaking researcher who has devoted her life to saving our kids. Please everyone who gets a chance to, take a look at the article out in the NY Times Magazine just yesterday at: http://www.nytimes.com/2013/03/10/magazine/can-a-radical-new-treatment-save-children-with-severe-allergies.html?pagewanted=all&_r=0

My son is in the (extremely accelerated) Xolair portion of the trial and so is now at the point where he ingests 17 peanuts a day as part of his regimen and is doing very well. When he was tested at the start of the program he had a reaction at only 1/60th of a peanut. The relief is beyond comprehension and we are grateful beyond what words can express!!

You will learn the drill pretty quickly here. Carry an Epi-Pen (and a back-up) at ALL times. If you leave the house without it, go back and get it. There is no such thing as being too careful. Read EVERY label. NO sharing food with friends. NO eating anything that you can't read the ingredients on. NO eating anything that you as a parent haven't checked. Many foods made out of the country are not required to list allergens so we avoided those also. When eating out always ask, then ask again, if the restaurant can't give you a definitive answer, don't eat there. With my son if he touched anyplace that peanut butter had been he would only have a skin reaction of redness/swelling but no trouble breathing, eye watering, itchy throat or pain in his stomach, *Please note that this is totally dependent on the severity of your child's allergy, (my son was a class 4). You will want to have him tested. Your doctor may tell you "it's not necessary" and to just "avoid" peanuts but push it through, you'll want to have that information. I know you are overwhelmed at the moment and many of the people you know just won't get it. But if you are always your son's advocate, even when it's uncomfortable... he'll be ok.

Also please know that hope has reached beyond the horizon and is now available (not yet easily) but available nonetheless to our PA kids. Five years ago it was just a dream but a "cure" has become a reality. I wish you peace in the days to come, it's a new life you are entering into hand-in-hand with your boy, he'll take his cues from you, so be strong!
Take good care, Taylor

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By jamiemiddddleton on Thu, 03-07-13, 19:55

God sake you Americans over think bloody everything. Theres no need to be so para about it so stop molly-coddling your poor child. I'm 16 and have had a BAD peanut allergy my whole life and if your son reads labels then he'll be fine. If you do it all for him then by the time hes a teenager he wont be able to do it himself. I suggests you stop being stop whinny and para and let him deal with it because then he will become accustomed to what he can and cant eat and he wont if you do it all for him. Dont deprive him of birthday parties that'd be pure wide just tell the other peoples parents or something. I seem to match up identically to your description of your boys other allergies etc... and i am allergic to coconut so yer wayne could be to. I suggest carry piriton and use that for everything including peanuts and for peanuts if thats not enough then use epi-pens. I am also allergic tae pulses e.g. lentils, chick-peas, peas but just dont get so para about it, its no that bad.

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By Cali1530 on Fri, 03-08-13, 00:46

That seemed like a rude response Jamie - I am in fact Canadian, not American, and I would say Canadian are in fact much more cautious than Americans in general about allergies, that's a good thing. I say being BETTER SAFE THAN SORRY has nothing to do with being paranoid.

Thanks for the friendly advice..

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By Sarah McKenzie on Mon, 04-08-13, 14:58

Well said !!!

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By Cali1530 on Thu, 03-07-13, 00:51

Hi EmilyAnn - I know how you're feeling!

Personally I am anaphylactic to Peanuts and ALL Tree Nuts, I have never been allergic to Coconut or Sesame, however allergies differ a lot from person to person, so if son has not been tested to these or exposed, I would get him tested before feeding him anything like that.

Going out to eat is, interesting, although most restaurants are getting a lot more knowledgeable about Food Allergies since they are only increasing in numbers, however not all are there. My rule of thumb is, if they have lots of nuts on the menu, or if the server/managers don't seem confident in what they are telling you, just not eating there is easiest. There are usually other options available.
Birthday Parties and public places are difficult for a child, when I was young, I was 'trained' very well to not eat anything my mother didn't already check or didn't pack for me, this may just have to be the way it is until he is old enough to know well enough for himself to read ingredients. There are also varying degrees of allergies to PB smells etc. I have passed out when in the vicinity of peanut butter and learned to simply walk away from it, he may have to as well if his is this severe.

It can definitely be overwhelming (I still am sometimes as well), but is a livable situation! Feel free to write back with any other questions or if I missed some, or if you are on Twitter you can ask me some questions there as well, I check that much more often at @california1530.

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