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PostPosted: Tue Jun 08, 2010 6:41 pm 
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Joined: Sat Nov 24, 2007 10:03 am
Posts: 37
Location: Ontario, Canada
I know this sounds like a really stupid post. But here's the shortened history.

My son is 3.5 and will be going to school in September.

He 'used' to have anaphylaxis to dairy, he used to have an egg and fish allergy, he no longer has these allergies and has passed food challenge.

Yesterday he was prick tested for peanuts and nuts- he passed. I started giving tiny amounts of peanuts yesterday with no problem(doc told me to go ahead)- let's assume right now that he does not have an problem with these for the sake of this post.

At the allergist yesterday, I was told that he should still be carrying 2 epipens as we think there is an allergy of some sort right now- except we aren't sure what it is. The doctor is ordering the serums for food colouring and preservatives as he has had 4 minor reactions (?) that did not involve breathing trouble. It was a rash around the mouth (blotchy) to processed cheese, processed butter sauce, pudding (it was a no-name, add milk and whip- eats snack pack ones without problem) and processed mac and cheese bake (this one was full body rash, however was receiving IV antibiotics at time and had had a fever in the days prior) (eats Kraft Dinner fine).

He also has cold urticaria (ice cream is a culprit, but can swim in cold water fine), the allergist said that he can continue to eat ice cream.

He also has dermagraphism (skin writing, sensitive skin)- non life threatening, of course.

He also has oral allergy syndrome which doesn't exactly follow the text book definition (according to the allergist)- he tends to get the rash around the mouth moreso during hay fever time, but not always to all the typical foods of this disorder (apples, pears etc)- he sometimes gets a rash to other things(with negative allergy tests and eats fine the next time). So perhaps all his processed foods reactions were possibly oral allergy syndrome.

So, the question is, should he wear a med bracelet and what the heck should the information be?????????

There is nothing really concrete unless the preservatives, colouring allergy comes back positive (we won't know for a few months).

When someone asks me what he's allergic to, how can I explain this in a 'shortened' and 'not a paranoid mother' way?? I'm not a paranoid mother, but you know how others that do not deal with this are..

Should I just have his information as 'carries epipen, high risk for anaphylaxis' ??

Thank you in advance..

Also, what is the best way to deal with the school? The last thing I want is for the teachers to be nervous to have him, you know, without any rhyme or reason to his reactions.

_________________
4yo ds: Finally!! Milk and Latex allergy. Preservative sensitivity. Asthma. Hay fever.
6yo ds: Hay fever, ADHD, asthma, penicillin, azithromycin, cephalosporin.


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PostPosted: Tue Jun 08, 2010 10:50 pm 
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Joined: Tue Jun 26, 2007 2:45 pm
Posts: 807
Location: Vancouver, BC
Wow, that's complicated! I don't think there's harm to him wearing a bracelet, and the wording you mentioned sounds good.

Regarding teachers, I would probably explain that the doctors are still trying to figure out some of his allergens, but he doesn't appear to have any life threatening ones. Ask that they only give him food that you have provided, and give them benadryl for mild reactions and an epipen in case for a severe one?

_________________
DD 2004 Allergy to peanuts, egg, sesame, and new: lentils and chick peas
DS 2006 Allergy to peanuts, tree nuts, milk, egg, kiwi fruit, eczema


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PostPosted: Wed Jun 09, 2010 6:56 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6491
Location: Ottawa
How did your allergist describe it? If he has a need for an auto injector, he has a need for both a bracelet and an anaphylaxis plan.
Not having definative allergens does not put him at a lower risk, it increases the risk because you don't know what to avoid. Potentially, anything new could cause a reaction.

Regarding the bracelet, call the MedicAlert company and speak to someone there. They are experienced in what to describe on the bracelet.

Regarding the school, I would simply state that he is at risk of anaphylaxis and is under investigation by his allergist as to the exact causes. Do you have a written report from the Allergist? This can be placed on the school file.

In order to not appear as hysterical (in the schools eyes), it is important to have both parents (if possible) present a united front. Try to be objective (fact based) and not subjective (opinion/interpretation) give evidence. http://www.differencebetween.net/langua ... ubjective/
Decide what it is you want to discuss in advance and stick to those topics. When setting up the meeting, include the rationel and the key points. This is a casual way to create a meeting agendaand allows the school to organise their information so that neither of you waste time and few issues will be placed on the back burner.
Ask the school to explain how they plan to keep your son safe. This allows them to demonstrate just how much they know and it shows them that you respect their professionalism. Itgoes a long way to keeping the tone one of respect and cooperation. You want them to be partners in your sons future and not adversaries.

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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


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PostPosted: Sun Jun 13, 2010 11:55 am 
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Joined: Sun Oct 08, 2006 10:53 am
Posts: 207
Location: Winnipeg, MB
Alison's Mom - I'd be careful about giving advice such as "give Benedryl for mild reactions . . .". Some medical professionals caution against this as it could mask other sympoms.

FourFallBabies - In your circumstance I would have a bracelet for my child. My experience is MedicAlert will not coach you on wording (liability). My recommendation would be "Multiple Allergies & Sensitivies. At Risk for Anaphylaxis. Carries Epipen."

If he's having a reaction, it doesn't really matter to the medical responders to what - just that he's reacting and Epi shoudl be nearby.

Hope you get answers to your son's issues.
M

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adult son allergic to peanuts, most tree nuts, eggs and penicillin.


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PostPosted: Mon Jun 14, 2010 12:43 am 
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Joined: Tue Jun 26, 2007 2:45 pm
Posts: 807
Location: Vancouver, BC
mharasym wrote:
Alison's Mom - I'd be careful about giving advice such as "give Benedryl for mild reactions . . .". Some medical professionals caution against this as it could mask other sympoms.

Yes, I've heard of some allergists advising against using benedryl, and I would fully agree if the person is seriously allergic to one food, and when there is a reaction, it's almost definite it was because of contact with that one food. However, the OP said her son has had several instances where there was a rash around the mouth, and there is uncertainty as to what he is allergic to. If it were me, I wouldn't want my child getting injected with the epipen every time there is a mild rash around the mouth, or hives in other areas especially since there is cold urticaria. Our allergist has advised us to give benedryl with a mild reaction and the epipen for anything beyond that, or if there is any doubt. It might make a difference that my children have mild reactions to some foods, and serious reactions to other foods. If they are at school, and it is unknown what is causing the reaction, I would not want the epipen given to my son should he come into contact with dairy, as he is only very mildly allergic to dairy, for instance.

OK, I'll amend my advice to say "Ask your allergist what advice to give the school"

Also, I agree that medicalert's coaching on bracelet wording was not helpful. The 2nd time I ordered, I decided in advance what I wanted it to say and just told them to use my wording. There is also a difference in what wording is helpful to a paramedic VS what is helpful to a teacher or other adult who is checking the bracelet.

_________________
DD 2004 Allergy to peanuts, egg, sesame, and new: lentils and chick peas
DS 2006 Allergy to peanuts, tree nuts, milk, egg, kiwi fruit, eczema


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PostPosted: Mon Jun 14, 2010 12:58 pm 
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Joined: Sat Nov 24, 2007 10:03 am
Posts: 37
Location: Ontario, Canada
No worries about any post, I'm just grateful someone responded :)

I appreciate all advice.

And yes, I've been to the school trying to describe when to use Benedryl and when to use Epipen.

So very frustrating, so very confusing.

And he has a bracelet now and is getting a new one from medic alert. Disappointed to hear that they are not too helpful with the wording though..

Thank you.

_________________
4yo ds: Finally!! Milk and Latex allergy. Preservative sensitivity. Asthma. Hay fever.
6yo ds: Hay fever, ADHD, asthma, penicillin, azithromycin, cephalosporin.


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