Talking Allergies

I know there have been a few of us lately with little ones who've had ana reactions. We have a trainer and a twinject trainer too which my DD found this weekend. She of course asked what it was and marveled that it is like the epipen but has no needle and no medicine.
It turned out to be a bit of a blessing for us so I thought I would share. Of course every family and every child is different, so it may not be a suitable idea for all.

Since she found it, we have practiced epi administration. We've been exceedingly careful to let her know it is a practice one only and pointed out the differences with real epis. As soon as she wanted to try, we discussed the types of things we could feel to know we need an epipen (tongue hurts, swelling, hives... the stuff on the "Think FAST" poster). Then we've held it together and practiced on thighs. Once we hear the click, we count out loud to ten. We then grab the phone and she has dialed 9-1-1 and pointed to the button on our phone that you'd hit to make the call. Then we have a mock call, saying that we need an ambulance, have had an epipen and give our address and phone number.

I am not crazy, I would never expect her to be able to do this at 3-1/2 in the event of a reaction but I think that it has been very positive for her to talk about reactions in a non-stress situation when the ambulance does not really get called. She's learning and ultimately she does need to know.

She's so calm - I think for our DD it is helping her make sense of things, which in turn is helping my anxiety (in a very small way but I'll take it!)

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

Letting your child practice is a great idea. It also gives them an opportunity to ask questions or express fears/concerns. We do a refresher course before school starts each year.

This year (for the first time) my son actually used an expired epi-pen into a fruit. I think it was just after he turned nine. And, like you, I don't expect him to self-administer at his age. But, when we were asking a teacher to show us that she knew how to use the epi -- afterward he said "But, you forgot to hold it in and count to 10". So, his knowledge could make a difference in an emergency.

Glad to hear your daughter is not afraid of the trainer. My son was at first.

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self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

We've had a trainer since my son was first diagnosed at around 2 yrs. too. Since then, we've had him practice with it and "play" with it. Over the years we've acquired a couple and also got the Twinject trainer and he's claimed one for his own and actually has it in his "play" medical stuff. It's been a great way to talk to him about his allergy and discuss why we take the precautions we do. We're also really clear with him that they are "practice" or "play" epis and that the real one has medicine and a needle (not to be played with).

I also think it's a good idea for little ones (age 3+) to practise with a trainer and lose any fear they might have over being around it, plus they will get used to the fact that it is not a toy. Of course, we would not expect them to self-administer, but when children enter kindergarten in the province of Ontario, schools want children to wear their Epipens, so it's a good idea to get them used to being around a trainer and realise it is not a toy. The summer before our son began JK last fall, he wore his Epipen in the Epibelt in order to get used to wearing it because we knew the school wanted him to wear his Epipen at school. He never, ever played with it, and when he started school, the principal and I conducted presentations to all the classes, showed our son's Epibelt, and ensured all children were aware that this was not a toy, and it was not to be played with, or pulled out of the container, etc. But we wanted to make sure they had all seen it, were aware of it, that it carried special medicine in case of an allergic reaction, and that was it.

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

Julie I agree that the epi-trainers aren't toys, but I also feel that it's important to allow children the freedom to investigate, and learn through play. I think there is a difference in letting your child run off with an eip-trainer to play with it and using it as a teaching aid through play. Each parent has to consider their child's personality and comfort level. My son has also started wearing his e-belt in preparation for JK this fall and when he first received it, we allowed him the time to look at it and investigate it with our supervision. We clearly explained that his epi-belt carried real epinephrine and not a trainer, that if anyone ever asked him about it or asked him to see it, he was allowed to tell them all about it but that only an adult could ever open it up in an emergency. While I understand that this approach might not work with every child, he's been great, it's not been an issue for us.

I'm so glad to hear others have had such positive experience with their kids playing with trainers too!
ethansmom great explanation about the belt and starting it in advance. I also really like the adult-only emergency rule for the real epis in conjunction with being able to tell about the epis but not play with the real ones. So much responsibility for our little ones!
We're keeping our DD at her daycare centre for JK - they've been successful with her and run a curriculum based JK full day, so why mess with something that is safe and working?! Still, next Sept it will be SK at someplace new.

For those starting JK/SK, I can't wait to read any advice and you have! Although we've finally settled on our JK situation, I am already of course thinking about "next year" (hey, have I mentioned that I am trying to work on my anxiety?!)

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

My son is 6/ 1/2. So far (thank God) we have not had to use the epipen.
Today at at the allergist's (where we discovered another allergy - new thread) we saw the trainer and I showed him how to use it. He was quite pleased to be thought so grown up and very serious to try it out. (Also nervous there might be a needle!)

At school this year (he was in grade 1) there was an older boy in the bathroom who always wanted to see what was in his epibelt. I finally went to the principal. She immediately went, took my son and found the kid and spoke to him. The only other problem was someone at the caregiver's. He kept asking to see it. I finally told him it was okay to yell for an adult if someone tried to open the epibelt.

All the little things these poor kids get saddled with. Sigh.

It is amazing how a little knowledge empowers us all.

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Self- allergies to penicillan, sulpha, environmental
DS- 10, allergic to peanuts, tree nuts, sesame and chick peas (who'd a thought?)
DSecondS - 8, none!

stefteach, I was looking for your post re your son's newest allergy, but I couldn't find it. I assume it's the chick peas added? I'm not sure, but aren't they a legume -- and therefore related to peanut? (Sorry for going OT.)

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self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

stefteach - I've never even thought of the risk of others having that interest in the epi-belt. Sigh, at least interest can be turned into learning...
Sorry to hear you have another one to add to the list. I hope it doesn't mean significant diet changes? How did your little guy cope on learning about a new one? Good luck - positive thoughts are with you.

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

Was going to PM but server was too busy (Sorry in advance

He was diagnosed with sesame allergy last summer after a scare with hummus.
To be safe, this year we tested chick peas.
Chick peas.
Who would have thought... :roll
So I will start a new thread and look thru Other allergies to make sure there are no 'hidden' chick peas in the few foods he will consent to eat.
He is not too upset - "I don't eat chick peas anyway." But the implications for me are more far reaching.
Thanks for caring!

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Self- allergies to penicillan, sulpha, environmental
DS- 10, allergic to peanuts, tree nuts, sesame and chick peas (who'd a thought?)
DSecondS - 8, none!

Eek! Farewell fair food from Italy, Spain, Mediterranean and India I would think that you've got to watch for things like flour too? Perhaps someone on the board can give you advice on most closely related legumes?
I know the frustration of non-priority food allergies. I was extremely when sesame was not prioritised... (still isn't in US)

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

It's not that you have to say farewell to all those foods - at least not if you are cooking at home. You just have to avoid chickpeas and find subs. I would aim for "glass half full" thinking here - at least you know about the allergy and found out through testing and not because of another bad reaction, right?

Plus I don't know of that many foods that have chick peas hidden in them - my son avoids all legumes and there is still lots of stuff left for him to eat. (Not that he will eat it all, but he is getting better!)

Did the allergist say to avoid all legumes? Or just chickpeas? I'm assuming just chickpeas from what you wrote. It really does seem to depend on the person - some have to avoid all of them and others only have to avoid certain ones. Obviously you might want to keep an eye on other legumes, but I would not rule them out just because he is allergic to chickpeas.

Maybe if you list the things your little guy will eat, we can help pinpoint potentially problematic foods.

As for flour... unless it's chickpea flour, which is not very standard, I think you should be okay, no? We've never had any issues with flour, even with all we are avoiding (except of course when we were avoiding wheat!).

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

I didn't mean to be a downer and was thinking more from a eating out perspective. Also, was concerned about getting good information when chick pea isn't "prioritised". I got so frustrated with the standard responses from companies before sesame made the magic list.

We all know that a big part of coping is CREATIVITY

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts

honestly - not worried about chick peas per se
he eats out at Wendy's and Swiss Chalet - and usually take out
just in case

Did not stay to stay clear of other legumes
And am VERY happy we did not have a reaction other than via skin testing
Was thinking this morning that I much prefer minor reaction from eating followed by confirmation from dr thru skin testing than epipen emergency visit. I do thank God for these favours he has given me!

Food he eats that may be contaminated - not too worried. I make meatballs, chicken fingers etc. all from scratch. I do, however, hate fish and buy breaded filets for them to eat. Will check them out carefully.

I am just upset that with the advent of another allergy the chances of out growing them are slimmer. SIgh

once again my allergist recommended the OASG, Karen. I really must get out sometime. Problems of being a single parent...

Once again, you are all making me feel better.
thanks
Stefanie

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Self- allergies to penicillan, sulpha, environmental
DS- 10, allergic to peanuts, tree nuts, sesame and chick peas (who'd a thought?)
DSecondS - 8, none!

Hey... wait a minute... do you mean that every time we have to add another allergen (regardless of severe food or hay fever) that there is LESS chance of out growing any of them? I don't like learning these things and this is a new one to me...

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renie
daughter: ana for egg, sesame, dairy, pistachio/cashew/hazelnut. allergic on contact. allergic to soy protein isolate. other lesser allergies (e.g. dogs, dust mites). well controlled asthma. eczema.
son: p-p-p-p-peanuts