Talking Allergies

Hello all,

I am so excited to have found this forum! My backgound - 3.5 yo DS is allergic to eggs, tree nuts & fish. (sadly, sardines were his favourite meal until he was dx'd at 2.5 years of age!). Up to this point, we have not had to use the epi-pen - benadryl has always done what we needed it to do. I know that there's always a first time to go ana, however. We have 4 epi-pens - one at daycare, one in my purse, one in his backpack and one at home in a carry-case so it can be easily grabbed by DH if he's going out with DH, yet it is accessible in a kitchen cupboard.

I've been struggling with the question of when to have him start wearing his epi-pen. He starts JK next year and the school has a good system set up. Generally I think it is safest to just wear it all the time. But I feel that he is young to have to do this, as long as I am confident there is always an epi nearby. Eventually he will have to be wearing it all the time, though, when he gets older and is out int he playground at recess (instead of in the little play area for kindergarten). So I will need to get him used to it.

I guess another part of the puzzle is that he wears glasses (he has lazy eye) and sometimes when we go out he wears his eyepatch. (we need to wear it 5 hours/day, and I try to get those hours in at home but sometimes it doesn't work that way). So I feel he's kind of conspicuous already, and I don't want to add to it by having the epi-pen if it doesn't need to be done yet.

Any advice?

Andie

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DS: 3.5 yo, tree nuts, egg, fish

Remember that he can wear it under his loose T-shirt. It doesn't have to show.
Our daughter started to wear it just to school. We went everywhere thatshe went so it wasn't necessary before that. She didn't like it but I told her she had to.

She is used to it now and usually wears it when ever we are out of the house (unless it's a quick run to the store in which case I have the fanny pack with 3 in it and she is with me the entire time.

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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

Hi Andie,

Welcome to the forum, glad you found us.

Here's one thread where parents discuss Epi-wearing, and I'm pretty sure there are others:
http://www.allergicliving.com/forum/vie ... ght=epipen

You can do a Search by keyword - click on the red "Search" word (next to the magnifying glass) up under the "Talking Allergies" header.

Good luck with your decision.

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Allergic to soy, peanut, shellfish, penicillin

Welcome Andie!
My son was diagnosed just before his 3rd b-day and he began to wear his belt almost immediately. We tried to make it a special thing for him by allowing him to help "choose" his belt and we would excitedly check the mailbox for it until it arrived. It took a few reminders and explanations as to why he needed to wear it, but I really wanted him to get used to wearing it before he went to school. My son too always wears it under a loose fitting shirt (it is not obviously visible). I would strongly suggest (my opinion) your son wear one as soon as he enters school ( start practising on a full time basis the summer months before school starts) as there are many times throughout the day when he may not be with his classroom teacher, or "near" his epipen (the library, lunchroom, gym, assemblies, recess etc) there are so many things on a teacher's mind, that they may not always be thinking of grabbing his epi on the way out (even during a fire drill)...I think it is just best to have it on his body at all times, so that no matter the situation, he has his life saving meds with him!
I noticed you mentioned using benadryl...I would check with your allergist about using it, as it can often mask the signs of an anaphylactic reaction.
And remember don't worry about your son being "conspicuous"...people stare if your kid is loud, people stare if your kid is cute, so I say just let them stare!

Ang

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6 1/2 year old son - anaphylactic to tree nuts, allergic to dust and moulds
5 1/2 year old son - no allergies
15 month old son...allergies unknown

Hi Andie, and welcome!

Our son started to wear his Epi-belt at age 3.5. He wore it over the summer in order to get used to wearing it all the time in preparation for school. He had no trouble with it at all, and didn't even pay attention to it. I found that he was becoming a lot more active at that age, and he would spontaneously decide he wanted to go for a ride around the block (with mom or dad, of course), so it was necessary to always have the Epipen on his body. Our son is very accepting of these types of things, however, I think it would have been a lot different if our daughter had been the one wearing the Epipen... she is much more curious and likes to inspect everything. I don't know if she could have managed wearing it at such a young age. It really depends on the personality of the child, but the sooner they can wear it, the better. They will object less if they begin wearing it early.

By the way, our son also has strabismus (lazy eye) and has had 2 eye surgeries - the last one was in November last year. He also had to wear an eye patch, and you're right - the eye patch is pretty conspicuous! He got MANY questions from all kinds of people about his eye patch, but almost no questions at all about his Epi-belt. His Epi-belt is always hidden under his shirt, so it's very rarely noticeable. By the way, since his second surgery, he doesn't wear the eye patch anymore! Does your son hate the eye patch?? My son HATED it! But the Epi-belt was no big deal for him at all.

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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

My DD started wearing her E-belt when she was 3. She started school when she was 3.5yrs (Dec b-day) We started her in the spring when we ordered it. Made a big deal about it coming in. We'd check the mail together, etc. She'd wear it whenever we left the house to go somewhere. She also wears it under her shirt. Sometimes she'll wear it over her dress, but we allow her to wear it under a dress as well. Her rule though is that if she wears it under her dress she has to tell the teacher right away that she has it on.
Now sometimes we'll forget to take it off when we come home. It's just part of her life.

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4ye old DD allergic to sesame, peanut, raw egg , and mulitple environmental & seasonal allergies

2 yr old DS -no known allergies!

Hi
I agree with the previous posts. My daughter is now 8. She started wearing her epi belt when she entered JK. She and her friends have never opened it. By wearing it right on her I know that there will never be an issue with it epipen being in the wrong place at the wrong time.
Remember that many of the deaths from anaphylaxis occur when epipens are not accessible fast enough. We have seen Lauren in anaphylaxis and you have to move fast!
I agree with the previous post query about Benadryl. Our allergist instructs us to NEVER use it as it masks a reaction. If we see signs of allergic reaction we give her the epi-pen - there is no risk in giving it to her but huge risk in not giving it to her.
Kim

Hello all,

Thanks so much for your responses!

Susan - good point about the epi fitting under a T-shirt - do you know, I hadn't thought of that?

Gwen - thanks for the link to the thread - there are some neat options for epi-belts out there. And I really liked the image of the belt being a ready-made scabbard for pretend swords

Ang - I appreciate you sharing your experience - the points you make are exactly why I've been thinking it would be best for him to wear his epi, and an approach to get him (hopefully) excited about it. Also that's a good point - that kids will attract attention for different reasons, and allergy may be in the mix but so are other things.

Julie - it sounds like your son has adapted very well, even though he's quite young. I do wish you didn't have the allergy & strabismus combination that we have, but I have to say it made me feel like someone out there understands! We are using patches & glasses for now and may not need surgery - only time will tell. We are patching 5 hours/day. I think my son looks alot like the young Harry Potter in the first movie so cute! (well, I may be biased ...)

Mygirlsyd - thanks for sharing your experience - I'm getting this theme of involving the child from the time of ordering onwards ... it makes me feel better to have an approach to follow.

Kim - we have never actually experienced anaphylactic shock, so that is one of the unknowns. I'd be quite happy if it stayed an unknown, but since I realize you can just never know how things will go with allergy and a big reaction can happen suddenly - I do want the epi easily accessible always.

So in summary - I'll be moving ahead with the wearing of the epi, starting with the ordering it strategy. I think one of the big challenges is I have to keep reinforcing to myself that this is an empowering tool, and not a burden. I know this but it's still something I struggle with.

Cheers,

Andie

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DS: 3.5 yo, tree nuts, egg, fish

We're in the market for a belt for ds, who's starting pre-k in the Fall...

I'm just curious to know if anyone uses the Medic Alert "Single Auto-Injector Belt"
https://www.medicalert.ca/en/products/l ... p?typeId=2

or if you all have the E-belt. http://www.ebelt.ca/products.asp

Just trying to pick the right one to last! : )

Marla

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*Son, 5 years old: Asperger's, allergic to eggs, peanuts, and mustard seed (outgrew dairy and soy)
*Son, 23 months old
*Hubby: allergic to cats and trees (non-specified types)
*Self: allergic to penicillin

I've had very good success with koziepi. Lots of styles and light.

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daughter: 6 years tree nuts, peanuts

We have the MedicAlert belt. I think it was slightly cheaper than the other available brand when we purchased it.

We're happy, I don't see much difference in the two. Our daughter has worn the same one for 3 years now, with it's stood up quite well.

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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

They are the same thing - except the MedicAlert version has the big MedicAlert logo on it. So I would buy whichever one is cheaper! You can also buy the EBelt from Anaphylaxis Canada, so check their prices as well.

They last quite awhile, although my older son's is wearing out at one end and will have to be replaced soon. But he has worn it almost every day since kindergarten and is almost at the end of grade 4. He even wears it on weekends if he is going out somewhere, and during the summer for daycamp. So that gives you an idea of the durability - 5 years of hard use.

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

Our son has worn his E-belt for 3 years, not missing a single day of wear, and it still looks nearly new!! He's going to outgrow it before it wears out. We are VERY pleased with the E-belt.

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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

Thanks for the replies! I've just ordered a belt from Medic Alert.

Great question - thanks for the replies! I think we'll be ordering an E-belt too, following the great advice of involving my son as much as possible and trying to get a positive buzz going on about it.

Andie

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DS: 3.5 yo, tree nuts, egg, fish