Peanut allergy - advice?

[dizcrazy]

I searched and found some threads about how accomodating Disney is with children who are allergic to peanuts. (and how some airlines are not so accomodating!)
I never really gave much thought to this issue, like most people, until it hit home. And hard. DD (3) just touched some peanut butter and broke into hives. I raced her to the tub and gave her benadryk and she was fine about 30 minutes. However, I've read the next exposure could cause a more severe reaction and that has me really freaked out.
We are taking her to an allergist tomorrow and hopefully she will be tested during our first visit.
I know I need to keep her away from nuts and to read ALL labels but . . . do any Dis'rs have advice for me? Any internet sites with information about the tests they do, what the levels mean, about epi-pens . . . .
I am overwhelmed and need to some help. Thanks

 

[Christine]

Go to www.peanutallergy.com. They have good discussion boards there. You will find many different "perspectives" there--some people are EXTREMELY vigilant and others have a more relaxed attitude. Take it all with a grain of salt until you get your own comfort level. But there is a lot of educational info on there.

My son has a peanut allergy (he is almost 12). Believe me--it can be very easy to manage once you get used to it.

 

[Lisa loves Pooh]

Oh my--I hope they take care of her right away.

I had a peanut allergy kid in my class (he was 4)--but he could eat other nut butters. So on a day when I had planned to use PB--his mom just brought Almond Butter for him (I had inquired with all parents regarding allergies and even said I would use something else and she said I didn't need to and she would just bring something for him). He was able to be in the same room--his allergy seemed to mostly be in the consumption. She was surprised to find out that Peanuts are actually legumes and not nuts...b/c she thought it was strange he was allergic to just peanuts and nothing else.

So when you have your daughter tested--have her tested for all nut allergies in addition to the peanuts. Some kids are allergic to all-but some aren't.

Best of luck to you!

 

[Christine]

Oh my--I hope they take care of her right away.

I had a peanut allergy kid in my class (he was 4)--but he could eat other nut butters. So on a day when I had planned to use PB--his mom just brought Almond Butter for him (I had inquired with all parents regarding allergies and even said I would use something else and she said I didn't need to and she would just bring something for him). He was able to be in the same room--his allergy seemed to mostly be in the consumption. She was surprised to find out that Peanuts are actually legumes and not nuts...b/c she thought it was strange he was allergic to just peanuts and nothing else.

So when you have your daughter tested--have her tested for all nut allergies in addition to the peanuts. Some kids are allergic to all-but some aren't.

Best of luck to you!

This is true. My son is allergic to peanuts but is fine with tree nuts. However, we have always been told to avoid "tree nut" products as they are often times processed along with all other nuts (to include peanuts) at the factory. But, my son could eat a whole walnut (in the shell) if he wanted. We also avoid the other nut butters for the same reason--the possibility that they are processed with/near peanuts in the factory. I think the companies are getting better about this though.

Unfortunately, we've avoided stuff for so long that even if another nut product is deemed "safe", my son will refuse to eat it. He's just too scared.

 

[mamatojon]

www.kidswithfoodallergies.org

My daughter is allergic to shellfish which doesn't in any way come close to the level of care you'll need to take with peanuts, but I can empathize with the fear that you must be feeling. This website was recommended to me by her allergist, it is affiliated with POFAK (parents of food allergic kids) and they are one of the largest support orgs out there.

 

[cardaway]

Read up on all the info you can on epi-pens and how to teach your child to be safe. IMO there is no such thing as a peanut safe public place and it's best to be prepared.

 

[disykat]

Just some words of reassurance. It is very scary - but it will be fine! My son is 14 and we've been navigating this path for about 12 years.

We also avoid all nut products because of cross contamination issues even though he is not allergic to tree nuts. My son is extremely carefully and won't even eat soynut butter, although we keep it in the house for his younger brother, despite the fact he knows it is safe. It just looks too much like peanut butter for his comfort level. We keep our home nut free.

It's scary looking to the internet for information. I have to take peanutallergy.com in small doses. I have to take threads on the DIS in even smaller doses because they tend to end up as debates even when they start out as simple requests for information.

I do have to say this allergy is probably the most worrisome thing I deal with as a parent, but in the grand scheme of things I feel very fortunate that this is the most worrisome issue we have. We read labels, we avoid some situations, we carry epi-pens everywhere, we are vigilant - but that allows life to go on as normal.

 

[TheBeadPirate]

I developed a nut allergy at 25. Things I could eat in the past were suddenly taboo for fear of a hospital trip (that's how I found out about the allergy development). I've had the epi-pen since then and thankfully have never had to use it. I've had plenty of Benedryl these past 10 years though. It's been a learning experience. My biggest suggestion is to know, for sure, what is in your food or don't eat it. We had an experience at France in Epcot that ended in Benadryl taking because the lady behind the counter didn't know about the food and didn't know where to look for the info. Ordering it was a lapse in judgement on my part (the chocolate got me!) but I thank goodness it wasn't worse.

Also, the internet is a good resource for info but also ask your allergist for a referral locally. Someone you can meet personally and ask questions and guage their response. It's often easier to understand why some are more relaxed than others when you can meet them.

 

[Lisa loves Pooh]

Read up on all the info you can on epi-pens and how to teach your child to be safe. IMO there is no such thing as a peanut safe public place and it's best to be prepared.

And please alert all caregivers on their usage.

I had a very short sitting stint a couple of weeks ago and the child was new to the epi-pen. Mom (who is a bit frazzled over an icky divorce)--almost forgot to say something when I noticed it in the bag.

And yes I am a moron--but I had left the bag on the floor--but I didn't know. After a little bit I got to thinking that it probably shouldn't be there and then moved it to an out of reach place.

But I had never used an epi-pen and knew nothing about them and if your child will be traveling with one..then you must educate those whom you will entrust with her care.

Not a big deal--but it scared the heck out of me as I wasn't comfortable with what little information that she gave--so much so that I just didn't feed my girls lunch until she got back to pick her daughter up.

 

[ducklite]

Fortunately the new Epi-Pens have illustrated step-by-step directions on them. (I noticed this on my new one last night.)

It's pretty easy to manage any food allergy once you get used to it and learn to question, and if you are told something that doesn't make sense to use err on teh side of caution. (Server: "Oh, the pesto is safe" Me: "NOT!" )

Anne

 

[dizcrazy]

Thank you all for the replies!
Some of those websites freak me out a bit, so I agree about the "small doses!"

I did have to let DH kow how accomodating WDW restaurants can be!

 

[Amy]

My DS16 is allergic to peanuts, and we found out the same way you did: he was about 1 year old and we spread some peanut butter on toast. He just touched it (didn't even eat it) and broke out in hives.

I'll echo what others have said: read, read, read ALL labels (even shampoo and body lotion -you never know what they put in some of them). We have a rule that if there's no ingredient label (like home-made treats brought into school), my DS won't eat it.

A nice thing they're doing now with the Epi-Pens (at least the adult-size ones) is that they come in a two-pack along with a practice Epi-Pen. The practice one doesn't have a needle, but it works just the same.

You might also want to check out www.foodallergy.org; they have some good advice, and they sell products, like holders for Epi-Pens. Once my son got older and started going placed without me, he had to carry his own Epi-Pen, so we needed to get a holder for him.

You might also want to get your daughter a Medic Alert bracelet just to be a little safer.

 

[disykat]

Amy, where does your son carry his epi-pen? At school, it's not an issue because he carries his backpack with him everywhere. Right now he is still wearing jeans with large pockets so he can slip one in there. However, he is getting very sensitive about wearing his medic alert chain (he wears it, but it's under duress and he'd sneak out of the house without it if he could) and doesn't want anyone to see his epi-pen.

I don't know anyone IRL with a teen that carries an epi-pen, so I'm just curious how you handle it. It wasn't an issue when he was younger because I, or another adult he was with, carried them. We have the little black carry cases that hook on belt loops, but he won't wear it. He even gets irritated when dh is with him and wears it that way.

He's pretty responsible, but he's a teenager, and he doesn't want to seem different or, heaven forbid, be unfashionable. He just left to go sledding with some friends (who all know he is peanut allergic). As he left, I said "don't forget your epi-pen" and he sighed and said "I was waiting for you to say that".

Since ds always seems to be on the front end of the peanut allergy trend, we haven't really talked to anyone who's dealt with teen issues.

 

[Cruisin]

Amy, where does your son carry his epi-pen? At school, it's not an issue because he carries his backpack with him everywhere. Right now he is still wearing jeans with large pockets so he can slip one in there. However, he is getting very sensitive about wearing his medic alert chain (he wears it, but it's under duress and he'd sneak out of the house without it if he could) and doesn't want anyone to see his epi-pen.

I don't know anyone IRL with a teen that carries an epi-pen, so I'm just curious how you handle it. It wasn't an issue when he was younger because I, or another adult he was with, carried them. We have the little black carry cases that hook on belt loops, but he won't wear it. He even gets irritated when dh is with him and wears it that way.

He's pretty responsible, but he's a teenager, and he doesn't want to seem different or, heaven forbid, be unfashionable. He just left to go sledding with some friends (who all know he is peanut allergic). As he left, I said "don't forget your epi-pen" and he sighed and said "I was waiting for you to say that".

Since ds always seems to be on the front end of the peanut allergy trend, we haven't really talked to anyone who's dealt with teen issues.

My son who just turned 23 has a peanut allergy that we have known about since he was 8 months old.

As a teenager, and even still, he wore cargo pants all of the time. He carries his epipens in the pocket of his pants and no one can even tell they are there.

To him it's just habit. He puts his keys, wallet, change and epipens into his pants pockets everytime he leaves the house.

 

[Horseshoes]

My DD is PA, she is 12 now and we found out when she was 4.

She carries around her epipen in her pocketbook. As for boys, there is a belt pouch they can wear, and its decreet especially with the big T- shirts kids wear nowadays. If for some reason she cannot have her epipen nearby, I usually have her carry Benedryl tablets in her pocket ready for her to take.

And depending on the severity ( as determined by your allergist ) you may be safe with that.

We've learned to deal with it. When in doubt, dont eat it is our motto. We read labels. Most parents are sensitive to her. Some even call me at home and ask if she can have whatever it is. And I am very appreciative of that, but I dont expect everyone to be like that. It is our problem and not thiers. ANd like you said, you dont realize the impact unless it hits home.

But since your DD is so young, its very important for you to be diligent. My DD reads her own labels at friends houses, etc. SHe usually doesnt eat baked goods brought into school, even though there is a "no baked goods" policy, parents still do.

If she goes to friends houses as she gets a little older and you leave her there, pack her own snack thats safe, or enough to share.

And its funny, when you start reading all the labels, you realize how bad so foods are for you.

Ohh and my DD is also allergic to peas, since they are legumes too.

 

[Amy]

Amy, where does your son carry his epi-pen? At school, it's not an issue because he carries his backpack with him everywhere. Right now he is still wearing jeans with large pockets so he can slip one in there. However, he is getting very sensitive about wearing his medic alert chain (he wears it, but it's under duress and he'd sneak out of the house without it if he could) and doesn't want anyone to see his epi-pen.

I don't know anyone IRL with a teen that carries an epi-pen, so I'm just curious how you handle it. It wasn't an issue when he was younger because I, or another adult he was with, carried them. We have the little black carry cases that hook on belt loops, but he won't wear it. He even gets irritated when dh is with him and wears it that way.

He's pretty responsible, but he's a teenager, and he doesn't want to seem different or, heaven forbid, be unfashionable. He just left to go sledding with some friends (who all know he is peanut allergic). As he left, I said "don't forget your epi-pen" and he sighed and said "I was waiting for you to say that".

Since ds always seems to be on the front end of the peanut allergy trend, we haven't really talked to anyone who's dealt with teen issues.

Oh, my son is the same - he HATES being different! And at school, he's not supposed to have his Epi-Pen on him since it's considered a drug; no asthma inhaler either. So I leave them at the nurse's office, and he has another set "illegally" in his trumpet case. For an Epi-Pen holder, he used to have the kind with the clip that hooked on his belt loops, but he didn't like having it hanging there. FAAN had another one that's kind of like a fanny pack, but it's only big enough to hold 2 Epi-Pens; when he has it on, it kind of fits into the small of his back and isn't very noticeable. When he went to WDW on a band trip last year, I made sure he wore that one. (Whether he actually DID wear it, I have no idea.)

Of course, when he goes to work, he doesn't bother taking his Epi-Pen, just throws a few Benadryl in his pockets and figures he's safe. I just say a lot of prayers.

Peas - you know, I never made that connection, but one day years ago DS ate some peas at my mom's house and got sick (vomiting). No hives like when he comes in contact with peanuts. Hmmm......

 

[disykat]

Thanks guys. Although I've seen them, I had forgotten about the epi-packs that were actually ON the belt, maybe I'll try those as another option. He's been making noises about wanting pants that weren't carpenter pants with the huge pockets.

Amy, I was worried that the school would give me a hard time about meds - he wasn't allowed to have them on him in elementary school. Once he reached junior high, he is allowed with the proper paperwork from the doctor. PS - my PA son is a trumpet player too. I've been just starting to sweat a bit about band trips that will surely be coming soon.

 

[dizcrazy]

Very good point abot the peas!!! I will ask the allergist about that next week.

Today's scratch test went as expected. I was pretty matter-of-fact about the whole thing, because I had you (my friends in this thread) and had read some webpages. I am sad that we have to deal with this, but I guess that's life.

 

[cardaway]

Just don't let him or her get cocky about any areas being safe or letting them forget their alergy.

The only time my nephew ever got into trouble in when he let his guard down and ate things he was supposed to. Well that and going to a baseball game. That never happened again.

 

[Fitswimmer]

Read up on all the info you can on epi-pens and how to teach your child to be safe. IMO there is no such thing as a peanut safe public place and it's best to be prepared.

I second that. I've lived with a peanut and tree nut allergy for over 40 years and the best defense is a good offense. Teach her to read labels, to ask before she tastes and MOST IMPORTANT to not be ashamed of it. We had a teenager die at a Chinese place a few years back, she was on her way to the rest room to use her epi pen and didn't make it. If she'd used it at the table, she would probably be alive today. There was another one a few years back at a concert at Waterloo Village near here that died because the ambulance didn't have a pen available for him. Both kids were patients of the same allergist that I've used and he's got us all crusading on this issue.