DS with peanut/nut allergy, please help

Hi twins, et al. No I don't want to give medical advise, I am a nurse not a doctor. Get well educated. Speak to the allergist. I attend all the latest conferences. Just listened to a wonderful MD recently. Has your child has the RAST testing? This is a blood test that shows the allergy. Benadryl will help hives and itching. Benadryl will NOT help a swelling throat in time. If your doctor tells you to use epi after ingestion of peanuts do so and get to the hospital ER for monitoring. Epi only last around 15 minutes. Many MD's are prescribing the twin pack of epi-pens now for just that reason. The reaction can return many hours later. I have cared for too many children damaged by these allergies. My nephew (3 yrs. old) thought he had "something in his nose" after ingesting one bite of a candy bar. No one thought he had a problem except me. He was hospitalized. Long story, but he is fine now. Don't panic, be educated and aware of the food around you. Check out www.foodallergy.org. :flower: Boy am I long-winded, sorry. :flower:
 
When our son was authoritatively diagnosed with anaphylactic food allergies one of the most helpful pieces of advice our md gave to us was "You will not hurt him if you give him the epi-pen and it turns out he might not have needed it." In other words, our protocol is "give it if it seems it might be needed." For our son, the worst that would happen would be some flushing, heart racing and other adrenaline symptoms. Our doctor said "You won't kill him by giving him the epi-pen. But by the time you are SURE he needs it, he might die without it."

We have a treatment action plan on file with the school, which we update every time there is a medication change and which we train all his teachers and the cafeteria staff on every year the day before school starts. We cover everything, including who will transport to the ER if both of our town ambulances are on other calls (SMALL town).

Now that he's in high school we actually have 6 epi-pens stored in different parts of the school, and "mini action plans" with those teachers when Graham is scheduled for their part of the building (to prevent an epi from being locked up in a desk when it might be needed).

It paid off twice--several years ago he got a single shred of cheese in the lettuce on taco bar day. They had changed the cheese color to white w/out informing us, and weren't following their own protocol that the lettuce and cheese weren't supposed to be next to each other. The nurse gave the first epi in a room off the cafeteria (as most of you will know, this involves pulling down the pants for optimal administration) while the vice principal summoned the ambulance. The EMTs gave the second epi.

Our rule with the school is DEAL WITH THE MEDICAL EMERGENCY FIRST AND CALL THE PARENTS LATER.

A few years later he ate a pillsbury roll at home with a small amount of whey. His allergies had been improving and he'd been able to consume very small amounts of whey w/out ill effects. Something went haywire in his system and he reacted big time about 2 hours after ingestion while at school. The product he ate he'd been eating successfully for 2 years. The regular nurse--and the vice principal who coordinates the plan--were both out of the building, but the rest of the team swung into action, gave the epi and got the ambulance and he lived. Thank God we'd rehearsed "what if" scenarios.

When he was little we used to give benedryl because, frankly, it made him calmer and sleepier, and less agitation means the hives don't progress so quickly. The allegra he's on year-round seems to have some small effect in keeping the hives/blotching down--but the antihistimine does not affect either severe gastric reactions or anaphylactic ones.

Some of what we've learned is the unpredictability of reactions: sometimes it's gastric, sometimes respiratory; sometimes instant, sometimes hours later, sometimes more mild, sometimes severe. In general, if your child has had mild reactions, you need to be prepared that they might escalate.

Now that he's 17 we have a new worry. He ended up hospitalized once as a child because a babysitter ate a cheese doodle and then touched his face without washing her hands. Now that he's to the point that he might be thinking about kissing, we've had to face that if he were to kiss someone who'd just had a slice of pecan pie, he might very well die, even with an epi. We are hoping that all these years of assertiveness training, and helping him to function independently won't fly out the window the first time the hormones are flowing and he needs to ask some hot chick to stop and brush her teeth.

If anyone would like a copy of the action plan we execute with our school, which includes as succinct a description as I could craft of the symptoms which indicate an anaphylactic onset, please PM or email me and I'll be happy to send it to you. And--again, I'll echo that the food allergy network saved our son's life, multiple times. The kits they have for school nurses and other resources have been invaluable for us. We have worked with world class allergists over the years, yet food allergies are often a mystery to them. There have been many times when I've been the more informed partner in the parent/MD relationship, and have had to keep the ball rolling in treatment options.

Those who are dealing, in particular, with PA should be watching the trials for anti-IgE drugs, which show some promise, not at curing PA, but permitting the threshold before having a life-threatening reaction to expand from 1 or 2 peanuts to as many as 24.

Like most of you, I have permanently ground teeth from fielding all the "maybe he'll outgrow it" assurances, but I am so grateful to be raising a child now, rather than 2 decades ago. Maybe by the time our kids are frantic parents trying to arrange a theme-park dinner outing there will be a cure and this will all be an ancient nightmare.
 
erinch said:
And--again, I'll echo that the food allergy network saved our son's life, multiple times. The kits they have for school nurses and other resources have been invaluable for us. We have worked with world class allergists over the years, yet food allergies are often a mystery to them. There have been many times when I've been the more informed partner in the parent/MD relationship, and have had to keep the ball rolling in treatment options.

The Food Allergy & Anaphylactic Network http://www.foodallergy.org/ has great info. Our school has all their binders, thanks to a very alert nurse who has since left the school :( Peanutallergy.com has some interesting info also.
 
zillow said:
I really do feel most comfortable at Disney and am wondering about the Cruises? Anyone Cruise with an allergic child?

The cruise ships are equipped with a mini-emergency room that can treat an anaphalyxis.

That said, BE VERY CAREFUL! MANY of the cruise staff have a low grasp of English. I was at Topsiders on the Magic, and went up to the cook to order Italian station. I was just about to order, and noticed they were using pesto. I asked about it and was told it was pesto, no nuts. Duh. Pesto is almost always made with walnuts, and I could SEE the chunks of walnut in the stuff :guilty:

I walked away. Fast. Ended up going to the fast food place by the pool and getting chicken fingers and a taco for lunch. It wasn't worth the risk inside. The dessert buffet at Topsiders is a cross contmination nightmare. At the ice cream place they used a new spoon for my sprinkles.

At dinner each night my server had the chef highlite the items I COULD have. I had no problem there.

Anne
 

ducklite said:
I asked about it and was told it was pesto, no nuts. Duh. Pesto is almost always made with walnuts, and I could SEE the chunks of walnut in the stuff

Pesto is frequently made with walnuts, but traditionally it is just olive oil, basil, pinenuts, and parmesan. I wouldn't have eaten either!
 
jeancbpugh said:
Pesto is frequently made with walnuts, but traditionally it is just olive oil, basil, pinenuts, and parmesan. I wouldn't have eaten either!

Pine nuts are the one type of nut guaranteed to put me in the hospital! Just having them on the table with me gives me hives.

BTW--Mama Melroses is now NUT FREE except possibly in some of the desesrts. But nuts are no longer used in ANY of the entrees! *They used to put pine nuts on everything it seemed!*

Anne
 
Has anyone ever heard anything about the kid programs on the Disney cruises and how they deal with food allergies? Is food abundant in those programs?
 
They feed the kids at Topsiders, not in the clubs. If I were the parent of an allergic kid, I'd make sure I was there to supervise meals.

Anne
 
I just came back (once again) to this thread that I started. I wanted to thank everyone for all the wonderful tips you have to share. All your tips are going to really help in planning my families WDW experience! Thank you!
You all are great!!
Kris
 
We were on the Disney Magic one year ago.

My DS(4) has an anaphylactic allergy to milk, eggs and peanuts. Milk and eggs are very severe and peanuts are moderate/severe.

DCL was fantastic regarding the kids clubs and dining room!!! He had a special bright red mickey sticker on his kids club name tag that allerted all CMs of his allergy. There was no food allowed in the club and they even paged me to see if he could handle the slime that they made.

Our dining team (head waiter, waiter and ***'t waiter) were unbelievable. They even offered to provide him with a brand new container of soy ice cream each night because they were concerned about cross-contamination with multiple spoons in the container. Each evening the head waiter would discuss the next days meal and we would make a plan. They would sometimes suprise us with little treats (licorice, gummy worms, huge strawberries). The last night we celebrated my DS birthday and the chef came out with a few of his ***'ts and they had created a beautiful JELLO cake for his birthday. It was truely a magical cruise.

That being said....we did have to be very careful at the buffet breakfast and lunch. We just got a lot of fresh fruit, meats and french fries! The only thing he missed out on was some of the desserts (cookies, cakes, pudding, ice creams).

I would highly recommend DCL. pirate:

We are now planning our first trip to WDW with our son and I am requesting a fridge in our room to store his soy milk. We will probably bring some other foods with us but I really don't know what else he will be able to eat...other then french fries, hot dogs and candy....oh well it IS vacation :teeth:

Good Luck

MNmom :flower:
 
MNMom, thanks for the info. Did you talk to someone before the cruise about the allergies? (Does somebody handle this?)
Or once you got onboard?
Would they let you leave the Epi in the kid clubs?


You probably already know this, but in the health food section of our grocery store they carry soy milk that is in small cardboard like containers that don't require refrigeration until opened. I stock up on these for our trips. I think they even have single serving boxes.
My youngest is mildly allergic to milk. It mainly effects her behavior.
 
I have two children w/ peanut and tree nut allergies and I have a tree nut allergy also. Talk about a challenge! Disney is the ONLY place I relax a bit. We have been 3 times since 2000 and our next trip is this April. I don't mention it when I make PS. I tell our waiter when we first get there. Chefs come right out of the kitchen and talk to you or make a separate meal if need be. My husband and I even splurged and had an evening at Victoria and Albert's. I had a dessert and an appetizer that was not even on the menu but was nut free and made just for me.I always have my Epi-pens but I think about them less in Disney!!! Enjoy!
 
lenshanem--Yes. Ask DCL or your TA for a medical information sheet (I can't remember the exact name of it but it was something like that). I faxed it in about 2 weeks before our cruise and got a call back from the medical services coordinator the same day. We discussed my DS(4) allergies and what the protocol was in the kids clubs (epi-pen) and what he would eat. She was very professional and thorough. The only thing she couldn't do was give me a list of ingredients that I had asked for (hot dogs/buns, macaroni noodles etc..) she could not guarantee that the same vendors are used for every cruise...good answer!!

To be perfectly honest I can't remember if we left the epi pens there. I don't think we did.

MNmom :flower:
 
Welcome to the Dis pixie dust 5! We are glad you found us. :wave:

Thanks for the reassurance on the allergie situation in WDW. Its always nice to hear from others in the same boat.
 
MNMom, that sounds great!

Did you happen to notice if there were soft serve machines onboard anywhere?
 
Regarding vendors for baked goods at WDW--we found a special challenge was hamburger/hot dog buns for our DS with a milk/egg allergy. The vendors in the fast food places do not get bags with ingedient info, and there's no guarantee that the supplier this week is the same as last week.

Same issue with breading on chicken fingers.

Some of the sit-down restaurants with kitchens may have ingredients listed, others may not.

We avoided many life-threatening/ending episodes by never letting him eat anything from a restaurant unless we could check the ingredients of the actual boxes/bags the item came out of. Since milk is "hidden" I always checked the label myself. I have been invited into the kitchen at GF, Crystal Palace, AKL etc without any hesitation to do the ingredient check. At fast food vendors, we either ordered without the bun or we brought our own and asked them to sub it in. Either wasy was never a problem. (It makes it much easier to have a car to go to the grocery.)

As I said in a previous post, one issue we encountered repeatedly is that we usually needed a plain baked potato or steamed white rice as the safe "starch" and I would request it to be ready when we arrived, since they take a while to cook, and that slows down a buffet meal. I think only once did that actually happen. I raised the issue repeatedly and pointedly with the special needs dining folks, and they may have improved in this area.
 
My children do not have an allergy to nuts but I know many who do - I am surprised at the number of times I have seen "Peanut butter" for the choice of food for kids events - the Pirate Cruise - the TeaParty - on menus.

In our area we are very peanut aware - no peanut/nuts at school - even our church doesn't allow nuts for potlucks.

I wonder why Disney isn't more up on this??

I can't offer you any advice KYMommy because we are just heading to WDW for the first time next week - but I wish you all the best - it will be a challenge but it sounds like you are going prepared.

Helen
 
You guys all seem to have a lot of experience with the whole peanut allergy thing. Can you help me with a question?

I have a son who had exzema as a baby (pretty sever for his first year), but seems to have outgrown it. Also, he had a dairy allergy as a baby (broke out in hive all over his body)and seems to have outgrown that also. Occasionally, I notice that he gets a little red on his face and around his mouth now, but it soon goes away untreated.

My question is about peanuts. The doctor prescribed an epipen just in case because it appears he may have a peanut allergy. He does not like anything with peanuts or peanut butter. As far as I know, he had not eaten anything containing peanuts before last summer (he's 4 now). One day he ate one peanut M&M. (He didn't know it was a peanut M&M - just thought it was chocolate) I didn't realize they were available to him or would have told him he wouldn't like it - not that I thought he was allergic at the time, but because I knew he didn't like peanut butter (or at least would never try anything with peanut butter in it). Of course, after he ate it, he immediately threw up (A LOT). He has always been kind of a pukey kid (lucky me), so I didn't really think a whole lot about it. The more I thought about it though, the more I wondered if he might have a peanut allergy. I asked the doctor, and she said that vomiting usually isn't a symptom, but he could be allergic, so she prescribed the epipen.

My oldest son has never actually thrown up after eating peanut butter but tells my he gets a weird taste in his throat - so he hasn't eaten anything peanut butter in a long time now. I don't know if this is indicitive of a slight allergy or just a dislike. When my younger son wouldn't eat peanut butter I just thought it was because his older brother wouldn't.(and he often won't try new things.)

Of course my middle son can't get enough peanut butter - just like his mother!!!!!!!!

OK, after all of that rambling, do you have any insight? Does this sound like an allergy or just a dislike? Thanks for your help.
 
Sanibel lover:

I would absolutely have both children tested for peanut allergy. Throwing up is not an uncommon allergic reaction. Also, be aware that even plain M & M's contain traces of peanuts.

Shan:

I will be cruising with my PA DD5 this July. I was very hesitant to go (I don't like being so far from a hospital) but my in-laws are taking the entire family to celebrate their 40th wedding anniversary. I spoke with DCL and they assured me that they would be able to safely feed my DD. They also explained that it would be possible to leave her in the kids clubs without incident. I was told there is a doctor and nurse onboard at all times and that they are prepared to deal with any emergencies, including anaphylactic ones.

Now, my comfort level is not very high. I am extremely cautious about all things peanut-related. However, we have taken my DD to WDW 5 times since learning of her allergy and I have been very pleased with the careful and cautious way the CMs and chefs have handled our situation. I am hoping that the same will happen on this cruise or she'll be eating a lot of fruit and nothing else! You may want to check out a thread I started on the DCL discussion board. I think it's entitled "Cruising with food allergies." I got a lot of responses from people who have cruised with food allergies.

DVCDawn ::MinnieMo
 


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