please help with new food allergies

[mickeymom1]

i am a lurker on these boards, so i know there are many of you out there with lots of great info!!

my youngest ds (21 months) was just diagnosed with a peanut & walnut/treenut allergy and i am not sure where to start. we have gotten rid of all nuts in the house and are becoming expert label readers. i am scouring the internet for info and have started to read some books, but the info seems so "technical".

i guess what i am looking for is every day "practical" info to make things seem easier (maybe something like "dealing with food allergies for dummies"!!). he has not had an anaphylactic reaction (& i hope he doesn't!) so i am not even sure what to look for if he was having a serious reaction. when you go out to eat, how do you convey to them your allergies and make sure the food is safe?

finally, we are headed to disney for a short trip in a few weeks & unfortunately this will probably be our first time out to eat, etc. since the food allergy diagnosis (3 young kids + eating out = ). from what i have gathered on these boards, they are very accomodating and informative with food allergies which should make things a bit easier. i also already got some info from brenda bennet which was great. we will mostly be eating counter service, so do i ask to speak to a manager before i get in line or do i just talk to the cashier? (i know this is a silly question, but i feel so new to all of this )

sorry this is so long winded! i feel like i am not a stranger to adversity because my oldest ds6 has down syndrome and i am for the most part in a comfort zone with that. since my youngest ds allergy diagnosis it feels like we are going back to square 1 and having to re-educate ourselves with this new adventure . thanks again for any words of wisdom and tips that may be helpful!!

 

[Selket]

I'm sorry you're having to deal with this. My younger son was dx'd with a severe peanut/tree nut allergy at 27 months (1 month after he was dx'd with type 1 diabetes) - and I realize how confusing and stressful it is at first. William is touch allergic to peanut.

I highly recommend visiting the peanut allergy boards at http://www.peanutallergy.org Lots and lots of discussion there about everything (what is safe and not safe, experiences at restaurants, at WDW, on airlines, schools, etc). You will find that people have different comfort zones and you'll have to find yours (like some people will not step on an airplane - others do with caution).

A good article is here: http://pediatrics.aappublications.org/cgi/content/abstract/111/6/S2/1601 called Anaphylaxsis and Emergency Treatment. It is a bit scholarly but has practical advice.

As for WDW counter service....we never had any issues with reactions but trying to get "the book" was impossible if the crowds were thick. I couldn't seem to find anyone to ask without going through the whole line (and I didn't want to cut line of course). So when I got up there it created a mess for those behind me waiting. And the book (the one time I did get it) was HUGE and so detailed it would have taken awhile to actually find the foods I wanted to know about, etc. Hopefully someone will have better advice on how to look at that book.

I found most kid food were safe (like chicken nuggets, mac and cheese) - but watch out for any bread type items (crackers, bread, baked goods) - most of them are NOT safe in our experience. The hot dog and hamburger buns were generally safe. Of course I would not rely on my experience but try to find out from the restaurant or from Brenda. Because of your child's age you might consider bringing in some things (crackers they like, goldfish, etc. - the mickey shaped cheese crackers were "may contains" last April). We sometimes brought in a bologna lunchable - one of the small ones without a drink - as a back up plan. Go-gurt, etc. You can always get a hotdog and cut it up, fresh fruit, etc. For dessert I'm sure there are safe choices in the ice cream cart (Itskadoozies). If you must have cookies though then bring them yourself.

Best of luck with everything.

 

[Daydreamer64]

Don't worry! You're not alone!

Last September at WDW Chef Mickeys, my then 9 month old had a bad reaction to eggs- had to call 911 and everything.

Got home, got tested with three different kinds of tests at Emory Children's Center and he is allergic to:

nuts,
eggs,
soy,
dairy,
beef,
chicken,

among other proteins type things- but no genetic disease that show protein problems?? ! Now we have one Epi pen at home and one in the diaper bag at all times. He's so allergic to eggs that we have to have his MMR at the allergists office a little bit at a time, no flu shots or hep A shots so far-

Soy is in everything- just everything- every package of any baked goods and if the soy isn't there the nuts are- no chocolates ( may be made in the same area as nut containing candy is ), no cereals ( think Captain Crunch peanut butter, Cheerios honey nut and so on... ), no candy peroid because of the dairy and soys too... if the nuts aren't there the dang eggs are the list just goes on and on and on- the kid can't even eat out because some places use egg wash to dip fried foods in and to shine up roll tops...everywhere I turn for pre-made foods I find it's a no go! Even cake mixes are out!

We are turning into a vegi family- this is really good because my middle son is a newly diagnosed Juv. Diabetic type 1 so more vegis and less carbs for us as a whole. My big boys do still take PNB in their lunch boxes for school but none is consumed at home.

On the up side, we are all eating healthier, I do miss the eggs and peanuts are my favorite ( kung pao beef is gone as are egg rolls boo hoo for Mom ) but he's still breastfeeding at bedtime and that means Mom does without too! The doctor said to be very careful because even just breathing on him after we eat any offenders can cause an attack for him.

So, it could be worse!

 

[disneyandme]

not meaning to highjack your post-- but-- Daydreamer64-- try looking into Fullcircle brand Toasted Oats. My DD2 is allergic to eggs, wheat, corn, soy, dairy, most meats, fruits and veggies. She has never had any nuts. She can eat this cereal and it is a main staple for her. You might want to look into it.

 

[Daydreamer64]

mickeymom1- here's a hug for all of us- we can do this-

not meaning to highjack your post-- but-- Daydreamer64-- try looking into Fullcircle brand Toasted Oats. My DD2 is allergic to eggs, wheat, corn, soy, dairy, most meats, fruits and veggies. She has never had any nuts. She can eat this cereal and it is a main staple for her. You might want to look into it.

Like I said - We are not alone- I know I'm probably preaching to the choir to you but -

I always tell myself - it can be worse! At least we can have wheat ( still can't find many things without the offending items in them like soy and eggs ), fruits, vegis and corn products. I will look into anything as an alternate source of food for my DS- I'm at my wits end because we just started to adjust to the allergies and then the diabetes started. Ben never directly had nuts either- only exposed through Mom's b-milk/ in utero before I knew better - even then they were processed so to speak He has always had really rashy skin-

It really sunk in this Christmas when the big boys had some candy/cakes and so on and Ben couldn't have any- I tried to cook cakes and desserts- found lots of sites with food ideas but they all taste funny or don't cook up well- I guess Ben will never know any different so he might like the taste but he will certainly want what big brothers are having- this would have been a lot easier if he was an only child!

Even on the Pizza Hut site says that there may be nut products in their stores?? I've never seen nuts on pizza - I curious about that? Oh, duh! Dh read what I wrote and reminded me that the stores with salad bars/buffets can have nuts/sunflowers.. toppings-

 

[antree]

I am livivng it too, we found out at 16 mos my son has a peanut nut and tree nut allergy, he is now 5 yrs old and had 1 reaction because he found some old peanut butter cups inside his sisters lunch bag. We didn't even know they were there, they had to be at least 2 yrs old.

Anyway, contact Brenda at Disney; Brenda.Bennett@disney.com - and she will send you info about what is safe and not safe. We have been to Disney 6 time with my son since we found out about his allergy and they have always been Great.
Let everyone know about the allergy when go to eat, at sit down places they will get the chef and he will walk you through buffets and help you chose from the menu what is safe. They will answer all questions and they don't have a problem going out of the way to make sure everything is safe.
At counter services, ask what oil they fry in and tell them about the allergy, there is a book that you can look at to see all ingredients.
So far, all my son eats is fries, hot dogs and Mac and Cheese when we are there and all that is safe.

I can tell you Don't Eat at Wolf Gang Pucks on the West Side the sit down resturant. They are heavy on peanuts and peanut oil, they use it in everything.
We didn't know it and the Chef was Great, he really went out of the way to only bring safe food to the table for everyone in our party, he wouldn't bring anything that had any of the allergen in it. Dinner was good but to nerve racking with worrying about it.
The Plaza on Main Street is OK, my son gets fries and grill cheese there, they do make peanut butter sandwiches there, they told me as long as he is getting something cooked, it is safe, he would not suggest a cold sandwitch, because of worry about cross contamination.
LeCelliar in Canda, all the bread is Unsafe that they put on the table.
This is just a few that we have come across.
Get the list from Brenda and that will help alot. Let the food court know if there is one at your Hotel and you will see how helpful everyone is.
There is also a company that is selling per packages foods at Disney now
check it out at - www.divves.com - I heard they are great, they are peanut, tree nut, egg and milk free. I haven't tried them out yet.

Go to the book store I got 2 books about Peanut Allergy, it help me alot.

Good Luck.

 

[JessLCH]

My 5 year old is allergic to milk, egg, peanuts, tree nuts, sesame and mustard. She was allergic to soy, pea and beef but has outgrown those.

FAAN (Food Allergy and Anaphylaxis Network) is a wonderful starting point site and I encourage any parent of a food allergic child to join FAAN. They also sell a few very good cookbooks. Do a search to find their site- I am unable to post it here.

The Parent's Guide to Food Allergies by Marianne S. Barber is a great introduction to food allergies and has a few recipes as well (chocolate cake and chocolatet chip cookies which we make regularly and EVERYONE loves- food allergies or not).

Find a great allergist too!

 

[OneMoreTry]

.....
FAAN (Food Allergy and Anaphylaxis Network) is a wonderful starting point site and I encourage any parent of a food allergic child to join FAAN. They also sell a few very good cookbooks. Do a search to find their site- I am unable to post it here.

.....
Find a great allergist too!....

Food allergy network is superb. Sign up to get their newletter. It's cheap for what you get. Plus they have forms and information for schools and videos to teach babysitters, siblings and grandparents about what you're dealing with.

The guy that owns this company told me WDW has asked him to supply them with baked goods:
http://www.divvies.com/
He sells upscale ($$) gift baskets. I've had the cookies and they are EXTREMELY good -- and I'm a cookie freak quite picky about my sweets.

Get a board certified allergist. American Board of Allergy and Immunology.

Hang in there. It's tough but fortunately more schools understand this problem than ever before.

 

[Selket]

That is great about Disney selling Divvies - anyone actually seen them there and know where they carry their products and which ones?

 

[antree]

I haven't been there yet,but from what I have read is they are selling the Divves in MK at the Bakery on Main Street. All I have heard is that the popcorn and cookies are there, I am not sure if anything else is there.
My brother is there now and I asked him to stop in there and pick up the popcorn for me, I'll have him look and see what else is in there.

 

[JessLCH]

According to the vast amount of info emailed to me from Brenda Bennett of Magic Kingdom Foods, Divvies cookies, popcorn and jelly beans are available at:

Magic Kingdom- Main Street Bakery
Grand Floridian- Gasparilla Grill and Games
Epcot- Libebrty Inn
Animal Kkingdom Lodge- The Mara

Divvies are great! We have been customers since they first opened.

As a result of contacting Brenda Bennett, I have already been personally called by two different chefs at Disney to see how they could accomodate us.

 

[diseyore]

We made the mistake of eating an ice cream mickey. The chocolate had peanut oil in it........

 

[Selket]

We made the mistake of eating an ice cream mickey. The chocolate had peanut oil in it........

When was this? I know they Mickey bars *had* been off limits for the past many years but had heard they might now be safe. But I am not sure of that. Anyone with any recent info?

I emailed the Divvies people and they sent me a whole list of places that their products are available. They seem to be sold at every resort's counter service place OR shop - it is a bit hard to tell from what they sent. Brownies, Choc. Chip cookies, jelly beans and caramel corn are the things to look for - not all 4 are sold in every location from what I can tell. They are peanut, tree nut, egg and dairy free and also vegan according to their website.

I suggest that if their stuff is good (I've heard good things but never tried it) then we definitely let Brenda B. and others know we appreciate them carrying these items.

 

[diseyore]

My info is not the most recent. I did not know that anything had changed since they come from Nestles and Nestles has peanut oil in their chocolate. Or at least the last time I checked, we just haven't bought anything from that company for a long time because it all had the Peanut Oil in it.

 

[disneyandme]

Think about investing is a high chair cover. That way if teh person before you had nuts, your child won't be touching it. We have the one from cleanshopper, but there are a lot of them out there.

 

[antree]

We made the mistake of eating an ice cream mickey. The chocolate had peanut oil in it........

Wen did you have the Mickey bars? My son has a peanut and tree nut allergy
and he ate therm for 2 weeks straight last year, we have contacted Nestle and Disney and they both say they are safe. My son never had any kind of reaction.

 

[diseyore]

It was about 3 years ago. I am so glad that they have changed.

We will be getting the ears when it warms up! Just didn't ever go back to check Nesles had used peanut oil for at least the last 10 years.

 

[Dreamin Again]

After posting on the restaurant board, I was referred to this area. Very helpful info. For those with younger preschoolers, you can do this thing! My DD was diagnosed when she was 15 months (basically allergic to everything). Have grown out of some but still anaphylactic to peanuts, all diary, milk, and eggs. Well she is almost 14 and we have not missed a beat! WDW is great in helping us. I am thankful to know the name of Brenda Bennett. I will be contacting her about our April trip. I have found TS locations to be outstanding in meeting our needs. Our only issue is CS areas; holding up lines, etc. We have brought in some food for ourselves, but again just don't want my DD to feel "singled out." Am really happy to read about divvies. Will go to that site and find the places where we can feel good about DD treats! Celebrating DD birthday while there is April so looking for to some good info on bday cakes and such. Thanks again for the help.

 

[escapetodisney]

The chef at Chef Mickey's made a nut-free and dairy-free birthday cake for my child's birthday. We called ahead to arrange it. When you make your Advanced Dining Reservations they can give you the phone number to call. My kids were happy with the birthday cake.

 

[Korwynne]

Thank you all - it's nice to not feel so alone!

I'm allergic to wheat, treenuts and strawberries..
my 5 year old daughter is allergic to dairy, strawberries, treenuts, tomatoes, bananas and citrus fruits
my 4 year old son is allergic to wheat, peanuts and treenuts and is intolerant of gluten and melons
my 18 month old daughter is allergic to wheat, barley (assuming all gluten, but not sure), dairy, treenuts, bananas, and turkey. Probably more, but those are our knowns.

it's amazing how darn stressful feeding these kids are - and I'm so greatful to the people at Disney for being so accomodating.