First time to disney with epilepsy and food allergies

[disney fan4]

I have tonic-clonic seizures. I was diagnosed with epilepsy in my teens, 12 years ago. When we first started planing for our Disney trip, my seizures were completely controlled (10 years without a seizure). About 6 months ago I went into anaphylactic shock and was then diagnosed with multiple food allergies. Because of the food allergies, I lost 30 lbs. The sudden metabolism/weight change has caused me to start having seizures again. Basically my doctor said we have to start all over to find the right drug combo/dosage.
With my condition not well controlled right now and the extra food allergies, I am a little stressed out about our trip. I am unsure what would be safe to ride? I don't care about riding rollercoasters. My kids are young and I just want to be able to ride things like Star Tours, TSM and POTC with them. Are the rides well marked with warnings? I am not as worried about strobe lights (never had a problem with them being a trigger), but have read and been told that physical trauma (such as forces felt on rollercoasters) can be a trigger.
I also know that I may have to take it slower, stay hydrated and hopefully not be stressed out trying to find food that my son (also has food allergies) and I can eat.
Is there anything else that would help or that I should know? I would appreciate any advice or experiences!

 

[clanmcculloch]

{{{HUGS}}} Getting stressed is only going to make this worse. The biggest piece of advice I can give you is to not forget to breathe. Repeat.

I don't have much advice on the seizures/ride stress other than to ask just how much physical trauma is ok? Would you best off to stick with rides that don't have warnings for prenant women or those with back or heart issues? I believe rides are well marked for those kinds of things. Maybe those could be good guides?

I can help with the food allergies. What allergies do you and your son have? Knowing that, you'll get a lot more responses. There are lots of dining options for people with food allergies at WDW. At TS restaurants you'll have a chef come out to your table and the chef can custimize any ingredients that he has in the kitchen (as long as it's not premarinated) to be safe for you. Without your allergy list, I can't really make CS or snack recommendations so I'll hold off on that.

 

[disney fan4]

My son is allerigc to gluten, dairy and peanuts. I am allergic to wheat, corn and peanut along with more easily avoided foods tomato, celery, jalapeno, onion, garlic, pinto bean and cottonseed.

 

[clanmcculloch]

Your son and I have the same list. Disney is very accomodating even for CS with this list. It's your list that I think will be more difficult. The corn, onion and garlic and maybe even the cottonseed will be tougher at least for CS and snacks. At TS, chefs will still be able to customize things for you.

For your son, he's able to eat all sorts of foods like the allergy chicken tenders with fries, burgers and hot dogs with buns, Mickey waffles, cookies, ice cream (Tofutti or Rice Dream), popsicles, some places can even prepare pasta (Sunshine Seasons at Epcot though the drumstick meal is pretty good, plus resort CS), popcorn and so much more.

I'd take a look online at the ingredients for the brands of gluten free products to see if they have any of your allergens. Unfortunately, as you I'm sure are painfully aware, lots of companies just list "seasonings" rather than which ones so it's impossible to tell on onion and garlic without calling. The gluten free breads and I believe even pizza crusts are by Udi's. The gluten free chocolate chip cookies are by OMG... It's Gluten Free (they serve the ones marked Dairy Free) as well as Enjoy Life chocolate chip cookies. The pasta I believe is still Tinkayada. I don't know the brand of french fries or what kind of oil they use and I don't know the brand of potato chips as they're packaged and sold as a WDW brand. I'd try emailing the Special Diets department to try to find out ingredient information. They're willing to send scans of ingredient lists off packages; they sent me the hot dog one and chicken tender one at one point. You know, I think you might be able to eat Mickey bars (not sure on the corn; it's not one of our allergies) though I'm not sure how you'd feel about eating that in front of your son (my kids would get upset with that but your son may be different).

 

[SueM in MN]

Check out the disABILITIES FAQs thread near the top of this board (or follow the link in my signature).

Post 3 has a lot of General information and links about specific conditions - including information about contact for food allergies and special diet information.

Post one of that thread is an index to what other posts in the thread contain. There is a post on page 2 of that thread about attractions with warnings and about epilepsy that you will find helpful.
All the WDW attractions with warnings are well marked - on park maps, on signs at the entrance to the attraction, and again, before boarding. The signs are general and all the warnings use the same wording, which is why I included information about each attraction and why the warning is probably there.

For epilepsy, the biggest things that lower the seizure threshold (how much it takes to trigger a seizure) are dehydration, lack of sleep and change in routine, including the schedule for taking medications. It's very easy at WDW, or really any time on vacation, to get off schedule so many people set a timer for medications. Without doing that, it's really easy to get caught up in the activity and all of a sudden realize it's 2 pm and a noon dose of medication is late.

 

[Grace&Carolinesmom]

I would also add to avoid non-Disney owned/managed restaurants on site. It has been my experience that these places do not have the same training or experience dealing with food allergies. Many also have somewhat of a language barrier and don't carry a varied line of ingrdients and/or products to be able to accomodate those with food allergies. We ran into problems specifically at the eateries at Coronado Springs Resort. Because the same food service company also runs the eateries in the Mexican pavillion at Epcot, we also avoided those. I know there are a few more eateries in Epcot that are not Disney owned/operated and maybe others can chime in with those names and experiences.

 

[disney fan4]

Your son and I have the same list. Disney is very accomodating even for CS with this list.
For your son, he's able to eat all sorts of foods like the allergy chicken tenders with fries, burgers and hot dogs with buns, Mickey waffles, cookies, ice cream (Tofutti or Rice Dream), popsicles, some places can even prepare pasta (Sunshine Seasons at Epcot though the drumstick meal is pretty good, plus resort CS), popcorn and so much more.

I am so glad to hear this! We live in a small town and there is not a restaurant here where you can walk in and order burger or hotdog on gf bread, dairy free ice cream etc. Also thanks for the list of brand names, I would much rather do the research now than during the middle of the trip.

Check out the disABILITIES FAQs thread near the top of this board (or follow the link in my signature).

Post 3 has a lot of General information and links about specific conditions - including information about contact for food allergies and special diet information.

Post one of that thread is an index to what other posts in the thread contain. There is a post on page 2 of that thread about attractions with warnings and about epilepsy that you will find helpful.

For epilepsy, the biggest things that lower the seizure threshold (how much it takes to trigger a seizure) are dehydration, lack of sleep and change in routine, including the schedule for taking medications. It's very easy at WDW, or really any time on vacation, to get off schedule so many people set a timer for medications. Without doing that, it's really easy to get caught up in the activity and all of a sudden realize it's 2 pm and a noon dose of medication is late.

Thank you for the info. I will check out that thread.

I would also add to avoid non-Disney owned/managed restaurants on site. It has been my experience that these places do not have the same training or experience dealing with food allergies. We ran into problems specifically at the eateries at Coronado Springs Resort. Because the same food service company also runs the eateries in the Mexicanlion at Epcot, we also avoided those.

Thanks for the tip. I had not thought of that.

 

[clanmcculloch]

I am so glad to hear this! We live in a small town and there is not a restaurant here where you can walk in and order burger or hotdog on gf bread, dairy free ice cream etc. Also thanks for the list of brand names, I would much rather do the research now than during the middle of the trip.

As somebody who suffers from OCDD (Obsessive Compulsive Disney Disorder ) I can understand.

I can definitely also understand about restaurants. The only places we eat out are when we go for sushi or steaks and I bring little containers I fill with GF soy sauce when we get sushi and luckily we have a steak place where they train their staff about gluten and the chef puts on a fresh pot of oil to cook fries for us. For DD14's most recent birthday we got the sushi place to bring out a tuna roll instead of a cupcake (they arranged the pieces of sushi on a small dish with a candle in the middle for her; the roll cost the same as a dessert so they didn't even charge us for it ). We're lucky to have these options.

Other brands to research include Udi's for all the bread products (bread, hamburger buns, hot dog buns, bagels, dinner rolls, pizza crusts), OMG... It's Gluten free for desserts (brownies and chocolate chip cookies (the dairy free cookies; they carry 2 types)), Enjoy Life for desserts (chocolate chip cookies and chocolate bars). I'm blanking at the moment on other brands.

 

[disney fan4]

I just wanted to thank everyone for their help! We had a wonderful trip! Despite the fact that I did have one seizure. Luckily I was in our resort room were it was much safer. I believe it was just a case of having pushed myself too hard that day. But thankfully it didn't affect the rest of our trip, and I did slow down after that. I also was able to ride everything my kids wanted to except Star Tours. One time on it and I let them go with DH after that.
I appreciate the heads up on the brands clanmcculloch. It is already a long wait at cs and since I was able to research allergens in the brands ahead of time it really sped up the process. We found most cs to have the omg...it's gluten free products, some had enjoy life cookies which my son did not enjoy. And all had Udi's breads.
We had some great ts meals. Mine and my sons favorite was 1900 Park Fare. The chef came out and immediately said it was no problem and that he would make us both something from the back. When both of our meals came out they looked like works of art and tasted wonderful also. We both had a piled high dessert of ice cream, ice cream sandwiches, strawberries, bananas and pineappple that the chef then covered in chocolate at our table. My sons also had Mickey sprinkles and caramel popcorn. I am not dairy free and he was the only chef who served me a dairy ice cream that did not contain corn syrup. All the other chefs served me non-dairy ice creams because they do not use corn syrup, and I could not get used to the aftertaste. The chef made us feel like not only was it no problem, but that he was excited to create something for us. Our meals at 1900 Park Fare made my non-allergic dh and dd jealous!
The only bad experience we had was at Hollywood and Vine. The chef showed me what my son and I could have on the buffet and never volunteered to make anything. He explained to me there was no need for me to worry about cross contamination because we were sitting at the table with DH and DD who would be eating food we were allergic to. How that had anything to do with cross contamination with safe foods at the buffet, I don't know. Not to mention that even if I was comfortable with eating strictly off the buffet there was not one single starch we could have and only one veg.
The chefs at the Disney All-star Movies resort were also great!
Thanks again for the help! Our first trip to Disney was a success! And the ease with which we can all eat there has me planning on how we are gonna save for the next trip!

 

[clanmcculloch]

The chef at 1900 Park Fare is the famous Chef TJ. He really is the BEST!!!

I'm glad to hear you had a great trip.

 

[SueM in MN]

Thanks for finding your original thread and adding an update!

Glad to hear you had a great time.