Fpies

[kjcauley]

I'm planning a trip to Disney World this June with my ex-girlfriend and her child this June. Neither of them have ever been, so I'm very excited about making this an experience they will never forget. Her daughter is eight years old and has a disorder called FPIES. Not many people are familiar with the disorder because it's so rare.
FPIES is Food Protein-Induced Enterocolitis Syndrome. FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.
In our case, she is extremely sensitive to most foods and many chemicals. She cant even come into skin contact with many common chemicals. She has had countless intestinal blockages and many surgeries. She is extremely limited on what food she can eat (there are only about 16 ingredients she can have, and most can only be purchased at certain stores), and they have to be prepared a certain way to reduce cross contamination.
I have read many great reviews on how accommodating DW is for kids with special needs. My question is if anyone on here knows of anyone with FPIES, and if so, how accommodating can DW be?

 

[jmartinez1895]

The first step should be for a member of the family to contact special diets. There are many others on this board who can offer some info on that. If you are staying on Disney property then you should call and have it noted that there is someone who has issues with chemicals and they can clean the room without using the harsher stuff. You can also request that the bedding be removed and bring your own to just in case that there is an issue with laundry detergent. Once you are at the park you should take the child to GR and explain the situation some and see if they may be able to offer some help and advice on the best way to get around the park.

 

[SueM in MN]

I'm planning a trip to Disney World this June with my ex-girlfriend and her child this June. Neither of them have ever been, so I'm very excited about making this an experience they will never forget. Her daughter is eight years old and has a disorder called FPIES. Not many people are familiar with the disorder because it's so rare.
FPIES is Food Protein-Induced Enterocolitis Syndrome. FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.
In our case, she is extremely sensitive to most foods and many chemicals. She cant even come into skin contact with many common chemicals. She has had countless intestinal blockages and many surgeries. She is extremely limited on what food she can eat (there are only about 16 ingredients she can have, and most can only be purchased at certain stores), and they have to be prepared a certain way to reduce cross contamination.
I have read many great reviews on how accommodating DW is for kids with special needs. My question is if anyone on here knows of anyone with FPIES, and if so, how accommodating can DW be?

Only time for a quick reply.

WDW does a good job on common and less complex diet issues, but the more complex the needs, the more difficult it is to accommodate.

Considering the bold part, your safest option is going to be bringing in her food with you and just supplementing it with safe items you can get in the park. Especially as she can only eat some things if they are purchased from a specific place.

You can bring in a cooler, just not a large rolling cooler. You would be able to store it in a locker or carry it on rides with you as long as it's not large. The restaurants would not be able to warm the food for you because of food safety laws. You probably wouldn't want them to anyway because that would put the safe food out of your control.

If you choose to try some of the restaurants, you want to get your message across the most concisely and clearly. You don't want to have details they don't need to know. They just to need to know 'severe food allergies'.
Just make it very simple - this is what she can have, this is what we need to avoid. Many people make up cards with the information. That makes it very simple and much less chance of misunderstanding.

Look at the menus head of time - there are links in post 3 of the disABILITIES FAQs thread that will be helpful.

As for getting around the parks, there is very little that can be done that would be helpful. Even if she is in a less crowded area, there is still a chance that someone used or ate something she would have a problem with. Small kids tend to touch surfaces, like handrails, so the best for her old be to avoid touching surfaces as much as possible.
She could possibly use a wheelchair or stroller in lines to avoid touching the handrails in lines, but could still come in contact with a problem substance of grab bars or restraints in rides.
If you have a safe cleaner for her hands, that might be helpful.

 

[wendow]

My ds has/had FPIES to almost every food years ago but thankfully has outgrown all but cow's milk protein and soy. We went to WDW this past September when he only had to avoid milk and soy and I honestly found it a bit hard to feed him. I brought in a lot of his food. Had we gone when his FPIES was really bad, he would absolutely have needed me to bring his food in. At that point, he lived primarily on Neocate Jr with very few foods. I really suggest you just bring in your dd's foods.

I'm so sorry your dd has FPIES. It really is so hard to manage and no one 'gets it'. I have friend who's dd has it now (she's not quite 2yo). It really is becoming more and more common

 

[kjcauley]

Thank you all for your helpful advice. I'm definitely going to bring her own food, and I made a mental note that if I have to, I think I can use the Infant care center in each park to microwave her food.(They are the only places I can find that have microwaves for use). I'm still going to contact the restaurants, just to see if they can accommodate her in any way. Thanks again everybody!

 

[Dis703]

My four year old has FPIES and my twins have suspected FPIES. We took the four year old to WDW when he was 26 months and only had a handful of foods he could eat. We did prepare ahead of time and brought as much as we could and did some shopping while we were down there to keep the few things he could eat in the room. But it was tough as we didn't have a place to cook anything.

I also contacted special diets before going. He was also nursing at the time so I had to avoid his big allergens (rice, oats, banana, tapioca, peas) as well. I sent the chefs a list of the maybe 18-20 foods he could actually have (mostly fruits) and got varying results. Some were super awesome and specially prepared a handful of his safe foods. It was easiest at buffets where they had a great variety. They would go around and ask what we wanted and then prepare it in the back to avoid the cross contamination at the buffets.

If her reactions are severe though you may not want to take the chance as there are no guarantees. They do their best, but if she is that sensitive you never know.

Hope you have a great trip!

 

[jlr9882]

My 6-yr-old has over 20 food allergies and also have aeroallergens. We were able to request a VIP allergy cleaning to our Disney room. I also contacted special diets with all his allergens and a list of what was safe for him. It was also listed on on adr's. Counter service was harder to deal with because they are so limited on what they have there. We were on the dining plan though, and they went out of their way to make sure he ate. At one place, they ended up going to a table service to get him some safe food. Table service was easier. The chef came to the table and talked to me about what my son couldn't eat and what he would enjoy to eat. He had plenty of options, and we are looking forward to our trip in July. I did have some safe snacks for him and had his long list of allergies with me.

 

[mistysue]

How accommodating they are depends on what the 16 things she can have are. If she can have chicken in olive oil, I think every place we went offered that. On the other hand, if she can eat venison and only venison, I suspect difficulty.
As PP's have said- if you want anybody there to feed her, your best bet will be at table service, and likely buffets. The only buffet we went to last year that wasn't amazing with allergies was the breakfast at Hollywood and vine- but DS has many more options.

As far as chemicals and traces of food I would get her a stroller as a wheelchair pass so she can hide in it in areas that are high traffic to little kids. "Big people" rides are probably a bit safer if she just tries not to touch things.

Where are you staying? The chefs at POP were really willing to make our son special items. It would be worth contacting special diets and trying to talk to the chef where you will be to see if they can do anything or not. That will likely give you an idea of whether you want to trust them too.

 

[kjcauley]

How accommodating they are depends on what the 16 things she can have are. If she can have chicken in olive oil, I think every place we went offered that. On the other hand, if she can eat venison and only venison, I suspect difficulty.
As PP's have said- if you want anybody there to feed her, your best bet will be at table service, and likely buffets. The only buffet we went to last year that wasn't amazing with allergies was the breakfast at Hollywood and vine- but DS has many more options.

As far as chemicals and traces of food I would get her a stroller as a wheelchair pass so she can hide in it in areas that are high traffic to little kids. "Big people" rides are probably a bit safer if she just tries not to touch things.

Where are you staying? The chefs at POP were really willing to make our son special items. It would be worth contacting special diets and trying to talk to the chef where you will be to see if they can do anything or not. That will likely give you an idea of whether you want to trust them too.

We will be staying at the Art of Animation resort. I'm planning on purchasing a Dining Plan and contacting the table service meals we plan to eat at (Cinderella Castle, Corral Reef, T-Rex....) and I'm thinking about taking her special food with her in the park so we can all sort of picnic for the counter service meals. The only snack she will be able to make use of from the plan will be a bottle water, so I will definitely pack plenty of her own snacks.

 

[SueM in MN]

Thank you all for your helpful advice. I'm definitely going to bring her own food, and I made a mental note that if I have to, I think I can use the Infant care center in each park to microwave her food.(They are the only places I can find that have microwaves for use). I'm still going to contact the restaurants, just to see if they can accommodate her in any way. Thanks again everybody!

At the hotel, there will be a microwave in the food court.

You are correct that the only microwaves you will be able to use in the parks would be at the Baby Care Centers.
You will probably need to bring something to clean the microwave before use or make sure her food/dishes are protected. Milk and soy could be present from people heating formula and baby cereal would commonly include rice.

 

[mistysue]

We will be staying at the Art of Animation resort. I'm planning on purchasing a Dining Plan and contacting the table service meals we plan to eat at (Cinderella Castle, Corral Reef, T-Rex....) and I'm thinking about taking her special food with her in the park so we can all sort of picnic for the counter service meals. The only snack she will be able to make use of from the plan will be a bottle water, so I will definitely pack plenty of her own snacks.

I would talk to chefs at Art of Animation and also at POP, since it is across the bridge. If Art of An. can't do anything it's worth finding out if a nice meal is just a short walk away. If you were on your way in or out you could even just take POP's bus on your way.
Will you be in a suite or a standard room? The suite might make food prep much easier for you. In addition to just looking awesome they have a microwave.

 

[kjcauley]

I would talk to chefs at Art of Animation and also at POP, since it is across the bridge. If Art of An. can't do anything it's worth finding out if a nice meal is just a short walk away. If you were on your way in or out you could even just take POP's bus on your way.
Will you be in a suite or a standard room? The suite might make food prep much easier for you. In addition to just looking awesome they have a microwave.

Good tip about POP, since its so close. Unfortunately, due to price, I had to book a standard room. I know there's a 0% chance for a free upgrade, lol, but I agree that it would make things easier for food prep.... I just couldn't swing it financially.