Eating at Disney with PKU

[pat9283]

Hi all, gosh I haven't posted on DIS for while, since planning my wedding actually! I do check in often though.

Well since I last posted I have given birth to the our new Disney addict my beautiful little boy Riley who is now 1 year old! about 3 weeks after his birth we found out he has PKU, ( if you don't know what it is you're best googling as I'd take all day explaining haha!) but basically we have to limit protein in his diet or risk brain damage. He is otherwise perfectly healthy and with a controlled diet will grow up without any problems.
It also means he can't eat:

Meat, fish, dairy, eggs, soya, tofu, chocolate, nuts, seeds, beans etc basically any of your really good high protein foods

and can only have limited (very, very small) amounts of

normal rice, normal pasta, normal bread, normal pastry (we can get these things on prescription as a low protein version) potato, cauliflower, broccoli, peas etc

So we're looking to go to Disney again next year and as you appreciate, it takes some planning to take a child + supplements + special foods a 11hr plain journey away! So I'm looking for any advice, tips, pictures of food you've had, any help at all really. We're trying to make this trip about our first family holiday and not about PKU!

I've spoken to the Disney diet people who have sent me the e-mail form out and told me they use cambrooke foods to supply their low protein foods. However, being in the UK I don't have experience of Cambrooke foods so I really don't know what to expect or what type of meals we might be offered. Thanks in advance for any help you can offer. xxx

 

[lanejudy]

You will want to have a note made on any of your ADR's for TS restaurants. However, unless you intend to purchase a separate meal for him, a 1 or 2-year-old typically eats off the parent's plate(s). So you'll want to decide how you plan to do your meals - will you request a meal for the child, or will you eat based on his diet so he can eat from your plate. My DD also has a more unusual medical diet and while we noted it on our reservations, I couldn't really depend on the chefs to be that knowledgeable and it was much easier for me to just help her make the right menu choices. So you may find that noting the dietary need on ADRs along with making the right food choices from the menu is really how you'll "handle" his food needs. I suggest you check out the menus for various restaurants to see what is offered. Keep in mind they can usually cook anything plain or put the sauce on the side, and such accommodations. You are also welcome to bring whatever snacks/foods you know he can have - but neither TS or CS will heat anything for you so it will have to be cold foods. It's smart to start looking into things now as you'll have time to plan.

Enjoy your vacation!

 

[pat9283]

Thank you for your reply. I guess we will have to think nearer the time based on how much food he eats. At the moment the bulk of his food is fruit and vegetables filled out with prescription foods so even if I did order and let him eat from my plate I don't think it would be particularly filling for him without the special foods. It would be unhealthy for me to eat such low protein foods but wouldn't cause a problem in the short term. I'm sure there is a way around it. I've noticed on the cambrooke foods website they do some more child friendly products than we have over here. (I've actually heard that they're trialling their products here ATM so I might be more familiar with them by then). It's all stuff to think about really isn't it? I've been watching the boards for snack ideas too. I've got some good info so far, it's really helpful to talk to people who've been there. Thank you! x

 

[akcire]

We have a 18 month old Relative with PKU.

There are lots of support groups in USA for PKU. PM your email to me and I can get you some information. I know families in the group travel to Disney because of the accommodations.

Also make sure you contact special diets.

Finally not sure how it is in UK, but here most docs know next to nothing about the disease. It is really only PKU specialists who are experienced and able to give proper treatment. I say this only so you can research and find a PKU doc in FL, just to have a name in case your little one gets sick while here. I know anytime our relative needs treatment for non-PKU related issues we check point with the specialist to make sure it is right.

 

[CarrieR]

PKU is one of the few - very few - things Special Diets still wants "the form" for, so that they can notify chefs up front. My best friend and I actually just had a laugh about this, because she and I have allergies, and her sister has PKU. Of the three of us, her sister is by FAR the easiest to feed. (A lot of that has to do with the fact that she's in her early 20s now, so her protein tolerance is somewhat higher than it was when she was tiny.)

Anyways, I eat at WDW frequently as a vegetarian. I personally find that I have to seek out "good" protein sources, so in that sense you'll be in good shape with many vegetarian options - not a lot of nuts, tofu, etc - BUT many of my meals are starch-based, or cheese-based, so that would cause an issue for your DS.

I would think that most TSes would have vegetables of some sort as a side. CSes will be a little harder; a few places (Flame Tree) have a fruit plate. They also have salads but really, what 2yo wants salad every day?

I will ask BFF if she knows of that company, and if she has any suggestions. She is an expert in WDW, Special Diets AND PKU - she wrote her senior thesis on it in addition to having a hand in raising her sister - so I bet she has some great tips.

As always, WDW is great about accommodating all sorts. I'm sure you'll bring his formula/milk but other than that, I don't imagine you'll need to bring too much food along. And hey, it looks like Dole Whip is protein free, he might be able to have a frozen treat!

 

[CarrieR]

Double-replying. Talking to my friend now, and she said it's actually good that we are having this conversation now. We are heading to WDW in the morning so she will keep an eye out for some good suggestions for your DS. She also says that Disney is so nice because you can bring in tons of snacks for your DS without an issue. (We haul stuff around in our backpacks, as "safe" backups, and no one makes a peep - aside from the occasional security guard who wants us to share, lol!)

Unfortunately, she doesn't have any experience with that company. Aside from "milk," they opted to not order prescription foods for her sister and she just eats modified mainstream foods. Her sister was a teen when I met her, so the routine was old hat by then and they would just modify family meals for her (fam had pizza, little sis had small amount of thin dough, sauce, veggies. Etc.)

I'll try to remember to reply back when we return, but if I don't, feel free to shoot me a pm in ten days or so. I will have BFF fill me in on things that she noticed would be good for your DS.

 

[pat9283]

Wow thanks so much for your help! That would be brilliant if you could give me any info! I really appreciate it!

 

[PegIra]

We have 2 grandchildren with PKU ages 13 and almost 16, so the diet is something we know well. When they were at Disney, they never had any problems with meals. Disney chefs go out of their way to accommodate the diet. Lynn Paoella from Cambrooke foods not only owns the company with her husband David, but they have 2 children with PKU. That is why they started the company to provide food for their children and other children with PKU. If you contact Cambrooke Foods and ask to have Lynn contact you, I know without a doubt she would be glad to explain it all to you. She is a special person whose goal is to help everyone with PKU especially children.

Hope this helps.

Peg

 

[pat9283]

Wow thank you I will do that. We have a lady over here who makes 'Fate' foods mixes. They are an all purpose flour mix and a cake mix. She also has a recipe book available. She has 2 girls with PKU and is also really helpful.

I love that as parent's/relatives of PKU children, we're always willing to talk, offer advice/tips and basically bend over backwards to help! I guess it comes from having to do so much research to enable our children to live a normal life! I imagine it's the same for a lot of people with complex diets.

Your help has been invaluable, thanks so much. We will make this trip happen now I'm sure of it. With a little help from my DISfriends!