8 yr old son w/rare syndrome

[thesaurinis]

We will be traveling to Disney for 3 nights/4days (really not 4 days since we will be leaving early on the last day to catch our cruise) and I need all the tips I can get for my son. He is 8 yrs old with a rare syndrome and we have been granted a dream trip. He can not walk more than 1/4 mile in any given time frame. He also gets very over heated easily, has seizures, headaches (alot of times caused by the sun/heat) and many many other health issues. We will be traveling the end of September and i have heard its still pretty hot then. Any preferences for what restaurants to eat at (we are on the dining plan deluxe one they booked I know holy food), what rides to make sure he gets to.

They also have us booked at Allstar sports and I was thinking of calling to see if we can upgrade that to a moderate resort. I have heard the values are very crowded and the busing is usually awhile due to the crowds. He is very impatient and has wicked anxiety (on meds for it ) and if we can avoid having a panic attack I will do what ever is possible.

Anything else you can think of would be of great help too. Thanks in advance.


I am also considering doing a trip report but have no idea on how to do one so I guess I better look into that too.

 

[Menfusse]

I'm not help, but wanted to post that he sounds very similar to my dd. She's 5 and has mitochondrial disease. They have very similar issues it sounds. I wanted to post so I can watch for tips. We are still waiting to hear for sure if her dream trip is granted, but they feel like it will be.

Does he have a cooling vest? That's the only suggestion I can pass along since I'm not help with the actual Disney stuff. It's been a life saver for my kiddo and if we get to go to Disney, I will definitely have it handy.

 

[jmartinez1895]

Does your child still fit in to a stroller? If so then bring yours or rent one and go by guest services and get them to give you a GAC for a stroller as a wheelchair. If he is to large then could you rent a wheelchair from him. This will help with some of the issues, but a stroller with a hood would be great because you can use the shade. Look into getting a cooling vest. Our last trip we bought a water bottle that has a fan on it and that was a life saver. If the people granting the trip have not already made arrangements ( like make a wish does) be sure to go to guest services at the first park you go to and tell them about your sons needs. They will help you out. As for meals, my kids love that characters meals..all of them. It is a great way to see the characters and because you don;t have to take away from your park time to stand in line to meet them. As for upgrading your room. The mod resorts have rooms that a tad bigger. We have stayed at POP and POFQ. We loved them both, but to be honest found the buses at POFQ t be worse that POP as far as crowding and waiting for them. My son has seizures and one thing that we did not know about until a later trip is that you can request bed rails for the bed. This made us feel better because we did not have worry about him having one and falling out of the bed. Also, if he has meds that need to keep cool, you will need to request a fridge at the value resort, just be sure to tell them it is for meds. If you have medication or medical supplies that you will need at the park with you, but either need to be kept cool or you don;t want to luge around, go by the first aid station at the park and they will store it for you. This is also a great place to and let him rest and cool off a bit if he gets too hot.

 

[thesaurinis]

Thanks for those tips. We don't have a cooling vest and have never heard of one. Our son is to big for a stroller, but we have a wheelchair for him. I just worry about his chair because its black and we all know that attracks the sun. We are from Central NY so hot temps are never a problem here. LOL

We have been to Disney 1 time a long time ago (5 1/2 yrs ago) and I never had to worry about anything seeing son was in a stroller and we didn't know all his medical issues at the time.

My sons syndrome is Oculo-Ectodermal Syndrome with jaffee Campanacci syndrome. There is only about 15 cases in the world of the OES. He is now on the panel of children being followed/studied with this condition.

Thanks again and I will keep looking into more things. The fridge tip will help seeing we do need to keep 1 of his meds refridgerated and the yogurt for him to take it with. Luckily I wont have to worry at the park about any of the meds since its just am/pm times unless he needs tylonal/motrin/pain meds.

 

[peemagg]

I would just place a towel or pillowcase over the wheelchair to keep it a bit cooler, especially when not in the chair.

Maybe renting a car and using it instead of the buses would be better for your son?

 

[Menfusse]

Thanks for those tips. We don't have a cooling vest and have never heard of one.

There are different kinds. The ones that last the longest, rely on inserts that you freeze. But this does add weight to it and my dd can't handle that. So we went with an evaporative style. You wet it, then wring it out. When worn, as the water evaporates, it takes body heat with it. It really works quite well. All you have to do to "recharge" it is wet it again. We got ours at silvereagleoutfitters.com I can't post a link yet, but it's the child's cooling vest.

It's probably the least expensive we found and easiest on and off on the go. We also got a small clip on fan that clips onto her chair and blows air on her when needed. I would definitely lay something lighter colored over his chair, such as a light colored towel. That may help a lot with it holding heat.

Good luck!