Disney with epilepsy

[moenjoejr]

My 5 year old son was recently diagnosed with epilepsy. We are still working with his neurologist to find the right medication to control the seizures he gets (his are very brief, but can come back to back to back, etc) and mostly when he falls asleep, although he does get some when awake

I did ask his doctor about disney and if there were any concerns she had. She didn't really have any, other than possible strobe lights (although this did not "appear" to be a trigger for him) and hyperventalation (which is a trigger for him). She said you may have to watch him excitement levels there, which is impossible with a kid at Disney for the first time. Has anyone had experience with a kid with epilepsy at Disney?

 

[minkydog]

Christian has nighttime seizures too. He is on 3
Meds. I can predict that if we have an exciting day he will seize around11
Pm. About all we can do is make sure he is eating regularly and getting rested. A spell in the pool seems to relax him. It's not unusual for hi h to ne a nap. And he is 17!.

 

[SueM in MN]

I only Have time for a quick answer, but you can look in the disABILITIES FAQs, Which is located near the top of this board or you can follow the link in my signature. Post three of that thread has information about specific conditions or concerns. Scroll down there post a little way and you will find an alphabetic List with epilepsy listed.

The most important things to consider are keeping on a schedule, especially with medications, avoiding dehydration, and avoiding lack of sleep. All of those things can lower the seizure threshold, which is the amount of stimulation it takes to start a seizure.
Lights are not a problem for most people; it's a very small percentage of people who have problems with strobe lights. And even in those people is generally lights flashing at a specific rate of speed. Disney World doesn't have any lights that could be considered 'strobe' lights when you think of those quickly flashing 'disco' lights that most people think of when they think of strobe lights. They tried to avoid regular flashes and are consistent flashes which cuts down the problem with sensitivity a lot.

 

[chloelovesdisney]

My sister has epilepsy. As Sue said, she is more prone to seize when she is tired, so it is important for her to get enough sleep. Opening to closing day after day will not work for her. Afternoon naps are important on long days.

She has issues with being shaken around, Dinosaur was not good and neither was BTMRR. She also has issues with the 3D movies.

 

[mrsfascinating]

My daughter has epilepsy she is now 11 and has been a Disney regular since she was 1. We keep to her schedule as much as we can, but have actually noticed less seizures when we are in Disney not sure if it's the change in altitude or what. Seizures are crazy things and just when we think they are under control they change. Have fun.

 

[lovethattink]

My 5 year old son was recently diagnosed with epilepsy. We are still working with his neurologist to find the right medication to control the seizures he gets (his are very brief, but can come back to back to back, etc) and mostly when he falls asleep, although he does get some when awake

I did ask his doctor about disney and if there were any concerns she had. She didn't really have any, other than possible strobe lights (although this did not "appear" to be a trigger for him) and hyperventalation (which is a trigger for him). She said you may have to watch him excitement levels there, which is impossible with a kid at Disney for the first time. Has anyone had experience with a kid with epilepsy at Disney?

We are Disney regulars, usually visit a Disney park once a week. My 8 year old has epilepsy. His seizures are mostly simple partials and mostly in his sleep. He is unable to spend a whole day at a park. Usually two to three hours is about all he can handle.

My son uses a wheel chair (Convaid Cruiser) while at the parks because exertion is one of his triggers. We have a GAC for him. One of the stamps on it says "stroller as wheelchair". Even though the Convaid Cruiser is a wheel chair, it looks more like a stroller and this prevents confusion for the cm. He also has sensory issues, so the w/c doubles as a safe haven for him. He also can take a nap in it too.

There are a few attractions that are seizure triggers for him, so he no longer goes on them. Star Tours, Mad Hatter, Toy Story Mania, all the coasters, and Universe of Energy. He use to have trouble with fire works and the night time blinking lights they sell, but he no longer has problems with these.

The heat and humidity is another trigger for him. We've found some great places in the park to beat the heat. At MK, the Mickey/Minnie and Princess M&G area is air conditioned, as is the fair M&G. At DHS, One Man's Dream is a great place to cool down so is the M&G area inside Magic of Animation. Epcot is the best park to stay cool since almost all the buildings are air conditioned. AK is the toughest park to stay cool.

Staying hydrated and well rested seem to help. We go at his pace and what he can handle and don't push him.

We also keep emergency medicine on hand should he need it and a pulse oximeter to measure his oxygen levels.

Be sure to check out SueMN's link. It really helped me tremendously when my son started with seizures a 2 years ago. Also feel free to check out my TR (the link in pink in my signature, it's a perpetual trip report of our outings to Disney and his epilepsy over the last couple years.