Epilepsy

[Sinderelly]

My first time ever posting on this board. My son suffers from severe Epilepsy. I have taken every precaution I can to make sure he gets enough rest during our trip. I have puposely scheduled everything to accomodate his sleep schedule. Lack of seep significantly increases his risk of a seizure. He also suffers from back pain and has had spinal fusion surgery all due to injuries caused from seizures. I am very afraid he will have a seizure at WDW and be in harms way.

Are there any other things I should be doing that would help him? I'm not sure I fully understand DAS and if that might be something that would help him? His back pain is worsened by standing on hard surfaces. Do we wait until we arrive for DAS or is that something I need to request in advance?

We are staying at AKL Kidani by renting points to give him a quiet place to rest. Any advice is most appreciated.

 

[lanejudy]

to the disABILITIES Forum! The WDW - Disability Access Service Card thread pinned near the top of this forum should answer your questions about DAS. It cannot be requested/acquired in advance.

Post #3 of the disABILITIES FAQs sticky has some info about seizures.

Enjoy your vacation!

 

[kristensideaoffun]

My daughter has epilepsy, as well. We have never visited WDW, but have Disneyland annual passes. My daughter has a DAS but we usually only use it on hot and crowded days. It allows us to find an alternative place to "wait in line." We usually opt for a quiet, air-conditioned restaurant or store to occupy our time before it is our turn to ride. You will have to get the DAS from guest relations when you get to WDW. While you are at guest relations getting the DAS, ask them to circle quiet rest areas on a park map for you. If your son has photosensitivity, they will be able to provide you with a list of rides to avoid. Also, be sure to ask them what you should do in the event your son has a seizure.

Most importantly: Try to relax and have fun!

 

[SueM in MN]

Besides rest, there are 2 other things that are very important to control.
The first is medication times - it's very easy to get off schedule during a WDW trip. We set a timer on our phones and have pills in a daily pill container, so it's very easy to make sure to take all doses.
The second is avoiding dehydration. Many people drink sugary or caffeine drinks, but those can actually dehydrate you more.
Heat is also an issue for some people, at least in part because it can increase the chance of dehydration.

My DD always has at least one seizure while at WDW. She uses a wheelchair because she can't walk, so we don't have to worry about her falling in case of a seizure. If your son has any warning a seizure is about to occur while in line, if he's not able to get out, he should sit where he is and someone else get a CM. They do have wheelchairs at attractions and can summon help quickly.
Even though he can walk, he may still want to consider a wheelchair. That would give you ready access to a wheelchair in case he has a seizure, but also would give him the ability to sit wherever he is and/or alternate position. Many people with back pain find it helpful to push something. You, of course would need to be careful of the wheelchair getting away from him if he has seizures without warning, but just wanted to put a wheelchair out as a possibility.

Keep in mind that if he has a seizure on an attraction and is not able to get out at the end by himself or your help, you will likely need to wait for the CMs to request medical/evacuation help since CMs can't physically assist guests with getting on and off attractions.

This is a link to the WDW Guide for Guests with cognitive disabilities.
https://wdpromedia.disney.go.com/me...bilities-services/wdw_cognitive_guide_rev.pdf

Even though that is the audience it is aimed at, it has a lot of information useful to guests with other disabilities. It includes the duration of attractions - for example, Ellen's Energy Adventure is a very long attraction and once you are on, it can only be stopped in emergency. It also lists a number of quiet places to wait or get away for each park.

Kindani is a beautiful resort, but it is one of the farther out ones, so getting there from a park is going to take you some time. You may want to keep in mind that that at MK and Epcot, you have resorts close by the park that you can get to easily in case you want to get away from the park, but not go back to your resort.
First Aid in each park also has cots in case he needs to lie down in a cool, quiet place.

 

[SueM in MN]

Besides post 3 of the disABILITIES FAQs thread, which has some information about epilepsy, there are a few posts on page 2 of that thread which may be helpful to you.
http://www.disboards.com/threads/di...ed-1st-trip-next-trip-wish-trip.595713/page-2

Post 22 has a list of attractions where all guests must stand in one place for at least a few minutes. Most of these are preshows or attractions that load in batches.

Post 24 is a list of attractions with bright or flashing lights. Although strobe lights are what most people think about when they think of epilepsy, the majority of people with epilepsy don't have light sensitive epilepsy. Even those who do, usually only have a problem with certain light flash frequencies. WDW doesn't actually use lights in those flash frequencies.
There is more information about that in post 24.
If you are not sure, ask/have him ask his doctor about whether or not he is sensitive. Exposure to strobe lights is one of the ways they try to trigger a seizure during initial evaluation for seizures, so most people do know (or their doctor knows) if strobes are an issue.

 

[Sinderelly]

I already love it here. Thank you everyone for the very helpful info! Jeffery doesn't have the sensitivity to lights per some testing that was done.

I feel better. As a mother I am of course full of worry and my biggest fear is him having a seizure and falling especially while riding an attraction.

Epilepsy is a vey difficult diagnosis because of the unpredictability and most treatments (so far) have not been effective. He has no warning a seizure is coming on and if he has one he will have multiples that same day.

He will have a scooter near in case of need as my DH will be using one because he is in a leg brace. I love the idea of finding the cool, dark and more quiet places. Thank you again everyone!

 

[Gracie09]

I already love it here. Thank you everyone for the very helpful info! Jeffery doesn't have the sensitivity to lights per some testing that was done.

I feel better. As a mother I am of course full of worry and my biggest fear is him having a seizure and falling especially while riding an attraction.

Epilepsy is a vey difficult diagnosis because of the unpredictability and most treatments (so far) have not been effective. He has no warning a seizure is coming on and if he has one he will have multiples that same day.

He will have a scooter near in case of need as my DH will be using one because he is in a leg brace. I love the idea of finding the cool, dark and more quiet places. Thank you again everyone!

Hi -
I would be very leery of having him drive an ecv after a seizure especially if he has them with no warning and multiple per day. If can be very dangerous for him and those around him. I think the best suggestion would be to alert the nearest cm, get a wheelchair and go to the first aid station where he can rest and recover.

 

[SueM in MN]

Hi -
I would be very leery of having him drive an ecv after a seizure especially if he has them with no warning and multiple per day. If can be very dangerous for him and those around him. I think the best suggestion would be to alert the nearest cm, get a wheelchair and go to the first aid station where he can rest and recover.

i agree.
My daughter has a power wheelchair, which we don't bring to WDW.
She doesn't have any specific warning of a seizure, but we can tell she is usually getting kind of grouchy before.
We would not let her drive her power wheelchair after a seizure or if we thought one was imminent. There is a lot of risk for accident.

 

[lost*in*cyberspace]

.......

He will have a scooter near in case of need as my DH will be using one because he is in a leg brace. I love the idea of finding the cool, dark and more quiet places. Thank you again everyone!

Is he old enough (18) to operate an ECV?

I, too, think a wheelchair would be a better option.