Epilepsy questions

[AngieWin]

We will be in WDW in July and my dh's niece (21 with epilepsy) and his mom (64 and diabetic) are traveling with our family (myself, dh, dd13, ds12, ds4, ds almost 2) and staying offsite.

We have done WDW and DL many times, but this is our first time looking at possibly needing ECV or GAC and planning for what ifs. Just not sure where to start or if we will need the ECV or GAC (really just starting to find out what they are). Dneice will be meeting with her neurologist prior to our vacation. I have read through the stickies while I dont want to misuse any of the above, if they will be needed I want to be prepared and plan for them. Any suggestions?

 

[forr2grls]

Hi! Our 8yr old dd has Epilepsy. We have been to WDW twice with her. We did get the GAC both times. Here's my advice-limited sun exposure because of meds,plenty of breaks in air conditioned places and LOTS of water to drink to prevent over-heating.And also for her to take her meds at her usual times. Do you know if one of the triggers of your nieces seizures is over-exertion?If so i would recommend a wc or ecv,either way still get the GAC for the sun exposure.If you have any questions,feel free to ask!


Hope you have a wonderful trip!

Paula

 

[3DisneyNUTS]

we always get a gac and we have a special needs stroller so he can sleep off it is is a particularly bad one. We have been to DisneyWorld/Universal/Disneyland 8 times with Ds since he was 3 (when he was dx with epilepsy). We have gone with no seizures, 7 a day and maybe the occassional. The only time we did not get a GAC was when he had full control which may have been 2 out of the 8 times. It is a tremendous help, makes the one with epilepsy feel liket they are not missing out because of their seizures and reallky helps eveyone enjoy WDW. Without it, in our situation, we could not go if he did not have control. It would be a nightmare.

 

[whgrn]

Will we need the GAC in November? My main concern for DD is sun exposure, and certainly it won't be like in the summer. But should I get one? She's been seizure free for a year now (Praise God!) but she's on a bunch of meds, so I want to be careful.

TIA

 

[forr2grls]

Will we need the GAC in November? My main concern for DD is sun exposure, and certainly it won't be like in the summer. But should I get one? She's been seizure free for a year now (Praise God!) but she's on a bunch of meds, so I want to be careful.

TIA

I would still get the GAC. We went in December and the sun was still quite strong.....Hip hip hooray for 1 yr!!That's great!!..What meds is she on?

Paula

 

[I Love Pluto]

A GAC for epilepsy will help in circumstances such as -

1 - The stretching room at the beginning of Haunted Mansion. Skip it. It's too much for an epileptic. Instead, go to the line used by wheelchairs. They'll take you to the ride part. They will stop the ride so that you can get on if the moving floor bothers her. The only problem will be when the ball room is under your car (height). Tell her to close her eyes for that part. She'll be fine.

2 - If she has trouble with lights or sound or 3D - you won't know that until you try one. We tried Philharmagic, and the GAC permitted us to sit by a door for an easy exit. (We did need it. No 3D for me.)

3 - Fantasmic - Walking down open stairs is often a trigger. The CM will take you down the wheelchair ramp (walking) so that the height is not a problem.

4 - Consider getting a first-floor room if height is a trigger.

5 - Do not go on anything that has "Mountain" in its title. It's way too much.


Enjoy your trip! You will still experience a LOT at Disney. She'll be able to do more than you think she can.

 

[whgrn]

Forr2girls, she's on Depakote, Zonegran and Lamictal. Quite the cocktail for a 68 pounder!!

 

[SueM in MN]

I think you need to find out what things are triggers for her; some of the things people have mentioned are problems for them might not be a problem for someone else.

Things that do lower the seizure threshold (make it easier for a seizure to occur) are dehydration, tiredness and change in routine (in terms of when meals, medication and bedtime are). Some seizure medications make the person more sensitive to the heat or sun. Keep in mind that even if you do get a Guest Assistance Card (GAC), you will still have to deal with the sun and heat while not in attractions. There is information about GACs in the disABILITIES FAQs thread near the top of this board.

For most theater shows, the door you come into the theater with is directly across the theater from the exit door. They 'load' the theaters from a preshow area on one side and 'unload' them from an exit door directly across the theater. Keep that in mind when choosing seats and if you need to leave early, you will be close to the exit. Most people try to get seats in the middle of the theater, so the end seats (unless the theater is full) are often empty.

I would not recommend an ECV for anyone who is worried about having a seizure at WDW unless they are well controlled and have warning when they will have a seizure. It's a bit like driving a car and, although the perrson is not going to get tired from walking if they have an ECV, it takes a lot of concentration to drive one in the parks, especially if it's busy. That can be more tiring for some people than walking would be.

 

[forr2grls]

Forr2girls, she's on Depakote, Zonegran and Lamictal. Quite the cocktail for a 68 pounder!!

Oh my! That is quite a combo! My dd is on Carbatrol and zonegran.I do not care for the decreased sweating and increased risk of dehydration with the zonegran.
Wishing continued success in being seizure free!

Paula

 

[OneMoreTry]

Get a GAC. Use it if you need it. Don't use it if you don't. don't be bashful to tell the CMs you can't wait in the heat due to her illness.

We use FastPasses, but if we don't have one we use the GAC unless the line is short. However, we usually only end up using the GAC about once per park because she is usually pooped out by lunch time when the lines are just starting to get long -- so we eat and then she heads to the room for a nap.

 

[tiki23]

There are different types of seizure disorders, different triggers and different levels of control.

I haven't had a seizure in 7 years (thank you, Lord!) so when we went to WDW last year, I wasn't worried. My oldest DS had the onset of seizures 8 months before our trip but with medication he's been seizure-free (down on my knees thanking you, Lord!)

I'd be sure to ask your niece's Mom what to be aware of...and your niece herself. She may not want or need a GAC and may be upset if you try to get her one.

I've lived with epilepsy for 25 years and the only thing it has stopped me from doing is scuba diving. However, I know that the first couple of hours after I get up is a time to watch for any warning signs and that I need to take my meds, eat and rest on a regular schedule. But we ran all day long and into the evening at WDW and both myself and my DS did just fine.

I hope you have a wonderful trip!