Disney World and Epilepsy

[OneMoreTry]

So we're going back to WDW with our DD with epilepsy and PDD (basically like ADHD and mental retardation together). She's 11, had it all her life, and we know how to take care of a girl with epilepsy. We know what she can and can't do. We know what she needs and doesn't need. Her seizures are not a matter of "if" but only a matter of "when." She'll have them every day. A trip to WDW frequently means a trip to Celebration hospital for sutures.

We know how to deal with fluids and meds and meal times and avoiding the heat. WE know what situations are more likely to trigger seizures and what situations tend to be less likely.

We will be getting to parks at 9 and leaving by 1 pm -- she just can't handle more than that. We use Fast Passes and have a proven plan for each park to get in as many rides as possible in that short time. We know the rides that are feasible and the ones that aren't. WE only go to the parks 2-3 days out of a 6 day vacation. We spend more time at the pool.

Her older sibs are adapted to life with her and realize they won't be doing as much at the parks as other kids.

We know the rides that she can wait in line -- Soarin is a great example. It has a lot of space for her stroller and is cool and if she has a seizure people can get out of the way so we can take care of her. We know the rides that have great places to wait for people with her problem -- Spaceship Earth. We know the rides where she can't wait in the line even with a stroller -- Peter Pan and Splash Mountain (although I'm not sure we would take her on Splash Mountain any more since developed grand mal seizures). And the rides we would not even attempt like TOT, because if she had a seizure we couldn't protect her.

WE use fast passes a lot. In fact we do everything we can to NOT get any special privileges or accomodations. We probably only pull out the GAC about 4 or 5 times during a week. And I always feel a little guilty when I do. Although our daughter is now at an age when her disability is pretty obvious.

My point, and sort of question, is that it can be very frustrating to convey to a busy CM that we know what assistance we need and we're not trying to merely cut in line. But there are some rides she could otherwise ride if she didn't have to wait in the heat so long. A perfect example is Jungle Cruise. It is a great ride for her and she loves it. They do have a separate waiting area but it is still hot. We can wait 15 or 20 minutes maybe with a spray bottle and cold drink, but after that her chances of a seizure begin to rise.

I usually tell the CM that she can't wait in the heat for a long time, implying that we need a reduced wait time. Is it wrong to make that implication? Or should I actually be more direct and ask "Is there any way we can not have to wait so long in the heat? Otherwise she won't be able to ride on this ride."

I know the GAC isn't a 'pass to the front of the line,' and on the majority of rides we don't even use the card, but there are a couple rides that are great for her where a reduced wait is basically the only way she can ride.

Does anyone have any comments or suggestions or opinions?

 

[brat]

I know their are folks here who know the parks who can help more.

You did not say if she will be useing a stroller(just being under the shade might help).

Does she use a cooling vest?

You could ask that she wait in a cool shaded area but you know the parks better than I do.

I am bringing frozen stuffed animals with us to cool our 5 yr old.(they have a blue-ice type filling and we rotate them as needed).I also bring an ice cap with in case we need it.We keep these in a cooler attached to DHs chair.

 

[SueM in MN]

My point, and sort of question, is that it can be very frustrating to convey to a busy CM that we know what assistance we need and we're not trying to merely cut in line. But there are some rides she could otherwise ride if she didn't have to wait in the heat so long. A perfect example is Jungle Cruise. It is a great ride for her and she loves it. They do have a separate waiting area but it is still hot. We can wait 15 or 20 minutes maybe with a spray bottle and cold drink, but after that her chances of a seizure begin to rise.

I usually tell the CM that she can't wait in the heat for a long time, implying that we need a reduced wait time. Is it wrong to make that implication? Or should I actually be more direct and ask "Is there any way we can not have to wait so long in the heat? Otherwise she won't be able to ride on this ride.”


Does anyone have any comments or suggestions or opinions?

The problem with Jungle Cruise and some of the others like that with outdoor waits is that there really is no place else for you to wait out of the heat anywhere near Jungle Cruise. That is the case for many of the outdoor attractions.

It would not hurt to ask, but there is no way to estimate how much the CM might be able to help you. For example, the wait for Jungle Cruise is really related to how many other people with special needs are in front of you. If you get there when there are already other guests with special needs waiting, you will have to wait behind them.

I don’t know if you are able to get to the parks right away in the morning, but that is one way to avoid crowds and waits. If you can get there at rope drop or slightly after, it is possible to ride all the Fantasyland rides plus several others before 11am, while it is still relatively cool.

We can’t get our DD ready early enough in the morning to make rope drop, but she is much more functional late evening and night, so we often take advantage of the later hours at the parks. That also allows us to be there when it is cooler and the sun is either lower or down.

You may also want to look into one of the touring plans, such as TourGuide Mike (there is a link to his service near the top of the Theme Parks Board). Many people have posted that using TourGuide Mike allows them to avoid waits because it tells them which park and which area of that park will be least busy when. Many people have posted it is more useful to them than a GAC because it can help in ways a GAC can’t -like just getting around. Quite a few people have posted that their waits were seldom more than 10 minutes, even at busy times like around Christmas.

I don’t know if you have ever looked into cooling vests, but quite a few posters have reported good luck with using those too. They keep the core of the body cool and work much better than spray bottles to keep cool.

 

[KPeveler]

I also cannot wait in heat or sun for extended periods of time. I still ended up waiting for 45 minutes to get on Jungle Cruise because there were a bunch of other families with special needs in front of me, but the standby line was 5-10 minutes.

Sometimes it may be you check out the ride line if it is not mainstreamed (obviously mainstream lines will have a sign out front) and then have to go elsewhere. I have done that quite a few times.

I have also ridden Jungle Cruise and other outdoor rides after dark or first thing in the morning so that it was cooler. I found that very helpful.

 

[jmartinez1895]

First off I'd like to tell you that we have faced almost the same issues. Our son has epilepsy and has issues with the heat ( along with a laundry list of other heath problems). I noticed that you said that you go to the parks in the mornings and leave just after noon. Is there any particular reason that you go in the AM rather than PM. If you are staying at Disney you could take advantage of the EMH and stay late. We have done this and it was great. We would go to the park when it opened and only stay for about 2 hours. We would go back to the room and let our son rest and then eat lunch. Rest some more and then go back to the park around 4. After it got dark we would do the rides like Jungle Cruise. We would stay late with the magic hours and we would get to do everything he wanted to do, most more than once. I know that it might not work for your family, but I wanted to put it out there just in case.

 

[OneMoreTry]

Thanks for the advice. I like the idea about the cooling vests. I've never heard of that but will check into it.

DD is usually asleep by 9 pm, so that wouldn't leave us a lot of time in the evenings. Since we're staying at the Bay Lak Towers this trip, we may be able to do 2 hours in MK in the morning and another couple in the evening when it's cooler. Usually it's too cumbersome to drive back and forth with her to a park twice in a day.

 

[brat]

We have two types of cooling vests.

1st) uses a pump that hooks to a vest with tubing that ice water is pumped through.

2nd) uses frozen packs(think blue ice type stuff) that fit in pockets