Taking teen with epilepsy to Disney World, what to avoid?

[rcraw45425]

We are taking DD's best friend to Disney with us in November. Beach Club is already booked. this is her first time at WDW, although she has been to Disneyland before. Approximately 8 months ago she began having seizures, neuro diagnosed her with epilepsy and started her on meds. As long as she is diligent with the medication she is, for the most part, seizure free. My question for you on the disAbilities board is what rides/shows should we avoid? DD looked on the WDW site at the warnings but told me that most pertain to pregnanccy and back/neck injuries. DH is an MD, so I feel a little better about taking her with this condition, but he admists that he's not sure which ones are severe enough to induce a seizure. Thanks a bunch in advance.

 

[Cheshire Figment]

Hi and to disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Partway down Post #3 are some links concerning WDW with epilepsy which should be a good start.

Or, if you want an easier route, click on the link in my signature.

As a precaution it would be a good idea to get a temporary medical power of attorney signed by both of her parents and notarized. Also any insurance and other information which might be needed. This way if there is any urgent medical needs you would have the legal ability to arrange for services.

 

[Mary976]

You might want to check with the girl or her parents as to if they have noticed certain triggers to her seizures. For example, some rides have flashing lights, which can trigger a seizure in some people, but others might not be affected. Anyway, if you have an idea of what she needs to avoid, the board might be better able to assist you. There have been other posts about traveling with someone with epilepsy, so I'm sure plenty of people here will be able to advise.

Have fun!
Mary

 

[SueM in MN]

The couple of threads in post #3 of the disABILITIES FAQs thread are the best information.
My DD has epilepsy, with 2-4 seizures per month and she has had a seizure at WDW, usually once per trip.
Here are some of my suggestions from our experience:

• keep medications on schedule as much as possible; setting an alarm on your cell phone is a good way to remember since time seems to go quickly at WDW and all of a sudden it's 2 hours later than you thought it was.
• a small container for one dose of medication is a good idea. When you are out of your 'normal' schedule, it's easy to forget whether or not you took a dose. A one dose container helps a lot - if it's still full, you didn't take it.
• take an extra dose or 2 with to the park; helpful in case you drop/lose a pill or end up staying later than planned.
• keep hydrated; water, not pop or coffee, which can actually dehydrate you.
• get enough sleep.

All of those things (getting off schedule with meds, missing doses, dehydration, overtiredness) can act to lower the threshold for seizures (how easy it is for a seizure to be triggered.
If the person has any particular things that act to lower the threshold/trigger for them, you would want to avoid those things. In general, there are no specific things in any attractions that are common triggers. Some attractions have lights, but even though some look sort of 'strobe-like', none are actual strobe lights. There is more information about that in the links in the disABILITIES FAQs thread.

 

[I Love Pluto]

Epilepsy is as varied as the people who have it. Seizures have different triggers in different people. I personally cannot do any 3D shows or any coasters or mountains. I also cannot handle the monorail or the ferry, which makes travel to MK rather difficult if not using the resort bus.

Traveling with this girl will be a challenge since she is newly diagnosed. My best suggestion is to TRY different things with her, not to avoid everything. You are fantastic people to face this challenge with her.

 

[kaytieeldr]

Whereas I can do anything (even drink, in moderation) as long as I continue taking my meds as prescribed.

Respectfully - and I know you didn't 'mean' anything with your choice of words - the teen has epilepsy, she is not an epileptic teen. It's - oh, what's the word? - stereotyping? no, but it'll come to me - to identify the person BY the medical condition. I have epilepsy, I'm not an epileptic adult.

 

[rcraw45425]

Whereas I can do anything (even drink, in moderation) as long as I continue taking my meds as prescribed.

Respectfully - and I know you didn't 'mean' anything with your choice of words - the teen has epilepsy, she is not an epileptic teen. It's - oh, what's the word? - stereotyping? no, but it'll come to me - to identify the person BY the medical condition. I have epilepsy, I'm not an epileptic adult.

No offense taken, just trying for proper wording, grammatically.
Sue in MN and Cheshire Figment, thanks for the advice on the FAQ's, I'll check it out. She is a typical 13 YO, scatterbrained, going in all directions. Her mom has her setting her cell phone alarm to remind her (phone is permanantently attached to her hand, the texting is constant). I constantly remind/ask her about the meds, last night she didn't taker her 8PM dosage with her whe nshe came over ( I found out at 10PM) which made me a little stressed, but she was olay till Mom picked her up shortly afterward. I explained to her that she will be taking an extra dose with her at all times we're down there for my sanity!

 

[I Love Pluto]

I am an epileptic adult.
I am an adult with epilepsy.
I have no problem with either sentence.

 

[rcraw45425]

I am an epileptic adult.
I am an adult with epilepsy.
I have no problem with either sentence.

Thank you, I did edit the title to avoid offending anyone.

 

[kaytieeldr]

Thank you VERY much, rcraw! I just hate being identified by my medical condition (except, of course, in a medical setting/situation ). Epilepsy is just one small facet of being me - and we all know I'm special

 

[rcraw45425]

Thank you VERY much, rcraw! I just hate being identified by my medical condition (except, of course, in a medical setting/situation ). Epilepsy is just one small facet of being me - and we all know I'm special

You know, it's funny, we don't focus on her "condition", probably because we've known her since they first moved here from Germany in second grade. I guess the only reason I'm dwelling on it is because I want her to have a great time and stay seizure free because it upsets and embarrasses her so much when she has one. I don't even think that many of the kids at school even know about it. I had no idea that people focus so much on other people's medical conditions. To me this is like living with my SIL's type 1 diabetes, we just plan around it, and keep an eye on both our girls since there's a chance they could turn up with it.

Again thank all of you for your advice and suggestions!

 

[bopper]

As the mom of a teen...Sit the friend down and say that you want her to tell you if she has any issues/episodes. Tell her you won't freak out but you want to make sure you know what is going on so you can plan things accordingly. Since her taking her medicine directly affects you, I would also have you set your cell phone alarm to ensure that you see her take her meds. I am all for self-reliance but in this case i would follow up.