More Epilepsy Questions

[HappyStamper]

I've been reading posts discussing avoiding triggers to prevent seizures but I would like advice on how to handle it if and when my daughter does have a seizure. She is 15 and has had them all her life but we've still not identified any specific trigger or triggers. For a variety of reasons we have switched from Trileptal to Keppra and have not yet hit on the dosage to completely control her seizures. She is having them on average of once a week so she is likely to have one or more during our trip. I honestly don't know what the proper name is for the type of seizures she has is but she does remain consious while the right side of her body spasms (she has mild CP effecting her right side). After a seizure her right side will be weak and numb for a while and she will be very tired so she would be unable to walk. I guess what I am trying to ask is if she has a seizure will a cast member go get a wheel chair for us so that I can get her to a quiet place to rest or exit the park? I know that she would not need or want a wheel chair as long as everything is going well so we wouldn't wan to get one and push it around all day but I certainly wouldn't want to leave her alone to go get one if we need it. The excitment of planning this trip is quickly turning to stress as I worry about all the "what-ifs"!!!

 

[Purple Princess]

Oh my! I understand why you wonder about the "what if's". My DD has seizures and CP too and she is FINALLY under control after many, many years of trying different meds etc.

I can't answer the big question on what the CM's would do if your DD had a seizure in the park. My reason for replying is to say that I would wait to go if I were in your situation. I know your DD has been on many meds and no luck as yet but I personally would have been scared to take my DD before she was controlled.

Strobe lighting affects my DD as did lack of sleep. Thankfully she is seizure free right now but I still keep her away from the things I know will affect her. Also she would be set off in the car when passing certain trees that would cause a strobe affect with the sun. So many things could do it.

I wish you much luck on your trip. I'll say a prayer for your family.

 

[OneLittleSpark]

Yes, a CM will fetch a wheelchair for you if you need one. I've got joint problems and on a couple of occasions have had to ask for a chair during the day, and the CMs have always been really helpful and friendly. There are a few chairs located in all the First Aid stations, so they won't have to go all the way across the park to get it for you.

A number of people on these boards travel to Disney with children who suffer from seizures, and still have a wonderful holiday. If you know what her triggers are, and they are things that can be avoided with some help, you might want to consider getting a GAC. See the FAQ for more information on what they are and what they can do.

Good luck, have a wonderful trip, and if you do have any problems, ask a CM!

 

[HappyStamper]

Thanks! She does have an appointment with her nuerologist before our trip so I will be asking the doctor a lot of questions. Fortunately, flashing lights don't seem to be a trigger for her. Usually, but not always, she has seizures while she is sleeping or when she is very tired so our plan is to take it slow and easy and enjoy the things we are able to see and do and not attempt to squeeze everything in. I didn't know about the guest assistance card but I will ask the doctor to write a request that my daughter be allowed to be seated out of the sun while waiting.

 

[OneLittleSpark]

You don't need any doctors notes or proof of need to get a GAC (in fact they can get in the way more than they help) all you need to do is be able to explain your daughter's needs to the CM at Guest Relations in the first park you go to. They will then issue a card with the appropriate stamps on it, which you can use for the rest of the trip. If you find the accommodations are not suitable, just go back to any Guest Relations with your daughter, and ask for what you need changed.

I know you said she wouldn't use a wheelchair, but if she tires easily (and is then more prone to seizures) renting one out might help you all have a more enjoyable, fun filled holiday. A lot of people use wheelchairs in Disney who don't normally need to in the 'Real World', as there is so much walking, and it's really tiring, especially with the extra challenge of a disability. Just an idea you guys might want to consider, please feel free to PM me or post more questions if there's anything you want to know.

Have a great time !

 

[Cheshire Figment]

There is a team from Reedy Creek Emergency Services backstage at all four theme parks during operating hours. If there is an emergency in one of the parks ask any Cast Member to call 911 and there will be paramedics there within a few minutes. If she has a seizure she will be able to get medical attention, and then you can discuss a wheelchair with the paramedics.

 

[SueM in MN]

There is a large section about GACs (Guest Assistance Cards) in the disABILITIES FAQs thread near the top of the board. As was already mentioned, you don't need a doctor's letter to get a GAC.

My DD has had lots of seizures in the parks (her seizures are not well controlled), but we have less of a problem because she can't walk and uses a wheelchair. So, we've never had to deal with the "what do we do" question.
I have seen people sitting on the ground off to the side while a CM gets a wheelchair though.

Several things that really lower the seizure threshold (making seizures more likely) are dehydration, changes in schedule and tiredness. If you can keep those under control, seizures are less likely.