Anyone been to Disney with epilepsy?

[JMO]

We are planning a trip to Disney this year. My 5 year old has uncontrolled CP's averaging at our best right now about 5/week. 
Anyone been? Suggestions on things she can do, things to avoid. 
Would also love travel tips especially for airlines- beyond the obvious extra meds, keep them on you etc. 

[Bethany]

Disneyland or World?

[JMO]

Disney world in Florida. Specifically Magic Kingdom and Epcot. 
Thanks for helping me clarify! 

Bethany said:

Disneyland or World?

[Bethany]

I haven't been since I was a kid... but a lot of the stuff is the same as Disneyland. So, I will do my best..

It sounds like she may not be able to go on roller coasters in general... However, if Disney World has a story zone (Peter Pan, the Princesses, etc.) the rides there are mellow and fun. However, depending on her  triggers, Mr. Toads and Whinny the Pooh are both very visually stimulating. Finding Nemo - awesome! However, small, crowded and you are in a submarine. Buzz Lightyear is a lot of fun too, however, also very visually stimulating.

I know that Harry Potter is down in that area. They serve Butter Beer (not really beer) and the kids love it! I am dying to go. I do not know what else they offer.

If your daughter is able to go on other rides, I would ask the ride attend where the cameras are for the photos. Sometimes it can be a bit of a shock and they have a LOT of flashes. 

I hope this helps! Oh, and I know this is true of Disneyland, I'm not sure of Disney World... But for people with disabilities or handicaps that might not be able to wait in line, you pay $30 for a wheel chair. Then when you return it at the end of the day, you get $20 back.

[TravisEd]

I  went with my nephews few years ago.  There was one ride that I went on with them that caused a seizure; and I'm NOT triggered by lights.  The Buzz Lightyear ride, or whatever they call it.  The strobes at the end (for photos) did it.  I kept feeling like I'd be having a seizure but thankfully didn't.  Ruined my day.  I informed Disney about it but refused to accept the offered money (it had a gag clause in it).  So I'd say be careful on that ride.

--Travis

[JMO]

Thanks for the help! She's a typical 5 year old- super into princesses so she will love seeing them. She is on LGIT diet therapy so we'll be bringing and preparing most of her food. 
Thanks for the tips about Buzz. Our plan is to avoid any ride that would be dangerous if she had a seizure while on it. Something like the train that is mostly enclosed and that I can ride with her is ok but most rides will be off limits. 
She is not photo sensitive but according to our epi the strobe lights during EEG "stress her brain out". So we'll try to avoid anything too intense. 
I appreciate the suggestions though! 

[Bethany]

I am not photo sensitive, but too much gives me a bad headache. So, I have learned to either ask where the photos are being taken or learned where they all are in case I'm having an off day.

[skamp&angel]

Hi.

We went to Disney and universal last year with my son who has complex partial seizures. We got a letter from our neurologist stating his condition. You take the letter to guest services when you enter the park. You will get a pass that allows you to bypass some of the very long lines. This really helps to make your trip a bit less stressful. Enjoy.

[Southie]

I have been to Disney, Universal Studios and Epcot; in December - since I am photic, I did have some trouble with the light flickering in the dark and night time parade (at Christmas Time - that Universal Studio's Christmas Light Display); which did trip me off.

1) You are allowed to bring your medication with you as long as they are in its original container with its original labels

2) They do have special lockers if you do not feel that it is safe enough; free of charge, in their First Aid Station where your medication can be stored in - you can go to their web design page and call them up for more info if you so would like

3) If you know your seizure triggers, then by all means, avoid the ones the would trigger your seizures.

3) As implied above; the BYPASS rules have changed now - you actually now have to go and get all these by pass tickets yourself to avoid long lines ... but there is a loophole, unless you call well way in advance and have everything preset-up before your visit along with the doctor's/specialist's documentation; they will have someone with you. But it is YOUR responsibility to have someone with you, they do not provide anybody, services, et al.

4) One good thing about the "Med Station" is - you can get to be "banded", so that if it is necessary for you to have liquids with you (in some rides and some areas - you cannot bring food, drinks, etc... with you); they have a special bag which you get to sit up front as the bag is placed there by the employees who secures it and then removes it at the end of the ride. If by any means you feel funny or anything, they have a special area where you can recover with your party if it takes a few moments, or if a medical attention is necessary, they all have underground transportation.

5) It is imperative to have a list (good idea to have a spare business card of your Doctors) and mark them accordingly - e.g. Primary, Neurologist, Oncologist, etc... List of Drug Allergies, List of your Meds you are currently taking, the dosage and when.

NOTE: They will make you sign a waiver that it is not Disney or the Park's responsibility if something were to happen to you; yadda, yadda, yadda, and that you assume all responsibilities and risks. That is, if you elected to use the medical station provided by the park(s). You do not have to use this.

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If you "Opt Out" - depending on what State you are in, for example, Florida residents have to have original bottles and original labels and their Drivers or Florida ID to match it and must be presented at the gate for Inspection, if you were in Orlando. They always have Law Enforcement Officers; while some Out of State, may be questioned about specific drugs, they may be summoned over to the Law Enforcement Officer after entry to be questioned first before entry into the park. This is why it is handy to have those duplicate business cards, the medication list, and allergy list; some people go to the extreme as to what Hospital they go to (at their own State).  Florida is very strict on narcotic laws - no impact or geared or aimed towards people with Epilepsy... it impacts anyone and everyone who has to take narcotics - PERIOD.

When I went - I asked my Pharmacy to make a small bottle (called vital) so I would not have to lug the huge bottle everywhere just for a few days away; so that my main prescription bottles remained with my mother, even though I kept a couple days for spare "just in case". It had the original label and everything and I did not need to use the Medical Station for the distance was just too far away from all the attractions to go back and forth that it wasn't worth the time and effort (in my humble opinion).

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Best Advisories I can give you is this:  GIVE YOURSELF A FREQUENT BREAK NOW AND THEN; DON'T DO A CRAM JAM SESSION, Being overly tired is a sure-fire way to trigger yourself into a seizure mode! It's okay to find a spot and grab a drink and lie down on a bench and grab a quick wink and rest; it will pay off!  If you ever by the end of the day / night - feel drained and dead tired ... IT IS TIME TO CALL IT QUITS! Play it safe and not sorry; you had fun after all - pretty much everyone else is tired as well; trust me, for many ... the excitement itself can wear you out!

I have been with Disney to Sea World for decades, they no longer excite me - yet, the Epilepsy in me does not like them.

:-/

[JMO]

Thanks for all the tips! Since she is so young we will try to stick to her regular schedule. 
I got the number for disability services and will call them well in advance of our trip to try to organize a pass ahead of time. My daughter has some motor delays so we will need to use our stroller like a wheel chair at times, she will need breaks and to stay hydrated for sure. 

[Karen L. Gardner]

Keep away from flashing lights.  Let her have a good time.  Don't think about the E until you have to.