Epilepsy question

Tripletmom2001

Earning My Ears
Joined
Mar 23, 2010
I have a 16 year old son who was seizure free for 7 1/2 years until our 2016 Thanksgiving trip to Disney. He had a seizure on Test Track our last day of vacation. Since then, we have not been able to control his seizures. Last month he was in status epilepticus, stopped breathing and was put on a ventilator. Our other children's high school band is traveling to Florida between Christmas and New Years. We are following the band down and plan to have one day at Magic Kingdom and a couple of days at Universal. We saw his new epilepsy specialist yesterday and his advice is to avoid all rides with sudden movements and lights since we do not know what his triggers are. Most of his seizures occur between 4:30-8:30 pm. This will be our family's 7th trip to Disney and it will be difficult managing his expectations. We have never been to Disney during the Christmas holiday and I anticipate it being hectic. We are having breakfast and dinner at Magic Kingdom, but plan to leave the park after dinner. After reviewing the posts, I am considering renting a wheel chair for him since the park will be busy and his seizures are unpredictable. He also has autism and limited language. He does not let me know when he is about to have a seizure or when he is having one. What are your thoughts? Would a wheel chair be helpful or make it more difficult to maneuver through the park. Thanks!
 
Sorry to hear his seizures started again. It sounds like there may be multiple issues involved (including puberty).

I think a wheelchair makes sense in your situation. If he was to have a seizure, you at least have a safe place for him and a way to get him to First Aid or outside of the attraction to recover.
A wheelchair might also be helpful for issues related to autism - especially since you are going at a busy time, it will give him a little more of a place to retreat.
If you’ve never been there at Christmas and New Years, anticipate it being so busy that you can’t stretch your arm out without hitting someone else. A wheelchair would be easier than trying to keep track of him in those kinds of crowds.
The busiest will be the actual holidays - you might want to check into what activities your resort has also.

There is a post in the disABILITIES FAQs thread on page 2 about epilepsy. I copied the general info and the MK INFO from that post for you.
See also post 3 on page one of the disABILITIES FAQs for more information about epilepsy.
Most people think of strobe lights when they think of seizures, but most people with seizures don't have any problems with strobe lights.
This is something to talk to your doctor with, but in for most people with epilepsy, the lights at WDW won't cause any problems.

Things that are very important to be aware of are sleep deprivation, dehydration and getting off schedule with medication. All of those things can lower the seizure threshold (how easy it is for a seizure to occur). It's very easy to get off schedule or forget medication while on vacation. One things we have found that helps with this is to actually use an individual dose medication container and an alarm (on our phone or iPod) as a reminder for medication times.

There are not actually any attractions at WDW that use lights that are technically strobe lights (i.e, fast, regular flashes of light) and they do not have any warnings for seizures and/or strobe lights on any attractions. Where they do have flashing lights, they are always irregularly flashing, which is a different situation.
Most true strobe lights flash many times per second, but slowing to 5 flashes per second or less means that the majority of even photosensitive epileptics are not going to have a problem. Only about 3-7% of people with epilepsy are photosensitive and have problems with lights; of those, only about 5% would have a problem with a light flashing 5 times per second or less.

If you do encounter flashing lights and are concerned, the Epilepsy Foundation recommends covering one eye and turning/looking away from the direct source of light. The reason for covering only one eye and looking away from the direct light is to prevent both eyes from sending exactly the same information to the brain.
This should work whether someone has a problem with epilepsy or has problems with lights for another reason.

This is a list of attractions I know of with light effects of some type. Many attractions have a single light or 2, so it is difficult to list all. But, I am sure that we have included most of them.
MK
  • Enchanted Tiki Room - periods of darkness with simulated lightning. The lightning is random and short.
  • Pirates - some lightning flashes in the first dark part of the ride. Some random flickering from simulated flames in the last half.
  • Big Thunder Mountain Rail Road - there are no light effects in this attraction, but if you are riding on a sunny day, you will go in and out of dark tunnels repeatedly at high speed.
  • Splash Mountain - on a sunny day, there are several places where you will go from dimly lit indoor areas to outdoor. The ride moves slowly, so the change is slow. There is a single bright flash when your picture is taken during the big drop.
  • Seven Dwarfs Mine Train - no light effects, but on a sunny day, you will be traveling in and out of dark areas into bright sunlight.
  • Haunted Mansion - almost at the end of the preshow, there is a flash of lightning at the top of the ceiling. Boarding area includes flickering wall sconces.
  • Small World - the end scene includes numerous ropes of white lights that blink on and off in a regular pattern. I would describe it as a traveling pattern - as one light goes off, the next light in line goes on. So, the light travels down or across the strand of lights.
  • Buzz Lightyear - just before the last room of the ride, there is a long narrow tunnel room with swirling red lights and flashing white lights. The swirling and flashing are not rhythmic. The last room of the ride includes several very bright random flashes of white light.
  • Stitch's Great Escape - Most of this attraction takes place in the dark, but there are some random light flashes at times (while looking for Stitch)
  • Space Mountain - multiple flashing lights
 
This is a list of attractions with warnings copied from the disABILITIES FAQs thread:
For Magic Kingdom:
  • Splash Mountain - Minimum height 40 inches. This has several small drops and one very large drop. The big drop takes you down at a very extreme angle at a high rate of speed (I think you get to 40 mph). At the bottom, your ride car stops abruptly. Most of it is fairly smooth, but during the drops, you can get jostled. It is also difficult to get in and out of because the ride car has very small openings and you would need to lift her up quite far over the side. Individual lap bars
  • Big Thunder Mountain Railroad - Minimum height 40 inches. A roller coaster. Has no head or neck support and you get jostled a lot side to side. Sudden changes of direction that jerk you around a lot. Lap bar that serves both seats. If one person is larger than the other, it will be loose for the smaller person.
  • Tomorrowland Indy Speedway - Minimum height 32 inches. Small, low to the ground gas powered cars. They are loud and smell of gas. Because kids are driving some of the cars, you can get bumped from behind. Even if you dont get bumped, it can be a jerky ride. No neck support. Seat belt.
  • Space Mountain - Minimum height 44 inches. A roller coaster in the dark. Guests ride single file in separate seats. T bar lap bar.
  • Goofys Barnstormer - this was recently renovated. It is a short roller coaster. WDW does not give the usual general warning, but just says "Expectant mothers should not ride." Lap bar shared between 2 seats. Largest person stops bar, so it might be loose for a smaller person riding along.
  • 7 Dwarfs Mine Train - like Barnstormer, this attraction does not have the usual WDW warning. It just says "Expectant mothers should not ride." This is a short, smooth roller coaster. The mine cars swing freely, which sounds like they would be moving a lot. What actually happens is the swinging allows them to stay more stable on turns, which makes it very smooth. Some guests have reported a bit of a jolt when it starts, stops or comes to emergency stop. Individual lap bars
 
Sorry to hear his seizures started again. It sounds like there may be multiple issues involved (including puberty).

I think a wheelchair makes sense in your situation. If he was to have a seizure, you at least have a safe place for him and a way to get him to First Aid or outside of the attraction to recover.
A wheelchair might also be helpful for issues related to autism - especially since you are going at a busy time, it will give him a little more of a place to retreat.
If you’ve never been there at Christmas and New Years, anticipate it being so busy that you can’t stretch your arm out without hitting someone else. A wheelchair would be easier than trying to keep track of him in those kinds of crowds.
The busiest will be the actual holidays - you might want to check into what activities your resort has also.

There is a post in the disABILITIES FAQs thread on page 2 about epilepsy. I copied the general info and the MK INFO from that post for you.
See also post 3 on page one of the disABILITIES FAQs for more information about epilepsy.
Most people think of strobe lights when they think of seizures, but most people with seizures don't have any problems with strobe lights.
This is something to talk to your doctor with, but in for most people with epilepsy, the lights at WDW won't cause any problems.

Things that are very important to be aware of are sleep deprivation, dehydration and getting off schedule with medication. All of those things can lower the seizure threshold (how easy it is for a seizure to occur). It's very easy to get off schedule or forget medication while on vacation. One things we have found that helps with this is to actually use an individual dose medication container and an alarm (on our phone or iPod) as a reminder for medication times.

There are not actually any attractions at WDW that use lights that are technically strobe lights (i.e, fast, regular flashes of light) and they do not have any warnings for seizures and/or strobe lights on any attractions. Where they do have flashing lights, they are always irregularly flashing, which is a different situation.
Most true strobe lights flash many times per second, but slowing to 5 flashes per second or less means that the majority of even photosensitive epileptics are not going to have a problem. Only about 3-7% of people with epilepsy are photosensitive and have problems with lights; of those, only about 5% would have a problem with a light flashing 5 times per second or less.

If you do encounter flashing lights and are concerned, the Epilepsy Foundation recommends covering one eye and turning/looking away from the direct source of light. The reason for covering only one eye and looking away from the direct light is to prevent both eyes from sending exactly the same information to the brain.
This should work whether someone has a problem with epilepsy or has problems with lights for another reason.

This is a list of attractions I know of with light effects of some type. Many attractions have a single light or 2, so it is difficult to list all. But, I am sure that we have included most of them.
MK
  • Enchanted Tiki Room - periods of darkness with simulated lightning. The lightning is random and short.
  • Pirates - some lightning flashes in the first dark part of the ride. Some random flickering from simulated flames in the last half.
  • Big Thunder Mountain Rail Road - there are no light effects in this attraction, but if you are riding on a sunny day, you will go in and out of dark tunnels repeatedly at high speed.
  • Splash Mountain - on a sunny day, there are several places where you will go from dimly lit indoor areas to outdoor. The ride moves slowly, so the change is slow. There is a single bright flash when your picture is taken during the big drop.
  • Seven Dwarfs Mine Train - no light effects, but on a sunny day, you will be traveling in and out of dark areas into bright sunlight.
  • Haunted Mansion - almost at the end of the preshow, there is a flash of lightning at the top of the ceiling. Boarding area includes flickering wall sconces.
  • Small World - the end scene includes numerous ropes of white lights that blink on and off in a regular pattern. I would describe it as a traveling pattern - as one light goes off, the next light in line goes on. So, the light travels down or across the strand of lights.
  • Buzz Lightyear - just before the last room of the ride, there is a long narrow tunnel room with swirling red lights and flashing white lights. The swirling and flashing are not rhythmic. The last room of the ride includes several very bright random flashes of white light.
  • Stitch's Great Escape - Most of this attraction takes place in the dark, but there are some random light flashes at times (while looking for Stitch)
  • Space Mountain - multiple flashing lights
Thanks so much Sue. Do I need to reserve a wheelchair before our trip since it will be a busy time?
 
I would probably rent from off-site and do it ahead of time.
That way you know you will have one.
 
Thanks so much for all your help. I rented a wheelchair from Walker's Mobility. They delivered it to the Universal hotel we were first staying at and we were able to leave it with luggage services when we left the Swan at the end of our vacation. The wheelchair included a permanently attached bag that was so useful to store sweatshirts. The peace of mind of having the wheelchair really eased my son's and my anxiety. He did have a seizure in a resort shuttle at Universal and needed rescue medication administered. Without a wheelchair, I don't know how I would have gotten him from the shuttle to our hotel room. Thanks again! Colleen
 



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