Autism and first time seizure at Disney

More information needed, in the meantime please read the pinned WDW FAQ. Just the first page. There should be a post about seizures or epilepsy.

I have been to all six U.S. Disney parks, all three Universal parks, Sea World Orlando, two Six Flags, and Canobie Lake Park with epilepsy. I did not ever have a seizure during, after, or related to park visits.
 
If you are sensitive to strobes and flash, be aware of the nighttime shows and parades. Some posters on the DLR board have mentioned that the PTN parade, for example, was so bright that it was triggering seizures in their kids. And wouldn't you know that the kids loved that parade! So the parents had to get creative about finding viewing spots that were far enough away to not be in harms way, but that still allowed the kids to "see" enough of the parade's lights and floats to satisfy their kids' parade cravings. (It was decided that the Mac float was usually the cause of the trouble for many of these kids.) With flash on dark rides, if you notice any guests near you who seem to be camera happy, you can ask a CM before boarding to seat you far away from any potential flash risk AND to make an announcement about "no flash photography." CMs are glad to help if you ask with enough advance notice and are willing to wait a bit if necessary.
 
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This is regarding WDW and is copied from post 24 on page 2 of the disABILITIES FAQs thread.

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) - closed and/or seasonal
  • Space Mountain - multiple flashing lights

Epcot
  • Spaceship Earth - the first part of the ride and the last part of the ride are dark, long and narrow.
    The entrance 'tunnel' has screens high on the wall, warning that your 'time capsule' will turn and descend at some point during the ride. The screens are bright compared to the walls.
    The exit tunnel has some lighting effects, but not flashes.
  • Mission Space - Includes a flash of light for a picture and flashing instrument lights to alert ‘astronauts’ to push particular buttons. There are also small amber colored flashing alarm beacons at the end of the ‘runway’ when you are landing on Mars.
  • Test Track - the walls and ceiling in most of this attraction are black, with colored strips of light. On pictures they look like neon lights, but are probably fiberoptic lights. The lights do not move or flicker. There is one section where your car looks like it will run into a truck, which has suddenly turned its lights on. Soon after that, the car travels outside, so if the day is bright, you will go into bright sunlight.
  • Living with the Land - simulated thunderstorm in the first few scenes. The first part of the attraction is dim; the second part is in a greenhouse, where the light can be a bit of a shock when you first enter. At one point, the boat enters a 'fish farm' part of the greenhouse, which has dim red lighting. After traveling thru that part, you will agin be in a greenhouse. The ride boat moves slowly though, so it is not difficult to adjust to the different lighting..
  • Soarin' - There are sudden scene changes where something happens to fill the screen in the scene you are on and change to the next scene. Most are between similar light situations. One of the last scenes includes soaring over the Eiffel Tower. There is a bright searchlight which swings towards you at the start of the last scene change. The end scene includes fireworks
  • Journey into Your Imagination - Some flashes of light. One bright flash near the end where a picture used to be taken.
  • Gran Fiesta Tour (Mexico) - fiber optic fireworks in the ceiling and wall in the last scene
  • American Adventure - the Chief Joseph sequence has a few stokes of lightning. The World War 2 sequence on a ship includes arcs of welding light.
Studio
  • Star Tours - flashes of light during the attraction (you are in a space ship and end up in a spaceship fight)
  • Voyage of the Little Mermaid - some flashing light, some twinkling lights and some pulsating blue/green laser lights above your head to simulate the top of the water. All are random
  • Rock N Roller Coaster - one bright flash of light during picture taking and random flashes of light as you 'drive' down the highway
  • Tower of Terror - one bright flash of light during picture taking. Elevator door opens suddenly to give a view of outdoors (so bright light on a sunny day). Some twinkling lights during the early part of the ride and I was too busy being scared and holding DD down to notice any more.
  • Frozen Sing Along - Includes some flashing lights/lights to simulate snow that moved/beamed across the stage and sometimes the audience.
  • Fantasmic - includes some bright flashes of white lights that beam across the audience, fireworks, 'eye lights' from dragon and snake. Many people are using light up toys which may be set on rapid flashing. Glow with the show ears change color in synch with the show. Most of the color changes are slow transitions.The ear part is translucent white plastic.
AK
  • Festival of the Lion King - one act includes twirling flaming sticks and there are some bright lights that beam across the theater. Most come from high and/or the ceiling, especially during the aerial act sequence. There are other random lights beaming as spotlights get into position to light different singers
  • Dinosaur - dark ride with sudden appearance of dinosaurs in front of you. Random flashes of light. One big flash as a picture is taken.
  • Expedition Everest - includes some bright light effects
  • Flight of Passage in Pandora - has bright flashes of light as your banshee takes off to fly and again to end the ride.
My mother had migraines and found that reflections off water (especially the World Showcase Lagoon) bothered her on a very bright day. She also had problems sometimes with the 360 movies in China and Canada because they are all around and because of flicker. Even though movie might not seem to flicker, they are actually made up of many individual pictures per minute going thru the projector. The flickering in them is noticeable by some people, especially if the film is damaged or dirty.
 
Thank you for the replies. I have read all the Disney information including past threads about seizures. I probably should have labeled my post a little better. My 20 year old autistic son had a pretty severe seizure while at Disney a couple months ago, his first one, but his sixth trip to Disney. We are going back next month and of course I am so worried. Just wanted to hear some other experiences. This is all new to us. Thank you :)
 
My youngest daughter has seizures that are not well controlled.
She always has at least one (usually more) seizures during our WDW trips. When she’s had a seizure in one of the parks, we usually just tip her wheelchair back against a bench so she is semi-reclined. Generally, someone will stop to see if we need anything (usually a CM, but we have also had other guests stop).
If we are close to First Aid, we go there and ask for a room for her to lie down for a while. They are very accommodating.

The things her neurologist said to watch for are:
- dehydration (pop and sugary drinks can dehydrate you more)
- getting overtired from not enough sleep and/or late nights and early mornings
- getting off schedule with medications
 
I believe the first two were factors although this trip wasn’t any different than previous ones for him. Our neurologist said no restrictions other than seizure safety but I do worry about some of the rides. Although kaytieeldr gives me hope with the earlier post.
 


Yeah, I'm not a neurologist (but I did stay at a Holiday Inn Express once ;)) but I agree. One, even severe, seizure was most likely due to the first two reasons. Is he taking medication now?
 
He was on something for about a month then had a reaction to it so he stopped it. Neuro was hesitant to try something else since he has only had one seizure. I’m hoping that it was one and done but we shall see.
 
It sounds like our children are quite similar. My autistic son had his first seizure at the age of 19. His second was a year later at Epcot. We had just finished dinner at Coral Reef and were walking out the International Gatway exit on our way to the Swan. DS had a tonic clonic seizure just past the security bag check area. Security, CMs, and Disney EMTs were wonderful. Ended up choosing to be taken to Celebration hospital as we were new to seizures, far away from glen, and unsure. MD thought dehydration may have contributed. MD said ok to continue our trip cautiously. Went home, saw a neurologist but decided to not start meds as only 2 seizures a year apart and he already takes several medications for other reasons. DS ended up having a couple more seizures at home a few months later so started meds. Only one seizure in 2 years since.

We are preparing for another trip in May. I feel that we are more mentally prepared and have more experience with knowing when emergency treatment is needed (Celebration gave us a really nice Care Gram). Would probably choose just to go to first aid until post ichtal period subsides if it happens again unless multiple seizures or duration longer than 5 minutes or other extenuating circumstances.

DS likes to be active. He would not be happy staying at home all day everyday. So we just keep moving forward.
 
Thanks so much for your post. Our son was also in Epcot on our first day. Luckily there was someone close by who knew what was happening to him. He spent three days in the hospital and then we went home after. Needless to say he was devastated. There is nothing that brings him more joy than when he is at Disney. He is almost like a different person when he is there. At least we will know what to do if it happens again. We are definitely doing things differently this time. No early mornings and he will be drinking constantly. We extended the length of our trip so we can relax a little bit more and still feel like we can do all the things we want. It just helps to hear from someone else who has gone thru it. We have been dealing with the autism for so long and everything that goes with it but the seizure is definitely new territory.
 
We are preparing for another trip in May. I feel that we are more mentally prepared and have more experience with knowing when emergency treatment is needed (Celebration gave us a really nice Care Gram). Would probably choose just to go to first aid until post ichtal period subsides if it happens again unless multiple seizures or duration longer than 5 minutes or other extenuating circumstances.
Talk to his neurologist. I was at work both times, and taken to hospitals both times. Mine advised me there was no need to get taken/sent to the hospital. Just carry and take a therapeutic dose of meds.

I am NOT saying to do this! Just get his doctor's advice.
 
Yes our doctor did say if it happens again no hospital visit is necessary as long as there are no extenuating circumstances. Being it was his first we needed him to be checked out so that they could run all the necessary tests.
 
We are preparing for another trip in May. I feel that we are more mentally prepared and have more experience with knowing when emergency treatment is needed (Celebration gave us a really nice Care Gram). Would probably choose just to go to first aid until post ichtal period subsides if it happens again unless multiple seizures or duration longer than 5 minutes or other extenuating circumstances.

Not sure what a Care Gram is, but I ended up in the ER at Celebration last trip, and they were fantastic. They actually figured out the issue I had, which had stumped the doctors back home and the urgent care clinic I had gone to the night before. Got on the right med, and the issue cleared up a few days later. It had been a slowly degrading situation that just blossomed during our trip. Only issue I had with the ER was that no one told me I could go to the bathroom myself, which I needed after being hooked up to saline for a few hours :) So I waited and waited for someone to come check in on me, finally pushed the nurse button, and was told I could go down the hall by myself. I thought that was odd, being that I had arrived by ambulance and had no family member with me.
 
My son has epilepsy, but has been almost seizure free since his brain surgery. We had several trips before the surgery and a couple after the surgery. The worst was before, and from the "outside" looked like a tantrum. As a result CM were, well, not just unhelpful but completely worthless. When I asked them to call EMS they told me no and to go to first aid (on the other side of the park). I basically had to break the "rules" get him into air conditioning and cooled off in order to get things under control. It was horrible--I didn't even know how to call 911 from within the part to get help. His neurologist fussed at me later for not being firmer and demanding 911.

Fortunately, even before surgery most of his events "aren't that bad" and we didn't have to administer the Diastat. Post surgery, Disney is where 2 of 6 events occurred. For him, the factors are lack of sleep and the heat.
 
My son has epilepsy, but has been almost seizure free since his brain surgery. We had several trips before the surgery and a couple after the surgery. The worst was before, and from the "outside" looked like a tantrum. As a result CM were, well, not just unhelpful but completely worthless. When I asked them to call EMS they told me no and to go to first aid (on the other side of the park). I basically had to break the "rules" get him into air conditioning and cooled off in order to get things under control. It was horrible--I didn't even know how to call 911 from within the part to get help. His neurologist fussed at me later for not being firmer and demanding 911.

Fortunately, even before surgery most of his events "aren't that bad" and we didn't have to administer the Diastat. Post surgery, Disney is where 2 of 6 events occurred. For him, the factors are lack of sleep and the heat.

It is a shame that the initial CM wasn't helpful. I'm really surprised that they would take that sort of stance on a medical issue. I would have asked another one or called 9-1-1 myself. Just tell them where you are. My guess is the Reedy Creek dispatch center would have sent the appropriate outside EMS units and also alerted the in-park personnel to look for you.
 
I stay away from strobes and "flashing" lights at night (those annoying toys they sell in the hub before HEA are a big one). I don't overexert myself and know when to rest. Keep hydrated and stay on time with my meds and sleep.
 
We are leaving for Disney next week and I am getting stressed. I want to be able to relax and enjoy the trip but I’m afraid I will be worrying constantly, waiting for something to happen. Any advice from others with epileptic children?
 
I will be there starting May 6th with my very similar son. I will keep your son in my thoughts. Positive energy headed your way.

A Care Gram is a information sheets given to patients about their condition. The one we received had similar information as per the CDC websitehttps://www.cdc.gov/epilepsy/about/first-aid.htm :

Seizures do not usually require emergency medical attention. Only call 911 if one or more of these are true:

  • The person has never had a seizure before.
  • The person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has another seizure soon after the first one.
  • The person is hurt during the seizure.
  • The seizure happens in water.
  • The person has a health condition like diabetes, heart disease, or is pregnant.
All you can do is be prepared with education. Try to keep his medications and sleep on schedule. Keep him hydrated. And above all have fun!
 
I want to stress the caution to listen to his epileptologist and follow HIS seizure plan. For instance, my son has to have emergency meds at 3 minutes and 911 needs to be called. (Once his events are over 3 minutes they are very difficult to control, and he has a history of reactions to the meds.)
 

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