Disney with Seizures

[sonofanarchy]

Hi all. Hoping to get some advice on this from those who have experienced it. Last week, my son (6), after a couple of very scary seizures, was diagnosed with epilepsy. Since he's been on his new meds, he's been OK. However, my wife and I are obviously still nervous wrecks. Anyways, it has us rethinking next summer's trip. The seizures he has aren't brought on by lights or anything, so that's not an issue. However, our biggest worry is what happens if we're on Splash Mountain, he has a seizure, and the ride breaks down and we're stuck on it? We'll have his emergency meds on us at all times, but still, this thought is very scary to us. This could happen on any number of rides. He's only 6, but he's a daredevil. He loves Space Mountain. I'll be a nervous wreck sitting behind him on the ride for 2.5 minutes.

 

[disney david]

Hi all. Hoping to get some advice on this from those who have experienced it. Last week, my son (6), after a couple of very scary seizures, was diagnosed with epilepsy. Since he's been on his new meds, he's been OK. However, my wife and I are obviously still nervous wrecks. Anyways, it has us rethinking next summer's trip. The seizures he has aren't brought on by lights or anything, so that's not an issue. However, our biggest worry is what happens if we're on Splash Mountain, he has a seizure, and the ride breaks down and we're stuck on it? We'll have his emergency meds on us at all times, but still, this thought is very scary to us. This could happen on any number of rides. He's only 6, but he's a daredevil. He loves Space Mountain. I'll be a nervous wreck sitting behind him on the ride for 2.5 minutes.

Disney will get you medical attention as quickly as they can if that happens. Keep a cell phone on you just in case it happens and their no cm around you and your also on camera so They can see if you my need help. you can call 911 they will start medical help to and notify Disney security and they will be their as soon as they can.

 

[3mmm]

My son had refractory epilepsy (resistent to meds). first thing is make sure his seizures aren't induced by lights by doing the strobe test which should be done during all EEGs. I'm thinking you have had that since you said it is not brought on by lights.

The only time we ever had an incident was at epcot on the Mission Space ride when he did the one with the spinning. May have been coincidence, but we have avoided it since and ride the other side.

I would talk to your neurologist. And if your trip isn't until next summer that gives you over six months. Remember that most states let you drive if you are six months seizure free and they do so because the risk of a seizure after six months is very low.

If he continues to have seizures after 3 months, you need to be seen by a neurologist if you are not already and at a year, he needs to be referred to an epileptologist, someone who specializes in just epilepsy, and a pediatric one is even better. They are usually only at major medical centers. I know this is a little off topic from what you asked, but it took us 8 years to get my son's seizures under control and it was an epileptologist who finally made it happen

What we found to be the biggest trigger was fatigue so that was always an issue on any vacation, but especially Disney. But the only time we questioned a ride contributing was Mission Space and he has ridden everything at Disney and Universal from the moment he hit the height requirement.

 

[sonofanarchy]

Thanks for the answers. Yeah, he had the strobe test during the EEG and all is well there. We're lucky in that we've got the best pediatric hospital in the country (Boston Children's) less than an hour away from us. They are ranked #1 in neurology among other things. He has his first follow up on Wednesday.

 

[disney david]

Thanks for the answers. Yeah, he had the strobe test during the EEG and all is well there. We're lucky in that we've got the best pediatric hospital in the country (Boston Children's) less than an hour away from us. They are ranked #1 in neurology among other things. He has his first follow up on Wednesday.

Go Red Sox even though I am a angels fan and good luck hope all works out for him. Plus it give you enough time to plan things out.

 

[buffettgirl]

I'm going to weigh in with my 2 cents, coming from a parent who's child doesn't have epilepsy, but does have diabetes and does have low blood sugars (daily...) and could potentially have a seizure, if his blood sugar got low enough.
Initially after diagnosis, like you, that was my greatest fear. What if something happened while we were on a ride, and the ride stopped and we were stuck. What if? I had all these scenarios in my head that literally kept me up at night. I'm sure that's what is going on for you right now.

I can only say, as any newly diagnosed parent of a child with any medical condition, things will look differently a few months down the road. The first weeks after diagnosis, any diagnosis, are filled with questions, uncertainty, and worry. In time, you will learn things about your child's condition that you don't know right now. Things that will either put your mind at ease, or teach you how to avoid a problem. Don't worry about next summer. Focus on now. His next appointment. Learning what you need to learn. You'll have plenty of time in a few months to reassess the situation.

Just don't worry about the what if's right now. You've got enough to actually worry about that's real, that's in front of you, today. 3mmm has given you wonderful, practical advice, specific to your situation and you're already being seen by a wonderful facility (though, I love our neuro at UMass..just in case the drive gets old for you.... ) I just want to offer that you're not alone in your worries. We all have them. And I promise you, in a few months, your son's situation will feel tremendously different to you.

 

[Gracie09]

Just to add, my child doesn't have seizures yet, but she is likely to develop them and no one knows when. So basically we are just waiting for them to happen and there is nothing we can do to prevent it. At first I was worried every time we did anything or she was away from me (school, my parents etc). Eventually I relaxed a bit and realized I had to let her do her thing. I still worry when to stares into space a bit too long and if we are near strobe lights keep an extra sharp eye on her but I'm almost zen about it now. I'm not saying don't learn all you can and do whatever you can to avoid situations where they may happen but worrying about a medical emergency while trapped on a ride at Disney world maybe should be at the top of your list, you know. Good luck!

 

[Gracie09]

Just to add, my child doesn't have seizures yet, but she is likely to develop them and no one knows when. So basically we are just waiting for them to happen and there is nothing we can do to prevent it. At first I was worried every time we did anything or she was away from me (school, my parents etc). Eventually I relaxed a bit and realized I had to let her do her thing. I still worry when to stares into space a bit too long and if we are near strobe lights keep an extra sharp eye on her but I'm almost zen about it now. I'm not saying don't learn all you can and do whatever you can to avoid situations where they may happen but worrying about a medical emergency while trapped on a ride at Disney world maybe should be at the top of your list, you know. Good luck!

that should be shouldn't be at the top of your list.

 

[alizesmom]

Seizures suck and are scary but you do get used to them. Be prepared for one but don't let the fear stop your son from being himself.

 

[I Love Pluto]

Hi - I hope your son is feeling better. Seizures usually come in clusters, then become farther apart as the meds start working.

I have had epilepsy all my life. I am 67. I know you probably don't want to hear this - but - I don't do any coasters at all at Disney. I choose wisely what I can do & what I can't. Soarin' is out of the question for me, but I can ride the teacups. I can do everything at Disney EXCEPT the thrill rides. Your son's case may be very different because he has already successfully been on some thrill rides. Why change that? Fear of a breakdown on a coaster is like fear of a plane crash. It might happen, but it probably won't - so we trust that nothing bad will happen.

Your doctor is a great source of guidance. Ask him/her what he/she would do if his/her son had the type of epilepsy that your child has. Do what feels comfortable for both you and your child. No one knows your son better than you do.

Good luck to you. Your son will go far in life. Nothing should hold him back. I went to college, got a Masters Degree, taught, retired. We have been married for 41 years, & have 2 children. Epilepsy has not controlled my life. We have been able to live just like everyone else in spite of seizures. Your son will also have a great life. You will figure it out - one day at a time.

 

[SueM in MN]

My youngest DD has seizures and has for many years.

As other posters mentioned, in the beginning, fear is kind of a constant companion. By the time you go on your trip, you will have six months under your belt and will be more calm, but in the beginning, it is scary.
I am an RN and was in a job where I had seen hundreds of seizures before my daughter had her first one. If it helps any to know, despite all I had seen, it was a whole different thing when it was MY OWN child. As an RN, I was calm, but as a mom, I was freaked out.

My DD's seizures are still not very well controlled. She has between 3 and 6 per month and has had them at WDW. She can't walk, so is in a wheelchair, but if she had one on a ride where we transferred her, it would not be easy to get her off. That's at the back of our minds, but definitely at the back. Even though she has frequent seizures, the chance of having a seizure on an attraction is pretty unlikely.
The chance of having a seizure while on an attraction and getting trapped on the attraction by a breakdown is even much smaller.
My DD has been on everything at WDW except the 'mountains' and Rock 'N Roller Coaster. She would be OK to go on them from a neurological standpoint (her neurologist said she does not have yo avoid anything), but she has cerebral palsy and from a physical standpoint, we can't get her on those and make sure she stays safely in place.

As was mentioned, if a medical problem occurs, there is First Aid in every park and EMS can get to guests VERY quickly.

So, what can you do to lower the chance of having a seizure while at WDW?
This was advice from our DD's neurologist and also from the American Epilepsy Society.

- take medication according to schedule. We usually set a reminder on our cell phones. It's very easy to get caught up in everything and realize all of a sudden that it is much later then you think and a dose is late.

- have a medication holder of some type where you can see that a dose has been given or not (you don't want to give a dose twice by mistake)

- keep hydrated with water. Dehydration can lower the seizure threshold (the amount of stimulation needed to start a seizure). Avoid sugary drinks because they can actually dehydrate you further.

- try to get a similar amount of sleep to what he normally gets. Lack of sleep can lower the seizure threshold (which is why they often do sleep deprivation EEGs to test for epilepsy).

By the time you go, you will be more relaxed about it and your vacation should go well.

 

[lovethattink]

I hope your son is doing better.

You've got some great advice above.

My son has certain things that trigger his seizures. His triggers have also changed over the years. Heat, dehydration, fatigue, certain foods, spinning or bouncing, have all been triggers for him. Thankfully he gets an aura before a seizure so we have a warning. We carry frozen water bottles and hand held air conditioners when we're outside. We make sure he keeps to his special diet when he's not at home. And try to keep wake up and bed time consistent.

He can't handle any of the coasters, TSM, Star Tours, Tea Cups, Soarin' or Splash MT. Thankfully he hasn't had any seizures while on the attractions, but he has had partials after riding TSM, Star Tours, Tea Cups, Soarin' and the Barnstormer. We haven't let him back on since.

 

[OneMoreTry]

We probably have as much experience with seizures as anyone. Our 14 yo daughter has had thousands of ever type imaginable. She averages about one a day. They usually last about a minute or two, but she can be postictal for an hour or more -- sometimes not at all. She stops breathing. We are used to them but people around us freak out. Her face is scarred from stitches due to injuries.

Sometimes she will have multiple seizures in a row that can last for an hour or more. At WDW she usually gets them during a show, so we keep her in her wheelchair when we are watching one which makes it much easier if she does have one. She has never had one on a ride. My biggest fear on Splash Mountain is that she will have one during the big drop and she won't be able to support her head. She usually does not have them when she is excited so I think the chance is low, but during the drop I always watch her ready to hold her head if needed. The rides don't have sharp edges so I don't worry to much about those minor injuries. If there is a sharp edge I put my hand over it to protect her just in case. ( The queues are bad for sharp edges which is one of the several reasons we don't like queues.)

I can't tell you that you will get over the fear -- I am still afraid when I see her in a situation where falling could really harm her -- like standing on a chair. She is also a daredevil and has no fear because she is developmentally delayed and completely unaware of her situation and the danger.

We still go to WDW and don't let it stop us. It is reassuring that her seizures have always been self limited. She always starts breathing again after a minute or two.

The medication we use if the seizures are prolonged is Versed nasal spray. it is compounded by a pharmacist. it works great to stop the recurrent seizures, but makes her sleepy. She hates it because it burns, but we usually try to give it when she is unconscious which helps. We don't carry it with us during the day because the really prolonged seizures usually only happen after bedtime. We have another friend who used the spray and it worked well for them.

My only advice is to keep living your lives -- and get some Versed nasal spray. I completely understand your feelings, but I know you can still enjoy WDW

 

[deb010305]

Thanks for the answers. Yeah, he had the strobe test during the EEG and all is well there. We're lucky in that we've got the best pediatric hospital in the country (Boston Children's) less than an hour away from us. They are ranked #1 in neurology among other things. He has his first follow up on Wednesday.

Our DS, now almost 16, goes to Boston Children's Hospital for his epilepsy. They are incredible.
And when he was first diagnosed at age 8 we were very concerned about traveling and what ifs. Luckily nothing to bad has happened, although in 2011 he did have an issue at HS, not sure if it was really a seizure, but we were impressed with how quickly the paramedics were there! And how many WDW management type people appeared almost out of nowhere!

 

[WheeledTraveler]

I think the others have given some good advice. I've been with a friend who has seizures and does have some response to strobe-type effects (they've never shown up on EEG, but he's had some reactions that haven't noticably involved seizures, but have involved an almost postictal response) and the only restrictions he has at WDW due to his epilepsy are relating specifically to the light response. As far as I know, nothing at WDW uses the strobe frequency that is most likely to trigger seizures, but there are a few things that have repeated flashing lights (either at a set frequency or at seemingly random moments). I've only known him as an adult, but I think he started having his seizures as an infant (he also has cerebral palsy so that's likely to be the cause for him) so had seizures as a concern when he went to WDW as a kid. WDW was one of his places where he could be most "normal" as a kid and he loves it for that reason. He's mobile enough that he can transfer into most, if not all, rides and loves many of the thrill rides that he can ride (he avoids Space Mountain & Rock'n'Roller Coaster due to the light concerns). I know he's gone probably 10 trips over the course of his life and he's never had a seizure there.

You've been given really good advice for how to best reduce the chances of seizures in terms of medication, sleep, food, water, etc. It won't seem quite as scary, I think, once you're slightly more used to dealing with your son's seizures. Also, even if something were to happen not only does WDW have good medical response folks, but with the number of people with epilepsy who go to the parks I'm sure they've had experiences with seizures specifically. It doesn't hurt to bring any recommendations his neurologist has for where to go should something happen. There is a very well regarded children's hospital in Orlando so I don't know if there's anyone there the Boston Children's neurologist specifically recommends (or somewhere else close). Chances are you wouldn't need the info, but I'm big on having all that sort of info as insurance against things going wrong

 

[lovethattink]

It doesn't hurt to bring any recommendations his neurologist has for where to go should something happen. There is a very well regarded children's hospital in Orlando so I don't know if there's anyone there the Boston Children's neurologist specifically recommends (or somewhere else close). Chances are you wouldn't need the info, but I'm big on having all that sort of info as insurance against things going wrong

I'm not the neurologist obviously, but here is a link to the level 3 and 4 Epilepsy Clinics in the area. http://www.naeclocator.org/locator/resultsbyzip.asp

The closest pediatric epileptologists are Dr. Davis' office (affiliated with Arnold Palmer Hospital downtown) located near Sea World http://www.orlandohealth.com/arnold...alSpecialties/centerforepilepsy.aspx?pid=6969 and Dr. Lee's office at the Florida Hospital http://www.floridahospitalforchildr...ams/pediatric-neuroscience/pediatric-epilepsy

 

[sonofanarchy]

Once again, thank you all for the great ideas, thoughts and general comments. So appreciated and it's made me feel a whole lot better. My little guy is headed back to school tomorrow for the first time in 2 weeks since this all began. He's definitely back to himself, has been perfect since being on the Keppra, but I'm definitely apprehensive about him being without either me and my wife for the first time.

 

[deb010305]

Once again, thank you all for the great ideas, thoughts and general comments. So appreciated and it's made me feel a whole lot better. My little guy is headed back to school tomorrow for the first time in 2 weeks since this all began. He's definitely back to himself, has been perfect since being on the Keppra, but I'm definitely apprehensive about him being without either me and my wife for the first time.

totally not Disney related, but you do have a medical/health plan for your son at school. when DS was younger ours was very detailed, with info on how his seizures presented and who was to do what if one occurred. our school nurse was very helpful, even getting his bus stop moved closer to our home !

 

[SueM in MN]

There is a post about bright or flashing lights for WDW on page 2 of the disABILITIES FAQs thread.
I've copied it here, but you can find that thread near the top of this board.

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.
• 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 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

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.
• Ellen's Energy adventure - includes a movie where parts are dark and then light suddenly appears (the 'Big Bang' theory of earth's creation). Also includes a section with ‘confetti’ lights in different colors ‘falling’ from a point in the ceiling to the floor across guests.
• 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 ill 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' - One of the last scenes includes soaring over a city at night, over a highway. The headlights of cars are either white (headlights) or red (taillights) and are moving quickly. 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.
• El Rio del Tiempo (Mexico) - fiber optic fireworks in the ceiling and wall in the last scene
• Maelstrom (Norway) - near the beginning there is a spinning, pulsating light. It is irregularly pulsating
• 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
• 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.

AK

• Festival of the Lion King - one act includes twirling flaming sticks
• 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

My mother has migraines and finds that reflections off water (especially the World Showcase Lagoon) bother her on a very bright day. She also has problems sometimes with the 360 movies in China and Canada because they are all around.

 

[Michigan]

One thing that isn't listed in Sue's post is American Idol Experience. There is a lot of strobing during the performance. My daughter pulls a hat over her eyes when they perform their song and then takes it off during the judging.