A son with petite mal seizure and ToT, Star Tours, RnRC?

[letthewookiewin]

Our next trip to WDW is in December 2008. At the end of last year my youngest son was diagnosed with having petite mal seizures. I can't wait to do RnRC and Star Tours. ToT is very iffy b/c I usually get sick on rides like that. My question is does anyone have any experience with those 3 rides and someone that has petite mal seizures? I have an appointment with his doctor b/c it was suggested to me to get my older son tested for them as well. I will ask her the about those rides. However, if she's never been to WDW, I just feel that someone with experience with the actual ride would have better advice on if he should be allowed to ride them.
Thank you in advance for any help you can give me with this matter.

 

[SueM in MN]

There is not anything specific about any of those rides that would be likely to trigger a seizure. Does he have anything specific that you know of that triggers seizures in him?

Rock N Roller Coaster makes a loop so you do go upside down, but it is pretty smooth for a roller coaster. Here's a link to a page about it. Right after the title on the page, there is a link to a video of the preshow and the very beginning of the ride. It does have loud music and search lights at the beginning and end and you go past lit things at high speed. There are not any really good youtube videos because it is dark, but you kind of get the general idea with this one.

Star Tours doesn't have any flashing lights, it just throws you around pretty well. Here's a link to a page about Star Tours and here's a link to a video of the ride from youtube.

The first half of TOT is very tame; you are just riding in an elevator going slowly. Then, your elevator takes a turn and you end up on the thrill part of the ride. Here's a link to a page that explains more and also a youtube video tha shows the whole preshow and ride. The video from inside the ride is intersperced with video showing the outside of the building and the elevator.

If you go to the disABILITIES FAQs thread, there are also some links in post #3 that would be useful, specifically some about epilepsy.

 

[brenalexacamp]

I would be more concerned about having the seizure ON the ride-how will you hold him, he could bump his face or head.

I wouldn't worry about the ride making a seizure happen.

His threshold may also be lower to have one at that time-heat, change of routine, more tired- use your judgement-the rides will always be there.

 

[D L and K's Mom]

My son has Grand Mal seizures and is on seizure meds. He goes on all the rides at WDW and has never had a problem. He did however have a seizure in our hotel room. I am pretty sure heat, being tired and maybe not drinking enough was the reason. It has never happened on a ride or in the parks and he has been there 6 or 7 times.

 

[letthewookiewin]

Well the only time he has had a seizure that we even noticed was at one doctor visit and she was doing a hyperventilation test with a Kleenex. When he was diagnosed with having petite mals, I had taking him in the be tested for Austism. He was diagnosed when he was 5 as being ADHD, and after four years of changing meds, dosage amounts, and generic vs non generic I told them that he would be test for Autism. It was only after getting the EEG results that we found out he was having petite mal seizures. We are now going through the process of having my older son tested for them as well.

 

[SueM in MN]

Well the only time he has had a seizure that we even noticed was at one doctor visit and she was doing a hyperventilation test with a Kleenex. When he was diagnosed with having petite mals, I had taking him in the be tested for Austism. He was diagnosed when he was 5 as being ADHD, and after four years of changing meds, dosage amounts, and generic vs non generic I told them that he would be test for Autism. It was only after getting the EEG results that we found out he was having petite mal seizures. We are now going through the process of having my older son tested for them as well.

If they are so quick and un-noticeable (like many Petit Mal seizures are), you probably won't even know if he has one, whether he's on a ride or not.

One interesting field of autism study that I just read about is a theory that some types of autism are caused by small variations in the brain's electrical system - not unlike seizures. It's very hard to explain because the article used a lot of very technical language, but the research is being done in New York by researchers who worked in Neuropharmacology. If their theory is correct, it would not explain how the autism developed, but they can look at brain waves to look for the specific types of brain wave patterns. And, it would bring more options for treatment for medication - as well as knowing who the medications would be likely to help.
NOTE: This is not to say that there is any connection between having seisures and having autism or ADD/ADHD, although I know many kids who were first diagnosed with ADD/ADHD and later found to have petit mal seizures (the reason it looked like they had ADD).

 

[letthewookiewin]

If they are so quick and un-noticeable (like many Petit Mal seizures are), you probably won't even know if he has one, whether he's on a ride or not.

One interesting field of autism study that I just read about is a theory that some types of autism are caused by small variations in the brain's electrical system - not unlike seizures. It's very hard to explain because the article used a lot of very technical language, but the research is being done in New York by researchers who worked in Neuropharmacology. If their theory is correct, it would not explain how the autism developed, but they can look at brain waves to look for the specific types of brain wave patterns. And, it would bring more options for treatment for medication - as well as knowing who the medications would be likely to help.
NOTE: This is not to say that there is any connection between having seisures and having autism or ADD/ADHD, although I know many kids who were first diagnosed with ADD/ADHD and later found to have petit mal seizures (the reason it looked like they had ADD).

I just didn't know if those rides would make him have seizures that we would actually be able to notice. Also, if he were to have one that we notice, is it better to go back to our resort and let him rest for a while. This will be his first trip since his diagnosis, and I just don't want to push him too much. Even though I have always been against using a stroller for a child of his age, I may end up renting one depending on if he has any noticable seizures.
I would love to read that article if you could PM it to me or link it here. Like I said DS9 was diagnosed as ADHD. At the same time DS10 was diagnosed with ADD. DS9 was also diagnosed as having a higher functioning form of Autism. The way it was explained to me was that you couldn't have both epilepsy and AHDH or ADD. That if all the bahavioral issues weren't resolved with treating the epilepsy then he would also have some type of Autism Spectrum Disorder on the higher funtioning end. (I hope that makes sense on my 2 hours of sleep.) Also, I was told that it is usually a inherited disorder. I have an appt with my doctor anyway to get some more blood pressure meds, so I am going to talk to him about it then.

 

[lovin diz]

I LOVE thrill rides... They do not bother me, the only thing that i cannot handle is bright flashing lights, but since i was a child i know to close my eyes if i ever go on a ride with bright flashing lights. I dont want to sound ugly, so please dont take it wrong, but if he wants to do things, let him do them. My parents never stopped me from doing anything that i wanted, they always were positive saying i could do anything i wanted, and raised me as a normal child, just when i was sick, i needed some extra attention.

 

[letthewookiewin]

He's not really big into thrill rides. He will only ride them if I am riding them. He's just never had anything bigger than petite mal, and I didn't want to have him ride something and then it cause he's first bigger seizure. Knowing him, he would never want to even go into the park again b/c he would associate not only the ride but the park with it. I have a friend that has grand mal seizures and I use him as an example to prove that he can do anything he wants. I made the mistake of calling him "a normal kid" one time, and boy was that a mistake. He informed me very quickly that normal was boring, and that he was very special. Of course I quickily agreed, and then followed it with all of the ways that make him special. When he was first diagnosed I went back and forth with whether or not to tell him. We ended up telling him before we went to the doctor to see the EEG results after she told us that he had it. He thought it was very interesting from a science point of view, and he is very interested in science. Honestly most days, it's not even brought up or thought about. I just didn't want to take him on one of those rides, had him have a bigger seizure than he's normal to, and then read on here about how that ride has caused several people to have a seizure after riding it.

 

[SueM in MN]

Also, if he were to have one that we notice, is it better to go back to our resort and let him rest for a while.

That's a 'play it by ear' type situation. He may want to rest for a while after or your only indication that he had one may be that he seemed to be 'spaced out' or not paying attention for a for seconds and then is totally back to his usual self.
If he does need to rest, keep in mind that he could do that at First Aid in any of the parks. We seldom go back to our resort when DD has a seizure at the parks. It takes a while to get from the park to the resort and by the time we got there, she was usually not in a mood to rest any more.

I would love to read that article if you could PM it to me or link it here. Like I said DS9 was diagnosed as ADHD. At the same time DS10 was diagnosed with ADD. DS9 was also diagnosed as having a higher functioning form of Autism. The way it was explained to me was that you couldn't have both epilepsy and AHDH or ADD. That if all the bahavioral issues weren't resolved with treating the epilepsy then he would also have some type of Autism Spectrum Disorder on the higher funtioning end. (I hope that makes sense on my 2 hours of sleep.) Also, I was told that it is usually a inherited disorder. I have an appt with my doctor anyway to get some more blood pressure meds, so I am going to talk to him about it then.[/COLOR][/FONT]

I remember reading one article, but not where I saw it.
The recent article that I saw was in the April 2008 issue of Exceptional Parent magazine ( This is a link to their past issues page). A lot of libraries or schools have a subscription to Exceptional Parent. I don't have my issue right here to check, but the whole April issue was about Autism. The specific article was about a boy who was diagnosed with autism. His father is a neuropharmacologist (as I recall) and decides that he would use his skills to study autism.
When I was a school nurse, I knew of several kids who were first diagnosed and treated with drugs for ADD because they just didn't seem to be 'paying attention in school'. After the drugs didn't seem to be helping the problem, they were diagnosed and treated for petit mal seizures.
My own DD has ADD and also has epilepsy.

He's not really big into thrill rides. He will only ride them if I am riding them. He's just never had anything bigger than petite mal, and I didn't want to have him ride something and then it cause he's first bigger seizure.

There is a good possibility that he will only have petit mal seizures and never have a bigger one because that might be the type of epilepsy he has.
Don't worry about doing anything that might cause a seizure. If you are holding your breath waiting for something to happen all the time, you won't be able to have a good time. Just do what you can (not letting him get sleep deprived, not getting dehydrated and keeping medications on schedule) and then just relax.
I'm sure you will do just fine and chances are good that he will not have any seizures while he is there. If he does, you'll deal with it and all come thru fine.

 

[chloelovesdisney]

My sister (31yrs old) has had seizures since childhood. She can't go on any of the rides with flashing lights or anything that shakes her around. No ToT, RnRC, or Star Tours for her. She also can't wear the 3D glasses. I thought she would be okay on Dinosaur but that turned out to be a big mistake. Surprising enough she is okay on the Teacups but she has to go in her own teacup and not spin around at all.



She started with only petit mal seizures but progressed to grand mal seizures in her early twenties.

 

[letthewookiewin]

My sister (31yrs old) has had seizures since childhood. She can't go on any of the rides with flashing lights or anything that shakes her around. No ToT, RnRC, or Star Tours for her. She also can't wear the 3D glasses. I thought she would be okay on Dinosaur but that turned out to be a big mistake. Surprising enough she is okay on the Teacups but she has to go in her own teacup and not spin around at all.



She started with only petit mal seizures but progressed to grand mal seizures in her early twenties.

He has trouble with the 3D things as well. When we went to the 3D shows on our last trip we didn't know he was had Epilepsy. He was scared of all of the 3D shows. I couldn't figure out what made him so scared, but I bet they were causing petite mal seizures. He does fine as well on Teacup like rides. I'm a different story, but this time I am going to take Ginger pills. I'm hoping it will help so that I can ride it with the DS's like they would like me to.

 

[SueM in MN]

He has trouble with the 3D things as well. When we went to the 3D shows on our last trip we didn't know he was had Epilepsy. He was scared of all of the 3D shows. I couldn't figure out what made him so scared, but I bet they were causing petite mal seizures. He does fine as well on Teacup like rides. I'm a different story, but this time I am going to take Ginger pills. I'm hoping it will help so that I can ride it with the DS's like they would like me to.

Here's a good page about types of seizures. Someone with Absence Seizures (older name, Petit Mal) is not likely to remember anything about the seizure or to experience fear, etc during the seizure. They are just "absent" for 2-15 seconds.

If he's 9 now, he might be able to tell you more about what caused him to be scared in the 3D movie. If the ones he was scared of were Bug's Life or Honey, I Shrunk the Audience, it may have to do with the subject and things that happen to you (spraying, popping, snakes and mice) rather than anything to do with seizures. If he knows exactly and can tell you it was the xxxxxx he was afraid of, then it's probably just fear. If he doesn't have any idea and says there was just something he can't identify about it, it could have been a simple partial seizure (although you would probably have noticed something happening during a partial seizure because they do involve movement).

People with photosensitivity epilepsy are the most likely people to have seizures from things like lights or movies. This is a good article about Photosensitivity from the Epilepsy Foundation. After his EEG, you should know whether or not he has a photosensitive type of epilepsy.

For general epilepsy information, here are some other good websites:
www.epilepsy.com, which has a good page about
absence seizures (the other information is good too, but thought you would be most interested in that).

National Institutes of Health page about epilepsy has a lot of links to other organizations and information about research.

 

[letthewookiewin]

The last time we were there he was 7, and he was 5 when we went the first time. The first one he saw at age 5 was the Muppet one. After I asked him what scared him and he could tell me was "the stuff coming out of the screen." That is the only thing that he has told me that scares him. For months after going to WDW when we went to a movie, he would ask if stuff would come out of the screen. They all scare him, Bug's Lif, the Muppets, Honey, and Philharmagic.

Thank you for the links SueM in MN, I will read them all.

 

[SueM in MN]

The last time we were there he was 7, and he was 5 when we went the first time. The first one he saw at age 5 was the Muppet one. After I asked him what scared him and he could tell me was "the stuff coming out of the screen." That is the only thing that he has told me that scares him. For months after going to WDW when we went to a movie, he would ask if stuff would come out of the screen. They all scare him, Bug's Lif, the Muppets, Honey, and Philharmagic.

Thank you for the links SueM in MN, I will read them all.

That doesn't sound like seizures of any kind since he can tell you just what about it scared him. There are a lot of little kids that are scared of the stuff coming out of the screen. They are not quite sure that it won't 'get' to them and many don't like the sensation of things coming close. My older DD (who doesn't have epilepsy or any other health conditions) still doesn't really like the 3D movies for the 'closeness' reason and she's an adult now. LOL
If you watch the audience, you can see adults shrinking away from the things that come out at them.

 

[Mike Bartenhagen]

I dont want to sound ugly, so please dont take it wrong, but if he wants to do things, let him do them.

I really think this is a great answer. As the father of a six year old that has had tens of thousands of seizures (infantilespasms.com) we never try to avoid anything that might cause seizures. In other words we haven't spent our lives avoiding flashing lights because they can trigger seizures in some kids becuase we had taken the chance of exposing Broc to flashing lights and it did not cause seizures for him. If there is something we know will trigger Broc's seizures we will avoid it but to not do something becuase it might cause seizures maybe a bad habit to get into in my opinion.

Mike

 

[mom2taylorandemily]

I LOVE thrill rides... They do not bother me, the only thing that i cannot handle is bright flashing lights, but since i was a child i know to close my eyes if i ever go on a ride with bright flashing lights. I dont want to sound ugly, so please dont take it wrong, but if he wants to do things, let him do them. My parents never stopped me from doing anything that i wanted, they always were positive saying i could do anything i wanted, and raised me as a normal child, just when i was sick, i needed some extra attention.

This is such good advice. You know last year my DD had a convulsive seizure on a bus riding to AK. Not on a ride or at a 3D movie, on a bus. It was brought on by sleep deprivation and nothing else. Yes, she has epilepsy, but she had been seizure free for 3 years and was off meds and visiting WDW for the 2nd time without meds. So, when it happened, we had to look at why? The only variable we could come up with was sleep, so since we have been home, we have been back to Neurologist and she had a convulsive seizure again today, in JC Penny, but she is now on a new med and we will see how that works. The old med was really causing our household trouble. We are trying to work thru this, but I agree, never hold your child back from trying things. Seizures are a part of life for us, we just pick up the pieces and keep right on going. They can be scary but you have to learn to work with them if they can't be controlled by meds.