Anyone have children with epilepsy

[Pocohantasfan]

Our DD (7 y/o) has a "mild" form of epilepsy. Her seizures are of the mildest kind and more like staring. It's called petit mal or absence seizures, which is a better way of putting it. She just goes absent minded for a few seconds. She has not had a seizure since September of 2003! We fully expect the dr. to start decreasing her meds in September when we go back for her annual check up. We go to Disney in October. I worry that decreasing her meds and then the excitement and/or stress of it all may make her have a seizure. The last time we went to Disney, she'd only been on the meds almost a year and it had been several months since her last seizure and the dr. said "go to the Disney and have a great time".

 

[MUFFYCAT]

I'm 46 and I've had epilepsy since i was 16. I had grand mal seizures, although my last one was 1985. Bu I have stay on med forever because
it's more severe.

That's great that she's doing so well. If any, her form of epilepsy sounds
mild enough it shouldn't effect her everyday life at all

have a great trip!

 

[Pocohantasfan]

We've been told that it is highly possible that she'll grow out of it. But there's also the possibly that they'll get worse. Yes, we are very blessed that she only had the seizures from about July until Sept. 13th of 2003. That is a real blessing that you haven't had any seizures in over 20 years. DD didn't have any problems in 2004 when we were there, but they should be decreasing meds during that time, so it's got me a little worried.

 

[DisneyMama63]

Both of my daughters(5 and 7) have severe epilepsy due to muptiple disabilites. They have anywhere from 3-5 seizures daily and are heavily medicated.

 

[Pocohantasfan]

Are they able to ride most any of the rides? My DD does not have epilepsy as severe as your DDs, but I worry a little because a seizure can mean extended treatment.

 

[Cepbush106]

I have epilepsy. I've actually had it since I was 7-8 but it was never diagnosed. I also have petit mal seizures only mine consist of blinking really rapidly for maybe 4 seconds and then its over. Sometimes I don't even realize I have them. I had my first grand mal at 21 after having my son (my body was just stressed) so it wasn't diagnosed until them.

Before that time I went to Disney twice and never had a problem! The meds should stop any seizures from happening but you know the bright flashing lights on some of the rides may trigger one. I would talk to your nuerologist about maybe not decreasing meds until after the trip...

-Erin

 

[KristiKelly]

I have a friend with epilepsy. She used to have a lot of seizures but was not good about taking her meds and would drink some. She's better now. I do know that bright flashing lights would trigger a seizure for her. I would talk to her dr. and see if any rides could possibly trigger and avoid those rides. Also, post on the community board there might be more people there. Have a great trip.

 

[minkydog]

My DH and my DS10 have epilepsy. DH has Jacksonian seizures, in which one side of his body goes numb from top to bottom in a "marching" sequence. He stays conscious but has no control over that body part until the seizure passes. DS10 has partial complex and grand mal seizures--his can be much more severe, but they are well-controlled. Both will have more seizure activity when they are tired, stressed or excited. But we still go to WDW We just take the meds and hope for the best.

 

[Pocohantasfan]

My DH and my DS10 have epilepsy. DH has Jacksonian seizures, in which one side of his body goes numb from top to bottom in a "marching" sequence. He stays conscious but has no control over that body part until the seizure passes. DS10 has partial complex and grand mal seizures--his can be much more severe, but they are well-controlled. Both will have more seizure activity when they are tired, stressed or excited. But we still go to WDW We just take the meds and hope for the best.

I have never heard of Jacksonian seizures. I've learned a lot about epilepsy in the last three years. DD also had seizures right after getting out of bed, or right before bed and every time we got on our boat in the water. DD did well the first time at WDW and she did not have a single one. Her meds should be decreasing when we go in October and that does worry me a little bit. By that time, we should be decreasing about one month. We'll just try to keep it light hearted, plus we're staying a little longer this time so we don't have to take flight every day to try to get everything in.

 

[elastigirlfan]

I had a mild form of epilepsy when I was a child. I was diagnosed when I was 9 or 10. They told me that they thought I should outgrow it and I did. I would only be concerned with any rides that might have flashing lights....that could cause one. Talk to your doctor about it and see what they say. Good luck....have a great trip!!

 

[PrincessNED]

I too had epilepsy as a child - from about the age of 7 or 8 til about 12. Glad to hear your child has been seizure free for a while. Have a great trip.

Oh and don't let your child use the epilepsy as an excuse to skip spelling class ( or any other classes) at school- Years after, I appologized to my grade 5 teacher for conning her into sending me to the nurses office every spelling class. ( miraculously my headaches disappeared right before gym classes) Sure didn't help my grade 6 spelling,

 

[Pocohantasfan]

I had a mild form of epilepsy when I was a child. I was diagnosed when I was 9 or 10. They told me that they thought I should outgrow it and I did. I would only be concerned with any rides that might have flashing lights....that could cause one. Talk to your doctor about it and see what they say. Good luck....have a great trip!!

That's great that you grew out of them. The neurologist thinks that DD will also grow out of them as well. I hope so. I have done some research into the rides at WDW and we may try one to see if she does okay. I'd hate to deprive her of a ride she wants to ride if she's "safe".

 

[Pocohantasfan]

I too had epilepsy as a child - from about the age of 7 or 8 til about 12. Glad to hear your child has been seizure free for a while. Have a great trip.

Oh and don't let your child use the epilepsy as an excuse to skip spelling class ( or any other classes) at school- Years after, I appologized to my grade 5 teacher for conning her into sending me to the nurses office every spelling class. ( miraculously my headaches disappeared right before gym classes) Sure didn't help my grade 6 spelling,

DD was diagnosed at 5 y/o and everyone in my family were devastated b/c we didn't have anyone on my side of the family with epilepsy. She got really special, probably a little too special treatment for a long time after that. One day my DN came running down the hall screaming, "she's having one, she's having one!" It was DD walking like a zombie with her arms straight out, but definitely not having a seizure. She thought it was hysterical and we giggled about it in private, but told her that she shouldn't scare people that way. She didn't even realize what it was like or looked to have a seizure so she was so far off, but DN didn't know that.

 

[SueM in MN]

My youngest DD has (what used to be called) Grand Mal seizures for about 11 or 12 years. She has an average of 2 per month.

A lot of people have mentioned flashing lights - those are only triggers for certain people. Even for those people, the lights usually have to be a certain frequency of the flashing - usually more rhythmic flashing, like strobe lights.
Disney is pretty careful with lights in attractions to not make them rhythmic.

Being overtired, getting dehydrated and being off-schedule with medication are all things that can lower the seizure threshhold (how easily a seizure occurs).

Here's a thread from about a month ago on the disABILITIES Board about seizures.

 

[treboats]

My DS who is 7 has abscence seizures as well and did have one when we were at Disney because of the heat and it was October. Heat always causes him to have seizures but as long as he is hydrated and some what cool he can pretty much ride whatever he wants.

 

[Rosered]

My nephew who's 19 years old has epilepsy. He has grand mal seizures. We took him to WDW last year and I was worried about how the trip would affect him. In fact I also consulted this board. Thankfully he was fine for most of the trip. He did have one seizure while we were driving down from NY but I think it was because he was overly tired and hadn't taken his meds on time. Other than that he was seizure free. We made sure he rested and took naps if we were going to do a late night at the parks. I was worried about the flashing lights on some rides since it was mentioned here but he didn't have a problem.

 

[Pocohantasfan]

That makes me feel a whole lot better knowing that Disney has thought about the light sequences. Kudos to them! Maybe I should have consulted this board as Rosered did and we could've ridden some of the rides that I was worried about. When DD had her EEG she was very sleep deprived and had several seizures just walking up the hall to procedure room. And then when the started the strobe light phase and hyperventilation phase, she had multiple seizures. As a mom, that can be a very heart wrenching experience.

 

[clonetothebone]

Our DD (7 y/o) has a "mild" form of epilepsy. Her seizures are of the mildest kind and more like staring. It's called petit mal or absence seizures, which is a better way of putting it. She just goes absent minded for a few seconds. She has not had a seizure since September of 2003! We fully expect the dr. to start decreasing her meds in September when we go back for her annual check up. We go to Disney in October. I worry that decreasing her meds and then the excitement and/or stress of it all may make her have a seizure. The last time we went to Disney, she'd only been on the meds almost a year and it had been several months since her last seizure and the dr. said "go to the Disney and have a great time".

Couldn't the Doc just decrease the meds in October after you get back? I don't know much about epilepsy but wouldn't think one month more on the meds would make that much difference.

 

[HappyLawyer]

try the disabilities board, that might help

 

[reenie1]

My 4 1/2 year old son has had seizures since he was 2. We go to Disney every year and his doctor says he is fine to go on any rides. Someone is, of course, right with him on all rides. We always just make sure he gets lots of sleep, takes his medication regularly, drinks a lot,... Stress can be a trigger, even happy stress, so we try to keep things low key. I agree with another poster - can they wait a few weeks to start decreasing the meds so you don't have to worry about it on your trip?