Seizures

[RVGal]

I searched. Really. I hope I am not posting an obvious question that comes up often. I scanned through the first 3 pages and couldn't find anything. I also tried reading the stickies, but all I could find was a post from over a year ago.

Here goes. DS6 had new onset seizures in January. He is on anti-convulsive meds and we are in the process of learning his triggers. Nothing definite yet. MRI came back normal. EEG hasn't been scheduled.

He had his first breakthrough seizure last week. So, whatever hopes I had that the ones in January were just a fluke have been dashed.

We have a trip to WDW scheduled for October. We have been to Disney World many, many times, but never with a seizure prone child. I am brand spanking new to this and still adjusting. What do I need to look out for? Do I need a GAC to let the CMs know that he may have a problem?

I know that we won't be doing the parks for very long at a time because becoming overly tired or dehydrated can lower the seizure threshold. We aren't commando style touring people anyway. I'm just trying to think my way through all the rides and what might be seizure triggers on them. It's just that I have always been busy enjoying the rides, so I didn't pay special attention to things like strobe lights or whatever.

Any help or suggestions would be greatly appreciated.

 

[momto2greatgirls]

Aside from being cautious about commando touring, which you said is not your style anyhow, there isn't much else that I would think would cause seizures (I have epilepsy, my 12 yr old has a disorder that includes seizures as well), aside from the stobe lights. You should have the EEG scheduled before the trip, since you have a lot of lead time. I've known many, many people with seizure disorders, and while I know strobe lights can cause seizures in some, I've never met someone for whom it was an issue. Hopefully the EEG will put your mind at ease over that (they will/should use a strobe light at different intervals during the EEG, ask ahead of time to be sure it's included in the test on your child), or, if it is an issue will help you avoid rides where it could be an issue.

Getting enough sleep, eating well, and just plain old good sense touring at Disney really should be your best bet to ensure a stress-free time. Just keep in mind, that ANY stress, good (excitement) or bad, can lower a seizure threshold. At least your son has been there before many times, so the "newness" of the trip should not stress him.

Depending on your situation you may want to ask the dr to prescribe "emergency seizure meds' to keep on hand in case of a prolonged siezure.

I had a prescription for these meds for my daughter for over 6 mos and didn't fill it, since she was so well controlled for quite a while. I finally filled it, put it away in her drawer in her room...........then on morning DH comes and wakes me up on my ONE day to sleep (acually he sent my other daughter up) and says DD is having a BAD seizure. I never even told him where the emergency meds were since I didn't think it was important. All was well after the meds. I don't want to scare you but having the meds on hand can bring a lot of peace of mind.
Good luck, I hope things go well for you.

 

[SueM in MN]

I searched. Really. I hope I am not posting an obvious question that comes up often. I scanned through the first 3 pages and couldn't find anything. I also tried reading the stickies, but all I could find was a post from over a year ago.

The post in the stickies in post #3 in the links (the 2 links under epilepsy) is current information, even though it is over a year ago. That kind of information doesn't change that often, so it will probably still be up to date 5 yrs from now. So, there is still lot of information in there that you can use.

We have a trip to WDW scheduled for October. We have been to Disney World many, many times, but never with a seizure prone child. I am brand spanking new to this and still adjusting. What do I need to look out for? Do I need a GAC to let the CMs know that he may have a problem?

You probably would not need a GAC. In case he would have a seizure, you would just deal with it at the time. There is nothing the CM would do ahead of time in case he had a seizure.
And, if his first seizure was in January and his last one was this week, it's very likely he won't have a seizure while you are at WDW.

I know that we won't be doing the parks for very long at a time because becoming overly tired or dehydrated can lower the seizure threshold. We aren't commando style touring people anyway. I'm just trying to think my way through all the rides and what might be seizure triggers on them. It's just that I have always been busy enjoying the rides, so I didn't pay special attention to things like strobe lights or whatever.

Any help or suggestions would be greatly appreciated.

Unless you know that certain things are triggers for him, there is really nothing to watch out for. And, some people never know exactly what are triggers for them.
Strobe lights or regularly flickering lights are a trigger for some people. There are some rides that use lights, but there are not any actual 'strobe' lights and WDW is pretty careful to have any flickering or lights flashing be irregular, which is much less likely to cause anyone problems.
And, not everyone with seizures is sensitive to strobe lights, so he may not be sensitive to strobes.

As you already know, the biggest things that can lower the seizure threshold are dehydration and lack of sleep (usually not just being tired, but being overtired). It's also very easy to get off schedule with medication when on vacation and that can make a big difference. It's a good idea to set an alarm (like a cell phone alarm or something similar) to remind you of medication times. We also have a small pill holder to put one dose of medication into. It's much easier than all of a sudden realizing it's 3pm and you can't remember whether or not you gave the noon dose.(Not saying we have ever done that)

My DD has between 3 and 6 seizures a month and almost always has one when we are at WDW. If it happens on a ride, you just get off as best you can. If you need help getting him off the ride or out of the ride building, let the CMs know. My DD can't walk, so our only problem would be getting her out of the ride car as dead weight and back into her wheelchair.
We usually just find a place out of the sun to park and rest for a while. If he needs to lie down, there are cots in First Aid where he can do that. If you need help getting to First Aid, ask a CM and they will get help for you.

Also, my DD isn't able to let us know if she has an aura most of the time (something that sort of fortells a seizure will be occurring). Your son is old enough that he may be able to tell you if he noticed any aura before his last seizure. If you were there when he had his last seizure and noticed anything unusual before it occurred, that might help you to have some warning of future seizures; even a few minutes can help.

 

[SueM in MN]

I never even told him where the emergency meds were since I didn't think it was important. All was well after the meds. I don't want to scare you but having the meds on hand can bring a lot of peace of mind.
Good luck, I hope things go well for you.

My DD is 22 and had her first seizure at about age 10. We've never had any need for emergency meds (just to put your mind at ease more).

 

[RVGal]

Okay, that helps. Since we don't know his triggers yet, I was worried that I would have to try and keep up with all the possible triggers out there. If there aren't any obvious ones on the rides or shows, we should be in good shape.

I'm surprised at how long it is taking to schedule the EEG. The MRI was what I was thinking would be difficult, but had that done in only a couple of weeks. We are working with a pediatric neurologist and she prescribed an emergency anti-seizure med to keep onhand. Her concern is that we live in a rural area and EMS response times may not be what she'd like. EMS has always responded within minutes, but I understand her concern.

The seizure he had last week was different from the series of seizures he had in January. So far, my son says he can't tell when he is going to have a seizure. He doesn't remember anything about them when we ask.

 

[SueM in MN]

Okay, that helps. Since we don't know his triggers yet, I was worried that I would have to try and keep up with all the possible triggers out there. If there aren't any obvious ones on the rides or shows, we should be in good shape.

The designers are pretty careful to keep things that would frequently cause a problem out of the rides.

Don't be surprised to not know a whole lot more about triggers after the EEG. You might just find that nothing they did actually triggered a seizure. It's not unusual to have an EEG where no seizures occur. That, in itself, can be useful information because you would know some things that did not trigger a seizure even though that's what they were trying to do.
Or, you might find out that 'yep, a seizure actually did occur during the test, but, no, we don't know exactly what happened during the test to trigger it."

 

[minkydog]

my DS12 has had seizures for the past 4-5yrs. He has severe brain damage, so we weren't surprised. Sad--and shocked!--but not surprised. We keep Diastat(rectal Valium) at home and at school only because Christian has loooong seizures. It is not unusual for his seizures to go 5-8 minutes and they have gone as long as 25 minutes

Most of the time his seizures occur in his sleep, but they have happened while sitting on my lap, playing in the pool, and taking a bath. Obviously, we are very watchful. Like you, we have never really found any particular triggers. Sometimes, if we've had a hard, very active day, I'll get this "feeling". I can't explain it. Maybe Christian is more jumpy than usual or more tired. But I'll get this "feeling" that I need to watch out and sure enough, he'll have a seizure at bedtime. Since Christian gets disoriented and tries to get away, we have to be careful. He falls out of bed & has had a few head injuries. He could try to get out of his room or even out of the house(!) so we keep his door locked from the outside during the night.

Now that I've said all that and thoroughly scared you to death let me say this: Don't let seizures keep you from living your life. We do everything we've always done. We just take our meds with us and if Christian has a seizure, well..., he just does. We've been to WDW several times with him and Christian has had several seizures. But he's also had them in our RV, which is about a laid-back a vacation as you can get. I don't take responsibility when he has a seizure and I don't take credit when he doesn't.

 

[RVGal]

The designers are pretty careful to keep things that would frequently cause a problem out of the rides.

Don't be surprised to not know a whole lot more about triggers after the EEG. You might just find that nothing they did actually triggered a seizure. It's not unusual to have an EEG where no seizures occur. That, in itself, can be useful information because you would know some things that did not trigger a seizure even though that's what they were trying to do.
Or, you might find out that 'yep, a seizure actually did occur during the test, but, no, we don't know exactly what happened during the test to trigger it."

I have been warned, repeatedly, that we may go through the entire testing process and never know what causes his seizures. I do know that whenever the EEG is schedule, my son is supposed to be somewhat sleep deprived before the test. The seizure that he had last week was first thing in the morning. One of the doctors (we've seen so many) told me that high risk times are when he is first waking up or first going to sleep.

my DS12 has had seizures for the past 4-5yrs. He has severe brain damage, so we weren't surprised. Sad--and shocked!--but not surprised. We keep Diastat(rectal Valium) at home and at school only because Christian has loooong seizures. It is not unusual for his seizures to go 5-8 minutes and they have gone as long as 25 minutes

Most of the time his seizures occur in his sleep, but they have happened while sitting on my lap, playing in the pool, and taking a bath. Obviously, we are very watchful. Like you, we have never really found any particular triggers. Sometimes, if we've had a hard, very active day, I'll get this "feeling". I can't explain it. Maybe Christian is more jumpy than usual or more tired. But I'll get this "feeling" that I need to watch out and sure enough, he'll have a seizure at bedtime. Since Christian gets disoriented and tries to get away, we have to be careful. He falls out of bed & has had a few head injuries. He could try to get out of his room or even out of the house(!) so we keep his door locked from the outside during the night.

Now that I've said all that and thoroughly scared you to death let me say this: Don't let seizures keep you from living your life. We do everything we've always done. We just take our meds with us and if Christian has a seizure, well..., he just does. We've been to WDW several times with him and Christian has had several seizures. But he's also had them in our RV, which is about a laid-back a vacation as you can get. I don't take responsibility when he has a seizure and I don't take credit when he doesn't.

We have the Diastat too. That is the emergency prescription the neurologist had us fill to keep on hand. We have one dose at home and the other at school.

DS6s seizure last week lasted about 8 minutes. It seemed like it took him forever to recover. They asked me all these questions about what the seizure looked like. Geez. I wasn't taking notes. I will next time... if/when there is a next time... but nobody bothered to tell me that I needed to keep up with the physical attributes of the seizure.

Like I said before, this is all just very new to me and has thrown me for a bit of a loop. I'm sure we'll adapt to whatever his situation turns out to be. If he goes the rest of his life seizure-free, great. If not, we'll deal with it. What else can you do, right?

 

[momto2greatgirls]

DS6s seizure last week lasted about 8 minutes. It seemed like it took him forever to recover. They asked me all these questions about what the seizure looked like. Geez. I wasn't taking notes. I will next time... if/when there is a next time... but nobody bothered to tell me that I needed to keep up with the physical attributes of the seizure.

?

DD recently began having seizures again after a LOONG time of being controlled. Since they were so different from what we were used to (and we had moved and had new docs) I took my digital camera and video taped them. She was safe, there was nothing for me to do....so I got out the camera. The doctors were THRILLED that I had done so, so they could actually see what was going on.
Good luck.

 

[jennifer03878]

We are going to Disney in 2 weeks and I suffer from seizuers and had to stop taking my medication (I was laid off from my job and lost my insurance. I know it was due to my having epilipsy but since NH is a no fault state i can't prove it but i know that was the reason). I was in the hospital all day on Tuesday and they were wonderful, giving me a months worth of medication at no cost and helping me to get on medicade until I can get back on my feet again be it getting on disability since at this point I really can't work (I am so dizzy all the time that I can't drive let alone work). I am very worried about our trip to WDW because I am so tired all the time. I'm not sure if it's because I have been off my medication for over 2 weeks (i was on strong doses of Topamax among other things) but hopefully in the next 2 weeks my body will get used to being on everything again and my body will get back to the way it was before and I will be able to enjoy our time in Fla and then when we get back I'll feel like myself and I'll be strong again and wil be able to look for a job with no issues. If not I'm not sure what I will do.

Epilipsy is definately something that i never dreamed I would have I would have problems with and I take sympathy for all that have been living with it for as long as they havel i have only been diagnosed since last August and i feel like my world has been turned upside down.

 

[3DisneyNUTS]

I have to disagree that she will definitely need a GAC for her son. There is a unique issue we have with DS because of his seizures that I am uncomfortable posting (because of the people abusing the GAC) I am going to PM the OP about it. But epilepsy makes doing Disney a little more challenging if the seizures are breaking through, the GAC helps tremendously with those issues.