Abscence Seizures updated 11/13

[adisneymama]

Does anyone have any experience with these? If so I would like any info you may have. DD will be having an EEG this week to determine if she is having them. Also, how did it affect your Disney vacation? Anything your DC couldn't do?
Thanks!

 

[Mason7AK]

I don't think I can help with abscence seizures specifically, but my DD does have several other types of seizures. She has been to Disney several times since she was two years old. We just explain to Guest Services about her needs regarding the seizures and they give us the appropriate stamp to help us get through our day. They have always been very helpful and the CM's have been wonderful as well. Our DD gets tired very easily and if she is overtired or overheated she can have seizures. We just make sure she gets plenty of rest time, sometimes sleeping late and doing the parks later in the day and evening, which also helps with the heat issue. Also, we try to go when it is off season and a cooler time of the year if possible. First aid is a great place to go for a short rest as well. We keep DD's emergency seizure meds with her at all times, including on rides (I carry a small backpack with us for this purpose). If you have any problems or your child has a seizure in line, alert the nearest CM - again, they have always been wonderful!
Hope this helps! Angela

 

[TwoGriswolds]

I can only say as a nurse having dealt with tons of them (we used to call them petit mal) that I would think the main thing you'd be at issue about would be if you were swimming like at resort or in a water park since they're short , 20 seconds on average and really usually are like just a "spaced out" look thing with the strobe effect not an issue as such usually. Be sure to mention your trips and things with her doctor and get guidelines. And I'm praying for her. Oh one more thing, a lot of the petit mal types (I mean Absense Seizures) seem to "outgrow" them in late adolescence and teen years. Prayers to your whole family!

 

[adisneymama]

Thank you both. We are going Thurs for an EEG. I hope it doesn't take long to find out for sure.

Also, TwoGriswolds - She does exactly what you said. Closes her eyes and "bats" her eyelashes and she is done. She usually can tell us though what we said to her while it is happening. Would there be any rides that you can think of that she might need to skip? Thanks again!

 

[bubba]

Hi there ! I was diagnosed with absence seizures (petit mal epilepsy) when I was about 8. I was put on a couple of anticonvulsant medications for several years with yearly EEGs. After getting my meds up to therapeutic levels I never had another seizure. I came off the meds before we tried to get pregnant and never went back to them. My EEGs had normalized and the seizures never returned. Apparently it is quite common for children to outgrow this type of seizure, at least according to my neurologist. When I had my seizures, I would just stop and stare. It looked like I was daydreaming off in my own little world, but I wouldn't be able to remember what was said to me and I would not feel pain.
Anyway, what this ramble was about was that any attractions with strobing can bring on seizures. Strobe-type lights were the only thing I could identify that would induce a seizure.

 

[Shorty82]

Anyway, what this ramble was about was that any attractions with strobing can bring on seizures. Strobe-type lights were the only thing I could identify that would induce a seizure.

Some rides have strobe effects that you wouldn't think would. For instance Rock 'n' Roller Coaster and Expedition Everest both have ride photos and the flash goes off for every car so towards the back it looks like a strobe going off. The effect is short but if someone is very sensitive to strobes I can see it being a problem.

 

[Mason7AK]

Some rides have strobe effects that you wouldn't think would. For instance Rock 'n' Roller Coaster and Expedition Everest both have ride photos and the flash goes off for every car so towards the back it looks like a strobe going off. The effect is short but if someone is very sensitive to strobes I can see it being a problem.

This made me think to add that my DD has a real problem with Buzz Lightyear. The first time she rode it she went into a seizure. In the part of the ride where it looks like everything is going round and round and there are very bright strobe type lights. She loves this ride though, so when we get to that part of the ride I just cover her eyes and it works like a charm.
Angela

 

[adisneymama]

Thanks! She isn't tall enough for EE or RNR, i won't let her ride MS, but will need to ask about Buzz if she oes have this. Thanks for the tips.

 

[adisneymama]

Just wanted to update. We rec'd the results and she is having the seizures. We see the neurologist Nov 5th. Her ped said she there weren't any restrictins other than no swimming alone, not left alone in the tub. Thanks for the prayers and keep them coming please. For those that get the GAC, do you think I should? I know nothing about them. Could you give me some info?

 

[Shorty82]

For those that get the GAC, do you think I should? I know nothing about them. Could you give me some info?

The disABILITIES FAQ sticky has information on the GAC. What things could affect you daughter in the parks? GACs are different for everybody as everybody has different needs.

 

[JoiseyMom]

My DD11 was diagnosed with Petite Mal Epilepsy/Absence Seizures when she was 8 years old. I mentioned her zoning out during her yearly checkup with our pediatrician, and he gave her a test (not an EEG) then and there. He had her hyperventilate, and it brought on a seizure. He then sent us for the EEG, and on to a Pediatric Neurologist.

It took us about a year to get her on the correct levels of meds and for her to be seizure free. She was on Keppra alone adn that didn't work, they added Lamictal. This combo worked. She has been seizure free for 2 years, no side effects, and we have made many trips to WDW. She never had a seizure in the pool, and all has bee fine.

We started taking her off the meds this year. First the keppra, and she stayed seizure free, and now we are very slowly taking her off the lamictal. So far so good.

She sees her neuro every 4 months now, it used to be every 3 months. We live in NJ and have an AWESOME doctor. We also saw a great doctor at the Children's Hospital in Philly.

If you need any other questions asked, please ask. PM me, and I can give you my email.

 

[Mason7AK]

I think whether you need the GAC or not depends on several things. Like whether or not your daughter has "triggers" that bring the seizures on (like the strobe lights, or the heat), whether she comes out of the seizure on her own and without difficulty, etc.
My DD does not come out of her seizures on her own, they usually require intervention (rectal Diastat), and she is prone to having a grand mal if she gets overheated. So we usually explain her needs to Guest Services and do request a GAC. We use it only as needed. Otherwise, we just use fastpasses. Again, traveling at off-peak times and in cooler weather helps a lot!
Sorry to hear that your DD is having seizures, but hoping they can get her on meds that minimize the occurances! It is no fun dealing with seizure disorder!
Angela

 

[adisneymama]

Thanks for the info. I don't think we will be needing one. Her seizures are just a matter of closing her eyes and fluttering her eyelashes. It last roughly 10 seconds. The thing that triggers it is in activity. So she might have one while standing in line, but it isn't anything like what you described. The seizure itself is not dangerous. The ped has placed no restrictions on her for Disney, and the neurologist office said that unless they are convulsing (sp?) they don't place restrictions either so Disney would be fine. With the exception of swimming alone, bathing alone. Since she's only 5 she shouldn't be doing those things anyway.

JoiseyMom - I'll be sending you a pm! Thanks!

 

[Shorty82]

I think whether you need the GAC or not depends on several things. Like whether or not your daughter has "triggers" that bring the seizures on (like the strobe lights...

I don't see how a GAC would help with seizures being triggered by strobe lights. It isn't that hard to figure out what rides and attractions have strobes and you don't need a GAC to avoid a ride. For instance I know I shouldn't ride Mission: Space Orange because of my heart so I just avoid riding it, no GAC needed.

 

[Mason7AK]

I don't see how a GAC would help with seizures being triggered by strobe lights. It isn't that hard to figure out what rides and attractions have strobes and you don't need a GAC to avoid a ride..

Excuse my bad example. Sorry. Didn't mean to offend. Was really thinking more of the heat issue bringing on seizures. GAC can definitely help with that.
Angela

 

[Shorty82]

Excuse my bad example. Sorry. Didn't mean to offend. Was really thinking more of the heat issue bringing on seizures. GAC can definitely help with that.
Angela

You didn't offend me, just confused me. I thought about it and couldn't figure out how GACs could help with strobes so I asked.

 

[adisneymama]

Thanks for the examples etc. I don't really see us needing it, but we'll just see how things work out. I can always get one later if need be. Now to just wait until Nov. 5th.

 

[SueM in MN]

besides the information in the disABILITIES FAQs thread about GACs, there are also links to some past threads about seizures.
There are some attractions in WDW that have sudden bright lights, but none actually have strobe lights. The ones that do have lights for a while have what I would describe as irregularly pulsing lights. Most people who are sensitive to strobe lights are sensitive to the regularly flashing lights, so they were careful to make all the flashing irregular and to not have actual stobes. Only a small number of people with seizures are sensitive to strobe lights, and even some of them are only sensitive if their seizure threshold (how much stimulation it takes to cause a seizure) has been lowered by other things like lack of sleep, dehydration, changes in schedule, etc.

That said, there are some people who might be extremely sensitive to even the irregularly flashing lights ( like Mason7AK mentioned ). My youngest DD has had a number of seizures at WDW, but none related to lights. She becomes uncomfortable on Maestrom where there is a sort of twirling (but irregularly twirling) light in front of you as you go up the incline into the story of the ride. DD just closes her eyes there.
She also doesn't like Buzz Lightyear in the part Mason7AK mentioned. DH is riding with her and turns the car backwards until they are well into the 'tunnel'. Doing that, she has not had any problems with Buzz.

Maelstrom and Buzz Lightyear in the area that Mason7AK mentioned are the only 2 I have heard people having problems with.

 

[whgrn]

My DD12 has absence seizures too. Diagnosed 3 years ago, has been on many different meds and now is doing great on a "cocktail" of Depakote, Zonegran and Lamictal. (No seizures in nearly 2 years! )We are also hoping that she will outgrow this by the time she hits her 20s. I think it started when she was about 8, but we thought the fluttering eyes were a nervous tic or something. Even her original neuro didn't think she was having seizures. Turned out she was having one every 30 - 60 SECONDS!

The only "spikes" we have seen on her EEG in the past 2 years are when they do the strobe lights. I know we will need to skip some rides this time. Anyone know which ones? (Besides Buzz Lightyear, and Space Mountain, which she'll skip anyway since she hates roller coasters...)

As far as a GAC, I would definitely get one. DD also is very sensitive to overheating and dehydrating, so waiting a long time in the sun will NOT work for her. We will keep water bottles with us at all times as well, and she will wear sunglasses and a visor, not to mention SPF 50 sunscreen. The GAC can allow for a seperate, shaded waiting area.

Joiseymom, we're in NJ too. Who do you go to? We see Dr. Bojko up at St. Barnabas. What a fabulous program they have there!!!

 

[SueM in MN]

The only "spikes" we have seen on her EEG in the past 2 years are when they do the strobe lights. I know we will need to skip some rides this time. Anyone know which ones? (Besides Buzz Lightyear, and Space Mountain, which she'll skip anyway since she hates roller coasters...)

Check my previous post just before yours and the links to past threads about epilepsy in post 3 of the disABILITIES FAQs thread.