Any Epileptics who go to see the mouse?

[Kennywife]

I'll admit it, I have Epilepsy and I looove me some Disney! I feel the most comfortable at Disney when I am traveling. I have been to DL, WDW, and DCL, got the same level of service and consideration everywhere!

On DCL, it was mine and the hubster's Disneymoon and the staff looked out for me all the time I was on the ship. They were espiecially considerate of the fact that I can't have onions. (They bring on seizures).

I would choose a Disney vacay over anywhere else just for this reason. (I work as a travel writer, so we travel to different places). What have your experiences been?

Anna

 

[Cheshire Figment]

Hi and to disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Post #3 has multiple topics in alphabetic order. You might want to go there and look at Epilepsy; there are comments and links at that location.

Or, if you want an easier route, click on the link in my signature.

 

[CLR4321]

I just wanted to say hello! I have just recently started having seizures that seem to occur about every 6 months (possibly more often in my sleep though). The first one that I know of for sure was 2 years ago. I have yet to get a diagnosis, and am not taking any medication yet (my own choice). The MRI, 2 EEG's, and 2 CT scans have all come up with nothing. I recently moved to a new state, so am in the process of getting hooked up with a new neurologist who hopefully will be able to provide me with some answers. I worried so much that I would have a seizure at WDW when I went in March...this is common whenever I am out in public places. It's great to know that other folks who have seizures also are treated well at WDW. I am keeping my fingers crossed that I don't have one on my trip in September. I just had a tonic-clonic seizure about 2 weeks ago, so if they keep up at this frequency, I will coast through my trip without having one.

 

[SueM in MN]

I have yet to get a diagnosis, and am not taking any medication yet (my own choice). The MRI, 2 EEG's, and 2 CT scans have all come up with nothing. I recently moved to a new state, so am in the process of getting hooked up with a new neurologist who hopefully will be able to provide me with some answers.

As an RN with experience with epilepsy, I just wanted to point out that, despite a lot of testing, you may never get an answer to why you started having seizures. The MRI and CT scans are usually to look for things like tumors that can cause seizures and could be corrected. EEGS are to look at the electrical activity in your brain. Many people, even with frequent seizures have a pretty normal looking EEG and no seizures occur during their EEG (even though things are being done to try to trigger a seizure).

As Cheshire Figment already pointed out, there us some information in the disABILITIES FAQs thread about epilepsy in post #3.
We go to WDW at least twice a year with my youngest DD, who does have epilepsy. She has never had complete seizure control and does have between 2 and 5 tonic-clinic seizures a month. She has had some at WDW. Depending on where we are, we may just lean her wheelchair back against a bench and rest for a while or go to First Aid and have her rest on a cot. Every time we have not gone to First Aid, we have had several CMs stop to see if everything was OK and whether we needed any help. The people at First Aid were great and made sure we had what we needed.

The most important things to remember at WDW (or anywhere else you go on vacation) is that sleep, staying on a routine and avoiding dehydration are all very important. All of those things can lower the seizure threshold - which makes seizures more likely. Many people never find out precisely what triggers their seizures, but if you stay hydrated, keep your medications on schedule and get your usual amount of sleep, you are less likely to have a seizure even if you are exposed to something that is a trigger for you.

So, welcome to the new posters on this thread and hope you have great (and seizure free) future trips to WDW.

 

[CLR4321]

As an RN with experience with epilepsy, I just wanted to point out that, despite a lot of testing, you may never get an answer to why you started having seizures. The MRI and CT scans are usually to look for things like tumors that can cause seizures and could be corrected. EEGS are to look at the electrical activity in your brain. Many people, even with frequent seizures have a pretty normal looking EEG and no seizures occur during their EEG (even though things are being done to try to trigger a seizure).

As Cheshire Figment already pointed out, there us some information in the disABILITIES FAQs thread about epilepsy in post #3.
We go to WDW at least twice a year with my youngest DD, who does have epilepsy. She has never had complete seizure control and does have between 2 and 5 tonic-clinic seizures a month. She has had some at WDW. Depending on where we are, we may just lean her wheelchair back against a bench and rest for a while or go to First Aid and have her rest on a cot. Every time we have not gone to First Aid, we have had several CMs stop to see if everything was OK and whether we needed any help. The people at First Aid were great and made sure we had what we needed.

The most important things to remember at WDW (or anywhere else you go on vacation) is that sleep, staying on a routine and avoiding dehydration are all very important. All of those things can lower the seizure threshold - which makes seizures more likely. Many people never find out precisely what triggers their seizures, but if you stay hydrated, keep your medications on schedule and get your usual amount of sleep, you are less likely to have a seizure even if you are exposed to something that is a trigger for you.

So, welcome to the new posters on this thread and hope you have great (and seizure free) future trips to WDW.

Thanks for your input! Yes, I do understand about the lack of answers for some folks with seizure disorders. When I go to the next neurologist I am going to look into long term EEG options. I have a cousin who had an average of 3 petit mal seizures a day, and every time he had an EEG done, he ended up not having any. To the Drs he looked "normal". Medication possibly prevented any tonic-clonic seizures from happening, but didn't help with the petit mal ones. He ended up ditching his medication and going on a strict diet that is very similar to the ketogenic and drinking tea with herbs that can help prevent seizures. He has gone a little over a year now being seizure-free.
For our trip, I am going to instruct my boyfriend to get a wheel chair and take me to first aid to rest off the post-ictal state (mine have lasted an hour on average where I am still having automatic behaviors, unable to communicate, and unable to form memories - blacked out), so I would need that ability to lay down.
It's nice to know I am not alone here!

 

[SAGE]

To: SueM,

Great information! Thanks.

Our upcoming trip is the first visit since DS starting having seizures. (Grand Mal kind). Is it typical for individuals with seizures, to obtain a wheelchair for visits?
Or are the wheelchairs more for a secondary disability?

It certainly has been going through my mind, what do I do if he has a seizure in the theme park and I am not close to the First aid station? He's over 6 ', much bigger than I am. Any thoughts?

I have been taking him for the past few years - He really looks forward to the trips - loves Disney!! It's just the 2 of us, I hope I not naive in thinking this can still work.

 

[SueM in MN]

To: SueM,

Great information! Thanks.

Our upcoming trip is the first visit since DS starting having seizures. (Grand Mal kind). Is it typical for individuals with seizures, to obtain a wheelchair for visits?
Or are the wheelchairs more for a secondary disability?

It certainly has been going through my mind, what do I do if he has a seizure in the theme park and I am not close to the First aid station? He's over 6 ', much bigger than I am. Any thoughts?

I have been taking him for the past few years - He really looks forward to the trips - loves Disney!! It's just the 2 of us, I hope I not naive in thinking this can still work.

My DD has cerebral palsy and can't walk, so that is her reason for the wheelchair.
People without a mobility needs who have epilepsy would not usually use a wheelchair unless there were some other extenuating circumstances.

Many attractions do have some wheelchairs in case of emergency and if you need help, you can yell for any CM to get help for you. If he has an aura that lets him know to expect a seizure, he may be able to get into a safe position before the seizure occurs. If he were to have a seizure on an attraction, there are CMs at the exit of all attractions. The ride could be stopped there for you to get assistance with getting him off.