Epilepsy, kids & Disney: your experiences?

[Hatboxer]

Hey, fellow Dis'ers. I have an upcoming trip in early May and my 7-year-old son has recently been diagnosed with epilepsy and is now on medication. Ultimately, I'll follow our neurologist's guidance on whether to go (he's said that we should revisit over the course of the next month). In the meantime, I would love to hear from all of you. Has anyone navigated a Disney vacation with an epileptic child (or as an epileptic yourself)? How do you ensure enough downtime and avoid the exhaustion that could lower the seizure threshold? Any tricks for getting an older kid to take a midday nap? How do you handle pool time - or do you avoid it?

I realize ALL kids are different and there are a million flavors of epilepsy. Also realize we're not a group of neurologists but would value any and all experiences you can share as parents (or as adults who have seizures themselves). This experience has been tough and emotional for the whole family and I honestly feel a bit silly even thinking about our Disney trip right now, but yet it's on my mind.

Thank you in advance!!!

(quick info about our trip: we'll be staying close to the parks at GF and BWV split stay. it's our third trip, so not newbies, and I have a lot planned...but am contemplating ditching a lot of it for more flexibility & downtime. My kid has previously said that what he most looks forward to is "riding the carousel and eating popcorn" so I am trying to remember that he likes the simple stuff just as much)

 

[RogueX]

I have partial complex seizures and was diagnosed 4 years ago. Since then, I've traveled to both Disney and Universal several times, so I've figured out a few tricks that have worked for me.

I make sure that I take me medication at the same time everyday in order to stay compliant while on vacation. It's so easy to fall out of routine when you're away from home no matter how well you prepare. It's especially important for me because one of the meds I take for my seizures is also for my migraine prevention.

My first trip after being diagnosed was with a lot of family members and they noticed the changes on my face and body and were able to position themselves around me to make sure I was safe.

I would go back to the hotel for a few hours to rest after if I was really in need of it, otherwise I sat out rides for an hour or so and took it easy for a bit.

Staying hydrated and making sure I eat regularly helps.

My seizures are not triggered by flashing or blinking lights, though there are times I'll still cover one eye because my head feels a little fuzzy.

A lot will come down to the type of seizures your child has and the effects they have on him (does he get a bad headache, disoriented, etc.) Keep a list of medications on hand in case you need to go to the hospital for any reason, because that will be important to know.

If you know what his triggers are (or atleast some of them) then you'll have an idea on things to avoid.

You can DM me if you have any questions and I'll try to answer. Hopefully this helps.

 

[SueM in MN]

My youngest daughter has seizures which are not well controlled despite being on multiple medications.
We’ve been to WDW multiple times and she had had seizures in the parks. If you child needs a place to rest, each park has a First Aid station that is cool, calm and has cots that can be used for resting.
This is the advice I’ve gotten over the years:
Things that are very important to be aware of are sleep deprivation, dehydration and getting off schedule with medication. All of those things can lower the seizure threshold (how easy it is for a seizure to occur). It's very easy to get off schedule or forget medication while on vacation. One things we have found that helps with this is to actually use an individual dose medication container and an alarm (on our phone or iPod) as a reminder for medication times.

I think trying to get a 7yr old (actually most kids) to take a nap is kind of futile. It’s probably more important for most people to keep to their regular bedtime or at least hours of sleep. So, probably not ‘open to close’ or multiple late nights.

Post 24 on page 2 of the disABILITIES FAQs thread has more info

 

[Hatboxer]

thanks so much @SueM in MN and @RogueX! really appreciate getting your take. How have fireworks been in your cases? We do not yet know if my child has photosensitivity, but I booked the seats & treats party so we could be outside of the madness just in case. Also considering just skipping that and watching from the hotel (or not at all).

@SueM in MN do you do anything special for pool time? I was thinking it would be better earlier in the day and we'd have to be in the water with him at all times...but still seems nerve wracking!

 

[RogueX]

I didn't find the fireworks to be a seizure problem, it was more a migraine issue since I'm sensitive to sound and the reverberating from the booms actually felt like I was being hit.

Ask the neurologist if there are any suggestions regarding fireworks in particular.

 

[DisSurfer878]

thanks so much @SueM in MN and @RogueX! really appreciate getting your take. How have fireworks been in your cases? We do not yet know if my child has photosensitivity, but I booked the seats & treats party so we could be outside of the madness just in case. Also considering just skipping that and watching from the hotel (or not at all).

@SueM in MN do you do anything special for pool time? I was thinking it would be better earlier in the day and we'd have to be in the water with him at all times...but still seems nerve wracking!

I had benign rolandic childhood epilepsy (the type you grow out of) and it was photosensitive.

Fireworks weren't issue for me but certain rides were. Space Mountain being one of the worst, as was Soarin'. I have never ridden Mission Space or Flight of Passage but I'm nearly certain they would have caused me issues because I've watched on youtube.

Exhaustion, dehydration, and over stimulation were my triggers. I was petite, so it worked, but renting a stroller or being carried much older than typical kids was a must for me.

We took a lot of breaks, my parents gave me all the powerade/gatorade/whatever liquids they could to get me to drink because I was fussy about water. We tried to sit down for at least two meals a day.

I never had episodes AT Disney, but had multiple after coming home from trips. Not just Disney either. The neurologist believed it was like my body was holding everything together during the excitement and the emotional come down after and post exhaustion just triggered my seizures, as did the heat. Usually the day after I was in significant heat I would have a seizure or an aura episode.

 

[Hatboxer]

@DisSurfer878 thank you for sharing your experience - super helpful. And happy to hear you grew out of it - I'm sure that was tough to go through.

that is really interesting about post-trip seizures. It's a good reminder to not let our guard down on a rest day just because we're taking it easier, too.

did you find that the same times of day were problematic for you at home and on the trip? I know you didn't have any actual seizures while on the trip, but curious if your patterns were basically out the window on the trip schedule or not. My son's episodes have all been in the later afternoon or evening, when he's tired.

 

[SueM in MN]

thanks so much @SueM in MN and @RogueX! really appreciate getting your take. How have fireworks been in your cases? We do not yet know if my child has photosensitivity, but I booked the seats & treats party so we could be outside of the madness just in case. Also considering just skipping that and watching from the hotel (or not at all).

@SueM in MN do you do anything special for pool time? I was thinking it would be better earlier in the day and we'd have to be in the water with him at all times...but still seems nerve wracking!

My daughter is not photosensitive and doesn’t have a problem with fireworks.
His doctor will advise you more, but for most people who are photosensitive, the issue is lights that regularly repeat in a specific frequency .

My daughter is also physically disabled in addition to having epilepsy. It’s difficult to get her into the pools (she doesn’t care for the pool lifts) and once she’s in, she can’t move without me or her dad being hands on. So, she doesn’t go in the pool much.
My family’s experience is that the pools are often quieter in the morning - a lot of pepole do the parks early to take advantage of early park opening shorter waits.

 

[DisSurfer878]

@DisSurfer878 thank you for sharing your experience - super helpful. And happy to hear you grew out of it - I'm sure that was tough to go through.

that is really interesting about post-trip seizures. It's a good reminder to not let our guard down on a rest day just because we're taking it easier, too.

did you find that the same times of day were problematic for you at home and on the trip? I know you didn't have any actual seizures while on the trip, but curious if your patterns were basically out the window on the trip schedule or not. My son's episodes have all been in the later afternoon or evening, when he's tired.

So, my seizures were almost completely nocturnal. The episodes would begin in the late afternoons and evenings. That's not to say I never had daytime seizures, I did. But they typically occurred in the night and very early mornings (like 3-5am). The aura episodes would happen in late afternoon and evenings.

And thanks, it was tough! I was fortunate and feel lucky every day to have grown out of it, but the years I was sick were really, really hard.

 

[leeliani]

My 19 year old son had his first seizure at Disney World 6 years ago. His triggers are fatigue, dehydration, stress, and hunger. He also gets migraines from flashing lights. The trips we’ve taken since then we’ve been really conscious about taking breaks to eat and get plenty of rest. Make sure you don’t do late nights and early mornings back to back.

Medication on time is absolutely essential. Talk to your neurologist about getting some bridging medication to have on hand when your son is compromised. Basically, this is just a lower dose of his rescue medication that can help him get through a day if he has missed a dose or is having multiple auras and feels off.

As far as fireworks go, my son never had an issue with them. Some of the shows and rides have strobe light effects though. He will close his eyes on his own when he sees them and I’ll will let him know when the coast is clear.

I wish you the best. Being an epilepsy mom iis so hard. There is hope, though. About a year ago after having nearly 70 tonic clonic seizures and failing 5 different medications, my son had a VNS (Vagus Nerve Stimulator) implanted and he has been seizure free for almost a year.

 

[Hatboxer]

Congratulations on finding a treatment that works!!! I have been reading about VNS; it’s pretty fascinating. My son’s first medication didn’t work so we are onto #2. They’ve each come with challenging side effects so I can imagine how tough going through 5 must have been for all of you.

Thank you for the tip on a bridge medication - I will definitely ask about this at our next appointment!

Medication on time is absolutely essential. Talk to your neurologist about getting some bridging medication to have on hand when your son is compromised. Basically, this is just a lower dose of his rescue medication that can help him get through a day if he has missed a dose or is having multiple auras and feels off.

As far as fireworks go, my son never had an issue with them. Some of the shows and rides have strobe light effects though. He will close his eyes on his own when he sees them and I’ll will let him know when the coast is clear.

I wish you the best. Being an epilepsy mom iis so hard. There is hope, though. About a year ago after having nearly 70 tonic clonic seizures and failing 5 different medications, my son had a VNS (Vagus Nerve Stimulator) implanted and he has been seizure free for almost a year.

 

[SueM in MN]

My 19 year old son had his first seizure at Disney World 6 years ago. His triggers are fatigue, dehydration, stress, and hunger. He also gets migraines from flashing lights. The trips we’ve taken since then we’ve been really conscious about taking breaks to eat and get plenty of rest. Make sure you don’t do late nights and early mornings back to back.

Medication on time is absolutely essential. Talk to your neurologist about getting some bridging medication to have on hand when your son is compromised. Basically, this is just a lower dose of his rescue medication that can help him get through a day if he has missed a dose or is having multiple auras and feels off.

As far as fireworks go, my son never had an issue with them. Some of the shows and rides have strobe light effects though. He will close his eyes on his own when he sees them and I’ll will let him know when the coast is clear.

I wish you the best. Being an epilepsy mom iis so hard. There is hope, though. About a year ago after having nearly 70 tonic clonic seizures and failing 5 different medications, my son had a VNS (Vagus Nerve Stimulator) implanted and he has been seizure free for almost a year.

Just a suggestion - rather than covering both eyes, the Epilepsy Foundation suggests covering one eye and turning away. If both eyes are covered or the person just turns away, both eyes are sending the same information to the brain, which could reach the threshold to trigger a seizure. If only one is covered, each eye is sending different information with the brain.

Link to Epilepsy Foundation information about lights.

 

[SleepyDeb]

As people have mentioned, everyone has different triggers and that is going to drive what you can and can't do. I don't have epilepsy, but my father, husband, SIL and BIL (husband's siblings) all have it. All have different triggers. If my husband avoids caffeine entirely, is careful with sugar and takes his meds, he's seizure free. One piece of chocolate and I can tell that he's on the edge.

So, my piece of advice is that a good diet with minimal sugar can't hurt, even if your child has different triggers.