Epilepsy at Disney World

[grlzmom]

Our dd 14 has seizure disorder and strobes/lights are one of her triggers, however has NOT had one after riding anything at Disney, and she rides them all.

I agree with others, hydration and rest are very important.

With our dd, her medications make her very sun sensitive and so lots of sunblock is very important even when she is only out for a few minutes. Also, remembering to take the medication at the proper time is always a challenge as we always seem to be somewhere different while in Disney so we set the alarms on our cell phones to go off as a reminder.

Also, we always make sure we have an extra stash of medication in case something goes missing, etc. Dont want to have it all in one place and lose it.

Have a wonderful wedding/honeymoon, hope you guys have a GREAT time.

Jeanne

 

[SueM in MN]

Also, remembering to take the medication at the proper time is always a challenge as we always seem to be somewhere different while in Disney so we set the alarms on our cell phones to go off as a reminder.

Very good suggesion - otherwise, you can end up with the situation of realizing it's 3pm and you have not taken a noon dose yet. We have noticed that time seems to run differently at WDW.

Also, we always make sure we have an extra stash of medication in case something goes missing, etc. Dont want to have it all in one place and lose it.

we always bring more than one dose to the park with us (bad to drop a pill and not have any replacement), but we leave the bulk of the medication in the room.

 

[joycmc]

Thanks for the x-tra pill tip!
never thought of that and I am a dropper of all things!
this is why I love the comp.
joy

 

[SueM in MN]

WDW tends to avoid actual strobe lights or lights with consistent frequency of flashing (the kids of lights that are most likely to trigger seizures). Random lights like simulated lightning flashes or single flashes for pictures are not likely to trigger seizures, but I included them.
If anyone has any to add, please do.
This is a list of attractions I know of with light effects of some type:
MK

• Enchanted Tiki Room - periods of darkness with simulated lightning. The lightning is random and short.
• Pirates - some lightning flashes in the first dark part of the ride.
• Big Thunder Mountain Rail Road - there are no light effects in this attraction, but if you are riding on a sunny day, you will go in and out of dark tunnels repeatedly at high speed.
• Splash Mountain - on a sunny day, there are several places where you will go from dimly lit indoor areas to outdoor. The ride moves slowly, so the change is slow. There is a single bright flash when your picture is taken during the big drop.
• Haunted Mansion - almost at the end of the preshow, there is a flash of lightning at the top of the ceiling.
• Buzz Lightyear - just before the last room of the ride, there is a long narrow tunnel room with swirling red lights and flashing white lights. The swirling and flashing are not rhythmic.
• Stitch's Great Escape - Most of this attraction takes place in the dark, but there are some random light flashes at times (while looking for Stitch)
• Space Mountain - flashing lights

Epcot

• Spaceship Earth - the first part of the ride and the last part of the ride are dark, long and narrow.
  The entrance 'tunnel' has screens high on the wall, warning that your 'time capsule' will turn and descend at some point during the ride. The screens are bright compared to the walls.
  The exit tunnel has some lighting effects, but not flashes.
• Ellen's Energy adventure - includes a movie where parts are dark and then light suddenly appears (the 'Big Bang' theory of earth's creation)
• Mission Space - Includes a flash of light for a picture.
• Test Track - includes a light flash for a picture. Also, during ‘evasive maneuvers test’, your ride car will be in a dark area with bright truck lights suddenly appearing in front of you.
• Living with the Land - simulated thunderstorm. The first part of the attraction is dim; the second part is in a greenhouse, where the light can be a bit of a shock when you first enter. The ride boat moves slowly though.
• Soarin' - the end scene includes fireworks
• Journey into Your Imagination - Some flashes of light. One bright flash near the end where a picture used to be taken.
• El Rio del Tiempo (Mexico) - fiber optic fireworks in the ceiling and wall in the last scene
• Maelstrom (Norway) - near the beginning there is a spinning, pulsating light. It is irregularly pulsating
• American Adventure - the Chief Joseph sequence has a few stokes of lightning

Studio

• Star Tours - flashes of light during the attraction (you are in a space ship and end up in a spaceship fight)
• Voyage of the Little Mermaid - some flashing light, some twinkling lights and some pulsating blue lights above your head to simulate the top of the water. All are random
• Rock N Roller Coaster - one bright flash of light during picture taking
• Tower of Terror - one bright flash of light during picture taking. Elevator door opens suddenly to give a view of outdoors (so bright light on a sunny day). Some twinkling lights during the early part of the ride and I was too busy being scared and holding DD down to notice any more.

AK

• Festival of the Lion King - one act includes twirling flaming sticks
• Dinosaur - dark ride with sudden appearance of dinosaurs in front of you. Random flashes of light. One big flash as a picture is taken.
• Expedition Everest - includes some bright light effects

 

[stcyrs3]

I am new at this, but I wanted to thank everyone for giving the info on seizures. My DS who is 6 has had a total of 5 seizures since last August and is not on any meds. I have been making sure he gets enough rest and fluids, and so far it has been since April since the last seizure We are hoping for the best, that he has outgrown them. We are going to WDW in Nov., and I had questions about the rides that he wanted to go on. Also, just a quick question, his doctor said we could get a note before we went, so that we wouldn't have to wait in line to long. Is that true, do they do that for you?

Thank you.

 

[Cheshire Figment]

Hi and to both DisBoards and 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 #6 deals with the Guest Assistance Card which generally is useful for people with invisible disabilities (Not related to mobility or stamina). You might want to look at that, as well as other potions of the FAQ.

Note that the use of the GAC, and it is stated on the card itself, is not to reduce waiting time. And also tyhe people who issue the GAC (1) will not ask for any medical proof, and (2) may not even want to read the doctor's note.

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

 

[SueM in MN]

Just echoing what Cheshire Figment wrote.
A lot of doctors are quite misinformed about the Guest Assistance Card, so even though they mean well, they are not giving correct information.

 

[NayNay4Mickey]

Do any of the Cast Members stop people from going on rides becuase of Seizures, or is it left up to the discretion of the parent?

This is the first time going when my DS has been dx with seizures.

 

[SueM in MN]

Do any of the Cast Members stop people from going on rides becuase of Seizures, or is it left up to the discretion of the parent?

This is the first time going when my DS has been dx with seizures.

NO
There are no specific warnings to avoid any specific rides because of seizures.
WDW does put warnings on some attractions (mostly because they are very turbulent/rough). It's up to the rider to decide if the warning applies to them.

 

[NayNay4Mickey]

I think my DS is going to be okay. I just want to take all the steps I need to, to make sure our trip to WDW is magical. I am going to keep him hydrated and well rested. He just started 1st grade, and since then, he has been so tired. I think a well needed vacation will be good for both of us. We are getting there, only a few more weeks to get through. I am still new to this whole thing and trying to earn enought posts so I can PM hopefully soon.

Renee

 

[my3princes]

I'm glad to find this thread. My DS 12 has just started having seizures this week. The pediatric neurologist has given us a preliminary diagnosis of juvenile epilepsy. We have a WDW trip planned for July so I was eager to read how his diagnosis might effect him. We've been to WDW at least a dozen times and have never had issues, but seizures is very new to us. The doctor thinks that once he finishes tests and gets him on a med he should be able to do everything that he has in the past. We are certainly praying that the Doctor is correct, but we will also plan to bring something to cover his eyes. We do well keeping everyone hydrated and since he has a wheelchair for mobility issues he will certainly nap as needed anyway. It is amazing that one's life can change in the blink of an eye.

 

[SueM in MN]

I'm glad to find this thread. My DS 12 has just started having seizures this week. The pediatric neurologist has given us a preliminary diagnosis of juvenile epilepsy. We have a WDW trip planned for July so I was eager to read how his diagnosis might effect him. We've been to WDW at least a dozen times and have never had issues, but seizures is very new to us. The doctor thinks that once he finishes tests and gets him on a med he should be able to do everything that he has in the past. We are certainly praying that the Doctor is correct, but we will also plan to bring something to cover his eyes. We do well keeping everyone hydrated and since he has a wheelchair for mobility issues he will certainly nap as needed anyway. It is amazing that one's life can change in the blink of an eye.

I don't know if you found this thread from the link in the disABILITIES FAQs thread, but if you didn't, you may want to read this really good article from the Epilepsy Foundation about photosensitive seizures.
One of the things they recommend is covering one eye rather than both. If you cover both, you will still get the same stimulation to both eyes. By covering only one, each eye gets different stimulation, which tends to make a seizure less likely for someone with photosensitivity. You don't need to bring anything to cover the eye - a hand over the eye will do.

 

[my3princes]

I don't know if you found this thread from the link in the disABILITIES FAQs thread, but if you didn't, you may want to read this really good article from the Epilepsy Foundation about photosensitive seizures.
One of the things they recommend is covering one eye rather than both. If you cover both, you will still get the same stimulation to both eyes. By covering only one, each eye gets different stimulation, which tends to make a seizure less likely for someone with photosensitivity. You don't need to bring anything to cover the eye - a hand over the eye will do.

I did not know that. That is very valuable information. Thank you so much. We have his first EEG tomorrow and hopefully we can start meds on Wednesday. It's been a bumpy week with one Grand Mal seizure and lots of petite ones.

 

[SueM in MN]

You're welcome.
Hopefully, your doctor will be able to find a drug/combination that works well.

 

[csarenz]

I did not know that. That is very valuable information. Thank you so much. We have his first EEG tomorrow and hopefully we can start meds on Wednesday. It's been a bumpy week with one Grand Mal seizure and lots of petite ones.

Thank you for sharing. My DD had her first tonic-clonic at 13 months. She has been diagnosed with a generalized seizure disorder, so we've been on 5 meds (she's on depakote now) and had many EEGs, VEEGs, etc...(she just turned 4). It will be tough at times, but this is a great place to come just to talk.

I would like to thank everyone on this board, I haven't posted much here, but the information and support everyone has for each other is amazing.

 

[my3princes]

Wow, what a week. It turns out the my precious 12 year old has a brain tumor, not juvenile epilepsy. We are in the process of scheduling surgery and a praying for a great outcome. The tumor is effecting the language area of his brain and there is no way to tell pre surgery how much damage the removal can cause. If it is not removed it will continue to grow and will eventually be dehabilitating.

 

[pooch]

prayers for you and your family!!

DS was diagnosed w/epilepsy @ 6 yrs old (complex-partial seizures). Have never been so scared in my life. He had 8 that first year while they adjusted his Tegretol level. Since then (1997) he has only had 2, both when he didn't take his med when he was supposed to causing his level to drop too low. Although the Pediatric Neurologist originally thought he would grow out of it, its been almost 13 years and his EEGs are still abnormal enough that the, now, adult neurologist does not want to take a chance on weening him off the meds. Never came up with a cause although DH also has abnormal EEG but no symptons. We are truly lucky in that nothing seems to trigger a seizure except low med levels and he always carries some with him in case he's not home when its time for a dose.

Congratulations on your wedding and I hope you have a wonderful trip.

 

[SueM in MN]

Wow, what a week. It turns out the my precious 12 year old has a brain tumor, not juvenile epilepsy. We are in the process of scheduling surgery and a praying for a great outcome. The tumor is effecting the language area of his brain and there is no way to tell pre surgery how much damage the removal can cause. If it is not removed it will continue to grow and will eventually be dehabilitating.

So sorry to hear.
Hope things go well. It puts things in perspective when the first diagnosis that seemed bad is so much better than the present situation.

Prayers and pixie dust for yor family, your child and all his caregivers.

 

[Judy in Texas]

Test Track also has a section where they simulate the evasive manuever test. A truck comes in from the left and its lights always startle me. Perhaps have him sit on the right side and pay more attention to what's on the right side.

 

[Lachesis00]

I have both Grand Mal and Petite seizures. Becareful with the Depekote. It really messed up my gums It was great other then that!!
Mine are stress induced/major panick attack. I internal and sadly it ends up in seizures. As far as I know, I haven't had any on Tegretol.

I don't do rides, so I can't really comment on that part.