How will new epilepsy dx change WDW plans?

[ireland_nicole]

Hi; I know I post here too much, but believe it or not, we have a new, exciting dx for DD. Just got out of the hospital last night w/ brand spanking new epilepsy dx. The eeg's show that she's not photosensitive, so we shouldn't have to worry about the lighting changes, strobes, etc. And she said it's extremely important to keep DD on her normal sleep schedule, b/c lack of sleep will cause her to have seizures. Also avoid overheating (no problem in sept ) and use a stroller (although we would anyway b/c of the ASD and bipolar) but ya'll know Disney- is there anything else we should know, be aware of, etc.? Also, if ya'll have any good general info, would appreciate it. If it's really ot feel free to pm me; this is completely new for us, so all help is appreciated immensly.
Thanks
Nicole

 

[mechurchlady]

Make sure you have one watch set to your time zone. Normally that one hour difference wont matter but for some people it does.

Don't underestimate overheating at the parks in September. My last trip was in September and I froze and got chilled from being soaked in a drizzly little rain shower. Another day I was very hot and the humidity got to me. Have you thought about naps or midday siesta? I find setting here at the computer that my back builds up heat and if I have a pillow on my lap then i am a toasted struedel, lol.

 

[SueM in MN]

If you go to the disABILITIES FAQs thread, there are some links to past threads in post #3. There is one with hints about epilepsy.

I would just re-interate what your child's doctor said, which is basically the same advice that my DD's neurologist gave to us. All those things can lower the seizure threshold, which is basically how much it 'takes' to trigger a seizure to occur. Lowering the seizure threshold doesn't actually mean one will happen and for most people, just one thing won't trigger a seizure. It's more like a house of cards; with each new card you add, there is more potential for the cards to tumble.

• try to avoid extreme overheating
• stay hydrated (water is best, sugary drinks like pop and drinks with caffeine like coffee or some teas can dehydrate you even though you are drinking liquids).
• avoid getting overtired (not necessarily walking a lot; more lack of sleep - it is actually possible to trigger a seizure in someone without epilepsy by severely depriving them of sleep).
• take medication on time. Setting an alarm is a good idea because it always seems to us that time is different in WDW and all of a sudden, we're late for DD's medication.
• don't take the whole bottle of medication with you to the park, but do take a few extra pills in case something happens (drop one, etc)
• even if you only plan to be in the park for one dose of medication, take the next dose with you too in case you end up staying later than you intended.
• because you are out of your familiar schedule, it's easy to forget whether or not a dose has been taken. To avoid that, we have 2 individual dose containers that I put DD's medications in every morning. If the middle of the day dose is still in there a few hours after it should have been taken, I know we forgot it.
• if she ends up having a seizure, First Aid is a great place to rest. They have cots in a quiet, cool, dim place. If you need assistance getting there, ask a CM and they can help you.
• And, my last piece of advice is to not live your life holding your breathe, waiting for something to happen.

 

[ireland_nicole]

Thanks ladies; I really appreciate the advice, and will be taking it. Although, Sue, that last part is awfully difficult to put into practice. Thanks, ya'll.

 

[SueM in MN]

Thanks ladies; I really appreciate the advice, and will be taking it. Although, Sue, that last part is awfully difficult to put into practice. Thanks, ya'll.

Oh, yeah.
I totally get that. A lot of breath holding goes on in out house.

 

[SueM in MN]

Thanks ladies; I really appreciate the advice, and will be taking it. Although, Sue, that last part is awfully difficult to put into practice. Thanks, ya'll.

Oh, yeah.
I totally get that. A lot of breath holding goes on in out house.

 

[disneywithfive]

My daughter was dx with a rare form of epilepsy in November and I had huge reservation about going on our disney trip due to the heat/etc. We went mid June and it was VERY VERY HOT!!!!!

Several things I did to help with the heat were to take a battery powered fan - not just a little one but a good sized one. It fit well under the stroller seat when we weren't using it so it wasn't hard to carry. Got it at Walmart and it took SEVERAL D batteries. Also, I found a rag (like the rags that are used to wipe water off of the car) at Target and kept it wet to place on her legs that were exposed to the sun and around her shoulders. At one point, she complained about being cold so I know that it worked. We also tried to stay in the a/c as much as possible plus we used the fastpasses for the first time since going to Disney and were amazed that we didn't have to stand in line very long. We also took an individual thermos and packed it with only ice. As it melted, it provided her a really cold drink. It was a lot of work but it was so worth it. There were several times, though, that we had to go back to the room as it was just to hot and we really needed some quiet time to rest.

 

[ireland_nicole]

I'm kicking myself right now, too b/c we had planned on staying at the POLY if we got free dining (which we did ) but then I had to go and get fiscally responsible and save the $$; between potential storms and having to spend more time at the resort than anticipated, I'm rrreeeaaalllyyy wishing we were staying on the monorail ... I really like the chamois idea, though- Thanks!

 

[minkydog]

Hi; I know I post here too much, but believe it or not, we have a new, exciting dx for DD. Just got out of the hospital last night w/ brand spanking new epilepsy dx.

I know, just what you didn't need. My son developed epilepsy when he was about 8yo and its been up & down for us. Most of the time he's in pretty good control, unless he's in a growth spurt. Puberty has been a little difficult, epilepsy-wise, but he's doing okay.

Christian isn't sensitive to light either, so just about anything goes at Disney World. But if he gets over-tired you can count on him having a seizure late that night. He's never had a seizure out in public. But he's had some doozies at home! We carry Diastat(rectal valium, for stopping prolonged seizures) any time we go out of town.

My heart goes out to you. I've been a pediatric nurse for about 31 years--I've seen probably 1000s of seizures. But I never get used to seeing my own child in the grip of epilepsy. Thankfully, there are a lot of very good meds out there. It may take some time to find the right drug and the right dose, but you'll get there.