First trip after epilepsy diagnosis

[ktmo]

We are heading down in two weeks to celebrate my oldest DD's birthday, her 11th. This will be our first trip since she was diagnosed with epilepsy (she had tonic clonic seizures). I have read as much as I can to help prepare. We plan to stay on her normal schedule as much as possible. I will make sure she stays hydrated and rested, as much as I can. I will make sure that I have her medication on me to make sure that she takes it at the right times.

She has responded well to her medication and her doctors are comfortable with us going. But, it seems like there are so many unknowns. Between her first seizure and her diagnosis/medication she went to a small amusement park and rode all the rides there without issue. Her doctor said that some of her patients have seizures, while others don't. I hate all the unknowns.

I don't know if we should try to go the DAS route, but I would hate to find out she needs it (by having a seizure while waiting in line). But, I don't want to get it if she doesn't need it.

Any words of wisdom? Or been there done that?

 

[aaarcher86]

Do you know what kinds of things trigger the seizures?

I haven't been to any other theme park with lines like Disney, so I wouldn't necessarily think she'd be fine just because she was somewhere else. If you know what kinds of things trigger a seizure, we could let you know what rides or lines that might include.

I personally think the FP lines are similar to the standby lines, so it may not be possible to avoid things all together. It's tough going in and not really being able to control anything.

Have a great trip!

 

[I Love Pluto]

Epilepsy has so many unknowns - that's what is so difficult. A ride, or lights, or lack of rest may cause a seizure today, but not tomorrow. It is hard to know exactly what to do, which becomes frustrating!

You seem to have a handle on it - stay hydrated, get rest, stick to a normal schedule. The remainder is your judgement at different rides & shows. Trust your instincts, you are probably correct.

I did not attend a lot of shows in the beginning. I even stayed off certain rides. I learned with each trip how much more I could do.

Rides - stay off coasters! You are helpless on a fast ride to get to her. Also - Tower of Terror & Soarin' are not wise. Some 3D shows - Mickey's Philharmagic is an example - are unable to be tolerated. It's Tough to Be a Bug and Muppet Vision are fine. Ask for a seat near an exit as you try each one.

Good luck to you! Your daughter is fortunate to have parents as thoughtful and concerned as you are!

 

[ktmo]

We don't know everything, but her seizures do not appear to be caused by light sensitivity. She had one seizure at school and another during her sleep deprived EEG, during the sleeping portion.

We plan on taking it easy and little by little. But I know that she will want to do everything. I hate that there may be things she can't do because of this.

 

[I Love Pluto]

One more rather important thing. Please don't (in front of her) focus on what she cannot do. Focus more on what she CAN do & how she is soooooo important & wonderful for not allowing seizures to control her life.

She will never forget how her family accepted her just the way she is - the same as without a seizure problem!

I would try a DAS. Some of the longer winding lines (such as on Seven Dwarfs Mine Train) may bother her. Why chance it?

When she gets tired - go to The Country Bears. The air conditioning is perfect & the show is the right length for a rest as well as a laugh!

 

[poprouge]

I suffer from severe migraines, and studies have shown a very close relation between the two conditions. Light sensitivity is a major issue for me. My best friend at Disney is a high-quality pair of sunglasses, even indoors. Although similar, I understand that our conditions are not exactly the same. I agree regarding the 3-d shows. I have an ability most times to feel an episode coming on, and i've noticed the 3d shows aren't my friends so avoid them if at all possible. Mid day breaks have been my lifesaver. I've gone and tried to push though, and it's always been disaster. Taking a break at lunch and resting at the hotel before returning for night activities has made a world of difference for me.

Good luck and most of all enjoy the vacation. :d

 

[ktmo]

Thanks for all of the advice. I think the hard thing is that she might not be able to do the things she did before. I don't know how to get around that. I try to spin it, but she knows. I wish she didn't like coasters, but she loves them.

We have always done afternoon breaks, so we will continue with that.

I will get her a good pair of sunglasses. That is a good idea.

 

[mamabunny]

Thanks for all of the advice. I think the hard thing is that she might not be able to do the things she did before. I don't know how to get around that. I try to spin it, but she knows. I wish she didn't like coasters, but she loves them...

So don't try to spin it. Instead, you can try to approach the trip like this:

"So... this trip, I think it would be great to do some new things that we have never done before, and maybe some of our favorites - some of them could be fun & cool, and some of them could be kind of grown-up! What do you think about becoming a Pirate Princess for a day* and then going on a Pirate Cruise to watch the fireworks over the castle**? What if we go to Morocco in Epcot, and get Mommy-daughter Henna tattoos***? (glitter optional, but soooooo recommended!) Let's do a Disney Springs day, and go check out the Lego Store, and have a fun lunch!"

String enough of those kinds of activities together (they don't all have to cost $$$ - these are just suggestions) and suddenly you have an itinerary that is full of fun, interesting things to do that allow you to make the memories you want, and let her pace herself on this first trip.

There's tons of ways to spend time at WDW without spending a lot of money - here are just a few that come to mind; I *know* we will be able to create a huge list for you, if you want!

- Pressed Pennies (and pressed quarters) machines are all over the place. See how many you can collect, just be sure to bring a roll or two of quarters and pennies from home! (Mini M&M tubes are wonderful for keeping all those pennies and quarters corralled)
- Hidden Mickey Safari. Yep, everyone loves them, and the premise is easy: 1 camera + 1 kid, who takes pictures of every hidden Mickey she can find. And they are *everywhere* at WDW (Makes for great scrapbooking material too!)
- Autographs! Buy (or make) a fun autograph book, and arm her with a fat Sharpie - and see how many characters you can "collect"
- Take a cruise: The boat ride from Disney Springs up the river to POFQ & POR is really nice, and you can have a little snack at one of the resorts, and then cruise back down the river to Disney Springs. (Especially great if she is a Tiana/Princess & The Frog fan)
- Lights Camera Action! Encourage her to shoot video that she can edit and create a movie (or YouTube) from to show friends and family. That alone could keep her occupied enough to not worry about what she is missing
- The Grand Resort Tour - an expanded version of the river cruise, you "visit" other resorts at WDW to see what they look like, and if your family would like to stay there some day.
- Pin trading: once you get started, it doesn't have to be super expensive, and CM's love to trade with kids!

Don't focus on what can't be done - instead, fill the gap - and enjoy every moment that you can!

(((hugs)))


* See: Pirates League in the Magic Kingdom
**See: Pirates and Pals Fireworks Voyage departs from Contemporary Hotel
Note: Suggested because Pirates are mean and tough. They can kick epilepsy in the... backdoor!
***See: Talented Henna Artists in the Morocco Pavilion at Epcot

 

[Bearshouse]

Don't forget that the first aid stations are wonderful. They are fully air conditioned, places to lay down and be quiet, and the nurses are also amazing. Also if her medication needs refrigerated have the pharmacy get you small bottles with the prescription on it and the first aid station will keep them cold for you. The beds in MK are usually "darkest", Epcot is a close second, DHS and AK only have a few beds but always super great to deal with.

Take it slow and have a great vacation!

 

[SueM in MN]

I don't know if you saw it, but there is a post about epilepsy in he 2nd page of the disABILITIES FAQs thread. You can find the thread near the top of this board or follow the link in my signature.

Just because someone has epilepsy does not mean their life needs to change. There may be nothing that she needs to avoid, especially if your doctor has not given you any guidance. So, you play it by ear and see what happens.

The biggest issues, as you already know, are becoming sleep deprived, becoming dehydrated, and getting off schedule with medications. We set timers on our phones for medication times - it's very easy to lose track of time. Other than those things, there are no universal things that all people with seizures have issues with.

As for requesting DAS, you would need to be able to explain issues you expect with waiting in the regular line - DAS basically allows waiting outside of the line.
Keep in mind that you can use your 3 pre-arranged Fastpasses, and once those are used,you can make Fastpasses on at a time.
If you are planning to skip the 'headliner roller coasters', you will find many things have short waits that won't be an issue.
If worse comes to worse and she has a seizure in line or in an attraction, there are wheelchairs available and they can get her to First Aid where she can rest.

 

[redberyl]

I'd check with her doctor before deciding to skip attractions. My daughter (and many other people I know) has seizures and is able to ride everything without any problems. If she's doing well on meds and the Dr clears it, I would give it a try

 

[Nevada Jen]

I'm not sure she really needs to skip the roller coasters unless a doctor told you that. My DD has seizures. Lots of them. Daily. And we never skip roller coasters. She has seizures on rolllercoasters. She is sitting down and strapped in. Its way less of a big deal than if she was sitting on the edge of a bench. How often does she have seizures now that she is on the meds? What do they look like and how long do they last now that she is on meds? I wouldn't change a thing except the things Sue mentioned. Hydration, sleep, meds on schedule. Do you have a rescue med if she has a big seizure? Having that available seemed to ease my anxiety some (although we literally never used it and it expires every year so we eventually stopped even filling the prescription). I am not making light of it but assuming the meds work reasonably well, Disney is an easy place to be with seizures. There is first aid nearby, she won't be alone, and she is generally in safe positions when she has a seizure. If she has lots of seizures, you might consider using a wheelchair. That way she has somewhere safe to sit if she does have a seizure and also to recover.
Don't be surprised if you do not get a DAS pass for just seizures. If it is happening and you are having to leave the line on rides multiple times, you can go back and try again to get the DAS.

 

[redberyl]

I agree with Nevada Jen, there really shouldn't be much you have to skip. I Would add, watch her like a hawk in the pool. A co-worker lost a child when she seized in a pool. She can swim, but don't take your eyes off her for a second.

 

[SueM in MN]

I agree with both Nevada Jan and redberyl.
My daughter has frequent seizures and has had them since she was 8 (she just had one a few minutes ago - her third big one his week). We've never been advised not to take her on anything. She loves thrill rides, but she can't go on them all - not because of her seizures, but because she has cerebral palsy and we either can't get her on (like Space Mountain or Splash Mountain) or don't think she would be safe because of her CP (like Rock N Roller Coaster or Expedition Everest).

Some her favorite rides are Test Track, Tower of Terror, Star Tours and Mission Space - not exactly tame rides.

 

[ktmo]

Thanks to everyone who has posted. We have talked with her doctor and she hasn't given any restrictions. She did say that some of her patients have had seizures due to roller coasters, but many others don't. But she didn't seem concerned with her going on roller coasters. I am glad to hear from others who have been able to ride the coasters. I plan on taking it slow and she how she does. But I would hate for her not get to go on anything.

I do have reminders on my phone for medication and I always have extra doses on me in case we are out when it is time.

I think that the new FP+ will work great for us. Being able to get additional fast passes on our phones, is probably all that we will need. And it will slow her down, so we can't do too much too quick.

 

[ktmo]

I agree with Nevada Jen, there really shouldn't be much you have to skip. I Would add, watch her like a hawk in the pool. A co-worker lost a child when she seized in a pool. She can swim, but don't take your eyes off her for a second.

Yes, I don't plan on taking my eyes off of her. We have a pool in our backyard and this will be the first summer dealing with that. I am always out there with them. But it does change things.

 

[ktmo]

I'm not sure she really needs to skip the roller coasters unless a doctor told you that. My DD has seizures. Lots of them. Daily. And we never skip roller coasters. She has seizures on rolllercoasters. She is sitting down and strapped in. Its way less of a big deal than if she was sitting on the edge of a bench. How often does she have seizures now that she is on the meds? What do they look like and how long do they last now that she is on meds? I wouldn't change a thing except the things Sue mentioned. Hydration, sleep, meds on schedule. Do you have a rescue med if she has a big seizure? Having that available seemed to ease my anxiety some (although we literally never used it and it expires every year so we eventually stopped even filling the prescription). I am not making light of it but assuming the meds work reasonably well, Disney is an easy place to be with seizures. There is first aid nearby, she won't be alone, and she is generally in safe positions when she has a seizure. If she has lots of seizures, you might consider using a wheelchair. That way she has somewhere safe to sit if she does have a seizure and also to recover.
Don't be surprised if you do not get a DAS pass for just seizures. If it is happening and you are having to leave the line on rides multiple times, you can go back and try again to get the DAS.

She is well controlled with her medication. She hasn't had a seizure since starting the medication, 7 months ago. Knock on wood.

I do plan on bringing her rescue medication. I will keep that in my backpack just in case.

We did talk about how we might get to see a different side of Disney, but that they have everything we need in case she does.

I am thinking that we probably don't need the DAS. Like you said, if we figure out we do need it, we can get it but, I won't plan on it.

 

[mac3mpc]

I've been to Disney three times since my diagnosis. I haven't had any issues, but I am well controlled with a VNS and medication.

My recommendations as mentioned before are keep her well rested, hydrated and on her medication schedule. I personally avoid any ride that I know has strobe lights or flashing lights. I don't feel it's worth the risk when there are so many other choices.

Please don't make her feel different because she has epilepsy. Let her know that she is a person living with epilepsy but epilepsy doesn't define who she is. It took me a little while after my diagnosis to make the decision that I wouldn't let it stop me from living my life on my terms. I take precautions and carry on.

Enjoy your trip!

 

[ktmo]

Thanks everyone for all of the advice. We just got back from a great trip. She did great. She didn't have any seizures and everything went pretty smoothly. The weather was perfect and we tried to stay out of the heat of the day. I made sure she stayed hydrated and took her medicine on time. She did everything, even all of the coasters.

It was a great time of year. We didn't really have to wait in many lines. The worst was waiting in the fast pass line for Indiana Jones. There was no shade. I guess we got there too early.

I was worried a lot, but I think that just comes along with being a mom. We talked about how we might get to see a different side of Disney if she did have a seizure. She has handled this whole diagnosis so well. That was part of the reason I planned the trip. I didn't want her to look back at this year and only see her diagnosis. I wanted her to have something special to remember.

 

[Nevada Jen]

Glad it went well. We are driving back from Disneyland right now. Not a single seizure! A record for us!