Autism and first time seizure at Disney

[sharadoc]

We are leaving for Disney next week and I am getting stressed. I want to be able to relax and enjoy the trip but I’m afraid I will be worrying constantly, waiting for something to happen. Any advice from others with epileptic children?

Yes, our son is 24 with autism and started seizures at 19. I always get nervous at the end of Buzz Lightyear in the tunnel. Otherwise we make sure he gets enough rest, takes his meds, and DH or I are always watching him. I'm never fully relaxed but I found that as long as I know how to react, I can have a good time.

 

[mamacass]

Thank you so much for all the support! 10 day trip and no seizures for my son! Such a relief. I did come home with pneumonia but that’s a different story.

 

[DisneyOma]

Thank you so much for all the support! 10 day trip and no seizures for my son! Such a relief. I did come home with pneumonia but that’s a different story.

I liked your post for the seizure-free experience, but boo-hoo on the pneumonia!

 

[mamabunny]

Thank you so much for all the support! 10 day trip and no seizures for my son! Such a relief. I did come home with pneumonia but that’s a different story.

Get well soon!

 

[Disney mac]

Reading this thread, I just have so my questions and thoughts. You all are inspiring right now. My son was just diagnosed last week with epilepsy after having his first seizure on mother’s day. Our doctor gave us a letter, which we didn’t even know was available and we are very hesitant to even ask for a DAS. We attend quite frequently over the past few years driving in from the Midwest, and are so new to this, we have no idea what/if will trigger another. I just would feel bad requesting a DAS if we don’t need it, but we don’t know. Any advice from anyone? Our heads are just spinning right now.

 

[gap2368]

Reading this thread, I just have so my questions and thoughts. You all are inspiring right now. My son was just diagnosed last week with epilepsy after having his first seizure on mother’s day. Our doctor gave us a letter, which we didn’t even know was available and we are very hesitant to even ask for a DAS. We attend quite frequently over the past few years driving in from the Midwest, and are so new to this, we have no idea what/if will trigger another. I just would feel bad requesting a DAS if we don’t need it, but we don’t know. Any advice from anyone? Our heads are just spinning right now.

I am so sorry that this happened to your son.

The DAS is to give people that can not wait in the stander line a place to wait out side the lines. It dose not get you on the rides faster The CM can not read dr notes. If you would like you can go to GR and talk to them about your concerns with the lines and ask them what they suggest.

 

[Disney mac]

I am so sorry that this happened to your son.

The DAS is to give people that can not wait in the stander line a place to wait out side the lines. It dose not get you on the rides faster The CM can not read dr notes. If you would like you can go to GR and talk to them about your concerns with the lines and ask them what they suggest.

Thank you. My 9 year old does not want to get on anything faster. He told me that it wasn’t fair and we wants to wait in line. I just am looking for a way to wait indoors not out in the heat. Thanks for your suggestion.
Have a great weekend.

 

[gap2368]

Thank you. My 9 year old does not want to get on anything faster. He told me that it wasn’t fair and we wants to wait in line. I just am looking for a way to wait indoors not out in the heat. Thanks for your suggestion.
Have a great weekend.

I would bring your concerns to the CM at GR. since you have gone before you know a little on what to exspect at Disney and hopefully your get a better idea of what he might need at Disney when you go

If the heat is your main concern I would also think about what you will do other then the ride lines it self ( and this is if you get the DAS) so like bring a fan with a mister a cooling towel A hat and so on

 

[lanejudy]

we wants to wait in line. I just am looking for a way to wait indoors not out in the heat.

Well...you either use the standby queue or the FP+ queue. There is no alternative waiting area provided. If you have a DAS you can choose to wait in a restaurant, shops, First Aid, restrooms or elsewhere before entering the FP queue -- but there is no specified indoor waiting area, even with a DAS. I recommend you request a DAS (the doctor's note is not needed and they will probably refuse to look at it). But also plan your FP+ with the rides and queues in mind - since you are familiar with WDW, choose to FP+ the attractions you most want that are also most likely to extend outdoors. And make good use of additional 4th, 5th, 6th FP+ as well.

I just would feel bad requesting a DAS if we don’t need it, but we don’t know.

You may find you don't need the DAS, but it doesn't hurt to request it and then not use it. You are not taking away from anyone else, there is no finite number of DAS given out each day.

Enjoy your vacation!

 

[Disney mac]

Thanks everyone. I appreciate the ideas. Like I said, our heads have been spinning in the last week. I have all of our fast passes planned before this all happened.
The doctors assure us that the rides “should” be ok as he loves Space Mountain. Has anyone had any experiences where a ride or attraction triggered anything in their child?

 

[DisneyOma]

Thank you. My 9 year old does not want to get on anything faster. He told me that it wasn’t fair and we wants to wait in line. I just am looking for a way to wait indoors not out in the heat. Thanks for your suggestion.
Have a great weekend.

Luckily, most of the queues are inside, under cover with fans, etc. What's going to be really hard are parades and outdoor shows.

 

[SueM in MN]

Thanks everyone. I appreciate the ideas. Like I said, our heads have been spinning in the last week. I have all of our fast passes planned before this all happened.
The doctors assure us that the rides “should” be ok as he loves Space Mountain. Has anyone had any experiences where a ride or attraction triggered anything in their child?

See my post on page one of this thread.
It has information about attractions with lights (but, be aware that the vast majority of people with epilepsy don’t have any issues with lights).

The biggest things to be aware of are not getting dehydrated, not getting sleep deprived and taking medications on time.

My youngest daughter has poorly controlled epilepsy and has had seizures at WDW, but they were not in response to any attraction. She is not ambulatory and has her own wheelchair, so we don’t need to worry about moving her after a seizure. Attractions do have wheelchairs in case of unexpected needs and they can call for medical help if needed.
There is a First Aid station with rooms/cots for people to rest in each park. We use a First Aid quite often for various reasons. It is free of charge and we have found the staff to be very helpful and nice.

As far as DAS - many people think of it as kind of like insurance. You don’t need to use it, but it’s there in case you do.

 

[ladyjubilee]

I agree that DAS doesn't get you through lines faster. However, I suggest talking to Guest Services and being clear with CM about not being able to withstand the direct heat. CM can be more creative than I think we realize once they are made aware of an issue. My son also has issues with heat (he collapses or has events). They have been able to help us not wait in the direct heat, even during peak times.

But I also recommend having a plan. We always try plan around the shade, and hit sunny areas before or after the heat. We walk through the shops. We have cooling clothes, drinking cups that stay cool. Use a stroller with shade and umbrellas. Have all kinds of fans, misters and ice bags. Everyone in our group knows that keeping him cool is a priority, so when we have to move we move.

 

[kristensideaoffun]

Reading this thread, I just have so my questions and thoughts. You all are inspiring right now. My son was just diagnosed last week with epilepsy after having his first seizure on mother’s day. Our doctor gave us a letter, which we didn’t even know was available and we are very hesitant to even ask for a DAS. We attend quite frequently over the past few years driving in from the Midwest, and are so new to this, we have no idea what/if will trigger another. I just would feel bad requesting a DAS if we don’t need it, but we don’t know. Any advice from anyone? Our heads are just spinning right now.

My daughter has epilepsy but hasn’t had a seizure in over 4 years. We always get the DAS, but we don’t always use it. The DAS allows you to get a return time for a ride so you can wait in an alternative area. Your wait will be the same amount of time that people in the standby line have to wait. We have season passes to Disneyland and only use the DAS on hot days or days when standby lines for her favorite rides are over 30 minutes. Excitement, stress, and anxiety lower the seizure threshold for anyone with epilepsy, and standing in a really long line with a build-up of excitement leads to our daughter becoming anxious which we learned (when her seizures weren’t well controlled) causes her to have auras and eventually, if we do take preventative measures, a seizure.

I am guessing your son probably had an EEG and that’s how he was diagnosed with epilepsy. The EEG should have indicated whether or not he is photosensitive (sensitive to strobes and flashing lights). When you get to the park, head to guest services. They will be able to give you a list of rides that you should avoid if he is photosensitive.

Guest services will also be able to circle areas on the map that are quiet and cool - great alternative places to wait for rides.

A doctor’s note probably won’t help, and it’s likely the cast member won’t read it. The last two times I have gone to guest services, I told the CMs that my daughter has epilepsy and both times they told me that is all they needed to know and immediately gave us the DAS. Prior to that, they asked what concerns we had and I explained our issues with lines and heat, and they presented us with options for accommodations to address those concerns.

The biggest advice I can give you is to plan ahead and not stress out once you are there. You’re going to have to take things slower than you normally would. You’re going to have to rest way more throughout the day than you normally would. If you plan ahead, you can lower your stress levels while you are there. Plan to see a show while you are waiting for a ride. Have lunch in an air conditioned restaurant while you are waiting for another one. Disney is doable and can still be fun.

 

[Daisy de la Cruz]

There is a new to me, very bright, in the dark photo flash off of the last portrait at the beginning of the Haunted Mansion hallway once you are on the ride. I didn't notice any notifications that strobes would be used in the attraction (nothing has really changed other than the lightning flashes in the stretching room). This one is definitely much brighter however.

 

[DisSurfer878]

So let's see.
I was DX'd at 9, but had been experiencing symptoms for about a year and had my first seizure at 8.
We traveled to DLand CA with my seizure disorder (medication and all) 3-10 times a year every year.
Never had a DAS or GAC for it.
I can't ride Space Mountain, Soarin', or something else I can't remmeber. Epilepsy gave me severe sensory issues, so Soarin' and me are no longer friends. Anything with strobbing or flashing lights or that mainly relied on lighting affects was out. Couldn't find Alice for years. We drank lots of water, took lots of breaks. We couldn't go when it was hot as extreme heat triggered an epileptic attack on 3 separate occasions.
I've been seizure free for 11 years this year, and off my medication for 9. I still have severe sensory issues and pretty bad anxiety/PTSD, but I was anxious of crowds before I had epilepsy. I had minor sensory issues before too but the epilepsy made everyting so much worse.
What are you looking for exactly?

 

[DisneyOma]

. Our doctor gave us a letter, which we didn’t even know was available and we are very hesitant to even ask for a DAS.

The doctor's letter really isn't needed - they may not even look at it at Guest Relations. Not sure what the doctor put in it, but he has no say about what goes on at WDW

 

[Daisy de la Cruz]

The doctor's letter really isn't needed - they may not even look at it at Guest Relations. Not sure what the doctor put in it, but he has no say about what goes on at WDW

The reason I have a letter from my dr is not for the cast members at Guest Services but in the unfortunate event that something were to happen to me at the park without my caregiver present. In the letter lists my medication, my doctor information, directions on how to use my rescue medicine and to not transport unless a seizure last 5 minutes. Also it contains my caregiver information. I travel alone often and carry this with me in my handbag along w wearing a device bracelet that says Medical information in wallet.

 

[DisneyOma]

The reason I have a letter from my dr is not for the cast members at Guest Services but in the unfortunate event that something were to happen to me at the park without my caregiver present. In the letter lists my medication, my doctor information, directions on how to use my rescue medicine and to not transport unless a seizure last 5 minutes. Also it contains my caregiver information. I travel alone often and carry this with me in my handbag along w wearing a device bracelet that says Medical information in wallet.

That's a good idea. The PP I quoted said the doctor gave her a letter about her son "My son was just diagnosed last week with epilepsy after having his first seizure on mother’s day. Our doctor gave us a letter, which we didn’t even know was available and we are very hesitant to even ask for a DAS." From the phrasing of the sentence I quoted, it makes it sound like the letter has something to so with getting the DAS. That's what I was trying to explain-no doctor's note necessary, because they have no say in the matter. They don't run Disneyworld They can't say "this person needs front of the line access because..." as the doctor does not have that power (even though some think they do).

 

[Daisy de la Cruz]

That's a good idea. The PP I quoted said the doctor gave her a letter about her son "My son was just diagnosed last week with epilepsy after having his first seizure on mother’s day. Our doctor gave us a letter, which we didn’t even know was available and we are very hesitant to even ask for a DAS." From the phrasing of the sentence I quoted, it makes it sound like the letter has something to so with getting the DAS. That's what I was trying to explain-no doctor's note necessary, because they have no say in the matter. They don't run Disneyworld They can't say "this person needs front of the line access because..." as the doctor does not have that power (even though some think they do).

Yeaaaah, I highly doubt my epileptologist would include in the letter “and let her have disability access because I said so”. Ha!