May or may not need DAS? (anyone with a child with dysautonomia?)

[BensWife]

My son is 8 years old and was diagnosed with dysautonomia in March of this year. His dysautonomia is on the mild side. There are a lot of different symptoms to this illness. Most people with this condition look completely normal, which makes things hard. My son's issues are all based on migraines. Basically, his autonomic system doesn't work well, and gravity causes his his blood to pool in his legs when he is standing/walking, taking it away from his brain, triggering headaches. He has had migraines all his life, even when he was a toddler and not really able to tell me how he was feeling, he would tell me, "Mommy, my brain hurts." He would go in cycles of not having very many migraines and just simple headaches to debilitating migraines with the full vomiting and needing to be in the dark and sleep it off. We went to WDW in 2013 (way before we even knew he had dysautonomia) and the trip was fine. No headaches and no problems at all, but at that time, he really wasn't having lots of migraines. But since then, his headaches have gotten worse. If we keep him fully hydrated (really, even overly hydrated with the use of Gatorade and salt pills), he does well. We had a great run this month of no headaches for 3 weeks! WooHoo!! The best we have done in 2 years!!! So, what I am worried about is really preventing the migraines. I am worried that if we stand in lines in the heat, I don't know how I am going to keep him fully hydrated in the hot Florida sun. It is hard enough keeping him drinking all the time here in Colorado. If we have a DAS, we can wait in air-conditioning or very shaded areas keeping him off his feet. We've only had his diagnosis since March of this year, so this is the first time I have even considered getting a DAS. We went to Disneyland in Sept of last year (before his diagnosis), and he did ok without the DAS then - but did end up with some mild headaches, but no full migraines. But, maybe Florida heat would be different. Are there ever times that they deny a DAS? Maybe he will be fine without the DAS. I mean, he was fine back in 2013 without the DAS and obviously he still had dysautonomia back then even though we didn't know about it. I would feel funny about asking for a DAS when he really looks like a healthy, normal 8 year old and may not even need it. I guess it is a gray area because the main reason we would get one is to prevent a migraine. Do you have any advice?

 

[DisneyOma]

To be honest, there is a lot more walking/standing outside of the queues than in a queue. How are you planning on handling 2-3+ miles a day in full sun? Most queues are shaded, lots have fans, some even have AC. The standard Disney response to standing/walking issues is to suggest the guest use a stroller, wheelchair, ECV, etc.

Hope you have a wonderful time, and your son stays migraine free! I've had two migraines at WDW, both arriving after being on a spinning ride. You may want to avoid Astro Orbitors and the carousel.

 

[CoriM48]

We also have to carefully watch hydration issues with one of my sons at WDW. Honestly, waiting in the lines is often our respite because they are often shaded and cooler. It's the moving within the park between rides that is killer for my son. We just force the water, often take little breaks in the gift shops or other cool places, and have our lunch in the family care room that is ultra air-conditioned. We rent him a special needs stroller with a canopy to reduce walking and give him more shade. We also go in the Winter, so the temps are lower. My son would never survive a summer trip to Florida!

Good luck!

 

[BensWife]

To be honest, there is a lot more walking/standing outside of the queues than in a queue. How are you planning on handling 2-3+ miles a day in full sun? Most queues are shaded, lots have fans, some even have AC. The standard Disney response to standing/walking issues is to suggest the guest use a stroller, wheelchair, ECV, etc.

Hope you have a wonderful time, and your son stays migraine free! I've had two migraines at WDW, both arriving after being on a spinning ride. You may want to avoid Astro Orbitors and the carousel.

Good point. I didn't even think about the miles of walking in the heat as well. Hmm. I wonder if we should try a wheelchair? Seems kinda extreme for a "maybe" it would help. I guess we can see how the first couple of days go, and if he doesn't get a headache then we won't have to do anything and if he does, then we can look into a wheelchair. Guess I am just worried and want him to have a good time.

 

[gap2368]

as other have said there is more walking out side the lines then in most lines are in the shade or inside. I do not think a DAS card will help you as much as you think. I would get a stroller as a wheel chair and get a fan that can clip on the hood of the stroller ( might help if keeping him cool helps) if you bring one from home that can recline he can be in a more lying down ( would that help him)