Teenager with POTS

I told my daughter I would post to see if anyone has any suggestions.
She has a definite "hidden disability" with POTS which falls under dysautonomia. She has good days and bad. Definitely better now that she is on the right meds and therapies. She attends martial arts and is in the marching band but they are all aware of what to watch for. Her biggest problem is heat and standing still in an upright position too long.
I am also concerned about her riding anything that throws off her equilibrium too much but we have been to Disney many times before she got sick so she knows the ropes.
We discussed what she might do if she suddenly feels sick. Worst case scenario is her passing out but she hasn't done that in a couple of years. She will be traveling with the Marching Band this spring break. We will be there too but staying separately and not right with her.
We are wondering about the appropriateness of her having a GAC for "just in case" or if she could wait to get one if she needs it but then I'm afraid it might be too late. I know this is ultimately our decision but any suggestions would be helpful. Thank you :mickey:

I guess the question on the GAC would be what would you hope it would do for you? You don't really stand still much in the lines at Disney, they move along, and the GAC isn't a "front of the line" pass. What it might do is allow her to wait in a different area that might not be as hot, but sometimes you have to stand around more there. Spring break time also usually isn't too hot so hopefully that won't be an issue for her.

I would honestly still get an alternate entrance area GAC - our son does not have HOPS but what he does have can result in syncope. We keep our GAC now so just give the one from year before or I could spell out exactly what they are called.

My vote is get the thing. Better to have and not use than need it and not have.

I would say get the pass. Just in case. She will be with her friends and might not even need it, but just in case she does its better to have it then have to go in the middle of the day to get one. :mickey: It's not going to put her at the front of the line,but it will move her through faster it serves as a fast pass on most rides.

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Originally Posted by minnie04

I would say get the pass. Just in case. She will be with her friends and might not even need it, but just in case she does its better to have it then have to go in the middle of the day to get one. :mickey: It's not going to put her at the front of the line,but it will move her through faster it serves as a fast pass on most rides.

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:thumbsup: I agree you're better off being more safe than sorry

I would get one for two reasons. First, she'll have it if she needs it (weather she is with you or with friends). Second, if something does happen she will have it on her and people will be aware of the situation instead of treating it like a new event and the panic that involves. Imho.

I am so glad that you posted this question! My daughter also has POTS and most people look at me like I have 4 eyes when I mention it to them. I'm interested to see what others recommend about the GAC because we've been debating whether to get it when she goes in April and we when visit in June. Hope your daughter has a great year!

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Originally Posted by pookiebear38

I am so glad that you posted this question! My daughter also has POTS and most people look at me like I have 4 eyes when I mention it to them. I'm interested to see what others recommend about the GAC because we've been debating whether to get it when she goes in April and we when visit in June. Hope your daughter has a great year!

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Thanks for all the input. It is helping us in our discussion. We've decided its good to have just in case. She would rather not miss many of the fun ques. However she is also aware it's not a front of the line pass. I'm always grateful when I hear from others dealing with this. I sure know the feeling of being looked at as though I have to heads! Those that minimize her illness or think she is faking. Hope you have found some of the FB support groups. Pm me if you need some names. :thumbsup:

I too would say get the GAC to have just in case. I also assume that the band chaperones and her close friends are aware of her situation and know what to do to help mitigate the possibility of any issues happening. Teens especially may not say they are not feeling well or ask for help until it is too late. Always good to have other eyes to help us out.

I agree get the pass. I suffer from pots due to Lyme disease and this pass has helped because in some attractions I can sit in an alternative wait area. Good luck and I hope you have a wonderful trip

I haven't checked back in quite awhile but wanted to thank those who responded. We are three weeks out and making lists/checking them twice for what she needs. Found lots of info on those that use the camelbaks for hydration. I'm more worried about her at Universal as they are going there for a day and we are too at the end of our trip. Being a teen, no matter what illness you have, you just want to be normal and tend to push it. She will have friends/chaperones that are aware and we will be just a phone call away. I'm having trouble finding info on Universal thread about disabilities. Their pamphlet only list info on blind/deaf, wheelchairs and O2. Can anyone direct me? Thanks again!