Disney with Postural Orthostatic Tachycardia Syndrome

[jodi526]

Hello!

I was wondering if anyone on the disABILITIES board has been to Disney with a POTS child. For those who'd like to know more, POTS is a form of dysautonomia and it is a disregulation of her blood vessels. My daughter is 6 and has trouble with heat (it can make her symptoms worse). We've planned a trip for October because we're hoping the heat will be less of an issue that it would in the summer. With POTS, she becomes fatigued and often has trouble standing or sitting for long periods of time. Her pediatrician suggested we go to Guest Relations about obtaining a card for lines of longer than 15 minutes. Is this a reasonable request? The doctor has actually written a very kind note to Disney, but we've never gone to GS before so I'm not sure what to expect. While a wheel chair might help with stamina, sitting can also cause her legs to become numb. I was wondering if maybe requesting a shady place to wait in line would work? Any advice is appreciated! Thank you for the help!

 

[Cheshire Figment]

Hi and to both DisBoards and disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. You might want to start with Post #6, which discusses the Guest Assitance Card which is what you will get from Guest Relations.

Or, if you want an easier route to the FAQs, click on the link in my signature.

 

[jodi526]

Thank you! I actually found this board through one of your helpful links elsewhere. Thanks again!

 

[luvdzny]

My 21 year old DD has POTS, Dysautonomia, Cyclic Vomiting Syndrome and a few other health issues, and she is a Disney World "veteran." Some of the things that help her are:

• Staying hydrated, Gatorade is best so we always have LOTS delivered to our resort, It has more sodium then the Powerade sold on Disney property
• Plenty of rest. We let her sleep in in the morning, and take ffequent rest breaks where it is cool.
• She has even had to rest in the first aid areas from time to time.

We have gone in October and in the heat of June, October is usually cooler so that should help. DD has a medi-port and does her own IV therapy at home so she increases her IV fluids in hot weather and when she is really active.
That is all I can think of for now. Good luck and have a great trip!

 

[jodi526]

Thank you for the response! Our daughter was diagnosed with POTS and CFS in the Spring of 2010 so we are still new to all of this. I have packed G2 and Propel and salty snacks to bring with us, but would you please tell me about having gatorade delivered to the hotel? How did you go about doing this (in case we run out)? Did your daughter have much trouble with the heat or standing/sitting in lines? Ours is so excited to go! Thanks again for the input!

 

[KPeveler]

Other than hydration and rest, my suggestion is to get a GAC to be able to use a stroller as a wheelchair, which means you will be able to bring it into all the lines for her, which should help. The Guest Assistance Card is not designed to shorten wait times, and Disney's policy for those with stamina or mobility concerns is to rent a wheelchair. A stroller with a canopy may be the best option for her. You can even rent one from an off-site company down there if you do not wish to fly with one.

I know a lot of POTSies, and I know avoiding exertion is important - so her being able to sit/lay down/relax would probably be the best option!

 

[jodi526]

Thanks for the response! I don't mind waiting in line -- I expect to at Disney -- I just want to make sure she is comfortable and able to enjoy as much as possible. At first she told me she is too old for strollers, but once I showed her the picture of the rental strollers on this board, she said she'd give them a try!

I appreciate all the responses. I still feel like a POTS and CFS newbie and find I have new questions about her diagnosis every day! It's comforting to me to hear about other "POTsies" (cute!) who are handling this and are Disney vets!

 

[jodi526]

Also...quick question. Can you reserve the park strollers before you arrive? She's too big for an umbrella stroller. Thanks again!

 

[SueM in MN]

Also...quick question. Can you reserve the park strollers before you arrive? She's too big for an umbrella stroller. Thanks again!

No, you can't reserve a park stroller before you arrive, but they are not likely to run out of them.

If you want to make sure she has a stroller and you need a larger one, there are some links post 2 of the disABILITIES FAQs thread for places that rent special needs strollers. With a stroller as a wheelchair, she can either stay in the stroller or stand up next to it.

WDW is very good about having lines shaded. At Animal Kingdom, the lines are all shaded, plus the outdoor ones have fans and in most cases, also have misters so you are sprayed with cool mist in line. I can truly say that you will have more trouble getting from place to place than you will have in line.

Also, at Epcot all the lines are inside of buildings, so you will almost always be in climate controlled areas during your whole wait.

We have also been to WDW many times in October and you will find the lines are much shorter than in the summer. You may also want to look into a touring plan like TourGuide Mike. Many people have noted that using it helped them to be in the least busy part of the least busy park and even in the heavier traffic months they seldom waited more than 10-15 minutes.

 

[jodi526]

Thank you! I'll look into Tour Guide Mike. You are all making me a feel a lot more at ease!

 

[Esmarelda42]

Hello,

I am a fellow "Potsy" , diagnosed 9 years ago and have made several disney trips. I lurked on this board all the time, but rarely post. I usually do OK walking around Disney I have the most trouble with the lines that do not move continually. If standing in the same spot blood begins to pool and I start getting sick.

Be sure to use fast pass on Toy Story Mania, Soarin, and the Safari. I have never looked into getting the GAC so I cannot comment on that. We try to stay at a monorail resort if we can get a good rate, otherwise we usually will drive to the parks. Standing in the long lines at the end of the night after fireworks waiting for the bus is extremely difficult. Also, you may not get a seat when the bus comes. When feeling bad a short monorail ride back to the room is helpful.

I usually drink the powerade in the parks and snack on salty pretzels. I also love my mister spray fan..it is a life saver in the heat. Some people use the cooling neck bandanas or cooling vests.

Be careful that she does not get overly tired. Keep her hydrated, nourished and rested and she will have a great time!
October should be a great time to go...cooler and shorter lines.

PS: check out the dinet and dynakids websites for lots of POTS info.

 

[jodi526]

Thanks for the response! I am glad we have made reservations at a monorail hotel. Esmerelda, do you ever have pooling issues with sitting for long periods? I think the stroller will be a good idea because she'll have time to walk and time to sit too. I'm a big fan of dynakids website - they've helped me to learn a lot about this!

 

[Esmarelda42]

Yes, I do get blood pooling while sitting as well. I cannot sit still for very long without getting very dizzy and feeling like I am going to pass out.
I also get pooling after eating a meal.

We try to take a break for sit down lunches. Sometimes I will be doing fine walking around, but then when we sit down to eat my circulation seems to shut down and my blood pressure crashes.

I think the stroller is a good idea. The Disney strollers are made so that their feet are out in front of them (I think) and not hanging down so that is just what she would need. When at home I keep my feet elevated most of the time....I feel so much better (less dizzy).

POTS is hereditary in my family...I am so worried my children will have it as well. It is so difficult for people to understand POTS when you don't have it. We look so healthy but yet feel so bad. I wish good days ahead for your daughter!!

 

[jodi526]

Thank you Esmarelda! I wish you a healthy future as well!

 

[visitingapril09]

Hello!

I was wondering if anyone on the disABILITIES board has been to Disney with a POTS child. For those who'd like to know more, POTS is a form of dysautonomia and it is a disregulation of her blood vessels. My daughter is 6 and has trouble with heat (it can make her symptoms worse). We've planned a trip for October because we're hoping the heat will be less of an issue that it would in the summer. With POTS, she becomes fatigued and often has trouble standing or sitting for long periods of time. Her pediatrician suggested we go to Guest Relations about obtaining a card for lines of longer than 15 minutes. Is this a reasonable request? The doctor has actually written a very kind note to Disney, but we've never gone to GS before so I'm not sure what to expect. While a wheel chair might help with stamina, sitting can also cause her legs to become numb. I was wondering if maybe requesting a shady place to wait in line would work? Any advice is appreciated! Thank you for the help!

Welcome. My son has a severe form of degenerative dysautonomia.

In terms of the docs letter about wait times no more than 15 minutes, there will be no way to make sure that your wait is never longer than a certain amount of time. There are times when the 'GAC' line is quite long. A couple of years ago, at Disneyland, we waited 1.5 hours in the GAC line for Small World. Fast passes would definately be a better way of doing the best you can to shorted your wait times.

 

[jodi526]

I'm sorry to hear of your son's diagnosis! I hope he is doing well. Thank you for the reply - I figured as much about the lines. We're going with what previous posters had mentioned and renting her a stroller and asking that she may use it in lines as well if needed. Take care!

 

[jodi526]

Oh, and I'll be sure to try for some fast passes! Thanks!

 

[visitingapril09]

I'm sorry to hear of your son's diagnosis! I hope he is doing well. Thank you for the reply - I figured as much about the lines. We're going with what previous posters had mentioned and renting her a stroller and asking that she may use it in lines as well if needed. Take care!

Definately using the stroller as a chair would be helpful, then maybe if it is longer than 15 minutes it will be easier for her.