Tips for Teen with EDS, POTS, and spinal fusion

[Frequent Flyer]

My 15 y/o DD has EDS (joint hyper-mobility type), and POTS, in addition to being 2 years spinal fusion post-op for scoliosis. I am gathering all the info I can for our upcoming trip. Other than wearing a knee brace for frequent subluxations, she doesn't have a ton of limitations in her daily life. Her normal concerns are not walking too far, not standing too long, and avoiding heat. Even attending a full day at school can take a lot out of her so I know WDW is going to be quite a challenge. Here are my plans so far:

• We are going in mid/late January to try and avoid the highest crowds and temps.
• I know we need to pace ourselves and not overdo it. We also have a toddler so we will take breaks as needed.
• The normal things she needs: ice packs, salty snacks, lots of water and electrolytes.
• From the threads I have read, I'm thinking a wheelchair may be the way to go. I want to avoid fatigue as much as possible.

Any other tips we should consider?

 

[gap2368]

Yes 100% on. Wheelchair for her I know she does not need on in everyday life but there will be a lot of walking standing at Disney. You are going at a really good time for cooler weather I would get a very small umbrella for her to keep her in the shade when going from attractions to attraration or for waiting for the parade. She can also stop in first aid for a rest if need be

 

[mamabunny]

@gap2368 really covered it all - the only thing I would add is to make sure that she wears lighter colored clothing; even though it will be January, the sun can be quite warm (and you CAN get sunburned). In January it's best to plan for layers - as the sun goes down, it will get cooler (especially on/near the water).

If she is sitting in a wheelchair all day, remember that any exposed skin (think about the top of her head, her shoulders, arms, knees, tops of her feet) will need sunscreen to prevent burning.

And take along an inexpensive pair of bike gloves from Wal-Mart or Target to protect the pusher's hands from blisters. Some wheelchairs have the old hard, shiny black plastic grips and it doesn't take long for blisters to form. Unless she is used to self-propelling at home on a regular basis, someone will need to push her.

 

[Frequent Flyer]

And take along an inexpensive pair of bike gloves from Wal-Mart or Target to protect the pusher's hands from blisters. Some wheelchairs have the old hard, shiny black plastic grips and it doesn't take long for blisters to form.

This never would have crossed my mind. I thank you, my hands thank you, and my DH's hands thank you!! :)

 

[gap2368]

This never would have crossed my mind. I thank you, my hands thank you, and my DH's hands thank you!! :)

I know people that gloves causes blister so be careful either way

 

[StilAPrincessAtHeart]

I too have EDS and Dysautonomia (Not exactly POTS, but similar issues). Cooling towels are super helpful for me. Even in January you could have a day or even a couple of hours of really hot at Disney, so I’d bring some just in case. Also a great pair of supportive tennis shoes, even if she will be pushed in a wheelchair part of the time. All that walking really adds up, esp for an EDSer. And as stated by others, rest at the first aid if necessary. I know for my dysautonomia sometimes just sitting is not enough to relieve my symptoms, but laying down for 10 minutes in a cool place can mean making it through another few hrs!!

 

[yesdnil]

I also have POTS, and in addition to some of the tips mentioned (highly recommend a wheelchair!), I'd pack Gatorade packets rather than actual bottles of Gatorade, then just mix it in a water bottle as needed. Might also be worth it to throw in a few salt packets in case she needs a quick salt fix (mixing them in with a Gatorade packet in a bottle of water). I found it really hard to find salt there when I needed it last time.

 

[tobikaye]

• We are going in mid/late January to try and avoid the highest crowds and temps.
• I know we need to pace ourselves and not overdo it. We also have a toddler so we will take breaks as needed.
• The normal things she needs: ice packs, salty snacks, lots of water and electrolytes.
• From the threads I have read, I'm thinking a wheelchair may be the way to go. I want to avoid fatigue as much as possible.

Any other tips we should consider?

I was in WDW 1/20/18-1/27/18 and it was much busier than January 2017 and slightly busier than early June 2017. As others have indicated, January temperatures can vary greatly. In 2017, it was chilly in the mornings and warmed up in the afternoons, but still was mostly in the high 60s or low 70s. In 2018, I rarely needed a jacket morning or night and the afternoon highs tended to hit mid to high 70s with a few 80s.

I would definitely take a snack bag of needed items and maybe some empty plastic bags. You can ask for a cup of ice at QS locations and fill the bags as needed.

 

[Cuddlemama]

My 18 year old with dysautonomia, POTS and frequent subluxations (no ED diagnosis, congenital hypermobility NOS and autoimmune disorder NOS at this point) found that a Rollator worked nicely for her last trip, in lieu of a wheelchair. She liked the freedom of being able to walk while leaning, sit on the rollator like a chair whenever needed and also sometimes sit on it and wheel herself as though it was a chair...that was how she got through the line at Test Track and Flight of Passage a few times. She has good days and crap days, so she owns her lovely purple walker and uses it here at home. It also carries things she needs and is easily decorated. She loves that thing almost as much as she loves her car.

 

[BethCPTSD]

I have POTS along with many other disabilities and use a wheelchair full-time. I would also recommend compression stockings. While they're usually useful anyway with POTS, I also experienced edema in my legs during my first trip due to the humid air, sitting for such long periods in the heat, and high intake of salt for POTS purposes.

 

[mindy lou]

My 11 year old DS has EDS (H). During our last trip he was recovering from a broken and dislocated (several times) shoulder , a high ankle sprain and had post concussion syndrome. Renting a wheelchair offsite saved our trip!!! There is so much walking everywhere, and at the end of the day he never would have made it to our room without it. He doesn't use a wheelchair in daily life and DH had been reluctant to get one in advance but it seriously saved our trip (renting off site also allowed us to get a smaller wheelchair , more size appropriate). DS was still able to walk when he felt like it (or push the chair) but had the chair when he needed it. It also helped protect his joints (especially the injured ones) because he wasn't getting bumped into etc.

We brought our own instant ice packs but used first aid several times when we ran out. They were wonderful! A great, cool place to rest, get ice or extra meds as needed.

 

[stsomewhere]

My daughter (17) has POTS, EDS and a lot of comorbidities. We find that if we let her sleep in and get to the parks around 11-12 works well. We schedule a table service meal around 330pm to get out of the heat. We take it at a slower pace and are open to doing different things. I did get her to use a wheelchair the last day of our trip. We stop for frequent small meals and snacks.