POTS Syndrome

[oberjen]

I hope someone out there can help me. In mid June my family and I will be visiting WDW. My DD(13) was recently diagnosed with POTS and is doing great (most of the time) since her doctors have put her on some medication and since she has undergone physical therapy. Her big problem is walking any kind of distance at all so we have decided to take her wheelchair which she will use between rides. I was wondering if anyone out there had any other suggestions for making the whole trip more enjoyable for her and our family as a whole.

We have been to WDW a couple of years ago (before POTS) and did the commando trip then so we are planning on taking things much easier this time.

Any suggestions would be much appreciated.

Wayne

 

[ttintagel]

I hope someone out there can help me. In mid June my family and I will be visiting WDW. My DD(13) was recently diagnosed with POTS and is doing great (most of the time) since her doctors have put her on some medication and since she has undergone physical therapy. Her big problem is walking any kind of distance at all so we have decided to take her wheelchair which she will use between rides. I was wondering if anyone out there had any other suggestions for making the whole trip more enjoyable for her and our family as a whole.

We have been to WDW a couple of years ago (before POTS) and did the commando trip then so we are planning on taking things much easier this time.

Any suggestions would be much appreciated.

Wayne

Although I don't know what POTS is, my guess would be that if walking is her only issue, the wheelchair pretty much covers it.

 

[Piper]

You will be able to take the wheelchair into most lines if you want to. If you want a lot of information, read the FAQs at the top of this board.

 

[Elinor Dashwood]

Your poor DD. POTS is a difficult condition to live with, I'm sorry she has to deal with it.

I find that staying hydrated is a huge key to my feeling well. I also eat salty foods to keep my bp up as well. Gatorade and coconut water are my beverages of choice.

I'd get her one of those mini fan water spritzer things. Also, Amazon sells these cooling towels called "chill-its" that are supposed to work well. I've not used them yet though.

Take breaks from the heat and duck into air conditioned rides and stores. Does she ever pass out or does she just get that horrible tachycardia?

 

[LuvtheMouse88]

I also suffer from POTS. I find that staying hydrated is the biggest thing. Thankfully over the past 2 years I have had minimal episodes.(Stress was a huge contributor and I changed where I was working. Not standing for hours at a time without sitting made the biggest difference.) I now only have to take my medicine prn. When going to Disney I always keep water with me. I don't hesitate to sit and take lots of breaks. I never had to have a wheelchair but depending on how long she can go without sitting I would think that is a good idea. Also you might try to keep a cool washcloth. I would always place it around my neck if I started feeling hot and flushed.

 

[goofieslonglostsis]

As with most, there is no one pots. So a lot will depend on the specific symptoms SHE experiences. Dealing with pots at WDW really isn't al that different from dealing with it as she would the other days of the year. Some general things you can think about;

- if symptomatic BP-drop by change from sitting to standing etc; use same tactic as is daily life. Slow down. No abrupt movements, but slower to give time to adjust.
- if temperature problems; same tactics as in daily life. Layering will help deal with temperature changes from inside to outside, different inside temps etc. Providing own shade, wearing thin layer of protective clothes and/or cooling clothes can help if heat is an issue.
- tachycardy issues? Knowing the triggers is a big thing. Translation than is pretty easy to do so she can figure out which rides can be a problem for her, when she might need to take a rest etc.
- hydration is a big thing for many issues, as is keeping a proper balance for sodium, potassium etcetc.

- what are coping strategies used in daily life and why? This translates as many times as needed. For instance when in a ride that turns around it's center, focussing on one fixed point helps some to reduce or avoid tachycardy or BP-drop. If she already knows this from doing so in a car when you turn, she can easily translate that to any ride making the same moves. Etc. etc.


If you don't mind me asking what is it that makes walking problematic? Mobility issues are not known to be part of pots. Obviously some symptoms can influence. However if indeed a "pure" mobility issue, it could be you don't have the full answer yet. POTS has a high prevelence to come along with some ilnesses or syndromes, which can come with mobility issues. So depending on the specific issues she has with walking, it might be there could be something else in play you aren't aware of as of now.

 

[WantToGoNow]

My daughter has POTS along with Nuerocardiogenic Syncope and PSVTs. For her walking is not the issue but the standing still in cues . She gets a GAC. She also has to drink a large amount is sports drinks . She has extremely low blood pressure with a very high heart rate. She had surgery in January to try to correct the PSVT which helped somewhat. Since she is an adult she will be renting a ECV for when she's not doing well and needs to sit.

Not to scare you but she and her best friend who also has POTS was denied boarding at the Orlando airport after the friend collapsed at the airport . It was a long journey to her them home which included a visit to urgent care and a private plane. Something about flying always affects my dd and the night after travel she is usually physically ill and totally exhausted.

 

[oberjen]

She was diagnosed a short while ago so we are still figuring things out. She has always suffered from dizziness when she first stands. She has compression hose which seems to help with the blood pressure. Standing for long periods still gives her fits. Walking short distances is not a big deal but walking for long periods exhausts her. We are planning on driving to WDW over 2 day so this could be interesting. Is there anything special that we need to tell the CM's for a GAC?

 

[cockermon]

Huuby has neurocardiogenic syncope which has similiar issues with low BP, fainting, etc. He now has pacemaker, on meds and drinks tons of water.

Sometimes he had "flare-ups" after flying. Now he wears some compression type socks- the kind you can buy at Under Armour. Lots of runners wear these.
They help to prevent blood pooling in lower legs. This seems to really help him.

 

[SueM in MN]

She was diagnosed a short while ago so we are still figuring things out. She has always suffered from dizziness when she first stands. She has compression hose which seems to help with the blood pressure. Standing for long periods still gives her fits. Walking short distances is not a big deal but walking for long periods exhausts her. We are planning on driving to WDW over 2 day so this could be interesting. Is there anything special that we need to tell the CM's for a GAC?

See post 6 of the disABILITIES FAQs thread for information about Guest Assistance Cards.

Given those issues you wrote here, her best bet would probably be to use a wheelchair. You don't need a GAC to use one in lines.

GACs don't shorten the distance walked in most cases and there are still a Significant number of attractions where she would need to stand for a period of time if she doesn't have a wheelchair. Those are listed in a post on page 2 of the disABILITIES FAQs thread. You can use the link in my signature to get to that thread or find it near the top of this board.

 

[Elinor Dashwood]

She was diagnosed a short while ago so we are still figuring things out. She has always suffered from dizziness when she first stands. She has compression hose which seems to help with the blood pressure. Standing for long periods still gives her fits. Walking short distances is not a big deal but walking for long periods exhausts her. We are planning on driving to WDW over 2 day so this could be interesting. Is there anything special that we need to tell the CM's for a GAC?

Oh, I'm so sorry! I understand the dizziness issues, if I stand for too long my bp drops and my heart races. Same problem if I get overheated which is why I'm so careful about staying hydrated. I'm sure you already know this, but make sure she gets up slowly out of her wheelchair at Disney. I have to remember while on vacation, that even though I'm excited, I still need to move slowly from sitting to standing. I hope you'll have a wonderful trip and that your DD especially does.