So Now I Wonder If My Severely Disabled Daughter Also Has Pots?

[babettess]

Well my darling husband asked me the other day, "Do you think Daughter #1 ( severely mentally retarded, Cerebral Palsy, seizures,Etc. Etc. Etc.) could have POTS?" All of a sudden it hit me that she could!! The whole time we have been focused on my youngest daughter (Daughter#3, just graduated, dx with POTS in March 09) and my own POTS when daughter #1 could have had it the whole time and we didn't pick up on it because of her other disabilities. I am not sure how to proceed with having her tested or whether I should just try some extra salt, water and compression (which she has already has been prescribed) and see what happens. Some how I can't see her getting through an actual TTT. Well, actually I can see her doing a TTT as she would think it was a carnival in the beginning. I just don't know if she could physically keep her balance and handle being restrained. I'm going to do a "poor man's tilt table" myself and see what happens. If her heart rate increases like mine and daughter #3's does I think I we will have a good idea that she has it too.

Life just gets funner and funner!! The good news is I still have one daughter(Daughter #2, College cheerleader) unaffected at this point.

Just wondering if anyone knows someone with significant disabilities and POTS and if the doctors were able to diagnose/treat them without much input from them??

Thank,

Babette

[flop]

Hi Babette,

if you can do a poor mans tilt test it should give you a pretty good idea if your eldest daughter has POTS too. Sometimes an official diagnosis isn't the most important thing. If your home test shows a rise in heart rate then, after talking to her doctor, trying some of the basic fluid, salt, compression treatments may make her feel a bit better.

Flop

[summer]

Hi Babette,

First of all I wanted to say that I can relate to where you are as far as wondering about your children and POTS. I also have children that I am watching closely because of their ages, and can see signs in one daughter that are frightening familiar to me.

I also have a son with a disability and understand the difficulty in knowing how and when to pursue medical testing, which can be tramatic for anyone, but especially for a person who is not able to truely understand the purpose of the testing, and may be frightened by the proceedure. My son is very frightened of medical testing, and in my situation, I avoid this for him unless I feel he will really benefit from it at that time.

I tend to agree with Flop. That an official diagnosis might not be the most important thing. Since there are some safe, non-pharmacuetical ways to treat POTS, I would try these for her and see if they seem to help.

Just wondering, What signs and symptoms have you noticed in your daughter?

Summer