NCS/OI

[Mom2four85]

My youngest daughter (14) has been fainting and had arrhythmia's since she was 9, following my path.  I wasn't DX with NCS/OI until I was 42 so I'm really trying to make sure she doesn't suffer too many injuries like I did fainting over the years.

I thought maybe she had HCM like I do also, but testing shows no problems right now.  The dr wants to salt/water load her but I had no success with it and really don't want her on so much sodium at such a young age.

I can't remember what the ratio for water is? She's 5'7" and 100lbs soaking wet so 60oz of water seemed a bit much for her size.

Anyone have any suggestions or dr's who treat ANS issues in the Denver, CO area?

[jjgevf]

Wow, sounds like my daughter! She has fainting spells (started around age 6) and she's now 19. Passed out on the tilt table test and was told to increase salt and water. Her peditractian was worried about HCM because of the heart arrhythmia and passing out spells. She also sleeps all the time and has swelling of the legs and feet after she's on them a while. She's a little thing, only 5'3 and tiny. Just had a echo which showed 2 leaking valves. Nothing was said about HCM. I feel like we just get the run around and no answers. I have similar problems and was told I might have Dysautonomia?!?  I hope you get answers!

[JohnnyRocket244]

I know a lady that lives in Colorado Springs that might be able to help you. She has a support group for conditions like dysautonomia and POTS, and also has Nutcracker Syndrome and May-Thurner Syndrome. You can search her at Undiagnosed Warrior. She is a great person to talk to!!

[JohnnyRocket244]

I know a lady that lives in Colorado Springs that might be able to help you. She has a support group for conditions like dysautonomia and POTS, and also has Nutcracker Syndrome and May-Thurner Syndrome. You can search her at Undiagnosed Warrior. She is a great person to talk to!!