POTS and how to get help

[POTSMother]

My daughter has been suffering for several years and we have seen specialist after specialist all saying she is fine but she is SICK!  She has purple cold feet upon standing, rapid heart beat upon standing, digestive problems, sleep problems, no energy, etc. etc....it is debilitating. We have recently read about POTS but she is afraid to be turned away by yet another doctor. I was with her when she saw the gastro specialist...he yelled at her and told her he has done the colonoscopy and endoscopy and there is nothing wrong so now she will get better.  She left crying and saying she'd never see another doctor again.

I am convinced it is POTS - she is very tall (5' 11.5", an over-achiever, slight mitral valve prolapse, rheumatologist sent her to a geneticist because she is so tall and has very flexible joints, cardiologist looked at her purple feet and said she was a heart doctor not a foot doctor).

Does anyone know of a doctor/specialist in Edmonton, Alberta, who is familiar with this disease or how do you go about finding a doctor who is familiar with POTS?  I can't take the chance of taking her to another doctor who makes her feel it is in her head.  She can't take much more.

Thank you so much!

[susan178]

Welcome to POTS motherhood.  My daughter has suffered through 4 years of being told she was nuerotic until we finally saw Dr. Richer, a pediatric nuerologist who informed us she had POTS.  After a year of Fluodrocortisone to raise her Blood pressure her symptoms are more manageable but she still suffers.  He works out of the Stollery and Grey Nuns. We were referred by her pediatriciian and the Stollery emergency room doctor when we brought her in with a concussion from fainting for the 3rd time in a week.  I am interested in starting a support group in Edmonton for moms to help deal and share info.

[CCFHeartMD16]

POTS (postural orthostatic tachycardia syndrome) is a problem where your heart rate becomes severely elevated and stays elevated when you change position from sitting to standing. It is a difficult diagnosis to make, and would be best evaluated by a cardiologist (or less commonly a neurologist) who specifically has a focus or interest in syncope. There are very specific tests which have to be done to make the diagnosis.

I do not know someone in Edmonton, but perhaps with the parameters I list above, you will have some luck in finding someone.

[achillea]

I'm not a doctor, but you'd probably like some feedback, so here's a little:

It is obvious that you are very worried about your daughter and that you want to help her.  She has been seen by lots of doctors, but you don't mention a diagnosis by any one of them, like Marfan's or a GI condition.  

Has anyone offered a diagnosis?

Has any physician suggested that her problems might be emotional in nature?  If so, have you investigated that possibility?  Unfortunately, problems of that nature can indeed have physical manifestations, yet one single visit with a psychiatrist could go far towards eliminating that possibility--as well as offering her ways to deal with the stress of her illness.  It would not be a big expenditure of time or money considering how many other doctors she has seen.

In the meantime, you could also get more info by typing POTS into the search box at the top right area of this page.  Quite a few people with experience of the condition have posted about it, and offered ideas.