Dr to evaluate a Teen for Dysautonomia / CFS taking new patients?

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Hello my folks, I am in desperate need of help. Do any of you know of a doctor that can evaluate a Teen for dysautonomia / CFS that is actually taking new patients (travel within US or money is not issue).
 

heapsreal

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Hello my folks, I am in desperate need of help. Do any of you know of a doctor that can evaluate a Teen for dysautonomia / CFS that is actually taking new patients (travel within US or money is not issue).
Is there any possibility they may also have EDS?
My daughter was having lots of dizzy spells and fainting. Her blood pressure was always low and would have boughts of tachycardia. She got diagnosed with pots first.

She also use to dislocate ankle, toes and fingers etc but they would relocate. She is very flexible. Lots of issues with her hips which she has had surgery on one for a labral tear at 18yo. It was a struggle to find a rheumatologist to diagnose her but we did.

Just thought id mention it as it may help. Im on the other side of the world so i cant recommend any drs unfortunately. I wish you luck.

Cheers
 
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It might take a long time to get an appointment, but Dr. Systrom in at Brigham and Women's Hospital in Boston may be an option. He's a pulmonologist, so he's not an expert in all aspects of ME/CFS. However, if you suspect dysautonomia he is experienced with that. He's very good at assessing someone based on their exercise testing (during the initial appointment you do some very informal exercise testing such as stepping up onto a stool and back down again for a minute or so while wearing monitoring equipment), and he looks for objective measures of something being off.

The Dysautonomia International website also has a list of physicians that might be helpful: http://www.dysautonomiainternational.org/page.php?ID=14

I was recently referred to a doctor on that list, Dr. Roy Freedman (at Beth Israel Hospital in Boston); I've been told that you have to fax over your doctor's notes to his lab, then it takes 4-6 weeks for the him to read the notes and decide whether or not to see you.
 
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5vforest

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Nathan Holladay seems like someone who may be helpful. He is a solo practitioner and easily contactable, i.e. you could simply call him and likely have a quick discussion to see if it would be a good fit: https://www.holladaymd.com/