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New Here - Need Help for 14 yr old Daughter

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I am new to this forum.  I joined because my 14 year old daughter has been experiencing symptoms of POTS/Dysautonomia:

  • Light headness/dizziness.  Sometimes when she goes to stand up, her vision goes to black and she feels herself sway like she is going to pass out. 
  • Intolerance to heat/warmer weather (cannot tolerate temperatures higher than 67/68 degrees.  
  • Excessive sweating and night sweats.
  • Exercise intolerance (she cannot tolerate normal activity levels)
  • Extreme fatigue
  • Headaches
  • Brain fog and trouble with her short term memory
  • Noise and light sensitivity
  • Joint pain (we saw a rheumatologist for this, but he couldn't find any reason for her pain)
  • Nausea and stomach pain
  • Easily overstimulated
  • Blurry vision and sees white spots in her vision (we have been to eye dr. twice for this in the past 2 months and he can't find anything wrong).
  • Insomnia

The latest issue she is having is weird feelings in her chest.  She said that the other night when she was laying in bed it felt like her heart was vibrating side to side instead of beating.  She said it went on for about 15 minutes.  Yesterday she said that she had a weird sensation in her chest, but it was not like the vibrating sensation she had before.  We are going in for blood work tomorrow, and we are going to see her doctor about the weird chest sensations this afternoon ( I did a search on this forum, and it appears weird vibrations/feelings in your chest are not uncommmon in dysautonomia).

We tried doing the poor man tilt table test at home, but my husband and I lost her pulse several times (we were using her pulse points), so I ordered an inexpensive fingertip pulse oximeter on Amazon, so we can track it over the course of several days. 

As I suspect she has POTS or a form of dysautonomia, I want to find a specialist who could test her for it.  We live about an hour outside of Boston.  Unfortunately, according to their offices, none of the doctors( Dr. Freeman, Dr. Gibbons, Dr. Hohler, Dr. Novak, Dr. Rosenthal and Dr. Shaw) listed in the DINET resources see kids.   The only doctor who would see children, was Dr. Dorothy Kelly, but she is retired.  Can anyone recommend a pediatric specialist in the New England/New York area? If not,  is it important that she by diagnosed by a specialist? Could she be diagnosed by any pediatric cardiologist or neurologist and then we can seek treatment with a specialist (as it appears they are in short demand and there will be a lengthy wait before we can be seen).

This forum is a great resource for information.  Thank you in advance for any advice or information you can share!



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Your daughter sounds a lot like mine and it all started out of the clear blue sky. We have seen 2 cardiologist since Feb. this year. The fluttering my daughter was feeling is her heart is out of rhythm. Both cardiologist say her heart issues should not be causing her symptoms. One diagnosed her with orthostatic lightheadedness. When I mentioned POTS to both they said it was a possibility but they couldn't diagnose or treat it. I finally found a doctor close to us that does diagnose and treat it, we go Friday, Fingers crossed that we finally get answers. If you can find a Pediatric cardiologist that is trained in cardiac electrophysiology they may treat Dysautonomia disorders.  This site very helpful http://www.dynainc.org/living/finding-right-doctor

I wish you luck and hope your daughter can find the help she needs. I know how frustrating it is.

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Hi Melinda,

I don't believe that you always have to see a specialist to treat POTS.  If your family doctor knows about POTS, by all means, let him/her treat your daughter.  It's just that mostly it is only the specialists that know enough about it to treat and actually monitor the results.  We have an Autonomic neurologist at Stanford, but some of our other neurologists didn't really know much about POTS aside from maybe a short chapter they had once in med school.  The key is just finding that needle in a haystack. 

Best wishes to you and your daughter!

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