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Help! 10Yr Old Potsie Dallas Pediatric Pots Doc Needed


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Hi Friends! My friend's daughter was diagnosed with POTS a couple weeks ago and she reached out to me because she remembered I had told her last semester that I had POTS. Of course at the time she hadn't heard of POTS and didn't think much about it, but now, of course, she has an extreme vested interest.

She was diagnosed by pediatric neurologist Dr. Kazi I Majeed at Medical City Dallas. They were both happy and relieved to GET a diagnosis but now the struggle is alleviating the symptoms. She's tried 0.1mg Florinef, salt tablets, water + gatorade, and walking on a treadmill at an incline 3x/week. Her daughter has had no relief and her teachers are starting to notice. She hasn't missed school yet but this poor girl needs relief and I feel for her!!! They are thinking about asking about Beta Blockers. This is a family that usually would prefer not to use rxs unless absolutely necessary but they are getting desperate to help their little girl, who before this was the absolute picture of health and vibrance!

I suggested my friend call Dr Amer Suleman, which is who I see, and I've had an excellent experience with Dr Suleman (and his referral to nutritionist Dr Ron Overberg) to where my symptoms are manageable DRUG-FREE and I am living life so much better than I was 6 years ago when the symptoms started! Unfortunately Dr Suleman doesn't see patients under 16 yrs old. When my friend called Dr Suleman's office, the man who answered the phone wasn't very helpful and simply stated that Dr Suleman refers all patients under 16 to Dr. Lee Ann Pearse, pediatric cardiologist.

When she called Dr Pearse's office, the receptionist stated they see POTSies but their website and any other web searches for Dr Pearse doesn't say anything about her specializing in this type of disease. I'm sure you all know how frustrating it is to have to educate your own doctors about POTS and how it can affect so many parts of your life and other organ systems.

If anyone knows of another pediatric doc in the Dallas area that treats kids with POTS please let me know :)

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Hi,

Have you looked at the doctor's list on the dinet's front web page. I live in Oklahoma and use a cardiologist through Children's OU Medical Center. If there is a children's hospital in Dallas, she might could call the cardiology department and get a referral from them. My heart goes out to you. My son was 11 when he was diagnosed with POTS.

Rachel

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There is a hospital called, The children's medical center of Dallas. I looked at their cardiology program and it does have electrophysiology listed (which is a good sign) and they had tilt-table testing on there which had a type of syncope people with POTS can get. So they might be able to help her and atleast get her started in the right direction. This is the link to the tilt-table test thing and you can view the whole cardiology program if you click the back button once. Hope this helps. http://portal.childrens.com/wps/portal/!ut/p/a0/04_Sj9CPykssy0xPLMnMz0vMAfIji0sSK8tTc3KsAgwMLYzM9cP1o_SjSioLUvUjLQ30C3JzHQFqK_Fv/

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Kayla,

Sorry to hear about your struggles as well as your friends daughter. I have trouble handling this as a 27 year old woman, I couldn't imagine how difficult it must be for a 10 year old.

I am from NY so I am unable to help with the Dallas doctor search, however, when I was reading what you mentioned her current treatments are, I saw she walked on a treadmill. Just a suggestion from my experience: I started seeing improvements when I switched to the recumbent bike and "x-ed" the treadmill. (I have a hard time standing because of the affect it has on my heart rate, cognitive function & pre-syncope)

Also, I did want to mention a med called Mestinon. I saw you mentioned they are hesitant w/ pharmaceuticals, but this medication is actually considered not as dangerous as florinef and midodrine. The link below will hopefully be helpful .. (and it's pediatrics)

http://pediatrics.aappublications.org/content/118/5/e1563.full

Good luck to you and your friends little girl. You seem like a great friend to go above and beyond, especially when you are dealing with your own health challenges. Take care,

Sarah

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