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SV_Dad06

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Everything posted by SV_Dad06

  1. Our Daughter's Doctor was a cronic disease specialist and diagnosed her CMV 4 years ago and after 1 full year told us that the virus was gone. She still felt weak and dizzy at times and still missed a lot of school for the next year and a half. We ended up at Children's Hospital in DC. Here they knew about POTS and did a TTT and did diagnose the POTS in December of '03. We stayed with Children's Hospital for 3 months and the POTS just was VERY BAD. Then we found Dr Abdallah in Virginia (DC Area). Since then, things have improved. He is the only Doctor that our Daughter likes and will trust. She will talk to him and he will listen. Then there are the ER doctors and EMT's. They have seen us numerous times over the past 22 months, and recognize us and know our daughter's name. BUT still these Doctor's don't know any thing about POTS or how to treat it. What they have learned is that in the middle of the night, we will show up, they will give her 2-3 liters of IV solution with pain medication and she will sometimes be able to walk out of the hospital 3-8 hours later. We feel VERY lucky to have found a Wonderful Doctor.
  2. My daughter has POTS and had surgery in June with no problems. Our Cardiologist spoke with the Surgeon. They had her come in and start an IV 4 hours before surgery and for 4 hours after to help. She had no problems with the surgery. The Doctors should talk before hand to insure the surgeon knows the situation.
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