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About Motherof3girls

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  1. After we have our appointment Friday I'll let you and everyone know how is goes. Hopefully we'll have good luck and if we do you can call them too.
  2. @SarahA33 Columbus is about a 4hour drive for us. I finally called the doctor's office in the thread that's in Louisville. They were extremely nice and talked with me about 20 minutes. After hearing her symptoms and previous diagnosis and knowing she's an athlete they are going to see her next Friday. I am happy and hopeful that we will get some answers and scared that we won't. He specializes in Dysautonomia and has been treating disorders for 15 years and is associated with the Dysautonomia Youth Network of America so I'm hopeful.
  3. We live in KY. The closest t clinics are in OH and TN. I have been able to find 2 doctors in KY that treat dysautonomia, one doesn't get good reviews and the other I'm going to call and get a feel for them and see if it's worth my time and money to even try and see them (they are a 2 hour drive away for us).
  4. @Davidinaz She's had multiple EKGs that show frequent PACs and an echo that showed mild mitral valve prolapse with regurgitation. We've seen 2 cardiologist and both say her heart is fine and that's not what is causing her symptoms. She's had a 24 hour holter and a 72 hour holter, both just showed sinus rhythm with sinus arrhythmia with frequent PACs. However the frequency increased from 8% with the 24hour to 13% with the 72hour but they didn't seem to think that meant anything. They were taken about a month apart. She was diagnosed with Orthostatic Lightheadedness. When I mentioned POTS both c
  5. @StayAtHomeMom we live in Irvine. About 46 miles SE from you. We have already seen 2 different cardiologist both have said possible POTS, but just left us hanging. Said we needed to find a specialist, but had no suggestions. One said she just had anxiety and needed therapy. They both say her heart is not the issue that her PACs and mitral valve prolapse are minor and are not causing her symptoms. Her resting heart rate can be anywhere from 85-130, standing 140-160, causal walking 148-170, she dips into the low 40's when sleeping and sometimes her bp is so low you can't get an accurate measure.
  6. @StayAtHomeMom I have looked at this site many times, but have not been able to find any info on this Dr. He's not listed on any of the POTS sites and I can't find any reviews on him. I feel like I've already spent so much time and money I want to know that it's a Dr that's going to listen and really try to help her before I even make an appointment.
  7. @LowlypopsMom Thanks for the suggestions. I liked the last cardio we saw and I'm waiting to see what this 72 hour holter says before I do anything else. It just amazes me that they don't mention POTS until I say something about it and then it like well that's a possibility and then go right on to talking about more water etc. I understand the importance on water and salt, but geeze my child was an athlete and now she struggles to make it through school. I feel like I'm talking to a blank wall sometime. We even had one doc suggest she was just deconditioned. Really?!? This all began in the midd
  8. Thank you for the suggestions. I'm trying find a descent app for her to use to track heart rate and symptoms with. Do any of you know one that's good? I had heard of POTS a couple of years ago because Mayo thought my sister may have it, but she didn't so I never researched it. She suffers from T1D, Graves and AMY. It may just be because I'm familiar with Graves, but I feel like POTS is just like it but without the thyroid being involved. My sister spent years in misery due to her Graves and almost died before they figured it out (of course that was 20 years ago).
  9. How do you get doctors to quit blaming everything on puberty and anxiety! My happy and healthy 12 yr old went from playing basketball and 3 softball teams to barely making it through a school day. It was like lightening striking out of the clear blue sky! She was on the softball field and almost passed out. Took her to primary ped and they sent her for EKG due to her heart being out of rhythm. EKG came back with frequent PACs. Went to cardio another EKG (showing frequent PACs) and did a kind of tilt table test and she almost went out. Diagnosed her with Orthostatic Intolerance told her to drin
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