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LowlypopsMom

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  1. Mom of 5 girls here (and 1 son). My 12 yo was just diagnosed. I switched cardiologists since the first one said he wasn't sure that Pots was a 'real thing'. A got a new referral and checked all the doctors on the list and researched their bios on their websites. One said that he treats Pots patients so we went to him. He diagnosed her with a sit/stand test and said there was no need for a tilt table test. When we left the office I noticed that he didn't put the diagnosis on the paperwork, he had left it blank. So I went back in and waited another 20 minutes for them to fix it. I'm glad I did,
  2. Brenda, thank you very much for your words of wisdom. Fortunately, we don't have a lot of adjustments to make. We already homeschool. We're with a charter school so I might need the 504 plan for state testing. I have asked a couple of her homeschool friends to come here to visit. Also, I have six kids (ages 9-24), she is the fifth, so there's always an older sister to stay with her when I need to run errands or attend a social event, and her younger sister helps to get things for her and they play well together. During a flare, she just wants me, though, so I've promised to keep my outing
  3. MomtoGiuliana, thank you. It sounds like I need some new referrals. I was happy the pediatrician was willing to give me lots, not just a gastro like before. Maybe we'll find out a little from each one, but EDS is starting to sound likely. Thanks for the advice on starting a new thread.
  4. I haven't measured her blood pressure enough to know. I did get a bp cuff to make sure it wasn't dropping too low, which it wasn't. I'll check to see if there are spikes. She does get pale.
  5. Hi. I had never heard of POTS until about 6 weeks ago when a friend suggested it after hearing my daughter's symptoms. I thought she might be celiac, hyperthyroid, diabetic, or need her gallbladder removed (I'm not ruling out any of these), but now I had a new, totally unknown topic to research. I learned how to do a 'poor man's' test and she passed every one that I put her through. I was elated that we might finally know what was going on with her, and hopeful that we'd be able to treat and get her well soon, like I promised her. But now, after tons of research and reading stories, I am feeli
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