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About 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, otherwise no one would take my word for it, not doctors or family, just a couple close friends, and my daughter who was suffering and knew her symptoms matched. If you pick a new doctor, and you're still not sure, call the office and ask if they test for Pots. You could get a good feel for how serious they take it that way. The fitbit hr 2 (a friend suggested it, but we don't have it yet.) Evidently the second model keeps a 24/7 heart rate chart, check first, I'm not completely sure. We have a finger pulse oximeter which is great for checking it now and then. We've done sit/stand tests with it. It was only $20 on Amazon. Good luck. I know how frustrating it is to not have a proper diagnosis.
  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 outings short. I know we are very fortunate, but there is still an emotional strain. I am perfectly willing to be her advocate and caregiver for what could be a very long time, but I keep hoping, for her sake, that I'm completely wrong and she'll be fine soon. I've read that 80% of teens grow out of it, but is that actually true? Or is it just that they learn how to manage it well? I am glad your daughter is feeling much better now. It really helps to hear that.
  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 feeling heartbroken for my daughter, not to mention emotionally drained. Here is her health summary: Age 7- pneumonia Age 8-10 - Chronic morning nausea/weight loss Age 10- pneumonia again Shortness of breath and nausea persisted after pneumonia. Diagnosed with 'very high risk' celiac genes, and high serum ferritin levels, all other gastro tests were fine. FODMAP Diet helped a little, not completely, gluten free since age 10 Age 10-12- Gradual onset of blurry vision/light sensitivity (her biggest complaint), dizziness, flush, hot/cold hands and feet, nausea, weird throat sensation/occasional trouble swallowing, hypoglycemic symptoms (eating low carb helps), nervousness/anxiety (only when feeling really bad), high resting heart rate (105ish) and postural tachycardia. (120s- 140s after standing for just a few minutes) 12 1/2 (now)- Quit all outside activities, symptoms at full swing. A short, lukewarm shower can wipe her out for the rest of the day. Still underweight, 5'2"- 80 lbs. Not menstruating yet. We are following Pots protocol; extra fluids/electrolyte water, and salt, compression socks, floor exercises, and we purchased a used wheelchair, but other than doctor appts. she doesn't want to risk leaving the house. Luckily her pediatrician gave us tons of referrals, see list in my signature. All recent labwork has been fine except for elevated thyroid antibodies. Hoping to get a diagnosis and discover an underlying cause (or subset?). As these appts come up I'd like advice on what questions to ask each doctor. I understand the pneumonia may have triggered Pots, but am also wondering if there is EDS in our family. My 12 yo doesn't show many physical attributes, but I have other kids that do, and the pediatrician always said my kids have loose joints. Which doctor would I discuss EDS with? Is there anything else that stands out from my daughter's health history? Thank you all for sharing your experiences and daily struggles. I've learned a lot that way, especially how to relate to what my daughter is going through. Thank you for taking the time to read and respond. I promise my future posts will be short and sweet.
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