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.