pink1975 Posted October 14, 2017 Report Share Posted October 14, 2017 My 17-year-old daughter has been having POTs like symptoms for the past few years and we finally got to the point where the doctor ordered a holter monitor and referred her to pediatric cardiology for an echocardiogram. We had that appointment today and were blown away by the fantastic pediatric cardiologist (Dr. Legg) at Essentia Health in Duluth, MN. He was super friendly and knowledgeable. He looked at her echo and confirmed that her heart is healthy so we have no worries there. He spent quite some time going over her symptoms, checking vitals multiple times and looking over her chart before telling us she definitely has POTs. Then after questioning me about my own POTs as well as asking about my symptoms and whether I'm hypermobile, etc, as well as how "bendy" my other two daughters are (they were in school though) as well as what skin symptoms, etc each of us has, how well we heal, and even things we never considered, he thinks we all have Ehlers Danlos. He said that as we learn more about it we will all be like, aha, that makes perfect sense! The older two aren't as bendy as myself and my youngest but have skin symptoms, multiple sprains and strains, and my middle daughter has scoliosis) He didn't put her on meds yet, just lifestyle, more hydration, salt, better diet. He didn't want to try meds right away because he said beta blockers make you gain weight (yep, I know, lol). She goes back in 6 months and he would like to meet the other two daughters and refer the family to a connective tissue specialist. He told us he hates how most doctors give you a bunch of unrelated diagnoses (like my celiac, fibro, pots, and asthma) and treat you for a bunch of things without finding out what the problem truly is. He thinks daughter's irritable bowel is from the Ehlers Danlos and also says that it's terrible how doctors tell people it's all in their head or throws medications at them and leave them to go. (Sorry if I'm rambling or not making sense, lol, it's been a VERY long week overall and today was a bit rugged). Quote Link to comment Share on other sites More sharing options...
p8d Posted October 14, 2017 Report Share Posted October 14, 2017 That's so wonderful and in such a small city too. It's such a relief to find a knowledgeable Dr. I'm happy for you all. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted October 14, 2017 Report Share Posted October 14, 2017 I am happy for you both. How wonderful to get assisted by a caring and knowledgable doctor. I hope her symptoms are soon manageable and she is feeling better. Quote Link to comment Share on other sites More sharing options...
Nathalie Posted October 14, 2017 Report Share Posted October 14, 2017 I'm glad you found a good doctor. They are worth their weight in gold. Mine gave me florinef and that was that. Said there was no point in investigating for anything and is not familiar with POTS symptoms -- only the criteria for diagnosis. Quote Link to comment Share on other sites More sharing options...
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