Thank you Maffin for your response! I was thinking with as many physical features they would at least want to do an ECHO to be sure, so your response reassures me.
I am trying to find a new pediatrician that is actually knowledgeable about EDS, and/or is willing to study up and learn to be our doctor. Got a call back from one that says she knows about EDS and willing to meet with me/us and find out what type we have and research anything she needs to. That was encouraging. I have a “meet the doctor” appt with her on Thursday. Our current pedi just looks at me blankly when I mention EDS and that EDS effects ______(fill in the blank). It is either the blank look or she just wants to send us to a specialist. My experience with specialist’s is that they don’t know much about EDS either. Have had two gastro doctors with NO knowledge whatsoever of EDS and these were older doc’s. I have a hard time wrapping my head around the apparent fact that I am the first EDS patient they have ever seen? Or is it that they just don’t care/don’t listen? When you are putting your body in someone else’s care in a surgical setting and you try and try to make them understand you are a bleeder/poor wound healer/pain meds don’t work, etc. and then they tell you later that there were bleeding issues, etc. while scratching their heads, you realize they weren’t listening to you at all. :shut:
I know, I’m preaching to the choir. Finding good doctors for us special folks is just so HARD. Or, at least it is here on the west coast.:roll: