Doernbechers Pediatrics Cardiology office were the ones to find my Daughters enlarged aorta which lead to Doernbecher’s Pediatrics Genetics diagnosing her with EDS and finding her scoliosis. They admitted they may not be our top options for the POTS, but would be willing to learn and help if needed, but luckily I had found a POTS specialist that we were waiting to get into.
We had a really good experience there after a year of other Peds Cardiologist blowing us off. I almost didn’t make an appointment at OHSU because of the things people say but I’m so grateful I did because they were the first Doctors to take us seriously and thankfully found her enlarged aorta. Before we knew it was POTS I outright asked a well known ped cardi here how do we know she won’t be one of the kids who suddenly collapases with no warning and doesn’t survive it. He laughed at me and never bothered to actually look at her heart at all. Within 5 mins of entering the OHSU cardi office they realised no one had bothered to look at her heart given all the symptoms and did it immediately and had the results read within 15 mins. Not knowing she has the enlargement could mean the difference of life and death, so I will always be grateful for 2 very caring and concerned Cardiologists at Doernbecher. Her Geneticist was equally kind with great bedside manners and very knowledgable. The Geneticist will see her yearly and will answer questions if something comes up, but they do not manage the day to day care of the patients.
We now use Dr Emelia Arden with NW Cardiology because she is a POTS specialist who is very very knowledgable in regards to EDS and the other conditions associated with POTS and EDS. She treats patients 13 and up with POTS. (she made an exception for my daughter since she was not 13 yet). She knew to look for Chari and some other things and suggested treating mast cell based on an office visit vs more tests. She hugs and holds my daughters hand which might weird some out but for the kiddo it makes her feel like someone really cares and understands.
We do need a neurologist. Not sure if we could take her to the one in Bend. So if anyone can suggest on around Portland that would be great. 🙂