We've been to Doernbecher's in Portland on 3 occasions now, and so far not one visit has been productive or worth the expense to travel for 2 hours to get the consultation. . . . . . . . . . . . . . .
When my daughter was first diagnosed with a rare chromosome disorder, in the genetics clinic we were handed a bunch of papers I'd already found online, and given a colossal ""We don't know, good luck with that."" We now call trips to CDRC the ""$50 shrug"". As a new parent of a child with a rare disease, the lack of followup or any useful information was disheartening and misleading. I was led to believe there was ""nothing we could do"" ... when in fact, there are several things that have helped my daughter. . . . . . . . . . . . . . .
After we discovered supplements that helped, we were sent up to the metabolism specialists... who was impressed that I'd gotten ahold of a well known physician at Standford, then proceeded to brutalize my daughter in the process of getting a skin sample. Note to all parents. If a skin cell culture is needed, and a biopsy is recommended, INSIST on getting it done by a dermatology specialist, this doctor did not know what he was doing, and caused my daughter unnecessary pain. Then we were sent down to the labs where they proceeded to hold my screaming child down and traumatize her further. My lab at home is very gentle and while we do restrain her, she doesn't even cry when they draw blood. My child who never screams, was screaming while a brusque nurse refused to listen to my suggestions for calming her, and refused to give me access to calm her myself. Ultimately all those lab tests ended up with the doctor saying, ""Well, we don't know, but I guess you should continue since you say it's helping her""... and it took us TEN MONTHS to get that analysis. Fortunately I'd already figured out that it was helping her. . . . . . . . . . . . . . .
That was when she was 2 years old. She's now 4 1/2 and today she FREAKED at Doernbecher's when four people in lab coats squeezed into the tiny exam room. She clearly remembered how much pain she'd been caused the last time. This time, she actually got away from us, climbed over someone's feet and escaped down the hall, she was so upset. The doctors never said her name, never really interacted with her other than to grab her head (Craniofacial clinic), spend an unnecessarily brief period of time to basically say, ""There's no problem unless another specialist says there is one"", while not really listening to what I was telling them about the specialist we'd already seen. . . . . . . . . . . . . . .
My daughter is not comfortable about medical personnel, but she has not freaked out that badly anywhere but CDRC, and if I can avoid ever taking her there again, I will, they've done nothing for us but cause her pain and trauma and I think it is inexcusable. I would rather take her out of state myself than ever do that again. . . . . . . . . . . . . . .
The moment they all left the room, my daughter calmed down. She was clearly terrified, and they did NOTHING to calm her. In my opinion, they need to get a few lessons in working with children and families. All of them that I have worked with.
Pros: The only game in town, apparently
Cons: Brusque, not friendly to kids, caused unnecessary pain
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