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@adah

Hi Colleen, I do think it’s important to ask what research they are doing or would they do research if you find you have a rare disorder. My son ended up being diagnosed by children’s hospital genetics with a rare disorder and the doctor he had been seeing for over 20 years told me, he didn’t know anything about that disorder and didn’t care to look it up. Genetic team reached out to him for a response after finding the disorder and as of today’s date he has not responded to them, going on 4th week. So from my experience, please ask the new specialist questions. I’ve had to move on to new doctor. It’s just sad for someone else that would come thru that doctor, and he could possibly have helped them. But Because he didn’t want to do the research, I had no choice to move on. I advocate for my mentally challenged son. Bottom line is find a doctor that does research and will correspond with other drs.

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Replies to "Hi Colleen, I do think it’s important to ask what research they are doing or would..."

@adah....I'm glad to hear you've found another doctor for your son. Some doctors are as biased and pessimistic about mental challenges as the ordinary citizen. Your advocacy for your son will help others. Is there a rare disease support group where you can share your story?