So my genetic appointment was moved up to Friday. I asked who if I was going to see the main doctor or if I was going to see the nurse practitioner that we met with the first time. They informed me that I would be meeting with a genetic counselor.
What is the difference between the doctor and a genetic counselor? Is there anything I should prepare myself for? I also realize now that I need some help of a social worker. I'm not sure what resources they should provide or what to ask. Could someone give me some guidance?
Re: Genetic counselor?
We had our genetics visit at 1 yr. we initially met with the genetic counselor (which we had to pay OOP for, our insurance did not cover it). She took down history like pregnancy issues, labor and delivery, Nicu time, any other issues, surgeries, therapies, etc. probably lasted about 45 minutes.
We stuck with one hospital and had extensive testing done prior so the geneticist had access to all the prior stuff. Our geneticist came in, talked with us. Evaluated DS1 physically went through the list of possibilities neuro came up with and why they didn't apply. She then said she had this one test she wanted to run, it's pretty rare and most likely not anything but would be a fitting possibility. But it would take 3-6 months to come back. We talked for a while about a plan of action if the test came back negative, etc. she gave us a script for bloodwork and we left. (The insurance did cover the doctor portion of the appointment, just not the counseling portion) our geneticist called back 3.5 months later saying they had a diagnosis.
we met with the counselor she read us the results and what some of the words meant, she gave us a folder of literature from the lab facility on they mutation, showed us on the gene map where his occurs, etc. Took about 15-20minutes. Then the geneticist came in to discuss it further. However I was pregnant so part of it was determining a course of action for my pregnancy.