Update re new geneticist

Rose.9.6.03

 Last month, I posted asking advice about whether I should be looking for a new geneticist for my DD:

 

 

https://community.thebump.com/cs/ks/forums/thread/71292976.aspx 

 

Anyway, I have good news.  I spoke with my DD's derm (who specializes in genetic skin disorders) about our current geneticist and she totally agreed that we needed a new one and said that she got frustrated working with him.  She had several recommendations for new ones, too.

 

But she also said she had discussed DD's case with a researcher (who is an MD, PhD and specializes in genetic skin disorders, particularly those related to my DD's skin condition) and that he would like DD to take part in his study.  He's going to do exome sequencing from a biopsy and he feels strongly that he'll be able to provide some sort a Dx.  I spoke with him personally and he answered all of my questions, told me that I could call him at any time regarding the study, an encouraged me to call to check in on his progress.  He said it should take about 3 months to get the results.  

 

The one twist is that because it is research testing, he cannot give me the results.  Rather, he will share the results with the derm, who will then order clinical testing to confirm the specific Dx and give the results to me.  This, of course, adds on 6-10 weeks to the process.  But since we won't be paying for the exome sequencing, it will be sooooo much cheaper than if we did it clinically.   

Anyway, just wanted to share!