Geneticist Recs

Anonymous
Looking for a second opinion from a geneticist dealing with a chromosome microduplication. Any suggestions? We've already been to Children's, so I'd like to go to another place for a 2nd opinion. Thank you.
Anonymous
Who did you see at Children's?
Anonymous
Is this a fetal issue, OP? Or a child you are testing?

If this is a fetal issue, I recommend Dr. Harvey Stern. He's in Fairfax at the Reproductive Genetics and Fetal Diagnostic Center.

If this is a child you are testing, I recommend Kennedy-Kreiger. Our geneticist there is Dr. Ali Fatemi. He is a super-bright, yet a compassionate and understanding person, and will track this down tirelessly.
Anonymous
This is for my 2 year old daughter.
Anonymous
We have had very complex testing done through Kennedy Krieger. This was through their muscle clinic and center for development learning but that's because that was the clinics we were involved with at the time. I'm sure the others do the same to get at the reason for the issues. The results came back and we were counseled but they have now referred us out to Hopkins Genetics for a more sophisticated consultation and analysis. Hopkins was backed up 5 months on appointments, by the way. Still waiting for my date so not sure yet on what I'll think of their analysis. So, if you want a second opinion, I'd head to Baltimore but prepare to wait for that appointment at Hopkins.

Anonymous
Dr. Raygada at NIH. She's excellent and they are so up to date on everything AND its all free.
Anonymous
Anonymous wrote:Dr. Raygada at NIH. She's excellent and they are so up to date on everything AND its all free.


Can you just call and make an appt or do you have to fit the parameters of a study?
Anonymous
What is NIH?
Anonymous
nih=national institue of health
Anonymous
i just called and made an appointment
Anonymous
cannot believe somebody doesn't know what NIH is, but that's besides the point. Have had good experiences with Carol Greene, peds geneticist at University of Maryland. She's in downtown baltimore though, so kind of a schlep.
Anonymous
Any comments about the CNMC group? They have like 9 of them. Not sure who I should ask for...
Anonymous
Dr. Kenneth Rosenbaum is the lead at CNMC and I have not had a good experience with him. Just super impersonal...always looking for manifestations of problems. He's a geneticist I guess -- he sees a mutation and looks for hte problem and focuses on that instead of seeing beyond it. I realize that's why you go to a geneticist -- to see the impact of any of these mutations but it seems to me that he overdoes it when its unnecessary.
Anonymous
at CNMC, I do not recommend Dr. Lichter. She has the worst beside manner. She may be a very good geneticst but I will not go back. She essentially said that we were lucky my child was not just laying around slobbering (like a vegetable). My child is now an active 4 year old with issues but most people don't even know that.
Anonymous
Children's National Medical Center has added 9 new geneticists and significantly upgraded the program. FYI, I'm the new division chief who moved here from Vanderbilt about a year ago. We have recruited a national group of excellent (and very personable) physicians from Stanford, Harvard, CHOP, NIH, Vanderbilt, Baylor, and Mayo. I'm trying to make this a very very patient/parent friendly place. I've been in the business for about 25 years. I also have a daughter with Down syndrome which gives me some perspective. One of the reasons I was brought in was customer satisfaction issues in the past and a real need to expand the program. Our wait times are currently 11 days for a new appointment and we are trying to go below 10. For emergencies we see patients 24/7. We are re-opening our Fairfax clinic in February 2012 for ease of patient access and have opened more slots in Maryland. For parents with newborn screening issues we've hired a nurse practitioner whose only job is to answer those questions (for parents and physicians).
I take concerns and bad experiences very seriously. I want you to let me know if you have them. My email is msummar@cnmc.org
In genetics we cant' always figure out what is wrong but we've got probably the best team for doing it. No fads, no gimmick treatments, but we do have the most experienced and knowledgeable group around anywhere. If you don't want to see us, I'll help you find another center where there are good docs.
Contact info for questions or an appointment:
Appointments: 202-476-2820
Administrative Offices: 202-476-2187

I apologize for posting in a parent's forum (although I am one) but I hoped the information would be useful.
With best regards,
Marshall Summar, M.D.
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