Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi . My son and I saw Dr Dobyns in July, though not at his offices. We saw him at the Lissencephaly conference in Ft Wayne In. We had an appt at his office for Sept., which I cancelled once I found out that I could see him at the conference instead. Our appt was quite long, over 2 hrs, though some of that time we spent with Dr Chang(from Dr Walsh's group), who took 's birth to present history before Dr Dobyns arrived. The only thing you need to bring is your MRI films and questions. Anything else you think would be helpful may not be a bad idea. In our case, I brought 's MRI films which were done when he was 3 months old and head CT films we just had done in June. I just thought it might help in comparison of then and now. Turned out it was a very good thing I brought them. Dr Dobyns said that he thought the MRI films were enough but looked at The CT films too, and in doing so, he and Dr Chang were able to see the cause of 's PMG. It turns out that the MRI, while great at showing " slices " of the brain, did not show the small areas of calcification in 's frontal lobe that the CT films picked up. It seems that calcifications are a hallmark sign of a CMV infection, so we were able to learn that 's PMG was not genetic, but instead caused by CMV. The 2 Drs were so sure of this that we were released from both studies. As far as what to expect from Dr Dobyns...If you're looking for warm and fuzzy, you're going to the wrong man. He's nice, intelligent(yet explains things in lay terms), patient with questions, but very frank in his opinions and observations. My advice would be to make sure you really want the answer before you ask the question. I asked 2 questions I probably wasnt ready to hear the answers to at the time. One about life expectancy and the other about retardation. I was very upset by the answers I received. However, keep in mind that although he is the " expert " , he doesnt know your child. Everything he tells you is based on what he sees on the films and upon exam of your child that particular day. After our appt., I was talking with several other Moms at the conference and every single one told me that their child had already exceeded Dr Dobyns expectations. Good Luck. Sue Mom to Meghan(10) and (4) BFPP, microcephaly, mild-mod spastic quad CP > > Hi I think it is Donna who has been talking about Dr. Dobbyns. My name > is . My son is almost 3 with PMG. We are going to Chicago on the > 15th of this month to see Dr. Dobbyns. Any info you have would be > helpful. Or anyone else out there. How did the appt. go? What did he > do? What were the results? and any answers about insurance would be > great. We just want to go there with as much info as we can. > Especially since we are on the west coast and it is a long way to go. > > Thanks > and Caleb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Sue, Does he do this at every conference? I would like to know when the next one is, if possible. What did he say about life expectency? email me privately if you like. My son has moderate bilateral PMG and BPNH. We just got into his study a few weeks ago. We do not know the reason for it yet. donnasc4@.... Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Hello Sharon, Following is the information for Dr. Dobyns: B. Dobyns, MD, PhD University of Chicago Department of Human Genetics 5841 S. land Avenue Room L151, MC 0077 Chicago, IL 60637 Email wbd@... Office Phone Office Fax Someone else that may be of interest to you is Dr. Walsh with Harvard Medical. He also has extensive knowledge about CNS Migrational Anomalies. Too, he is currently conducting genetic studies in the field. Here is his information: Department of Biological Chemistry and Molecular Pharmacology, Harvard Medical School 240 Longwood Ave, Boston MA 02115 http://walsh.med.harvard.edu Hopefully, this information is of use to you. Take Care, Deanna Dr. Dobyns Hello Group, Can someone please give me the contact information for Dr. Dobyns. We finally received 's MRI film and would like Dr. Dobyns to read them. Thank you. Sharon T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Perfect! Thank you Deanna, Sharon T. adgillespie@... wrote: Hello Sharon, Following is the information for Dr. Dobyns: B. Dobyns, MD, PhD University of Chicago Department of Human Genetics 5841 S. land Avenue Room L151, MC 0077 Chicago, IL 60637 Email wbd@... Office Phone Office Fax Someone else that may be of interest to you is Dr. Walsh with Harvard Medical. He also has extensive knowledge about CNS Migrational Anomalies. Too, he is currently conducting genetic studies in the field. Here is his information: Department of Biological Chemistry and Molecular Pharmacology, Harvard Medical School 240 Longwood Ave, Boston MA 02115 http://walsh.med.harvard.edu Hopefully, this information is of use to you. Take Care, Deanna Dr. Dobyns Hello Group, Can someone please give me the contact information for Dr. Dobyns. We finally received 's MRI film and would like Dr. Dobyns to read them. Thank you. Sharon T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 wbd@... Sharon wrote: Hello Group, Can someone please give me the contact information for Dr. Dobyns. We finally received 's MRI film and would like Dr. Dobyns to read them. Thank you. Sharon T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hey Dana, Give his office a call and see if they can work you in. I hear they are great and am sure they have ran across this before where families find out they are going to be in the area. Dobyns is totally worth doing whatever you can to get in to see him. Good luck! and Alyssa ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
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