Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 wbd@... KANHOW@... wrote: How do I go about contacting Dr. Dobyn's? I keep hearing about him and his research and it sounds fascinating. We have a 7 year old daughter who is an international adoptee with no birth history. We would be interested in getting some type of genetic screening done to see if her condition was due to genetics or environment. Best wishes, Kandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 University of Chicago... I only have the number of a Genetic Counselor we dealt with in setting up our appointments... but she was working with Dr Dobyns at the time.. (2002) Her name was Hedrick, M.S. But I know that was 4 years ago... Someone else on the group may have met Dobyns in the closer past.. but it is 100% worth the effort... I tell you, we received more honest, detailed, and specific information regarding Polymicrogyria and s specific brain malformity... than we ever could have imagined. I still have all of my X rays...and segment by segment, section by section... he went over them... We talked about what we COULD expect... at 4 years old he had just started having seizures... and they predicted they would worsen, they did. We talked about orthopedic issues... they predicted it was a possibility he would need surgery down the road.... and sure enough two years later his hips became dysplasic and he needed bi lateral hip osteotomies, He also assured us that possibilities were ever present for miracles that we cant explain..or that we dont know of... lost his ability to swallow safely... in Dec of 2004... and unfortuneately feeding difficulties were one of the things that were prone to being problematic... He was honest with us on the topic of mortality...and answered every question I had with concern, practicality, and straightforwardness. KANHOW@... wrote: How do I go about contacting Dr. Dobyn's? I keep hearing about him and his research and it sounds fascinating. We have a 7 year old daughter who is an international adoptee with no birth history. We would be interested in getting some type of genetic screening done to see if her condition was due to genetics or environment. Best wishes, Kandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 My daughter Crystal was also placed on ACTH when she was a baby. Dr. Dobyns looked at Crystal's MRI films without us ever having to go see him. He then mailed them back to us. I hope that this information helps you. With love to all... & Crystal Aquielle > > Hello everybody > > > > A question: can everybody send the MRI to Dr. Dobyns without a consultation? > We are from Belgium. > > Ok, the doctors here are very good! Josse has no seizures anymore due to his > ACTH-therapy! > > > > Juri > > > > > > > > Juri Planckaert > Medisch Secretaris > > Orthopedie - UZ Gent > De Pintelaan 185 > 9000 Gent > > > Juri.Planckaert@... > > > tel: > fax: > mobile: > > > <http://www.plaxo.com/click_to_call?src=jj_signature & To=09% 2F2405685 & Email=j > uri.planckaert@...> 09/2405685 > 09/2404975 > > <http://www.plaxo.com/click_to_call?src=jj_signature & To=0475% 2F851944 & Email= > juri.planckaert@...> 0475/851944 > > > > > > <https://www.plaxo.com/add_me? u=25769972925 & v0=336557 & k0=1723163833> Add me > to your address book... > > <http://www.plaxo.com/signature> Want a signature like this? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Hi, I know several members of this group have contacted Dr. Dobyns. I am curious if he has been able to provide more information than a regular pediatric neurologist?? I have contemplated contacting him, but my significant other doesn't seem to think it's going to be very useful. The reason being is that is doesn't change to outcome of our situation. I realize that, however, he may be able to provide more specific information since he is an expert in pmg! I guess I am looking for a little insight from other member's experiences with him. I can be e-mailed at: swingline04@... thanks very much, wendy (mother to william r sided pmg) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 I contacted Dr. Dobyns about 7 years ago. He reviewed my son's MRI for free and gave more in depth information than the typical radiologist. All I did was send him a disc copy and the neurologists notes. We also joined in the study he is doing on PMG. Nothing new has been discovered yet through this. I would definitely contact him and at least let him review the MRI. Donna Chesapeake, VA re: Dr. Dobyns Hi, I know several members of this group have contacted Dr. Dobyns. I am curious if he has been able to provide more information than a regular pediatric neurologist?? I have contemplated contacting him, but my significant other doesn't seem to think it's going to be very useful. The reason being is that is doesn't change to outcome of our situation. I realize that, however, he may be able to provide more specific information since he is an expert in pmg! I guess I am looking for a little insight from other member's experiences with him. I can be e-mailed at: swingline04@... thanks very much, wendy (mother to william r sided pmg) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 , We didn't see Dr. Dobyns, but we did see Dr. Walsh at Children's Hospital in Boston. They are part of a joint study. He reviewed Ethan's MRI and we met with his team of geneticists and neurologists as part of the Comprehensive Brain Malformation Program. It was all completely free. They found some very slight differences in his MRI from what we were told by our pediatric neurologist at the University of Kentucky. Overall, I don't think we received any earth shattering new information, but I felt much better knowing he was an expert and has seen hundreds of kids with PMG instead of just one or two in his career. When he told me Ethan had some of the worst MRI scans he had ever seen, I was devastated. Then he told me that Ethan was one of the most advanced kids he had ever met. As he said, it goes to show that the scans don't mean much, every child is different. He told me Ethan was going to shock his doctors for the rest of his life. Coming from him, it gave me so much hope. I would say, even if you don't get much new information, get in touch with Dr. Dobyn's or Dr. Walsh. It will give you the peace of mind that you did everything you could. Kate, mom to (5), and Ethan (3), diagnosed with Bilateral PMG Subject: re: Dr. Dobyns To: polymicrogyria Date: Wednesday, June 25, 2008, 11:39 PM Hi, I know several members of this group have contacted Dr. Dobyns. I am curious if he has been able to provide more information than a regular pediatric neurologist? ? I have contemplated contacting him, but my significant other doesn't seem to think it's going to be very useful. The reason being is that is doesn't change to outcome of our situation. I realize that, however, he may be able to provide more specific information since he is an expert in pmg! I guess I am looking for a little insight from other member's experiences with him. I can be e-mailed at: swingline04@ msn.com thanks very much, wendy (mother to william r sided pmg) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 Dear , Our pediatric neurologist attempted to defer us from visiting Dr. Dobyns stating that he would not be able to tell us anything more than her. She was wrong. He read our daughter, andra's (now 27 months), MRI differently that the people here in St. , MN. He told us that her PMG was not global, but specific to two regions of her brain. He told us given a number of positive variables, he was " cautiously optimistic " about her outcome. He gave us a lot of hope (and he's not known as a " hopeful " guy) about the kind of life our daughter will have into adulthood. He said that she would walk, feed and dress herself. He also said that she wouldn't be " normal " but had a lot of good things going for her. He also stressed the need for seizure management (she has myclonic seizures) and speech therapy...which we increased after our visit with him. Like , my husband and I have peace of mind knowing that we've done EVERYTHING we could to and for our daughter. It doesn't hurt anything, except for your pocketbook, to meet with him. With the emotional toll this has taken on us, medium Starbuck lattes became unimportant to me. Know that his appointments are 6 months out. Good luck! Rochelle A. Quandt Senior Marketing Communications Administrator Medical Division 3M Center, 275-4W-02 St. , MN 55144-1000 Tel: Fax: raquandt@... katherine ramsdell Sent by: polymicrogyria 06/26/2008 08:37 AM Please respond to polymicrogyria To polymicrogyria cc Subject Re: re: Dr. Dobyns , We didn't see Dr. Dobyns, but we did see Dr. Walsh at Children's Hospital in Boston. They are part of a joint study. He reviewed Ethan's MRI and we met with his team of geneticists and neurologists as part of the Comprehensive Brain Malformation Program. It was all completely free. They found some very slight differences in his MRI from what we were told by our pediatric neurologist at the University of Kentucky. Overall, I don't think we received any earth shattering new information, but I felt much better knowing he was an expert and has seen hundreds of kids with PMG instead of just one or two in his career. When he told me Ethan had some of the worst MRI scans he had ever seen, I was devastated. Then he told me that Ethan was one of the most advanced kids he had ever met. As he said, it goes to show that the scans don't mean much, every child is different. He told me Ethan was going to shock his doctors for the rest of his life. Coming from him, it gave me so much hope. I would say, even if you don't get much new information, get in touch with Dr. Dobyn's or Dr. Walsh. It will give you the peace of mind that you did everything you could. Kate, mom to (5), and Ethan (3), diagnosed with Bilateral PMG Subject: re: Dr. Dobyns To: polymicrogyria Date: Wednesday, June 25, 2008, 11:39 PM Hi, I know several members of this group have contacted Dr. Dobyns. I am curious if he has been able to provide more information than a regular pediatric neurologist? ? I have contemplated contacting him, but my significant other doesn't seem to think it's going to be very useful. The reason being is that is doesn't change to outcome of our situation. I realize that, however, he may be able to provide more specific information since he is an expert in pmg! I guess I am looking for a little insight from other member's experiences with him. I can be e-mailed at: swingline04@ msn.com thanks very much, wendy (mother to william r sided pmg) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 , We just took our two year old son to see Dr. Dobyns in June. My thoughts about this whole experience I guess is that I don't want to look back and say I wish we had explored hippotherapy or I wish we had seen Dr. Dobyns. You know? We thought he was just going to tell us once again that Manolo had DWV but he actually had new news for us - that he also has unilateral posterior PMG. While this info really doesn't change anything except increase Manolo's life long risk for seizures, it was helpful to have someone who is an expert on brain malformations take a close look at the MRI. Our nuerosurgeon and nuerologist at Children's Memorial in Chicago are great but even they didn't see this because it is only evident on a small part of his brain and they are not specifically experts about brain malformations. Like any doctor I think you have to take what he says with a grain of salt knowing that he knows how kids may typically progress with PMG or DW or both. But as we know as the parents of these kids, they are making their own way in the world and will continue to suprise us with their determination. Overall he was very positive about Manolo's longterm outlook although he did say it would be another year to a year and a half til he walks which was devasting to me. I've heard elsewhere that he tends to give the worst case scenario alot of time. .. .which in our case thankfully seems to be true because Manolo recently started taking up to 15 steps independently.. I recommend going because you never know. Maybe he'll tell you the same old thing. Maybe he'll explain it in a way that better helps you understand it. Maybe he'll tell you something new. Maybe he'll give you the peace of mind that at least you explored this option in learning about PMG and your son's brain. Good luck with your decision. re: Dr. Dobyns Hi, I know several members of this group have contacted Dr. Dobyns. I am curious if he has been able to provide more information than a regular pediatric neurologist? ? I have contemplated contacting him, but my significant other doesn't seem to think it's going to be very useful. The reason being is that is doesn't change to outcome of our situation. I realize that, however, he may be able to provide more specific information since he is an expert in pmg! I guess I am looking for a little insight from other member's experiences with him. I can be e-mailed at: swingline04@ msn.com thanks very much, wendy (mother to william r sided pmg) __.._,_.___ Messages in this topic (69) Reply (via web post) | Start a new topic Messages | Files | Photos | Links | Database | Polls | Members | Calendar MARKETPLACE ________________________________ Blockbuster is giving away a FREE trial of - Blockbuster Total Access. Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Recent Activity * 1 New Members * 4 New PhotosVisit Your Group Yahoo! Health Heartburn or Worse What symptoms are most serious? Meditation and Lovingkindness A Yahoo! Group to share and learn. Dog Groups on Yahoo! Groups discuss everything related to dogs. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 With Marz, her neuro was saying she had Pachygyria. He also discouraged us from seeing Dobyns, saying his specialty was lissencephaly (which is part true, all neuronal migration disorders are his specialty). However Marz's radiology report said it was PMG and something called Heterotopia. It was nice to know just what she had, and Dobyns provided that in detail with explainations (I believe you'd get the same quality of information from the Walsh Lab, they are said to be just as good as Dobyns). Dobyns also provided some suggestions for seizure medication. He also provided my husband's older children with some piece of mind that they were at very low risk of having a child with PMG. Obviously, the decision is up to you. For us it was nice knowing what the treatment options were. Even if it turns out there is nothing new to try or do, at least you will have the satisfaction of knowing you have done everything possible to help be the best he can, and that is something. Penny - Step Mom to Marz (16 YO next month) - Unilateral PMG-PNH swingline04 wrote: Hi, I know several members of this group have contacted Dr. Dobyns. I am curious if he has been able to provide more information than a regular pediatric neurologist?? I have contemplated contacting him, but my significant other doesn't seem to think it's going to be very useful. The reason being is that is doesn't change to outcome of our situation. I realize that, however, he may be able to provide more specific information since he is an expert in pmg! I guess I am looking for a little insight from other member's experiences with him. I can be e-mailed at: swingline04@... thanks very much, wendy (mother to william r sided pmg) Quote Link to comment Share on other sites More sharing options...
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