Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 my son is 3 last year he had an mri that showed bilateral perisylvian polymicrogyria he has spasticity in both legs he wears AFOs he walks ok just toe walking his right arm is weak but he uses it alright he has oral motor problems he has low muscle tone in his mouth when he eats alot of food comes out and he constantly drools he tries very hard to talk and has improved slowly we use sign language somewhat to aide with his lack of communication he also has hypoplasia of the optic nerves and we think he is almost blind in his right eye he has seen alot of DR.s but it seems like we dont get much help because he is not the worst case and it sort of seems like they dont know much about what he has genetics was more helpful than anyone else but it seems like we get bounced around alot he has all these problems but they are somewhat mild and i was just wondering would that DR. Dobyns see someone like my son and if so is it very exspensive to see him and how would we go about making an appointment with him and i also wondered if anyone else has had the same kind of problems we do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 It is not expensive to see Dr. Dobyns, our insurance covered the visit when was 4... but I would definately recommend it. Our son has the same as yours does..with some differences, and probably more severity since he can not walk and his ability to eat has regressed continually over the years.. but Dobyns shed light where there was none. Many families can't afford to actually go there, and they send their child's Mri's into his clinic for analysis... do it.. it can't hurt. Our neurologist was completely wrong...and after she consulted with Dobyns's results, she conferred and even confessed that it was a learning process for their neurological team as well. This is a condition that is hard to find data on... , by the way, is 9 years old and is happy and healthy despite his many medical issues. He has a wonderful life... and we are lucky. Good luck... I dont know the actual number for Dobyns...but someone does out there... it was in 2001 that I went... , Mom to skylarjo_c wrote: my son is 3 last year he had an mri that showed bilateral perisylvian polymicrogyria he has spasticity in both legs he wears AFOs he walks ok just toe walking his right arm is weak but he uses it alright he has oral motor problems he has low muscle tone in his mouth when he eats alot of food comes out and he constantly drools he tries very hard to talk and has improved slowly we use sign language somewhat to aide with his lack of communication he also has hypoplasia of the optic nerves and we think he is almost blind in his right eye he has seen alot of DR.s but it seems like we dont get much help because he is not the worst case and it sort of seems like they dont know much about what he has genetics was more helpful than anyone else but it seems like we get bounced around alot he has all these problems but they are somewhat mild and i was just wondering would that DR. Dobyns see someone like my son and if so is it very exspensive to see him and how would we go about making an appointment with him and i also wondered if anyone else has had the same kind of problems we do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Hello everyone~ I haven't contacted Dr. Dobyns since 2000, but the last contact info I have for him follows: B. Dobyns The University of Chicago Department of Human Genetics Room L163, MC 2050 5841 s. land Avenue Chicago, IL 60637 Phone fax WBD@.... Best~ JULIE HASSELBERGER wrote: > It is not expensive to see Dr. Dobyns, our insurance covered the visit > when was 4... but I would definately recommend it. Our son has > the same as yours does..with some differences, and probably more > severity since he can not walk and his ability to eat has regressed > continually over the years.. but Dobyns shed light where there was none. > > Many families can't afford to actually go there, and they send their > child's Mri's into his clinic for analysis... do it.. it can't hurt. > Our neurologist was completely wrong...and after she consulted with > Dobyns's results, she conferred and even confessed that it was a > learning process for their neurological team as well. > > This is a condition that is hard to find data on... , by the > way, is 9 years old and is happy and healthy despite his many medical > issues. He has a wonderful life... and we are lucky. > > Good luck... I dont know the actual number for Dobyns...but someone > does out there... it was in 2001 that I went... > > , Mom to > > skylarjo_c <skylarjo_c@... <mailto:skylarjo_c%40yahoo.com>> wrote: > my son is 3 last year he had an mri that showed bilateral perisylvian > polymicrogyria he has spasticity in both legs he wears AFOs he walks ok > just toe walking his right arm is weak but he uses it alright he has > oral motor problems he has low muscle tone in his mouth when he eats > alot of food comes out and he constantly drools he tries very hard to > talk and has improved slowly we use sign language somewhat to aide with > his lack of communication he also has hypoplasia of the optic nerves > and we think he is almost blind in his right eye he has seen alot of > DR.s but it seems like we dont get much help because he is not the > worst case and it sort of seems like they dont know much about what he > has genetics was more helpful than anyone else but it seems like we get > bounced around alot he has all these problems but they are somewhat > mild and i was just wondering would that DR. Dobyns see someone like my > son and if so is it very exspensive to see him and how would we go > about making an appointment with him and i also wondered if anyone else > has had the same kind of problems we do. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Just some helpful info? I live in melbourne, australia. I too contacted dr dobyns to look at my sons scans but he kindly emailed me back to say that his mentor and colleague works in melbourne! wow! His name is Dr Rick Leventer and he works from the Royal Childerns Hospital in melbourne. Dr Dobyns said that Rick had the same if not more experience in pmg and so not to bother sending my sons films to him. I see Dr leventer next week which should be great because he has reviewed over 6000 scans of pmg and knows this field very well! Pmg is his specialty. Justv thought i would share this other avenue of expertise to our complex kids! Beth (Tron 12 months, pmg + Dillon 2.5yrs) > > my son is 3 last year he had an mri that showed bilateral perisylvian > polymicrogyria he has spasticity in both legs he wears AFOs he walks ok > just toe walking his right arm is weak but he uses it alright he has > oral motor problems he has low muscle tone in his mouth when he eats > alot of food comes out and he constantly drools he tries very hard to > talk and has improved slowly we use sign language somewhat to aide with > his lack of communication he also has hypoplasia of the optic nerves > and we think he is almost blind in his right eye he has seen alot of > DR.s but it seems like we dont get much help because he is not the > worst case and it sort of seems like they dont know much about what he > has genetics was more helpful than anyone else but it seems like we get > bounced around alot he has all these problems but they are somewhat > mild and i was just wondering would that DR. Dobyns see someone like my > son and if so is it very exspensive to see him and how would we go > about making an appointment with him and i also wondered if anyone else > has had the same kind of problems we do. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Beth.. that is awesome..please make sure to share the results of Dr. Leventer's analysis. Glad to hear that there was such a great connection for you there... diltor1 wrote: Just some helpful info? I live in melbourne, australia. I too contacted dr dobyns to look at my sons scans but he kindly emailed me back to say that his mentor and colleague works in melbourne! wow! His name is Dr Rick Leventer and he works from the Royal Childerns Hospital in melbourne. Dr Dobyns said that Rick had the same if not more experience in pmg and so not to bother sending my sons films to him. I see Dr leventer next week which should be great because he has reviewed over 6000 scans of pmg and knows this field very well! Pmg is his specialty. Justv thought i would share this other avenue of expertise to our complex kids! Beth (Tron 12 months, pmg + Dillon 2.5yrs) > > my son is 3 last year he had an mri that showed bilateral perisylvian > polymicrogyria he has spasticity in both legs he wears AFOs he walks ok > just toe walking his right arm is weak but he uses it alright he has > oral motor problems he has low muscle tone in his mouth when he eats > alot of food comes out and he constantly drools he tries very hard to > talk and has improved slowly we use sign language somewhat to aide with > his lack of communication he also has hypoplasia of the optic nerves > and we think he is almost blind in his right eye he has seen alot of > DR.s but it seems like we dont get much help because he is not the > worst case and it sort of seems like they dont know much about what he > has genetics was more helpful than anyone else but it seems like we get > bounced around alot he has all these problems but they are somewhat > mild and i was just wondering would that DR. Dobyns see someone like my > son and if so is it very exspensive to see him and how would we go > about making an appointment with him and i also wondered if anyone else > has had the same kind of problems we do. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 I felt that seeing Dr. Dobyns was one of the most worthwhile things that has be done for my step daughter. We learned more from him than any doctor has ever told my husband in the past, and got an actual diagnosis. In addition, Dr. Dobyns likely knows of doctors in your area that have some knowledge about PMG and may be better able to treat your son. If you live too far to travel and see him he will accept medical records and MRI films from you doctor and send back a report on his findings and any possible recommendations. Penny - Step Mom to nela - 14 yrs old Unilateral PMG-PNH skylarjo_c wrote: my son is 3 last year he had an mri that showed bilateral perisylvian polymicrogyria he has spasticity in both legs he wears AFOs he walks ok just toe walking his right arm is weak but he uses it alright he has oral motor problems he has low muscle tone in his mouth when he eats alot of food comes out and he constantly drools he tries very hard to talk and has improved slowly we use sign language somewhat to aide with his lack of communication he also has hypoplasia of the optic nerves and we think he is almost blind in his right eye he has seen alot of DR.s but it seems like we dont get much help because he is not the worst case and it sort of seems like they dont know much about what he has genetics was more helpful than anyone else but it seems like we get bounced around alot he has all these problems but they are somewhat mild and i was just wondering would that DR. Dobyns see someone like my son and if so is it very exspensive to see him and how would we go about making an appointment with him and i also wondered if anyone else has had the same kind of problems we do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 , I have a 20 year old son who was dx w/ a brain bleed after he had seizures in the NICU, then w/ schizencephaly in 5th grade after a seizure. When he was approx 17 I tried to get him in a study for schizencephaly at Bosten University. After they reviewed his MRI they told me that he had polymicrogyria. He is blessed in that he is really high functioning and doesn't have ongoing seizures but he has always struggled in school and socially. He developed orthopedic problems in 9th grade and had to have reconstructive surgery on both feet and continues to have pain and walks w/ a limp and one leg is now longer than the other. There really isn't any help out there and he has really fallen through the cracks. You mentioned that you emailed Dr. Dobyns. I'd like to be able to contact him. I'm in CA. but maybe I can sent him Alijah's films or he could refer us to someone. If you could give me Dr. Dobyns email address I'd appreciate it. Thanks, Robin JULIE HASSELBERGER wrote: Beth.. that is awesome..please make sure to share the results of Dr. Leventer's analysis. Glad to hear that there was such a great connection for you there... diltor1 wrote: Just some helpful info? I live in melbourne, australia. I too contacted dr dobyns to look at my sons scans but he kindly emailed me back to say that his mentor and colleague works in melbourne! wow! His name is Dr Rick Leventer and he works from the Royal Childerns Hospital in melbourne. Dr Dobyns said that Rick had the same if not more experience in pmg and so not to bother sending my sons films to him. I see Dr leventer next week which should be great because he has reviewed over 6000 scans of pmg and knows this field very well! Pmg is his specialty. Justv thought i would share this other avenue of expertise to our complex kids! Beth (Tron 12 months, pmg + Dillon 2.5yrs) > > my son is 3 last year he had an mri that showed bilateral perisylvian > polymicrogyria he has spasticity in both legs he wears AFOs he walks ok > just toe walking his right arm is weak but he uses it alright he has > oral motor problems he has low muscle tone in his mouth when he eats > alot of food comes out and he constantly drools he tries very hard to > talk and has improved slowly we use sign language somewhat to aide with > his lack of communication he also has hypoplasia of the optic nerves > and we think he is almost blind in his right eye he has seen alot of > DR.s but it seems like we dont get much help because he is not the > worst case and it sort of seems like they dont know much about what he > has genetics was more helpful than anyone else but it seems like we get > bounced around alot he has all these problems but they are somewhat > mild and i was just wondering would that DR. Dobyns see someone like my > son and if so is it very exspensive to see him and how would we go > about making an appointment with him and i also wondered if anyone else > has had the same kind of problems we do. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 My son has bilateral perisylvian polymicrogyria and he has some of the same issues as your son. He has spaticity in his left let and arm and some issues in his right leg. He toe walks on the left and wears orthotics on both feet and a hand splint. Feeding issues including drooling and not be able to keep stuff in his mouth, but he has greatly improved. Same issues with speech as well, we use signs and are looking into an electronic picture communication device for him. Evan started walking about 8 weeks ago and is doing well, although we do have a convaid cruiser wheelchair for transporting in the community. Having a child that is mild or a low moderate in disabilities is like a double edged sword because as a parent you are grateful for the gains that they make but the child is also overlooked as needing equipment or services. I think at this point that is one of the most frustrating things that happen with Evan. mom to Evan 2.5yrs BPP, Left hemiplegia CP skylarjo_c wrote: my son is 3 last year he had an mri that showed bilateral perisylvian polymicrogyria he has spasticity in both legs he wears AFOs he walks ok just toe walking his right arm is weak but he uses it alright he has oral motor problems he has low muscle tone in his mouth when he eats alot of food comes out and he constantly drools he tries very hard to talk and has improved slowly we use sign language somewhat to aide with his lack of communication he also has hypoplasia of the optic nerves and we think he is almost blind in his right eye he has seen alot of DR.s but it seems like we dont get much help because he is not the worst case and it sort of seems like they dont know much about what he has genetics was more helpful than anyone else but it seems like we get bounced around alot he has all these problems but they are somewhat mild and i was just wondering would that DR. Dobyns see someone like my son and if so is it very exspensive to see him and how would we go about making an appointment with him and i also wondered if anyone else has had the same kind of problems we do. Mom 2 Evan Spastic Hemiplegia Left 19 months, 5 nda and SM to 14 --------------------------------- Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 I do not have the most recent info.. Will someone please post the Dr. Dobyns contact details again for Robin? Robin, he is in Chicago, and I am sure they will be accomodating for you. I have to remember to get Dobyns added into my address book again... I should have it, I went there!! lol. But so many of these awesome families have it.. someone will post.. if not, keep requesting.. I am sure I have it buried in paperwork somewhere here. Good luck.. Robin wrote: , I have a 20 year old son who was dx w/ a brain bleed after he had seizures in the NICU, then w/ schizencephaly in 5th grade after a seizure. When he was approx 17 I tried to get him in a study for schizencephaly at Bosten University. After they reviewed his MRI they told me that he had polymicrogyria. He is blessed in that he is really high functioning and doesn't have ongoing seizures but he has always struggled in school and socially. He developed orthopedic problems in 9th grade and had to have reconstructive surgery on both feet and continues to have pain and walks w/ a limp and one leg is now longer than the other. There really isn't any help out there and he has really fallen through the cracks. You mentioned that you emailed Dr. Dobyns. I'd like to be able to contact him. I'm in CA. but maybe I can sent him Alijah's films or he could refer us to someone. If you could give me Dr. Dobyns email address I'd appreciate it. Thanks, Robin JULIE HASSELBERGER wrote: Beth.. that is awesome..please make sure to share the results of Dr. Leventer's analysis. Glad to hear that there was such a great connection for you there... diltor1 wrote: Just some helpful info? I live in melbourne, australia. I too contacted dr dobyns to look at my sons scans but he kindly emailed me back to say that his mentor and colleague works in melbourne! wow! His name is Dr Rick Leventer and he works from the Royal Childerns Hospital in melbourne. Dr Dobyns said that Rick had the same if not more experience in pmg and so not to bother sending my sons films to him. I see Dr leventer next week which should be great because he has reviewed over 6000 scans of pmg and knows this field very well! Pmg is his specialty. Justv thought i would share this other avenue of expertise to our complex kids! Beth (Tron 12 months, pmg + Dillon 2.5yrs) > > my son is 3 last year he had an mri that showed bilateral perisylvian > polymicrogyria he has spasticity in both legs he wears AFOs he walks ok > just toe walking his right arm is weak but he uses it alright he has > oral motor problems he has low muscle tone in his mouth when he eats > alot of food comes out and he constantly drools he tries very hard to > talk and has improved slowly we use sign language somewhat to aide with > his lack of communication he also has hypoplasia of the optic nerves > and we think he is almost blind in his right eye he has seen alot of > DR.s but it seems like we dont get much help because he is not the > worst case and it sort of seems like they dont know much about what he > has genetics was more helpful than anyone else but it seems like we get > bounced around alot he has all these problems but they are somewhat > mild and i was just wondering would that DR. Dobyns see someone like my > son and if so is it very exspensive to see him and how would we go > about making an appointment with him and i also wondered if anyone else > has had the same kind of problems we do. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Hi Penny, What is the charge for sending records to Dr. Dobyns? I thought about taking my son and even had an appointment once, but it is so depressing and anxiety producing for him to continuously go to new drs I decided not to at the time, but sending records may be a good first step. Joanne Re: we need help I felt that seeing Dr. Dobyns was one of the most worthwhile things that has be done for my step daughter. We learned more from him than any doctor has ever told my husband in the past, and got an actual diagnosis. In addition, Dr. Dobyns likely knows of doctors in your area that have some knowledge about PMG and may be better able to treat your son. If you live too far to travel and see him he will accept medical records and MRI films from you doctor and send back a report on his findings and any possible recommendations. Penny - Step Mom to nela - 14 yrs old Unilateral PMG-PNH skylarjo_c wrote: my son is 3 last year he had an mri that showed bilateral perisylvian polymicrogyria he has spasticity in both legs he wears AFOs he walks ok just toe walking his right arm is weak but he uses it alright he has oral motor problems he has low muscle tone in his mouth when he eats alot of food comes out and he constantly drools he tries very hard to talk and has improved slowly we use sign language somewhat to aide with his lack of communication he also has hypoplasia of the optic nerves and we think he is almost blind in his right eye he has seen alot of DR.s but it seems like we dont get much help because he is not the worst case and it sort of seems like they dont know much about what he has genetics was more helpful than anyone else but it seems like we get bounced around alot he has all these problems but they are somewhat mild and i was just wondering would that DR. Dobyns see someone like my son and if so is it very exspensive to see him and how would we go about making an appointment with him and i also wondered if anyone else has had the same kind of problems we do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 I recently talked to him, so I think all this is accurate.... B. Dobyns, MD, PhD University of Chicago Department of Human Genetics 5841 S. land Avenue Room L151, MC 0077 Chicago, IL 60637 Mail films to: 920 E. 58th Street CLSC 319 Chicago, IL 60637 Email wbd@... Office Phone Office Fax > my son is 3 last year he had an mri that showed bilateral perisylvian > polymicrogyria he has spasticity in both legs he wears AFOs he walks ok > just toe walking his right arm is weak but he uses it alright he has > oral motor problems he has low muscle tone in his mouth when he eats > alot of food comes out and he constantly drools he tries very hard to > talk and has improved slowly we use sign language somewhat to aide with > his lack of communication he also has hypoplasia of the optic nerves > and we think he is almost blind in his right eye he has seen alot of > DR.s but it seems like we dont get much help because he is not the > worst case and it sort of seems like they dont know much about what he > has genetics was more helpful than anyone else but it seems like we get > bounced around alot he has all these problems but they are somewhat > mild and i was just wondering would that DR. Dobyns see someone like my > son and if so is it very exspensive to see him and how would we go > about making an appointment with him and i also wondered if anyone else > has had the same kind of problems we do. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Joanne, I'm not sure of the cost. I'm sure if you email him, le will get back to you with info (le Lorenz works for Dr. Dobyns and handles most of his correspondences, she's great). Do try to see him, it was a very positive experience for us. We expected to really get nothing more than confirmation from what the radiology report which indicated PMG (but the Neuro was saying Pachy). We got a much more accurate diagnosis and information about her particular malformations and explainations as to how they affected her (or didn't affect her). We also learned that the PMG was not what was causing most of nela's problems. The severe impact on her abilities likely has more to do with the Seizure disorder she has and meds she's taking for it. It gave us hope, brain malformations are not correctable but there is a chance of getting seizures under control and meds can be changed. Dobyns advised treating the Lennox Gastaut (LGS) more aggressively, and changing the meds she's on. She has been weaned from Klonopin and we've already seen a big change. As she gets older the LGS changes and she is having fewer seizures. It was nice to know that there is a chance she could regain some of her abilities (and in fact is, speech is showing a marked improvement already). We were not expecting to hear " it's not as bad as you'd think " . It was also empowering, we feel like there is something we can do to improve her life now, before we felt like it was hopeless. Dobyn's insights also gives her Neuro some direction that he was not going in previously. The most important thing to know is that every child is different and it is my opinion that nobody has more answers about your child's particular variation of PMG than Dr. Dobyns (except for maybe Dr. Leventer in Australia). Our theory going in was; regardless of what we are told, we will know and can plan accordingly. The idea was that we needed to know as much as we could to ensure we were doing the right things for nela. Penny swebar@... wrote: Hi Penny, What is the charge for sending records to Dr. Dobyns? I thought about taking my son and even had an appointment once, but it is so depressing and anxiety producing for him to continuously go to new drs I decided not to at the time, but sending records may be a good first step. Joanne Re: we need help I felt that seeing Dr. Dobyns was one of the most worthwhile things that has be done for my step daughter. We learned more from him than any doctor has ever told my husband in the past, and got an actual diagnosis. In addition, Dr. Dobyns likely knows of doctors in your area that have some knowledge about PMG and may be better able to treat your son. If you live too far to travel and see him he will accept medical records and MRI films from you doctor and send back a report on his findings and any possible recommendations. Penny - Step Mom to nela - 14 yrs old Unilateral PMG-PNH skylarjo_c wrote: my son is 3 last year he had an mri that showed bilateral perisylvian polymicrogyria he has spasticity in both legs he wears AFOs he walks ok just toe walking his right arm is weak but he uses it alright he has oral motor problems he has low muscle tone in his mouth when he eats alot of food comes out and he constantly drools he tries very hard to talk and has improved slowly we use sign language somewhat to aide with his lack of communication he also has hypoplasia of the optic nerves and we think he is almost blind in his right eye he has seen alot of DR.s but it seems like we dont get much help because he is not the worst case and it sort of seems like they dont know much about what he has genetics was more helpful than anyone else but it seems like we get bounced around alot he has all these problems but they are somewhat mild and i was just wondering would that DR. Dobyns see someone like my son and if so is it very exspensive to see him and how would we go about making an appointment with him and i also wondered if anyone else has had the same kind of problems we do. Quote Link to comment Share on other sites More sharing options...
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