Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 Another thing about the EPGP, is that if your kid has multiple brain abnormalities, they may not qualify. Maureen has both PMG and AgCC, and they didn't want her. We have seen both Dobyns and Sherr, and they both had interesting things to say, but no answers. Sent from my iPhone On May 13, 2011, at 1:28 PM, " catherine.jacobson " wrote: > Dr. Elliot Sherr and the EPGP study are at UCSF, not SFSU. We participated and got no medical advice for PMG or epilepsy. That being said, it is a really good idea to participate in this research as it will end up helping us understand epilepsy in the long run. > > > > > > > > NY: Orrin Devinsky and Kuzniecky at NYU, > > SEattle: Dr. Dobyns at Seattle Children's > > Boston: Dr. Walsh at Boston Children's > > San Francisco: Dr.Elliott Sherr at SFSU (see website on agenesis of the corpus callosum) > > > > ** I highly recommend participating in studies (Epilepsy Phenome/Genome Project at NYU, there is also one at SFSU), as the parents get FREE medical advice and access to specialists! > > > > Good luck! > > Thea in NY > > > > > > > > > > > > > > > > > > outside experts > > > > > > > > > > > > I have a dear friend whose baby was diagnosed with unilateral PMG. The baby (8 months) has left sided weakness. Are there any centers of excellence, doctors who specialize in PMG or special physical therapy techniques that the group recommends. Her baby has not had a seizure but the neurologist was surprised by this. Any luck with seizure prevention. Is anyone doing any research with the disorder with stem cells or anything cutting edge. We are in the Midwest but would travel anywhere. > > > > Thanks so much, Beck > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 Thanks so much to everyone for all the great answers--I will share with my friend. Her baby is eight months old and hitting benchmarks except the weakness on the left. I hope I can support her with any information I get from this very helpful group. Thanks again, ________________________________ To: polymicrogyria Sent: Fri, May 13, 2011 2:40:09 PM Subject: Re: Re: outside experts Thanks for the correction, . Thea outside experts > > > > > > I have a dear friend whose baby was diagnosed with unilateral PMG. The baby (8 >months) has left sided weakness. Are there any centers of excellence, doctors >who specialize in PMG or special physical therapy techniques that the group >recommends. Her baby has not had a seizure but the neurologist was surprised by >this. Any luck with seizure prevention. Is anyone doing any research with the >disorder with stem cells or anything cutting edge. We are in the Midwest but >would travel anywhere. > > Thanks so much, Beck > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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