Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 Hi My name is Diane and my daughter is 3. She was diagnosed with PMG by Dr. Dobyns about 2 years ago. We live in Indianapolis. Nisha has left hemi CP and some language processing issues. She is doing very well and has exceeded our expectations. I am on this list serve that has 1700 people for all ages with hemiphresis. They are such a great support on raising your child with all the IEP, therapy, sensory and behavior issues we face daily. I am glad to find this group because the hemi dx seems to be mainly a stroke and that gives you different challenges. Diane Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 Hi Diane, We have a case of unilateral (right hemisphere) PMG with left hemiparesis/ideomotor apraxia, along with sensory, learning, and social skill issues (diagnosed with Asperger's) as a result of the lobes affected. It seems like a very different diagnosis than bilateral PMG, " less worse, " as our doctor put it, but definetely with its own set of unique challenges. It has actually been hard to convince others of the need for services because she " looks " fine but her 'wiring problem' become apparent in academic and social situations as any kind of abstract thinking (right brain skills) and communication integration are a challenge. We are doing OT and group ST/OT (known by the kids as frienship groups) and our hoping that the school district will finally cover speech therapy in the school this next year. I am very interested to share with you about this and am glad you found the group. Take care and welcome, Holman wrote: > > > Hi Diane! > > My daughter is 13 years, with right hemiparesis. It was originally > thought to be a stroke. Diagnosis was altered about 3 years ago when > she got her first MRI since 1997. Hadn't needed a new one, and that > new one was a shock! > > We are in Ohio. Welcome! > > I'm going to see Dr Dobyns in Seattle once he gets settled. For us it > is a full circle. My daughter was misdiagnosed at Seattle Childrens, > and I swore i'd never step foot there again. Never say never-which is > a lesson my daughter has been teaching me for 12 plus years!! > > > > Sent from my iPhone > > On May 24, 2010, at 5:06 PM, " Diane Roy " <deszone25@... > <mailto:deszone25%40hotmail.com>> wrote: > > Hi My name is Diane and my daughter is 3. She was diagnosed with PMG > by Dr. Dobyns about 2 years ago. We live in Indianapolis. Nisha has > left hemi CP and some language processing issues. She is doing very > well and has exceeded our expectations. I am on this list serve that > has 1700 people for all ages with hemiphresis. They are such a great > support on raising your child with all the IEP, therapy, sensory and > behavior issues we face daily. I am glad to find this group because > the hemi dx seems to be mainly a stroke and that gives you different > challenges. > Diane Roy > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 , How old is your child? Diane Re: New to group Hi Diane, We have a case of unilateral (right hemisphere) PMG with left hemiparesis/ideomotor apraxia, along with sensory, learning, and social skill issues (diagnosed with Asperger's) as a result of the lobes affected. It seems like a very different diagnosis than bilateral PMG, " less worse, " as our doctor put it, but definetely with its own set of unique challenges. It has actually been hard to convince others of the need for services because she " looks " fine but her 'wiring problem' become apparent in academic and social situations as any kind of abstract thinking (right brain skills) and communication integration are a challenge. We are doing OT and group ST/OT (known by the kids as frienship groups) and our hoping that the school district will finally cover speech therapy in the school this next year. I am very interested to share with you about this and am glad you found the group. Take care and welcome, Holman wrote: > > > Hi Diane! > > My daughter is 13 years, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2011 Report Share Posted June 15, 2011 Hi Glad Ella is going well. What sort of seizures has she developed? I hope the MRI gives you some answers so that you can treat her. We were told Siera's brain isnt developing the way it should be for her age, she is still not holding her head up at 9mths. I look forward to keeping in touch. Hope you can email and let me know how Ella's scan goes. All the best Kat ________________________________ To: polymicrogyria Sent: Tue, 7 June, 2011 6:55:36 AM Subject: Re: New to group Kat, Oh, by the way, my daughter Ella is doing good. She is having seizures, though not infantile spasms any more, and we are trying to figure out how to address them. She goes for another MRI next month because the spikes on her EEG moved from the right side (where her PMG is) to the left--which is puzzling because that side did not show any dysplasia on the scan from two years ago. -- Quote Link to comment Share on other sites More sharing options...
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