Guest guest Posted May 28, 2011 Report Share Posted May 28, 2011 Hi all, My son is 3 years old. He was diagnosed with PMG when he was 2 years old, although we knew since he was 7 months old that he has global developmental delays. He was doing fine and responding well to his therapies until he was two and a half when he started having clusters of seizures. It was very difficult times for him and us to fight his seizures until we started him on the Ketogenic diet, and as they say it's a biblical treatment for seizures. Unfortunately after two months of breakthrough seizures, my son regressed and almost lost whatever skills he gained. He can't do anything independently, but if there is one thing he can do it's definitely filling my soul with strength and love. I would appreciate it if anyone can share what kind of therapies or treatments they tried for their PMG kids and helped. And recommends books, researches, or papers about this rare condition. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2011 Report Share Posted May 29, 2011 Welcome to the group! My daughter is 4 and has unilateral PMG as a result left hemi CP and partial and complex partial seizures. She is now on Keppra which has been such a great thing to get some control. She now sleeps well at night and is learning and focused better. We do all kinds of therapy I recommend reading The Brain that Changes Itself (understanding where rehab can take you) and The Explosive Child(behavior challenges kids like ours) This condition is a brain injury of its own and is very similar to strokes. I believe that Nisha runs about 6 mos late on her development be patient. Controlling the seizures is the most important. When we met Dr. Dobyns he said get other opinions don't give up or call him he is the expert on PMG. Diane mom Nisha 4LH seizures and 3 others To: polymicrogyria From: typho0o0n@... Date: Sun, 29 May 2011 04:37:23 +0000 Subject: I'm new Hi all, My son is 3 years old. He was diagnosed with PMG when he was 2 years old, although we knew since he was 7 months old that he has global developmental delays. He was doing fine and responding well to his therapies until he was two and a half when he started having clusters of seizures. It was very difficult times for him and us to fight his seizures until we started him on the Ketogenic diet, and as they say it's a biblical treatment for seizures. Unfortunately after two months of breakthrough seizures, my son regressed and almost lost whatever skills he gained. He can't do anything independently, but if there is one thing he can do it's definitely filling my soul with strength and love. I would appreciate it if anyone can share what kind of therapies or treatments they tried for their PMG kids and helped. And recommends books, researches, or papers about this rare condition. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 Thanks Diane!! " The that changes itself " sounds really interesting. Is Dr. Dobyns in USA? or Canada? Nadeen > > > Welcome to the group! My daughter is 4 and has unilateral PMG as a result left hemi CP and partial and complex partial seizures. She is now on Keppra which has been such a great thing to get some control. She now sleeps well at night and is learning and focused better. We do all kinds of therapy I recommend reading The Brain that Changes Itself (understanding where rehab can take you) and The Explosive Child(behavior challenges kids like ours) This condition is a brain injury of its own and is very similar to strokes. I believe that Nisha runs about 6 mos late on her development be patient. Controlling the seizures is the most important. When we met Dr. Dobyns he said get other opinions don't give up or call him he is the expert on PMG. > Diane mom Nisha 4LH seizures and 3 others > > To: polymicrogyria > From: typho0o0n@... > Date: Sun, 29 May 2011 04:37:23 +0000 > Subject: I'm new > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi all, > > My son is 3 years old. He was diagnosed with PMG when he was 2 years old, although we knew since he was 7 months old that he has global developmental delays. > > He was doing fine and responding well to his therapies until he was two and a half when he started having clusters of seizures. It was very difficult times for him and us to fight his seizures until we started him on the Ketogenic diet, and as they say it's a biblical treatment for seizures. > > Unfortunately after two months of breakthrough seizures, my son regressed and almost lost whatever skills he gained. > > He can't do anything independently, but if there is one thing he can do it's definitely filling my soul with strength and love. > > > > I would appreciate it if anyone can share what kind of therapies or treatments they tried for their PMG kids and helped. And recommends books, researches, or papers about this rare condition. > > > > Thanks. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2011 Report Share Posted June 3, 2011 Seattle now he was in Chiacgo Re: I'm new Thanks Diane!! " The that changes itself " sounds really interesting. Is Dr. Dobyns in USA? or Canada? Nadeen > > > Welcome to the group! My daughter is 4 and has unilateral PMG as a result left hemi CP and partial and complex partial seizures. She is now on Keppra which has been such a great thing to get some control. She now sleeps well at night and is learning and focused better. We do all kinds of therapy I recommend reading The Brain that Changes Itself (understanding where rehab can take you) and The Explosive Child(behavior challenges kids like ours) This condition is a brain injury of its own and is very similar to strokes. I believe that Nisha runs about 6 mos late on her development be patient. Controlling the seizures is the most important. When we met Dr. Dobyns he said get other opinions don't give up or call him he is the expert on PMG. > Diane mom Nisha 4LH seizures and 3 others > > To: polymicrogyriayahoogroups (DOT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 If anyone lives near Toronto . . . there is a conference on " The Brain That Changes Itself " on June 17, 2011 held by Leading Edge Seminars. Here is the link: www.leadingedgeseminars.org/seminars/the-brain-that-changes-itself-the-neuroplas\ ticity-revolution-for-the-helping-professions.html Rocchina ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Fri, June 3, 2011 8:58:32 PM Subject: RE: Re: I'm new Seattle now he was in Chiacgo Re: I'm new Thanks Diane!! " The that changes itself " sounds really interesting. Is Dr. Dobyns in USA? or Canada? Nadeen > > > Welcome to the group! My daughter is 4 and has unilateral PMG as a result left >hemi CP and partial and complex partial seizures. She is now on Keppra which has >been such a great thing to get some control. She now sleeps well at night and is >learning and focused better. We do all kinds of therapy I recommend reading The >Brain that Changes Itself (understanding where rehab can take you) and The >Explosive Child(behavior challenges kids like ours) This condition is a brain >injury of its own and is very similar to strokes. I believe that Nisha runs >about 6 mos late on her development be patient. Controlling the seizures is the >most important. When we met Dr. Dobyns he said get other opinions don't give up >or call him he is the expert on PMG. > Diane mom Nisha 4LH seizures and 3 others > > To: polymicrogyriayahoogroups (DOT) ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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