Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 Does anyone have a child with unilateral polymicrogyria? My son, , was originally diagnosed with pacygyria in the left hemisphere. I sent some MR images to Dr. Dobyns in Chicago and he thought it was more likely to be polymicrogyria. is not very handicapped. He met all his milestones and is currently in 1st grade at a regular school. Recently he has had seizures which have been described as Lennox-Gastaut. I'm curious to see if there is anyone out there like my son. -Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 Steve, Our son has PMG in left hemisphere only and sounds similar to . It also sounds as though Nathen has done extremely well at school. Do you know the extent of the PMG on the left side? what's his speech like? Has he got any weakness down his right side. is 5 next month and has right sided hemiparisis (weakness) and struggles terribly with his speech. Other than that he does very well and understands everything. Epilepsy has been a problem and is quite common in children with PMG, however he is taking meds and currently has good control. Hope this helps to know your not alone Tony and Unilateral polymicrogyria > Does anyone have a child with unilateral polymicrogyria? My son, > , was originally diagnosed with pacygyria in the left > hemisphere. I sent some MR images to Dr. Dobyns in Chicago and he > thought it was more likely to be polymicrogyria. is not very > handicapped. He met all his milestones and is currently in 1st grade > at a regular school. Recently he has had seizures which have been > described as Lennox-Gastaut. I'm curious to see if there is anyone > out there like my son. > -Steve > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 Hi Steve, My son is seven and has polymicrogyria on the right side of his brain. He had done well in school until he began having seizures at age 5 and since then he has been going downhill and losing skills he previously had. We can't seem to find a good med to stop the activity. The doctors can't even record much yet - all they seem to see is subclinical activity. We are trying very hard to find a solution for him. His motor skills, speech, cognitive ability and emotional stability have all suffered since the seizures began. Let me know what meds you have tried. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 > Steve, > Our son has PMG in left hemisphere only and sounds similar to . It > also sounds as though Nathen has done extremely well at school. Do you know > the extent of the PMG on the left side? what's his speech like? Has he got > any weakness down his right side. > is 5 next month and has right sided hemiparisis (weakness) and > struggles terribly with his speech. Other than that he does very well and > understands everything. Epilepsy has been a problem and is quite common in > children with PMG, however he is taking meds and currently has good control. > Hope this helps to know your not alone > Tony and > Thanks for responding. has some trouble with speech. He speaks slower than most kids his age and he struggles to find words sometimes. Since the new seizures started, we have noticed a steady decline in his speech.The seizures were well controlled until lately when he stated having absence and atonic seizures. What kind of seizures does your son have? What meds is he on? -Steve Unilateral polymicrogyria > > > > Does anyone have a child with unilateral polymicrogyria? My son, > > , was originally diagnosed with pacygyria in the left > > hemisphere. I sent some MR images to Dr. Dobyns in Chicago and he > > thought it was more likely to be polymicrogyria. is not very > > handicapped. He met all his milestones and is currently in 1st grade > > at a regular school. Recently he has had seizures which have been > > described as Lennox-Gastaut. I'm curious to see if there is anyone > > out there like my son. > > -Steve > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 > Hi Steve, > My son is seven and has polymicrogyria on the right side of his brain. He had done well in school until he began having seizures at age 5 and since then he has been going downhill and losing skills he previously had. We can't seem to find a good med to stop the activity. The doctors can't even record much yet - all they seem to see is subclinical activity. We are trying very hard to find a solution for him. His motor skills, speech, cognitive ability and emotional stability have all suffered since the seizures began. Let me know what meds you have tried. > Joanne Joanne, Your son sounds just like . He has recently been having spike and waves during sleep and some while awake with no clinical seizures. We didn't know about it until they did an EEG at the right time. We knew that something was wrong because of the same declines that you describe, but the doctor we were seeing basically told us we should be happy that he is function as well as he is. So we dumped him immediately. Once we found the right doctor he recognized the problem and stabilized it. After a 2 night stay in the hospital with IV meds, Ativan, Depakote, and Zonegran and EEG monitoring he was like a new kid. Everyone who sees him often, like his physical therapist, could notice a big difference in his motor skills, speech, emotional and cognitive abilities. Since then, he has done well on Depakote and Zonegran, although it has only been a couple of weeks. We are hoping that Zonegran will be the solution. It really important to have a doctor who has experience with kids like ours. They are very unique. What meds have you tried? Have you noticed any jerking or nodding or staring spells? Is he tired often? He could be having spike and wave during slow sleep which is causing him to not sleep well and to be sleep deprived which would lower his threshold while awake and cause similar awake activity. I beleive this is what was going on with . -Steve Quote Link to comment Share on other sites More sharing options...
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