Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Beth, This seems like a partial complex seizure which our kids condition make them as risk for. Here is a great websit: http://www.epilepsyfoundation.org/about/types/types/complex.cfm My opinion on treatment is controlling them and being prepared for emergency. Medication is so much better now it is a little tough to adjust to but so much nicer than seizures. I think at ten she maybe starting hormonal changes. My neurologist says you should be aggressive with this condition or it can get out of control. It is very scary and I hate the thought of meds or two meds or surgery but we want Nisha to have the opportunity to develop. This is not easy and my prayers are with you.I hope this helps,Diane To: polymicrogyria From: troutmanbeth@... Date: Sat, 1 Jan 2011 10:00:28 -0800 Subject: Seizures, etc. Hi Everyone, I have followed this site for quite awhile but have not had anything to ask or offer until now. My daughter, Elaina, is diagnosed with Pachygyria (thick gyri), along the spectrum of lissencephaly and polymicrogyria, but I think less common. We believe she has had her first seizure , which we (the neurologist, my husband, and I) were hoping would not occur until she hit adolescence since she hadn't had any to this point and she turns 10 on January 13. It seems that seizures generally occur at a much younger age with Pachygyria, like at birth to age 2 and it was thought that perhaps she would not have them until the hormone change began to stir things up. Anyway, the bus driver and assistant saw her right hand and leg start shaking as she grabbed hold of the driver's jacket, and a distant stare they couldn't break for several seconds, and then she came out of it. I have a message into our neurologist who is on vacation. Does anyone on this site have a child with Pachygyria, and if so, could you tell me your experience with seizures. Might this be one, and then maybe a long gap before more occur so no need for immediate medication. I dread the side effects I hear about, but am hopeful with the mention today of no side effects with at least one of the meds. Her entire brain is effected, so I am very worried she will lose functioning once the seizures begin. Do I need to medicate now, or can I wait. I will talk to my neurologist but would appreciate hearing from experience. Thanks so much. Happy New Year and God Bless. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 My son has Polymocrogyria and Pachygyria and he is currently on Keppra for seizures. Our neurologist did not tell us to medicate until we saw 2 seizures but after 2 said that we could not wait any longer. We are not seeing any side affects of the keppra and it seems to be working. good luck! esther > > Beth, This seems like a partial complex seizure which our kids condition > make them as risk for. Here is a great websit: > http://www.epilepsyfoundation.org/about/types/types/complex.cfm My > opinion on treatment is controlling them and being prepared for emergency. > Medication is so much better now it is a little tough to adjust to but so > much nicer than seizures. I think at ten she maybe starting hormonal > changes. My neurologist says you should be aggressive with this condition or > it can get out of control. It is very scary and I hate the thought of meds > or two meds or surgery but we want Nisha to have the opportunity to develop. > This is not easy and my prayers are with you.I hope this helps,Diane > > To: polymicrogyria > From: troutmanbeth@... > Date: Sat, 1 Jan 2011 10:00:28 -0800 > Subject: Seizures, etc. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone, > > > > I have followed this site for quite awhile but have not had anything to ask > or offer until now. My daughter, Elaina, is diagnosed with Pachygyria (thick > gyri), along the spectrum of lissencephaly and polymicrogyria, but I think > less common. We believe she has had her first seizure , which we (the > neurologist, my husband, and I) were hoping would not occur until she hit > adolescence since she hadn't had any to this point and she turns 10 on > January 13. It seems that seizures generally occur at a much younger age > with Pachygyria, like at birth to age 2 and it was thought that perhaps she > would not have them until the hormone change began to stir things up. > Anyway, the bus driver and assistant saw her right hand and leg start > shaking as she grabbed hold of the driver's jacket, and a distant stare they > couldn't break for several seconds, and then she came out of it. I have a > message into our neurologist who is on vacation. Does anyone on this > > site have a child with Pachygyria, and if so, could you tell me your > experience with seizures. Might this be one, and then maybe a long gap > before more occur so no need for immediate medication. I dread the side > effects I hear about, but am hopeful with the mention today of no side > effects with at least one of the meds. Her entire brain is effected, so I am > very worried she will lose functioning once the seizures begin. Do I need to > medicate now, or can I wait. I will talk to my neurologist but would > appreciate hearing from experience. Thanks so much. Happy New Year and God > Bless. Beth > > > > Quote Link to comment Share on other sites More sharing options...
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