Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 My daughter, Jenna, was on Tegretol for her seizures. That med controlled her seizures and she now is seizure free and off of any meds. Also, her seizures were mostly focal so they were not as severe as most of the kids. Seizure meds Thanks for the info Steve. Also, I was wondering if anyone can tell me what (if any) meds have been prescribed for seizures. They have Tyler on Depakote. This was given before they diagnosed PMG. I understand that Depakote is pretty harsh and think that maybe it's the wrong treatment for the diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 nela is on Depakote. She, also, was recently dx with PMG (at age 13). She has just been weaned from Klonopin, the Neuro will be taking her off of Depakote next, that will just leave her on Lamictal. Bear in mind his reasons for taking her off meds is to get a better idea of where the seizures are coming from, since the drugs may be suppressing some, and then make a determination of what course of action to recommend (be it different meds, surgery, VNS etc.) She has Lennox Gastaut which is a severe form of epilepsy. She has been on Depakote now for like 7 years with no apparent side affects other than it may be responsible for her weight gain (but than again, what is drugs, what is seizure disorder and what is PMG?) She just had a recent video EEG and will be getting results next month. We have noticed an increase in Absences and Myclonics. The question is; are they increased because of taking her off klonopin or is this just another phase in the course of LGS? Klonopin isn't known for supressing Absence seizures. Hoping to get more answers soon. She has an appt with Dobyns in March. Penny - Step Mom to nela (14 years old) SweetLilB91 wrote: Thanks for the info Steve. Also, I was wondering if anyone can tell me what (if any) meds have been prescribed for seizures. They have Tyler on Depakote. This was given before they diagnosed PMG. I understand that Depakote is pretty harsh and think that maybe it's the wrong treatment for the diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 My daughter is on Phenobarbitol. She was diagnosed with PMG and microcephaly at birth. Has anyone had any problems with this medication or know anything about it? The web isn't much help. She just turned 4 months two days ago. Any info you can provide will be appreciated. Keasha Florida, USA > Thanks for the info Steve. Also, I was wondering if anyone can tell me > what (if any) meds have been prescribed for seizures. They have Tyler > on Depakote. This was given before they diagnosed PMG. I understand > that Depakote is pretty harsh and think that maybe it's the wrong > treatment for the diagnosis. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 My daughter (2 yrs) has been on a number of seizure meds....dilantin, phenobarbital, keppra, klonipin, topamax, and depakote. Very early on we even tried steroids and vitamin B6 therapy. Right now she's getting Depakote and Phenobarb with decent control. She has a severe seizure disorder that is very hard to control (Lennox Gastaut). We've not seen any negatives with the depakote in the 8-9 months she's been on it. I've found that the book " Seizures and Epilepsy in Childhood: A Guide " By Freeman, Vining, and Pillas has been a GREAT resource for me. It has lots of info about different meds, their side effects, etc. To: polymicrogyria@...: sweetlilb91@...: Mon, 23 Oct 2006 14:19:14 +0000Subject: Seizure meds Thanks for the info Steve. Also, I was wondering if anyone can tell me what (if any) meds have been prescribed for seizures. They have Tyler on Depakote. This was given before they diagnosed PMG. I understand that Depakote is pretty harsh and think that maybe it's the wrong treatment for the diagnosis. _________________________________________________________________ Call friends with PC-to-PC calling -- FREE http://get.live.com/messenger/overview Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 , Thanks for your positive thoughts. Your outlook is amazing! Blessings to you and your family! Annette > > I know I live in the UK and medication is slightly different, but the > mix of meds that my daughter is on is finally working. Saskia is now > 8 years old and has many different types of seizures like many of the > children on here. She has not had a seizure for 2 weeks even though > we had to slowly introduce one and take away another! She is on 9mls > of Sodium Valporate twice daily, 3 x 10mg of Clobazam and 2 x 5mg of > Lamortrigine. All this is bound together with 2.5mls of omega3 > (maxepa). Doctors haven't even mentioned help with getting rid of the > constant drooling though! I hope this will give some of you some hope > that eventually medication can work. The last mix of medications > worked for a while which involved ethosuximide, but she did react > badly to it a times and on one occasion she was overdosed and nearly > had organ failure. Saskia would not eat in a morning and so ended up > taking meds on an empty stomach. This combination may have caused her > to lose weight thus possibly then shifting the balance, hense an > inbalance of medication to ratio of body mass. > > Saskia still cannot talk, but is getting more cognitive as time goes > on, she can now walk (runs) she has ADHD and autistic tendencies > though. She has a right sided weakness as apparently the PMG covers a > lot of the left side of the brain. Her drooling is bad and still > chokes a lot when she eats. The laughter and giggling has brought > more love and laughter to family life in general. Saskia does have one > more brother and 2 other sisters that live in the household. I > consider her as a gift and with out her I would not be the person I am > today. I have my confidence back due to the fact that I know that she > can't fight for herself so now I have to do it. I also find the > strength from somewhere even when she has been up all night. I take > each day as it comes and I try to take out the positive in each moment > and now don't find any negatives. I take each day as a lesson it so > helps me stop being a victim like I always have been in the past. I > have written this to help give back everyone HOPE. Its not the end, I > feel that it is just the beginning...... > > Love and hugs > > > Quote Link to comment Share on other sites More sharing options...
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