Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Hi, We are on schedule to reduce Topomax. However, our daughter's seizures increased from about 7-8 per day (myclonic - quick jolts that do take her off of her feet - she wears a helmet all day now) to about 13 per day since our first decrease. We're trying to be patient and wait it out until Thursday which would be one full week of the lower dose. However, it's darn hard to see your 2 1/2 year old getting knocked down all of the time. Anybody else experience this either during an increase or decrease of meds? If so, how long until you seen some stability? She is also waking up once a night but we think it's because she's peeing through her diaper and getting wet. We have her in a size 6 Huggies Overnight but she's still leaking through. Any recommendations? Thank you!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Hi , We just weaned our 2 1/2 year old off of Topomax and went from 15 seizures per day to only 5 yesterday. We were so unaware of the side of effects of seizures meds - more seizures. I think that seems crazy but our neurologist who has 25 years experience in managing epilepsy in children told us that it is certainly a possibility that a majority of seizures meds can increase seizures. This is such an art and not a science, isn't it. Best wishes for you and that beautiful little boy of yours. Rochelle ________________________________ To: polymicrogyria Sent: Monday, December 1, 2008 11:52:20 AM Subject: Re: Topomax Bummer Hi, We are in the same position as you..My son is on 125ml twice a day and is being weened off topomax at the moment, he has up to 4 grand mal seizures everyday along with 10-20 peti mals, even before he started to be weened off topomax he stated having a new type of seizure where his eyes roll back into his head - he can normally bring himself round without falling or going into a full blown seizure but now he is having more and more trouble " conrolling " them, he now has 30-40 a day and is losing control of his body i.e his knees buccal and if he has anything in his hands he drops it, we spent hours up A & E last week because he had one of these " episodes " and fell down the stairs, we have only gone down by 1 tablet =25ml so i dread to think what hes going to be like when we drop the dose again this week. Our Dr has suggested Zonisamide, Phenytoin or Vigabatrin - the later i don't want to use unless the others don't work... Has anone else has experience with these meds? Thanks in advance mum to 8yrs PMG/LISS severe Epilepsy G-Tube Reflux Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Randi, Curious. What kind of seizures does have? Is she still on Lamictal? The next drug on our list in Felbitol (sp?). Rochelle ________________________________ To: polymicrogyria Sent: Sunday, November 30, 2008 9:17:47 PM Subject: Re: Topomax Bummer When we weened my then 1yr old daughter off topamax the nuerologist added lamictal. She had seizures for about 2 weeks then they stopped all together. She went from having 4 a day to none for the past year. I know all children are different but thought I would share the information. Randi daughter 19months bilateral PMG > > Hi, > > We are on schedule to reduce Topomax. However, our daughter's seizures increased from about 7-8 per day (myclonic - quick jolts that do take her off of her feet - she wears a helmet all day now) to about 13 per day since our first decrease. We're trying to be patient and wait it out until Thursday which would be one full week of the lower dose. However, it's darn hard to see your 2 1/2 year old getting knocked down all of the time. Anybody else experience this either during an increase or decrease of meds? If so, how long until you seen some stability? > > She is also waking up once a night but we think it's because she's peeing through her diaper and getting wet. We have her in a size 6 Huggies Overnight but she's still leaking through. Any recommendations? > > Thank you!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Hi Rochelle, How Lovely your Family is.... The seizure that they showed on the video is very simiar to the new one that has started having, Im so pleased that things are starting to improve for your little Girl - what a little sweetie - has been on topomax for a number of years now but they were increased afew months ago, and come to think of it thay have got worse since. hopefully we will see a improvement when they have stopped completely. best Wishes to you and yours > > Hi , > > We just weaned our 2 1/2 year old off of Topomax and went from 15 seizures per day to only 5 yesterday. > > We were so unaware of the side of effects of seizures meds - more seizures. I think that seems crazy but our neurologist who has 25 years experience in managing epilepsy in children told us that it is certainly a possibility that a majority of seizures meds can increase seizures. > > This is such an art and not a science, isn't it. > > Best wishes for you and that beautiful little boy of yours. > > Rochelle > > > > > ________________________________ > > To: polymicrogyria > Sent: Monday, December 1, 2008 11:52:20 AM > Subject: Re: Topomax Bummer > > > > Hi, > We are in the same position as you..My son is on 125ml twice a day > and is being weened off topomax at the moment, he has up to 4 grand > mal seizures everyday along with 10-20 peti mals, even before he > started to be weened off topomax he stated having a new type of > seizure where his eyes roll back into his head - he can normally > bring himself round without falling or going into a full blown > seizure but now he is having more and more trouble " conrolling " them, > he now has 30-40 a day and is losing control of his body i.e his > knees buccal and if he has anything in his hands he drops it, we > spent hours up A & E last week because he had one of these " episodes " > and fell down the stairs, we have only gone down by 1 tablet =25ml so > i dread to think what hes going to be like when we drop the dose > again this week. > Our Dr has suggested Zonisamide, Phenytoin or Vigabatrin - the > later i don't want to use unless the others don't work... > Has anone else has experience with these meds? > > Thanks in advance > > > mum to 8yrs PMG/LISS severe Epilepsy G-Tube Reflux > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 The nueroligist called them tonic clonic seizures. I dont really think they were when I read about those the seamed alot more dramatic than what did, she was very young when they started though. Her arms and legs would spasm and jerk to the center of her body. I havent done much reasearch on seizures which I probably should. Lamictal currently is her only seizure med and she had a normal EEG! YAY > > > > Hi, > > > > We are on schedule to reduce Topomax. However, our daughter's > seizures increased from about 7-8 per day (myclonic - quick jolts > that do take her off of her feet - she wears a helmet all day now) to > about 13 per day since our first decrease. We're trying to be > patient and wait it out until Thursday which would be one full week > of the lower dose. However, it's darn hard to see your 2 1/2 year > old getting knocked down all of the time. Anybody else experience > this either during an increase or decrease of meds? If so, how long > until you seen some stability? > > > > She is also waking up once a night but we think it's because she's > peeing through her diaper and getting wet. We have her in a size 6 > Huggies Overnight but she's still leaking through. Any > recommendations? > > > > Thank you!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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