I previously wrote on July 5, 2009. Our son now 19months old now, did just have another episode - August 19th, 2009. He had not had one since May. He was on two 15mg sprinkle capusules, Topamax, one in the morning, one in the evening, a day. We made the mistake of switching it to the generic form and within two weeks he had seizure. We then were told to increase to three capusules a day. A week later he had multiple episode - every three to four hours, in one day. We are now on four Topamax a day - he has been doing fine for a month now. Seizure free so far.
When he goes into a seizure he is no longer smacking his lips, he just basically stops, stares and passes out. Sometimes his heart stops, sometimes it slows. He stops breathing but for no longer than a minute. We are being told that he has Tonic Clonic seizures (gran mal), however, he is NOT convulsing. His lips turn blue, eyes roll back into head, his legs now seem to tense up (but no movement), and he stops breathing or it slows dramatically. (When he goes into one we always lay him flat on his back and listen to his breathing) We will have to do a three day EEG to determine which type of seizure he is in fact having.
I have done some research and really believe he has something called RAS (reflex anoxic seizures) they are not epiletic. Please go to the website www.stars-us.org. It shed alot of light for us. He is experiencing every bullet point.
We may never know why this happens, they don't even know why the medicine works - it just does, but we will have a better idea of what type of seizure he has once we do the three day EEG. I can't wait to prove my neurologist wrong!!
PS: do NOT, do NOT, use any generic form of Topamax! It does matter!
PSS: Our son did have a bit of a adjustment period when increasing this medicine but within a month he is back to his old smily self.
If you want to enquire more, [please send me a message], please make sure you reference your [message] as "SEIZURES".
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I previously wrote on July 5, 2009. Our son now 19months old now, did just have another episode - August 19th, 2009. He had not had one since May. He was on two 15mg sprinkle capusules, Topamax, one in the morning, one in the evening, a day. We made the mistake of switching it to the generic form and within two weeks he had seizure. We then were told to increase to three capusules a day. A week later he had multiple episode - every three to four hours, in one day. We are now on four Topamax a day - he has been doing fine for a month now. Seizure free so far.
When he goes into a seizure he is no longer smacking his lips, he just basically stops, stares and passes out. Sometimes his heart stops, sometimes it slows. He stops breathing but for no longer than a minute. We are being told that he has Tonic Clonic seizures (gran mal), however, he is NOT convulsing. His lips turn blue, eyes roll back into head, his legs now seem to tense up (but no movement), and he stops breathing or it slows dramatically. (When he goes into one we always lay him flat on his back and listen to his breathing) We will have to do a three day EEG to determine which type of seizure he is in fact having.
I have done some research and really believe he has something called RAS (reflex anoxic seizures) they are not epiletic. Please go to the website www.stars-us.org. It shed alot of light for us. He is experiencing every bullet point.
We may never know why this happens, they don't even know why the medicine works - it just does, but we will have a better idea of what type of seizure he has once we do the three day EEG. I can't wait to prove my neurologist wrong!!
PS: do NOT, do NOT, use any generic form of Topamax! It does matter!
PSS: Our son did have a bit of a adjustment period when increasing this medicine but within a month he is back to his old smily self.
If you want to enquire more, [please send me a message], please make sure you reference your [message] as "SEIZURES".
September 15, 2009 - 5:42pmThis Comment
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