lacyndarella
06-01-2008, 12:40 PM
Today, 09:16 AM
colin 1974
New Community Member Join Date: May 2008
Posts: 2
anybody out there
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Hi my daughter Georgia has been diagnosed with a mutated scn1a gen.She has been suffering from seizures since she was 4 months old.Her first episode was 5 hours after her Diphtheria,tetanus,whooping cough,polio hib and meningitis,she had already recieved these at 2months and 3 months.The first seizure was dismissed as a febrile fit and put down to her being hot although this was not the case,the next episode came a few days later which prompted our consultant to place her in epillim.This medication calmed her down for about 6 weeks then they became more frequent and she was placed on carbamazipine (the fit maker as i call it),this changed her seizures dramatically from one or two a week to 7-10 a day and this turned her blue from lack of oxygen and about 7-8 mins long.Since then she has had pyridoxine,lamotrigine,topirimate ,keppra and now they want to try her on stiripentol yet they seem to lack any information on this drug as its unlicensed in the uk.She used to say "dad" and" bob" and what sounded" like here you go" and "tickle under there" now even that has stopped it is almost as if she is regressing.I would like to talk to other parents who are in the same boat and to share information.
colin 1974
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#76 Today, 11:39 AM
lacyndarella
Distinguished Community Member Join Date: Nov 2006
Location: Sterling IL
Posts: 1,795
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Colin,
Jimmie has continued to develop (if slowly - very slowly) despite the seizures. If we could get them under control, I think he would take off developmentally. So we keep trying. We have never had control of his seizures except for the first two weeks after starting topamax and b6 when he was 4 1/2 months old. Then the seizures came back. We have tried ACTH (the seizures got worse), topamax, keppra, depakote, zonegran, and any number of combinations of the drugs listed. I like the keppra. He seems to develop more when taking keppra. He seems to be more cognitively there, even if it doesn't really stop the seizures (at least the ones we can see - it's obviously stopping something for his cognition to improve so vastly when he's on it). He had his first seizures after his 4 month vaccines...but I believe that is coincidental. I did slow down his vaccination schedule after that because I don't think he needs that many shots in a given day...no more than one shot a day. I'll take him back a week later for the next one. I don't care if it takes more time and trouble. He is twenty three months old and still non-verbal and has not yet learned to stand independently, although he is pulling up on everything he can now. He started crawling at 13 months. He has started to sign (all on his own) so I have begun working on that form of communication with him. And we keep trying to find that magic potion of meds that will rid him of the seizures. He is such an angel! Welcome to the board. Hope you find some answers.
Lacy
__________________
Lacy, mother to Jimmie born 6/23/06, diagnosed with Infantile Spasms at 4 1/2 months, progressed to intractible mixed seizure disorder and as of 1/7/2008 showing evolution from infantile spasms to Lennox-Gestaut syndrome with multi-focal IED and slow spike wave discharges on EEG, and wife to David, who saved me from myself! Scared, confused, sad, angry, hopeful, faithful. With God, all things are possible. Find us at www.myspace.com/lacyndarella and Jimme's carepage is found at www.carepages.com, JimmieMathes.
colin 1974
New Community Member Join Date: May 2008
Posts: 2
anybody out there
--------------------------------------------------------------------------------
Hi my daughter Georgia has been diagnosed with a mutated scn1a gen.She has been suffering from seizures since she was 4 months old.Her first episode was 5 hours after her Diphtheria,tetanus,whooping cough,polio hib and meningitis,she had already recieved these at 2months and 3 months.The first seizure was dismissed as a febrile fit and put down to her being hot although this was not the case,the next episode came a few days later which prompted our consultant to place her in epillim.This medication calmed her down for about 6 weeks then they became more frequent and she was placed on carbamazipine (the fit maker as i call it),this changed her seizures dramatically from one or two a week to 7-10 a day and this turned her blue from lack of oxygen and about 7-8 mins long.Since then she has had pyridoxine,lamotrigine,topirimate ,keppra and now they want to try her on stiripentol yet they seem to lack any information on this drug as its unlicensed in the uk.She used to say "dad" and" bob" and what sounded" like here you go" and "tickle under there" now even that has stopped it is almost as if she is regressing.I would like to talk to other parents who are in the same boat and to share information.
colin 1974
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#76 Today, 11:39 AM
lacyndarella
Distinguished Community Member Join Date: Nov 2006
Location: Sterling IL
Posts: 1,795
--------------------------------------------------------------------------------
Colin,
Jimmie has continued to develop (if slowly - very slowly) despite the seizures. If we could get them under control, I think he would take off developmentally. So we keep trying. We have never had control of his seizures except for the first two weeks after starting topamax and b6 when he was 4 1/2 months old. Then the seizures came back. We have tried ACTH (the seizures got worse), topamax, keppra, depakote, zonegran, and any number of combinations of the drugs listed. I like the keppra. He seems to develop more when taking keppra. He seems to be more cognitively there, even if it doesn't really stop the seizures (at least the ones we can see - it's obviously stopping something for his cognition to improve so vastly when he's on it). He had his first seizures after his 4 month vaccines...but I believe that is coincidental. I did slow down his vaccination schedule after that because I don't think he needs that many shots in a given day...no more than one shot a day. I'll take him back a week later for the next one. I don't care if it takes more time and trouble. He is twenty three months old and still non-verbal and has not yet learned to stand independently, although he is pulling up on everything he can now. He started crawling at 13 months. He has started to sign (all on his own) so I have begun working on that form of communication with him. And we keep trying to find that magic potion of meds that will rid him of the seizures. He is such an angel! Welcome to the board. Hope you find some answers.
Lacy
__________________
Lacy, mother to Jimmie born 6/23/06, diagnosed with Infantile Spasms at 4 1/2 months, progressed to intractible mixed seizure disorder and as of 1/7/2008 showing evolution from infantile spasms to Lennox-Gestaut syndrome with multi-focal IED and slow spike wave discharges on EEG, and wife to David, who saved me from myself! Scared, confused, sad, angry, hopeful, faithful. With God, all things are possible. Find us at www.myspace.com/lacyndarella and Jimme's carepage is found at www.carepages.com, JimmieMathes.