Hiya,
I normally avoid forums in general for various reasons but this is pretty good and seems to have loads of helpful and knowledgeable people so here goes................Sorry it is soo long - will keep it shorter in future!
My (then 16yr old) son was diagnosed with primary genralised epilepsy in March 2009. He first collapsed in the bathroom in November 2008 but we could not confirm it was a seizure.We had him taken to hospital for checks ,EEg,MRI Xray,bloods,toxicology.all came back clear. The only indication that he could have had a seizure was his tongue had a small bite mark and he couldn't remember anything. Then in Feb 2009 he had a seizure ,again early in the morning while he was on a school adventure weekend trip.This time there were witnesses and it seems like he had a tonic-clonic/grand mal seizure. This came as a total shock.We have no history that we know of in either of our families. He has never been sick or had any injuries let alone head injuries.He is fit and healthy and has always eaten well ( crunches on carrots and apples and fruit rather than junk).
He went through similar tests but the neurologist suggested a Video EEG to confirm.The results came back with a positive diagnosis and they said something about 3hz spikes (still confuses me).
We agreed to put him on epilim (Sodium valproate)and within 2 months he was on 500mg x 2 a day. He seems to be handling it well.No more seizures so far. only side effects seem to be slight weight gain and allergies to some creams (gets rash). He does get a bit moody now and then but I have been getting him sessions with Bodytalk to help with this and it seems to help.
Now that he seems stable,I am thinking about alternate treatments because he really hates the meds (who likes them anyway!).I read about biofeedback and got excited .I phoned the neurologist and she is totally agianst it ,even citing that if it was her child she would not do it. I have noticed ,that she is not v forthcoming on other forms of treatment at all,although she was thorough on the diagnosis side.She keeps saying that this is the best form of treatment for him now and biofeedback does not help this type of epilepsy.She also said it could make it worse by stimulating the brain more.
I find that hard to believe based on the research available on the web
My point is that why should I wait before things are really bad before trying alternate therapies?
Yes he is one of the lucky ones who seems to responding to the AEDs,but I have brought up my kids with minimal medical intervention all their lives and this is a bummer!They haven't even been on anitbiotics more than twice in their whole lives.They see a doctor maybe once a year if that.
I have a theory that there is always an underlying reason for illnesses and symptoms. Whether it is an injury or genetic or if none of these then it is just the way the person handles their thoughts and feelings which can then manifest in physical symptoms. I could be wrong but I have always felt the mind is a powerful organ. But now how do I pursue this without putting him at risk? I am in South Africa and I feel that often most specialists seem to think alike-how do we make money from medical kickbacks! Apologies to any who do not do this but I haven't had the right experience yet. Is what the neuro saying right? Should I just accept this and let him stay on meds forever.my instinct says he should not.
I normally avoid forums in general for various reasons but this is pretty good and seems to have loads of helpful and knowledgeable people so here goes................Sorry it is soo long - will keep it shorter in future!
My (then 16yr old) son was diagnosed with primary genralised epilepsy in March 2009. He first collapsed in the bathroom in November 2008 but we could not confirm it was a seizure.We had him taken to hospital for checks ,EEg,MRI Xray,bloods,toxicology.all came back clear. The only indication that he could have had a seizure was his tongue had a small bite mark and he couldn't remember anything. Then in Feb 2009 he had a seizure ,again early in the morning while he was on a school adventure weekend trip.This time there were witnesses and it seems like he had a tonic-clonic/grand mal seizure. This came as a total shock.We have no history that we know of in either of our families. He has never been sick or had any injuries let alone head injuries.He is fit and healthy and has always eaten well ( crunches on carrots and apples and fruit rather than junk).
He went through similar tests but the neurologist suggested a Video EEG to confirm.The results came back with a positive diagnosis and they said something about 3hz spikes (still confuses me).
We agreed to put him on epilim (Sodium valproate)and within 2 months he was on 500mg x 2 a day. He seems to be handling it well.No more seizures so far. only side effects seem to be slight weight gain and allergies to some creams (gets rash). He does get a bit moody now and then but I have been getting him sessions with Bodytalk to help with this and it seems to help.
Now that he seems stable,I am thinking about alternate treatments because he really hates the meds (who likes them anyway!).I read about biofeedback and got excited .I phoned the neurologist and she is totally agianst it ,even citing that if it was her child she would not do it. I have noticed ,that she is not v forthcoming on other forms of treatment at all,although she was thorough on the diagnosis side.She keeps saying that this is the best form of treatment for him now and biofeedback does not help this type of epilepsy.She also said it could make it worse by stimulating the brain more.
I find that hard to believe based on the research available on the web
My point is that why should I wait before things are really bad before trying alternate therapies?
Yes he is one of the lucky ones who seems to responding to the AEDs,but I have brought up my kids with minimal medical intervention all their lives and this is a bummer!They haven't even been on anitbiotics more than twice in their whole lives.They see a doctor maybe once a year if that.
I have a theory that there is always an underlying reason for illnesses and symptoms. Whether it is an injury or genetic or if none of these then it is just the way the person handles their thoughts and feelings which can then manifest in physical symptoms. I could be wrong but I have always felt the mind is a powerful organ. But now how do I pursue this without putting him at risk? I am in South Africa and I feel that often most specialists seem to think alike-how do we make money from medical kickbacks! Apologies to any who do not do this but I haven't had the right experience yet. Is what the neuro saying right? Should I just accept this and let him stay on meds forever.my instinct says he should not.