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19 months old and onto a 5th medicine
Sat, 02/18/2006 - 04:57Topic: Living With Epilepsy - Youth
My 19th month old son was diagnosed with epilepsy at two weeks of age. We have no family history, there is no known source for the seizures (idiopathic) and we now are on a 4th medicine that doesn't work. All of the medicines have worked for a period of time, the longest being Depakote (10 months). His seizures are coming from the right front part of his brain and he can have up to 100 a day at their worst. He has undergone 2 visits to the hospital for long term monitoring, as well as 2 MRI's.
Complete frustration and fear is setting in as it has each time we go through weaning him off a medicine that has stopped working to move on to the next.
I am looking for advice from someone who may have a similar story, or thoughts from someone who has more knowledge than I.
Comments
Re: 19 months old and onto a 5th medicine
Submitted by lisaltstheresa on Mon, 2007-02-12 - 20:43
Just suggesting to check some levels to make sure there is no deficiency first. Not to take the vitamins.
Talk with your doctor first.
take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/
http//www.sleep-safe.co.uk/id90.htm
Re: 19 months old and onto a 5th medicine
Submitted by stages mom on Thu, 2007-03-01 - 10:33
My son Stage is now 6 months old and has had seizures since birth. Although they were not diagnosed until he was two weeks old. They started him on Phenobarb and he is now currently taking Phenobarb, Keppra, zonesimide and still having breakthrough seizures every 7-14 days which end up being in clusters. He had just generalized (Grand Mal) and now has generalized which then become focalized. Whatever that means. The neurologist wanted to start him on a fourth medication and I put my foot down. I said absolutely not. I insisted we begin the Ketogenic diet. So here we are in the hospital starting the diet. Not sure how much you know about the diet, but I believe it is worth a shot. It's a lot of work. But no more than watching your kid have seizures. I have also started taking my son to a chiropractor and it has made a world of difference in his mobility and tone. take care. Jessie
Hi.. re:"His seizures are
Submitted by solis on Sat, 2007-02-10 - 14:31
Hi.. re:"His seizures are coming from the right front part of his brain" I noted this sentence and began wondering if your son has been tested for surgery. http://www.epilepsy.com/epilepsy/surgery.html Since the brain is still developing in the early years after birth; the work generally done by the damaged part is usually taken over by another area. I had E since I was a toddler, and I was told that by a physician. He was correct,.. I qualified for surgery. I'd also recommend taking your child to an epileptologist (a neurologist that focuses on E) as opposed to a general neurologist. I wouldn't suggest even adding vitamins without consulting with the specialist as ,if taken in too large a dose, some can cause damage. best wishes.. ~sol