Hi my 9 year old son has been diagnosed with benign rolandic epilepsy a year and a half ago, his seizures weren't to bad to start with hes had about 6 minor ones, then all of a sudden he had one full blown seizure. his consultant thinks we should now put him on medication, carbamazepine, but after doing a lot of research on it I'm very concerned about this. Please any help and advice would be very welcome.
medication worries
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N Sperlo
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Janeylou, I've had epilepsy for 11 years that I know of. For 9 years, I was diagnosed with petit-mal epilepsy before I had my first grand-mal. Later during a 3 day video EEG, I was seen having auras or petit-mal seizures. After adding medicine to my magical cocktail, I am doing better.
I have never taken carbamazepine, but do you have any specific worries? Often times the side-effects are read into too much and people get scared. My medicines have a bunch of possible side effects, but I only deal with two. I need more sleep and I get a little dizzy when I'm drinking. It keeps me in line, because being drunk sucks.
Welcome, by the way. I'm happy to help you out any way I can. You'll meet some great people here.
I have never taken carbamazepine, but do you have any specific worries? Often times the side-effects are read into too much and people get scared. My medicines have a bunch of possible side effects, but I only deal with two. I need more sleep and I get a little dizzy when I'm drinking. It keeps me in line, because being drunk sucks.
Welcome, by the way. I'm happy to help you out any way I can. You'll meet some great people here.
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janeylou,
I have been on Carbamazepine since i was 26,i am now 38.I have tried other aeds before that,without that and together.Personally i find Carbamazepine to be a drug that suits me.This is the trouble with epilepsy,there is a lot off trial and error untill the right drug or drugs(sometimes two can be needed) and the right dosage found.
I can understand your concern,every parent goes through it.It can be a long drawn out process but remember young children have every chance off growing out off epilepsy.Lets hope that is the case with your 9 year old.In ths case off Carbamazepine i would give it a go if it will stop the seizures,if not there are plenty other aeds that can be tried.Good Luck and keep us informed!
I have been on Carbamazepine since i was 26,i am now 38.I have tried other aeds before that,without that and together.Personally i find Carbamazepine to be a drug that suits me.This is the trouble with epilepsy,there is a lot off trial and error untill the right drug or drugs(sometimes two can be needed) and the right dosage found.
I can understand your concern,every parent goes through it.It can be a long drawn out process but remember young children have every chance off growing out off epilepsy.Lets hope that is the case with your 9 year old.In ths case off Carbamazepine i would give it a go if it will stop the seizures,if not there are plenty other aeds that can be tried.Good Luck and keep us informed!
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N Sperlo
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Ah, yes. that reminds me of Depakote. My mom has pictures of me falling asleep in random places. That was bad. Trial and error. Its tough, but its one of the few ways to get the seizures controlled. My mom keeps that picture on the cabinet at work to remind her of all the rough times there have been. It just makes me laugh.
In my introduction thread, I told everyone one of my mottos.
NGU = Never Give Up
In my introduction thread, I told everyone one of my mottos.
NGU = Never Give Up
I know how reading the list of possible side effects can scare you. However if he does not go on to a medc. his seizures could get worse.
Have you tried the diet, I forgot the name of it. Some people have had good luck with it. It didn't work for me.
hope you have luck in find what his needs.
Have you tried the diet, I forgot the name of it. Some people have had good luck with it. It didn't work for me.
hope you have luck in find what his needs.
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same as crash, i'm on carbamazepine, and though i recently had brain surgery (currently on three meds) carb is the one i choose to stay on for good.
all aed's have risks, they list many to try and cover all possibilities. the more dominant ones with carb are the liver and bone structure, both which, esp. bone, take a considerable amount of time to have effect, just meaning it's not an emergency concern. and doesn't happen to everyone. i have everything checked annually and liver is always normal, and bone scan last year was normal as well.
as i've been on 10 years i feel good about it, also for the fact that out of 4 drugs i've been it had the lowest amount of side effects. everyone reacts to meds differently however if i was in your position i would give carb a try. it is one of the top 3 oldest and proven aed's... and from what i've read/heard phenobarbital and depakote are not the best choices re: side effects and long-term use. also, i know from experience that 'newer' drug options aren't always good either. if there's any drug i would advise against it's vimpat, which you'll hear alot.
just my two cents
good luck with whatever you decide.
all aed's have risks, they list many to try and cover all possibilities. the more dominant ones with carb are the liver and bone structure, both which, esp. bone, take a considerable amount of time to have effect, just meaning it's not an emergency concern. and doesn't happen to everyone. i have everything checked annually and liver is always normal, and bone scan last year was normal as well.
as i've been on 10 years i feel good about it, also for the fact that out of 4 drugs i've been it had the lowest amount of side effects. everyone reacts to meds differently however if i was in your position i would give carb a try. it is one of the top 3 oldest and proven aed's... and from what i've read/heard phenobarbital and depakote are not the best choices re: side effects and long-term use. also, i know from experience that 'newer' drug options aren't always good either. if there's any drug i would advise against it's vimpat, which you'll hear alot.
just my two cents
good luck with whatever you decide.