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Fear of Depakote
Fri, 09/11/2009 - 23:06Do you have to medicate absence seizures?
My son, 5.5, was diagnosed with Childhood Absence Epilepsy this summer. Reluctantly, I gave him Zarontin. Eleven days later, he had a drug reaction (rash). Now the ped-neuro wants me to give him Depakote. But fear gets in the way.
Please, tell me what side effects your elementary school aged children experience while on Depakote. Hair loss -- when, how much, grow back? Weight gain -- when, how much? Tremors -- when, what kind? Low platelets -- bruising, bleeding? Liver disease? Pancreatitis? Behavior issues? Omg.
Is it true that untreated absence seizures can result in long-term epilepsy (vs. childhood)? Is it true that untreated absence seizures result in tonic-clonic and other seizures? Is it imperative that you treat absence seizures with medication? Can absence seizures be treated with a low glycemic index diet or keto diet?
PS. I'm still waiting to see ped-neuro, hence all my questions.
Comments
Re: Fear of Depakote
Submitted by MegM on Sat, 2009-10-10 - 20:53
Thank you so much for replying. Your story helps a lot. Gives me some hope.
I just posted a reply on this thread, updating the situation with my son who is now on Depakote. Please refer to it.
He had his blood levels checked today. Hopefully we can come down on dosage. Otherwise I do not think this drug will work for him or our family. Unfortunately, Lamictal is a risk as he already had a rash with Zarontin. Other than that, there are no other drugs that treat absence sz in children. :(
M in Portland, OR
Thank you so much for replying. Your story helps a lot. Gives me some hope.
I just posted a reply on this thread, updating the situation with my son who is now on Depakote. Please refer to it.
He had his blood levels checked today. Hopefully we can come down on dosage. Otherwise I do not think this drug will work for him or our family. Unfortunately, Lamictal is a risk as he already had a rash with Zarontin. Other than that, there are no other drugs that treat absence sz in children. :(
M in Portland, OR
Re: Fear of Depakote
Submitted by lorigirl on Wed, 2009-10-07 - 14:51
Hi, I'm 36 and I have absence seizures as well as tonic clonic. I took Depakote for a long time. My seizures are fully under control, thank goodness. As a child, I was on phenobarbital. I had tonic clonic seizures up until I was about 5, then once on Phenobarbitol and didn't have a seizure again until I was 13, which was after the doctor decided to take me off of the Phenobarbitol. At 13 was when the doctors found the absence seizures. At this point, I ended up on Dilantin and Depakote. As for the side effects, there were a few. Tremors - my hands were shaky. Honestly though, it bothered me more than people actually noticed. Then I started taking an extra B multivitamin and the tremors were alot better. As for hair loss, I haven't had too much of a problem. My mom used to always tell me my hair was all over the bathroom, but honestly it wasn't much worse than either one of my sisters. The absence seizures did cause me to have a little bit of trouble in school until I went on the Depakote. Once my dose was regular, I did alot better. I'm not on Depakote or Dilantin anymore. Now I take Lamictal, which controls both types of seizures. And I'm on alot less. I went from taking 2000 mg of Depakote and 200 mg. of Dilantin a day, down to 400 mg. of Lamictal. Depakote worked for me for a very long time. My dose was high, and one thing that my mom noticed - and Mom's notice everything :o) - was that if I didn't take that dose every day on time, it could affect my mood. As for my weight, it always fluctuated. Nothing too major - I would say about 15 pounds up and down. But I was never heavy at all. I was always considered to be one of the "skinny" girls. I did bruise easily, but then again I still do on the Lamictal. In my case though I never did grow out of the epilepsy. But I went on to have a normal life just like everyone else. I drive too. Depakote worked for me. I totally understand your fears though. And I can bet that sometimes the epilepsy can get to you as well as your child. This is just as hard on a parent as it is on a kid. Best of luck to you. Just watch those blood levels really close, and try to stay at the lowest therapeutic level.
Hi, I'm 36 and I have absence seizures as well as tonic clonic. I took Depakote for a long time. My seizures are fully under control, thank goodness. As a child, I was on phenobarbital. I had tonic clonic seizures up until I was about 5, then once on Phenobarbitol and didn't have a seizure again until I was 13, which was after the doctor decided to take me off of the Phenobarbitol. At 13 was when the doctors found the absence seizures. At this point, I ended up on Dilantin and Depakote. As for the side effects, there were a few. Tremors - my hands were shaky. Honestly though, it bothered me more than people actually noticed. Then I started taking an extra B multivitamin and the tremors were alot better. As for hair loss, I haven't had too much of a problem. My mom used to always tell me my hair was all over the bathroom, but honestly it wasn't much worse than either one of my sisters. The absence seizures did cause me to have a little bit of trouble in school until I went on the Depakote. Once my dose was regular, I did alot better. I'm not on Depakote or Dilantin anymore. Now I take Lamictal, which controls both types of seizures. And I'm on alot less. I went from taking 2000 mg of Depakote and 200 mg. of Dilantin a day, down to 400 mg. of Lamictal. Depakote worked for me for a very long time. My dose was high, and one thing that my mom noticed - and Mom's notice everything :o) - was that if I didn't take that dose every day on time, it could affect my mood. As for my weight, it always fluctuated. Nothing too major - I would say about 15 pounds up and down. But I was never heavy at all. I was always considered to be one of the "skinny" girls. I did bruise easily, but then again I still do on the Lamictal. In my case though I never did grow out of the epilepsy. But I went on to have a normal life just like everyone else. I drive too. Depakote worked for me. I totally understand your fears though. And I can bet that sometimes the epilepsy can get to you as well as your child. This is just as hard on a parent as it is on a kid. Best of luck to you. Just watch those blood levels really close, and try to stay at the lowest therapeutic level.