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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 TruthBTold on Sun, 2011-07-31 - 15:37
TruthBTold
Mom55- When I was in the hospital to diagnose my epilepsy, it turned out that I was having night time seizures. From what the doctor told me, they would see that I was having a seizure through the electrodes attached to my scalp. I would then sit on the bed and look around for a few minutes. I would then just get back into bed and fall asleep. Because I live alone, I am not sure whether I was having these types of seizures more than once a night or how often a month.
After being dismissed from the hospital I was eventually placed on a combination of Tegretal and Depakote because Tegretal alone was not totally controlling my seizures. Unfortunately, either I am continuing to have seizures during the night which wakes and keeps me up for an hour or so, or I have very disruptive sleep because of the drugs. In fact, the other morning, I took a shower and looked in the crook of my arm (the inside of my elbow) and bruised as if I had bitten it badly. Also, I have dreams on many more nights than I used to (not always but I would say at least 15 of 30 days) and they are much more vivid than they ever were.
Sorry to ramble, but it seems to me that your daughter's nighttime "terrors" could be seizures that result in that behavior or could be the result of the medication. I wish doctors would be able to be more specific than they seem to be able to be. Good luck with everything.
TruthBTold
Mom55- When I was in the hospital to diagnose my epilepsy, it turned out that I was having night time seizures. From what the doctor told me, they would see that I was having a seizure through the electrodes attached to my scalp. I would then sit on the bed and look around for a few minutes. I would then just get back into bed and fall asleep. Because I live alone, I am not sure whether I was having these types of seizures more than once a night or how often a month.
After being dismissed from the hospital I was eventually placed on a combination of Tegretal and Depakote because Tegretal alone was not totally controlling my seizures. Unfortunately, either I am continuing to have seizures during the night which wakes and keeps me up for an hour or so, or I have very disruptive sleep because of the drugs. In fact, the other morning, I took a shower and looked in the crook of my arm (the inside of my elbow) and bruised as if I had bitten it badly. Also, I have dreams on many more nights than I used to (not always but I would say at least 15 of 30 days) and they are much more vivid than they ever were.
Sorry to ramble, but it seems to me that your daughter's nighttime "terrors" could be seizures that result in that behavior or could be the result of the medication. I wish doctors would be able to be more specific than they seem to be able to be. Good luck with everything.
Re: Fear of Depakote
Submitted by Thomas Jenkins on Mon, 2009-12-21 - 23:01
Depakote can be effective in controlling seizures. It contolled mine for fourteen years. To work, I had to take a toxic level. Although it controlled my seizures for fourteen years, it had some potent side effects. In my case it impacted on my endocrine system causing me have a nearly fatal low pressure (54/34). After a cardiac problem was ruled out with a heart cath, the cardiologist referred me to an endocrinologist who discovered my pituitary in a near shut down mode and who immediately acted to "jump start" it with steroids. It was my wife however who put it all together, suggesting to my neurologist that my problems might be caused by the depakote. He did reduce my dosage a bit and the effect was so dramatic that he made the decision to get me off it as quicly as possible.
From a personal perspective I must say the drug can be effective, but its side effects can be devastating. As with any drug effects do vary and its up to you and your neurologist to carefully look out for them. Further, I suggest you learn about the drug by reading about it in the Physician's Desk Reference aka PDR. This will tell you in more detail than you'll get from the thumbnail sheets the pharmacies provide about potential side effects and the problems that go with them.
Good luck
Depakote can be effective in controlling seizures. It contolled mine for fourteen years. To work, I had to take a toxic level. Although it controlled my seizures for fourteen years, it had some potent side effects. In my case it impacted on my endocrine system causing me have a nearly fatal low pressure (54/34). After a cardiac problem was ruled out with a heart cath, the cardiologist referred me to an endocrinologist who discovered my pituitary in a near shut down mode and who immediately acted to "jump start" it with steroids. It was my wife however who put it all together, suggesting to my neurologist that my problems might be caused by the depakote. He did reduce my dosage a bit and the effect was so dramatic that he made the decision to get me off it as quicly as possible.
From a personal perspective I must say the drug can be effective, but its side effects can be devastating. As with any drug effects do vary and its up to you and your neurologist to carefully look out for them. Further, I suggest you learn about the drug by reading about it in the Physician's Desk Reference aka PDR. This will tell you in more detail than you'll get from the thumbnail sheets the pharmacies provide about potential side effects and the problems that go with them.
Good luck
Re: Fear of Depakote
Submitted by mom55 on Tue, 2009-12-08 - 05:47
Sorry to hear about the side effects your son is experiencing. It can be so hard getting a new med sorted out!
I was wondering about the night time seizures you mentioned. My daughter has had numerous night time events which I discussed w/her neuro--he felt they were night terrors and not seizures but I am not so sure. Just wondering if there's any similarity and/or if his neuro confirmed seizures. My daughter cries, points at something, speaks incoherently, and after about 2 minutes of this falls right back to sleep. She has no memory of these events. One could make a case either way for seizure vs. nightmare/terror, so I was just curious about what your son is experiencing--maybe it will help me figure out what's going on with my daughter. If you have a chance to respond it would be so appreciated.
Mom55
Sorry to hear about the side effects your son is experiencing. It can be so hard getting a new med sorted out!
I was wondering about the night time seizures you mentioned. My daughter has had numerous night time events which I discussed w/her neuro--he felt they were night terrors and not seizures but I am not so sure. Just wondering if there's any similarity and/or if his neuro confirmed seizures. My daughter cries, points at something, speaks incoherently, and after about 2 minutes of this falls right back to sleep. She has no memory of these events. One could make a case either way for seizure vs. nightmare/terror, so I was just curious about what your son is experiencing--maybe it will help me figure out what's going on with my daughter. If you have a chance to respond it would be so appreciated.
Mom55