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MegM

Fear of Depakote

Do 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

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.

Re: Fear of Depakote

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

A few years ago, my pediatric neurologist at the time wanted to try to take me off of my medication (for about the 3rd time since being diagnosed when I was much younger in grade school). I am 24 now, and was about 21 at the time when my doctor and I discussed and began the weaning process. I had been weaned off of my Depakote before, showing only signs of extreme exhaustion and clumsiness as side effects- but I was also still very young and hadn't completely gone through puberty yet. However, this time was completely different and quite traumatic. I am not sure if it was because my hormones were different at this stage in my life or if it was a change due to my personal life at the time (seeing that at age 21 life can be a bit different with more responsibilities and stressors than it was when i was originally weaned at about ages 11 and 14 or so... ) but once I had been off of the Depakote ER for about two weeks I became an entirely different person and began experiencing terrible Obsessive Compulsive tendencies which ruined my life for the next few months until we got my medication levels back in check again and eventually... I went right back to my regular dosage that I had been on before we had begun the weaning process. I was just wondering if this has ever happened to anyone before or if anyone especially anyone who has been on Depakote for an extended period of time has experienced OCD symptoms once taken off of the heavy-duty brain altering medication.
I am not sure if it has something to do with where I was personally in life/my hormone levels or if it was something to do with the seizures but I wanted to confirm that maybe it wasnt due to the medication as well. If anyone has any information on this I would greatly greatly appreciate it!

best wishes..

Re: Fear of Depakote

Hi-if Depakote worked for you, why were you taken off of it?  Going off of Lamictal after 3 1/2 years and upping depakote to 375 mg. 2x daily has turned our daughter into a mild zombie.  She is 11.  Thanks for input. 

Re: Fear of Depakote

I'm now 62 and have been off depakote since 2006.  Although it did control my seizures, it also effected my endrocrine system, caused me to gain weight, about 50 pounds which I could not get rid of.  My hair turned prematurely gray, completely, and thinned out dramatically.  I found bunches of it in the tub.  Also, according to wife, it effected my behavior making me often appear in a fog.  She said I looked like an old man even though I was just in my fifties and acted like one.

 Once I was taken off of the depakote three things happened,

1.  I felt better

2.  I was much more alert

3.  I lost a good bit of weight, about 30 pounds dropping from 230 to 200 pounds.

 Sadly, with all of the positive effects of being off depakote for over three years, I must say that my seizures are not as well controlled.

 After failing with Trileptal and Topamax at their maximum levels taken together, I am now in process of being switched to Kepra and Lamictal.  As the new drug levels are being built up, I had another seizure ath the dinner table between dinner and dessert on Thanksgiving Day.

 Once my dosage is up to where my neurologist wants it, I hope and pray this combination will work.  So far I've had no side effects.

Re: Fear of Depakote

My daughter, who is now 6, was diagnosed w/absence epilepsy 15 months ago. She actually had a big tonic-clonic event but the EEG was consistent w/childhood absence epilepsy, hence the diagnosis. This makes me wonder also if she was having absence seizures and we missed them until she finally had "the big one."  She has been on Keppra ever since, but never tried Depakote.  I know you specifically were wondering about he Depakote, but I wanted to respond and tell you she has not had a good experience on Keppra if you are considering it as well. She is seizure-free but many behavioral/social/emotional side effects.  We are considering another med.  Everyone's seizure disorder is unique, and waiting for neuro appts are maddening but you are smart to gather your info ahead of time.

I empathize with you, I have felt your fear. Try to take good care of yourself and consider yourself hugged.

Mom55

Re: Fear of Depakote

Thank you for sharing. 

I finally saw the ped-neuro.  She made a strong argument for Depakote.  So, dutifully I started the meds.  My son has been on "full dose" for a week now. 

Things are not going well, though.  He still has absence seizures.  And now he is adhd, impulsive, agitated, obsessive, loud, violent and aggressive.  Last night, when he was rolling over the back of the couch -- over and over and over again --  I asked if he could please sit still.  He said, "No, I'm too hot."  It's the 2nd time he has described being "hot" with this drug.  Sometimes he gets so crazy, his 10yr old sister locks herself in the bathroom to get away from him.  On the day we went from 2x to 3x a day, I found him running and jumping on top of the garage roof. 

Given that he is allergic to Zarontin (rash), the ped neuro will not prescribe Lamictal, the only other drug that treats childhood absense seizures.  I am at a loss as to what to do.

Feeling discouraged,

M in Portland, OR

 

 

Re: Fear of Depakote

My 11 year old son started Depakote over a month ago. He has absance seizures with secondary generalization. It took about 3 weeks for the Depakote to take full effect. He is on 750mg in the AM and 500mg in the PM. He is also on Topamax 2x daily. He also complains of being hot. He already has ADHD and this med has really upped his hyperactivity. He, too, is very irritable and aggressive with his siblings and friends at church. He has no reasoning skills or manners. He still has about 5 "spells" a day but we are big seizure free for about a month now. Praise the Lord for that. Thankfully, we are homeschooling him, as there are some days because he just cannot complete his work because he is too fatigued. If he were in public school, this would be a much bigger mightmare than it already is. Also, multiple absance and big seizures have caused a serious regression in his social and academic areas of his life. We have also had some other concerns with Depakote. He has gained about 8-10 lbs since starting the meds in mid-Sept. He craves high fat, high carb foods. He is hungry ALL the time! His hair was falling out for a little while but that has subsided and has grown back with a slightly different texture and color. I haven't noticed any bruising. His first CBC came back good. He has also started wetting the bed. This was happening almost every night, but our doc suggested we limit his liquid intake and now I wake him up every night at 1 AM to take him to the bathroom.

Just wanted you to know that there are others who feel your pain and discouragement.

His PaPa had seizures as a young man but outgrew them. Hopefully we will be blessed enough for that outcome as well!

Re: Fear of Depakote

My son is also 5.5 and currently on depakote. Your story sounds so much like mine. When he started the depakote he ran around like a mad man. He also said he was hot and was jumping over the couch like the energizer bunny. The worse side effect I have seen is now he has night time seizures that look like bad nightmares. He never had these before the meds. The thing is those are alot easier than the complex ones he was having before the meds. I went back and forth scared to start him on it. He has become more used to the meds now but he still gets hot. I would love to talk with you.

Re: Fear of Depakote

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

Re: Fear of Depakote

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

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 questions

A few years ago, my pediatric neurologist at the time wanted to try to take me off of my medication (for about the 3rd time since being diagnosed when I was much younger in grade school). I am 24 now, and was about 21 at the time when my doctor and I discussed and began the weaning process. I had been weaned off of my Depakote before, showing only signs of extreme exhaustion and clumsiness as side effects- but I was also still very young and hadn't completely gone through puberty yet. However, this time was completely different and quite traumatic. I am not sure if it was because my hormones were different at this stage in my life or if it was a change due to my personal life at the time (seeing that at age 21 life can be a bit different with more responsibilities and stressors than it was when i was originally weaned at about ages 11 and 14 or so... ) but once I had been off of the Depakote ER for about two weeks I became an entirely different person and began experiencing terrible Obsessive Compulsive tendencies which ruined my life for the next few months until we got my medication levels back in check again and eventually... I went right back to my regular dosage that I had been on before we had begun the weaning process. I was just wondering if this has ever happened to anyone before or if anyone especially anyone who has been on Depakote for an extended period of time has experienced OCD symptoms once taken off of the heavy-duty brain altering medication.
I am not sure if it has something to do with where I was personally in life/my hormone levels or if it was something to do with the seizures but I wanted to confirm that maybe it wasnt due to the medication as well. If anyone has any information on this I would greatly greatly appreciate it!

best wishes..

Re: Fear of Depakote

Depakote and Epilum

My son was on Epilum (200mg twice daily) for his absence seizures but he ran out and I had to switch to Depakote (250mg twice daily). We switched back to Epilum because he said he was getting headaches sometimes with Depakote.

At these levels of medication his absence seizures were controlled without any side effects. i see on this website people with such high doses. I guess it's needed but i would recommend starting with a low dose.

before the meds my son was having numerous seizures every hour some lasting 6-10 seconds. Since the epilum I can't notice any and his last eeg only showed two short ones during his sleep period and none when he was awake or stimulated with a strobe.

I can't tell you what will work but this was our experience...all the best

Re: Fear of Depakote

My daughter is on Depakote ER a total of 750 mg a day. She takes a 250 mg pill and a 500mg pill everynight, she is 10 years old and has been on Depakote now for almost a year. It is the only drug that seems to be working for her but it alone doesn't stop her seizures. She now has tonic clonic seizures as well as her absence seizures and she has ADD. She is also on Kepra 250mg twice a day. 

She gets into constant fights with her sisters, is either extremly moody or extremly depressed but according to her ped-neuro this is part of her tonic-clonic seizures not the medication. I asked her this morning about it.

When my daughter was on Topamax she lost 30+ lbs in 2.5 months and started getting bald spots on her head. As soon as we stopped using conditioner in her hair and took her off the Topamax her appetite came back and hair  started growing back.

I am not sure if this helps you or not but we have not seen anything  but good with the Depekote.

 

My daughter also has Chronic Renal Disease so they have to be extremly careful on what medication they put her on.

Re: Fear of Depakote

my son has juvinile mayoclonic epilepsy and when he was on kepra it turned him into a monster so i would suggest trying to take her off of kepra and see if that helps with her mood but hey thats just my opinion

Join the Yale Childhood Absence Epilepsy Study!

Hello everyone. My name is Leisel and I am a Yale University medical student. My lab is recruiting absence epilepsy patients for a study we are currently conducting. We are recruiting absence epilepsy patients from the ages of 6-18 for an fMRI study at Yale University in New Haven, Connecticut. Here is some more information about our study.

- We will consult with and ask permission from your neurologist before you participate in the study
- fMRI is safe and has not been found to cause any long term effects; You will play a simple computer game while in the scanner.
- You will be compensated $100 per scanning day (~2.5 hours) and $0.50/mi for travel. We will arrange for flights or lodging if needed
- We can scan on weekends or over the summer so you do not miss school
- You will get a picture of your brain!
- You will help us find out more about absence epilepsy, which may benefit patients and their families in the future.
You cannot participate in the study if you have other types of seizures or if you have a brain
abnormality. Please contact us if you have questions!
To participate, please contact Jen at yaleCAEstudy "at" gmail.com or call at 203-815-7231
You can also visit our website at www.yalecae.com, or our Facebook page. Just search for "Yale Childhood Absence Epilepsy Study"!

Thank you very much for supporting our research in absence epilepsy!

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