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Fear of Depakote

Fri, 09/11/2009 - 23:06

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

Submitted by magpie60 on Mon, 2009-10-19 - 10:34
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

Submitted by Thomas Jenkins on Mon, 2009-12-21 - 23:19

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.

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

Submitted by mom55 on Fri, 2009-10-09 - 15:01

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

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

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