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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 MegM on Sat, 2009-10-10 - 20:49

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

 

 

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

Submitted by lisacollins1997 on Mon, 2009-10-19 - 15:27

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!

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

Submitted by tialee on Sun, 2009-12-06 - 21:07
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.

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