Depakote, Behaviors, and personality

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My 7 year old daughter was diagnosed with Epilepsy a year ago this coming April. She has been on Depakote since the beginning. It seems to be doing very well at controlling the seizures, but she has become a whole different child. It breaks my heart, and every day seems to get a little bit worse. She is regressing academicaly, socially, and emotionally. Her neuro seems to think it is all "behavior issues". He doesn't want to change the meds but has mentioned it a couple of times. He seems to think she will be like this no matter what we put her on. I want my little girl back. Anybody else struggling with this?

Comments

Re: Depakote, Behaviors, and personality

Submitted by mfast on Sun, 2010-04-11 - 00:42

Even though this post is from 2008 and it is 2010 i wanted to add here for those who may be searching and reading now.

My son started having unexplained seizures at age 3. EEG's and MRI's were all clear. We tried Keppra and it didn't control his seizures at all, and he had horrible rage and anger, that was never present in his life prior to the seizures. He was a happy, outgoing, friendly little guy.

Then our Neurologist switched us to Depakote sprinkles. Depakote has worked wonders at seizure control, and my son hasn't had seizures in two years. However, the behavioral issues started and have never stopped. In preschool he would cry and scream over changing stations, he bit his teacher, no one could figure out what his academic level was because his outbursts were so excessive. We worked so hard to correct behavior, to set limits, to take away privileges. I felt like the most horrible mom on the planet, and just didn't know how to help what had become of my son.

During Kindergarten this year they put him on an IEP, for behavior and say that he is right on the line for "below average" in many learning areas, mostly with auditory memory. Although our work with behavior has improved, we still see tantrums, burst of anger or crying over infinitesimal things almost daily. It helped to switch the time we gave him his medication from 8AM and 8PM to 1AM and 1 PM so his worst behavioral times were after school at home. Because of the possible learning delays he is doing Kindergarten over in the fall.

We are in the process of lowering his meds now, since it has been over two years since the last seizure. I am praying that with the grace of God he won't need this stuff any longer.

As a mom, I say this with such heavyness in my heart - we had to make that choice to deal with behavior to control the seizures...I also know with all my heart that the behavior was not an issue before the medication, before the seizures. There is not a day I don't miss the little boy he was so desparately, and like most of you, our neurologists have passed the problem on as though it is something else. I just hope that like all of you that my intuition is right!

My hope is, that all these heart wrenching choices will be worth something, if my child can get off the meds and be seizure free. This process has been frightening and horrifying. I pray for each of you in the choices you have to make for your children, and I still pray for miracles even though sometimes it's hard to have hope!

Melissa

Even though this post is from 2008 and it is 2010 i wanted to add here for those who may be searching and reading now. My son started having unexplained seizures at age 3.  EEG's and MRI's were all clear.  We tried Keppra and it didn't control his seizures at all, and he had horrible rage and anger, that was never present in his life prior to the seizures.  He was a happy, outgoing, friendly little guy. Then our Neurologist switched us to Depakote sprinkles.  Depakote has worked wonders at seizure control, and my son hasn't had seizures in two years.  However, the behavioral issues started and have never stopped.  In preschool he would cry and scream over changing stations, he bit his teacher, no one could figure out what his academic level was because his outbursts were so excessive.  We worked so hard to correct behavior, to set limits, to take away privileges.  I felt like the most horrible mom on the planet, and just didn't know how to help what had become of my son. During Kindergarten this year they put him on  an IEP, for behavior and say that he is right on the line for "below average" in many learning areas, mostly with auditory memory.  Although our work with behavior has improved, we still see tantrums, burst of anger or crying over infinitesimal things almost daily.  It helped to switch the time we gave him his medication from 8AM and  8PM to 1AM and 1 PM so his worst behavioral times were after school at home.  Because of the possible learning delays he is doing Kindergarten over in the fall. We are in the process of lowering his meds now, since it has been over two years since the last seizure.  I am praying that with the grace of God he won't need this stuff any longer. As a mom, I say this with such heavyness in my heart - we had to make that choice to deal with behavior to control the seizures...I also know with all my heart that the behavior was not an issue before the medication, before the seizures.  There is not a day I don't miss the little boy he was so desparately, and like most of you, our neurologists have passed the problem on as though it is something else.  I just hope that like all of you that my intuition is right! My hope is, that all these heart wrenching choices will be worth something, if my child can get off the meds and be seizure free.    This process has been frightening and horrifying.  I pray for each of you in the choices you have to make for your children, and I still pray for miracles even though sometimes it's hard to have hope! Melissa

Even though this post is from 2008 and it is 2010 i wanted to add here for those who may be searching and reading now.

My son started having unexplained seizures at age 3. EEG's and MRI's were all clear. We tried Keppra and it didn't control his seizures at all, and he had horrible rage and anger, that was never present in his life prior to the seizures. He was a happy, outgoing, friendly little guy.

Then our Neurologist switched us to Depakote sprinkles. Depakote has worked wonders at seizure control, and my son hasn't had seizures in two years. However, the behavioral issues started and have never stopped. In preschool he would cry and scream over changing stations, he bit his teacher, no one could figure out what his academic level was because his outbursts were so excessive. We worked so hard to correct behavior, to set limits, to take away privileges. I felt like the most horrible mom on the planet, and just didn't know how to help what had become of my son.

During Kindergarten this year they put him on an IEP, for behavior and say that he is right on the line for "below average" in many learning areas, mostly with auditory memory. Although our work with behavior has improved, we still see tantrums, burst of anger or crying over infinitesimal things almost daily. It helped to switch the time we gave him his medication from 8AM and 8PM to 1AM and 1 PM so his worst behavioral times were after school at home. Because of the possible learning delays he is doing Kindergarten over in the fall.

We are in the process of lowering his meds now, since it has been over two years since the last seizure. I am praying that with the grace of God he won't need this stuff any longer.

As a mom, I say this with such heavyness in my heart - we had to make that choice to deal with behavior to control the seizures...I also know with all my heart that the behavior was not an issue before the medication, before the seizures. There is not a day I don't miss the little boy he was so desparately, and like most of you, our neurologists have passed the problem on as though it is something else. I just hope that like all of you that my intuition is right!

My hope is, that all these heart wrenching choices will be worth something, if my child can get off the meds and be seizure free. This process has been frightening and horrifying. I pray for each of you in the choices you have to make for your children, and I still pray for miracles even though sometimes it's hard to have hope!

Melissa

Re: Depakote, Behaviors, and personality

Submitted by ChattyKatty on Sun, 2010-05-02 - 15:31

Depakote has warnings on the box. But doctors don't explain them. If the drug is causing profound personality changes and such you should go to see a metabolic specialist.

There is a certain set of metabolic genetic disorders that may reveal themselves when a patient takes depakote ---I was one. It still took doctors another year before my own researching lead me to the correct diagnosis and understanding the root cause of all, ALL my health problems including the seizures and many more issues.

Your daughter needs to be tested for ornithine transcarbamylase dificiency. If she has it, the longer she is on depakote and goes undiagnosed.....the more subtle brain damage will occur. I will pray your daughter does not have it.

But the same advise goes for anyone out there on this site that uses depakote and has severe adverse reactions ----there is a warning to doctors now that the patient may have a metabolic disorder. They should be astute enought to send you to a doctor to check it out. If you need a doctor The website www.nucdf.org will help you find a metabolic specialist in your area.

I found that my seizures were part of my metabolic issues ----I really did not have true epilepsy as first thought. The seizures are caused by a chemical imbalance when I eat too much protein.....I can only have 30 grams a day as an adult.

Best of luck to all. I try to help one life a time. I lost 8 babies myself because I did not know about the metabolic disorder. Then when they put me on depakote I turned into a monster. My husband took the pills away. It was later that the FDA started posting warnings. I don't know how clear it is. But a doctor that ignores personality changes, anger, etc from taking depakote need to be bonked ---the warning is with the medicine.