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 ChattyKatty on Sun, 2010-05-02 - 22:21

Depakote has warnings on the box. But doctors and pharmacists don't explain them don't explain them because they don't understand the depth of the possible genetic disorder that the reactions may be indicating. If the drug is causing profound personality changes and such you should go to see a metabolic specialist. Failing to do so may, cause long term CNS and brain damage if you do have a metabolic disorder.

There is a certain set of metabolic genetic disorders that may reveal themselves when a patient takes depakote ---I was one. Even though we did not know what was happening at the time we were back at the neurologist the first week after starting the depakote (pre warnings). Both myself and hubby said no more!! I was switched to something else.

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. I found the only doctor in my large city that treated my urea cycle disorder. That is what severe reactions to depakote may be indicating. You may not have this. But have it ruled out. There is now medical treatment that can also eliviate some of the issues related to your problems.

The most common UCD is ornithine transcarbamylase dificiency. If you have it, the longer you are on depakote and go undiagnosed.....the more subtle brain damage will occur.

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.

If your doctor dismisses your concerns about change in behavior and personality while on depakote ---contact www.nucdf.org and find a doctor to rule out a metabolic issue. I am friends with one lady who had a doctor that kept telling her that her adverse reactions were "normal"....she now knows she has a metabolic disorder and has brain damage from the medication.

If your doctor tells you that urea cycle disorders are only for children at birth, your doctor is misinformed and has not stayed updated on medication information. They use to say the disorder was 1 in 80,000 and now we think it may be 1 in 7,000 and may end up lower in the next ten years. Babies may not display it at birth but it can and does show up during childhood, teens, and adults. Stress can cause the metabolic disorder to start revealing itself. It has many symptoms seizures are part of the symptoms.

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. The worst seizure I had status eliptus? where you go rigid, it took four parametics to unpeal my grip from a kitchen cabinet (have no memory of) and then I went into a coma --it was all triggered by an atomspheric change --a barometric shear ---it dropped one point in less than a minute as a storm crossed the city ---my brain could not take it because it affects the oxygen/nitrogen in the blood. Now I have to watch weather changes carefully. I have made sure I was lying down until they had my medications figured out ---a great day in my life.

Best of luck to all. I try to help one life a time. The urea cycle metabolic disorders (UCD) are silent. I had 8 miscarriages when younger--the UCD can do that. Then when they put me on depakote I turned into a monster--having UCD can do that too. 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 or down plays personality changes, anger, etc from taking depakote need to be bonked ---the warning is with the medicine. Please go verify you don't have a urea cycle disorder which does have seizures...do it before anything else if you can't tolerate depakote ...If you don't have any urea cycle disorder, then you are ahead of the game and just having adverse reactions to the drug itself.

Good luck.

Depakote has warnings on the box.  But doctors and pharmacists don't explain them don't explain them because they don't understand the depth of the possible genetic disorder that the reactions may be indicating.  If the drug is causing profound personality changes and such you should go to see a metabolic specialist.  Failing to do so may, cause long term CNS and brain damage if you do have a metabolic disorder.  There is a certain set of metabolic genetic disorders that may reveal themselves when a patient takes depakote ---I was one.  Even though we did not know what was happening at the time we were back at the neurologist the first week after starting the depakote (pre warnings). Both myself and hubby said no more!! I was switched to something else. 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.  I found the only doctor in my large city that treated my urea cycle disorder.  That is what severe reactions to depakote may be indicating.  You may not have this.  But have it ruled out.  There is now medical treatment that can also eliviate some of the issues related to your problems. The most common UCD is ornithine transcarbamylase dificiency.  If you have it, the longer you are on depakote and go undiagnosed.....the more subtle brain damage will occur.     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 <a href="http://www.nucdf.org/">www.nucdf.org</a> will help you find a metabolic specialist in your area. If your doctor dismisses your concerns about change in behavior and personality while on depakote ---contact <a href="http://www.nucdf.org/">www.nucdf.org</a> and find a doctor to rule out a metabolic issue.  I am friends with one lady who had a doctor that kept telling her that her adverse reactions were "normal"....she now knows she has a metabolic disorder and has brain damage from the medication. If your doctor tells you that urea cycle disorders are only for children at birth, your doctor is misinformed and has not stayed updated on medication information.  They use to say the disorder was 1 in 80,000 and now we think it may be 1 in 7,000 and may end up lower in the next ten years.  Babies may not display it at birth but it can and does show up during childhood, teens, and adults.  Stress can cause the metabolic disorder to start revealing itself.  It has many symptoms seizures are part of the symptoms.  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.  The worst seizure I had status eliptus? where you go rigid, it took four parametics to unpeal my grip from a kitchen cabinet (have no memory of) and then I went into a coma --it was all triggered by an atomspheric change --a barometric shear ---it dropped one point in less than a minute as a storm crossed the city ---my brain could not take it because it affects the oxygen/nitrogen in the blood.  Now I have to watch weather changes carefully.  I have made sure I was lying down until they had my medications figured out ---a great day in my life. Best of luck to all.  I try to help one life a time.  The urea cycle metabolic disorders (UCD) are silent. I had 8 miscarriages when younger--the UCD can do that.   Then when they put me on depakote I turned into a monster--having UCD can do that too.  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 or down plays personality changes, anger, etc from taking depakote need to be bonked ---the warning is with the medicine.  Please go verify you don't have a urea cycle disorder which does have seizures...do it before anything else if you can't tolerate depakote ...If you don't have any urea cycle disorder, then you are ahead of the game and just having adverse reactions to the drug itself. Good luck.