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Depakote, Behaviors, and personality

Mon, 02/11/2008 - 19:22
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 - 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.

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.

Re: Depakote, Behaviors, and personality

Submitted by shrinisun on Wed, 2010-05-12 - 17:37

Melissa:

We have daughter 5 years old (this year) and has been on Depakote for last 3 years - 125mg twice a day. From the time, mydaugter started on depakote we have NOT seen any sign of absence seizures. So the medicine is addressing the absence seizures. When the last EEG was done, it was found that she has seizures when she is
transitioning from wake to sleep state. So we are continuing this medication.

However, we are seeing symptoms associated with anxiety, poor eating habits, scared/ timid of things, doesn;t like loud motor bike or lawn mower sounds, moody and cries for every little thing and adamant.  After reading all the forums, I am wondering if all these are due to Depakote or is it  natural 5 year toddler behaviour. I would like to stop the Depakote medication or put my daughter on another. Waiting for psychologist / psychiatric evaluation. 

 Thanks for sharing your experience.

Shrini

 

Melissa:

We have daughter 5 years old (this year) and has been on Depakote for last 3 years - 125mg twice a day. From the time, mydaugter started on depakote we have NOT seen any sign of absence seizures. So the medicine is addressing the absence seizures. When the last EEG was done, it was found that she has seizures when she is
transitioning from wake to sleep state. So we are continuing this medication.

However, we are seeing symptoms associated with anxiety, poor eating habits, scared/ timid of things, doesn;t like loud motor bike or lawn mower sounds, moody and cries for every little thing and adamant.  After reading all the forums, I am wondering if all these are due to Depakote or is it  natural 5 year toddler behaviour. I would like to stop the Depakote medication or put my daughter on another. Waiting for psychologist / psychiatric evaluation. 

 Thanks for sharing your experience.

Shrini

 

Re: Depakote, Behaviors, and personality

Submitted by ChelInNY on Sun, 2010-09-26 - 11:34
Melissa - you are telling my story! Our 5 year old had been on depakote sprinkles for over 2 years now - seizure free (she was having absence at first, then gelastic, then she would just fall over; up to 30 x's/day), since May 28, 2008. We've had the 2 year EEG and they found she is still having seizure activity, so we stay on the meds. :o( The doctor keeps telling us that the behavior issues are 'most likely' due to her age. However, when I observed her in pre-k and in her (now) kindergarten class, the other kids were more attentive, better behaved, better listeners, were able to stay in their own 'personal space' whereas my daughter is constantly wanting to touch people (she is naturally a very loving child, but still), lean on them, doesn't listen well at all (home or school). She can't sit still for more than 4 minutes at a time (unless she's playing a game, painting, coloring, or watching a movie - she wiggles a lot) she will get up in the middle of a story bc she forgot something in her room and then won't come out for 10 minutes, then she has a different book or a game or toy. In school, she has been labeled 'special needs' bc of her 'issues' - her language skills (according to the 'experts') are below normal - she has a better vocabulary than me! The tests they've given her, she's scored well except in a few areas (bc its the middle of the testing or the end and she gets bored with it), has been in speech therapy and occupational therapy (to help her learn to sit still). She was in those all school year in pre-k and we have not seen much difference and her 'end of year' testing showed no improvement. I would understand if there was a problem, fine. But my husband and I truly believe that this medication has a lot to do with it. The people that need to know in her school (nurse, teachers, etc), know her 'condition' and know she's on medication. It's SO hard dealing with her behavior issues as well as worrying about her being labeled and picked on, and worrying about what this medication is doing to her little body and mind. She's such a smart girl and I hate to think that this medication is slowly taking that away. It hurts. She has another neuro appointment coming up and we do plan on asking about switching up her meds. She is currently taking depakote 3x's/day and tegretol 3x's/day. They technically aren't supposed to be taken together, however, in the middle of swapping out the tegretol, the dose she was on at that time stopped the seizures. So we kept it going. I'm more afraid of the seizures starting up while she's in school in the middle of switching meds. UGH! We're frustrated and aren't sure what's going on. I'm glad I found this site. Michelle

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