Help!!!! How do you get a child off Depakote?

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My four year old son is on Depakote. He has been on if for 2 years. Over the past year my fun loving well-mannered child began to disappear. In January the doctor increased his meds because he was still having seizures. March 4th he increased it again. With each increase my sons behavior became more uncontrollable. He started growling at the teachers, loss of attention span, mood swings that are so extreme, loss of appetite and many other behavior issues. My four year old went as far as telling me he wanted to go to heaven that he just can't take it any more! I feel so helpless!! I have reached out to his dr and they suggested to send him to a psychiatrist! My son is this way because of the meds! I have read countless blogs of similar behavior from others. So the only way they would make any medicine changes was if we drove to the drs office 3 hrs away. I will drive across the country for my son! However, we get there and I advise the doctor that I want him off the depakote as fast and safe as possible. I understand there is a weaning period but he will not wean my son at this time. Mind you the depakote does not even control my sons seizures he has had at least 10 in the past year still. So the doctor advises he is adding topamax. The doctor did not address any side effects of Topamax. At this point I am thankful that the local pharmacy does not have it in stock! I have read several posts about how some children do not sweat and they over heat.. My son already has an issue with overheating after running around for just a few mins! The doctor never asked or even advised this could happen. Then I also read parents noticed there children at times were not even able to string together sentences. Please help!!!! Does anyone have any suggestions or recommend any pediatric neurologists in NY! Sorry if this may sound so jumbled but I am at a loss and have been emotional. I just feel so helpless! I don't want my son to have seizures (that depakote is not even controlling) but I need my happy boy back!

Comments

I'm 15 years old, (I have JME

Submitted by Tiffany_bb on Fri, 2016-04-01 - 21:56

I'm 15 years old, (I have JME) they tried to give me depakote but I wouldn't let them because they said there would be fertility problems, because I wouldn't let them I ended up switching although I'm in NJ my new neurologist put me on banzel and zonegran After I took theese two I haven't been having any more seizures, they do make u loose a little weight so I drink ensure to balance it out but that's about it I don't really feel any other side effects although everyone is different

I'm really sorry your going

Submitted by Tiffany_bb on Fri, 2016-04-01 - 22:27

I'm really sorry your going through this, i really hope u guys get him off that. I wish you the best

Sorry to hear about his

Submitted by just_joe on Sat, 2016-04-02 - 11:17

Sorry to hear about his problem. This site can help you find a doctor in your area. Under help section there is a doctor section. Follow the tabs and enter your city and state.You will find many posts about this ot that medication not working. Been there saw them. I live in Dallas an have been with the same group of neurologists since 1970. The group that specialized in epilepsy is the only group in Dallas that does drug tests on medications. I have been in some of their studies for newer medications and know how they get their side effects. I also know the percentages of most side effects. People who have a bad experience will post about their issues. Would a person that are taking medications and it is doing what it was created for come on here to post it is working. No. They are doing good and why waste time if they haven't ever had an issue with the medication? Side effects do happen with most medications 5-8% of the people will get them. The posts saying it didn't work o was terrible are being posted by one of them. Which means that the other 92-95% of the people taking it are having no problems with it. I'll go with the larger numbers and at least try it.Depakote was put on the market back in the early 80's. I know doc and I wanted to try it to see if it would control my seizures better. It didn't control them any better then the other medications I was using.If the neurologist isn't answering your questions you need to be looking for another neurologist. The only way I have gotten better control of my seizures was by asking questions. The neurologist always ask questions which gives them information which can be used to adjust medications, couple medications or change medications. Been there done that and all of those things have been done for me. Yes there is a weaning period weaning someone off while putting another medication on is done so the neurologist knows where the medications should be at that time. Most people do not know that the medications builds up in the body. Just to understand what I am stating. I was in a trial (drug study) After 6 months it was extended for another 6 months. It was closed after that. About 6-8 weeks after it ended I started having a few more seizures a week so I called Doc and set up a visit. I checked the generic keppra I had been using. I gave Doc the information I had obtained. He excused himself for a few minutes. When he came back in he said it wasn't the generic. He had checked the drug study and informed me that I was one of the people in the last part of the study that was on the real medication and not the placebo. We added vimpat and the number if seizures went from 2-4 a week to a seizure every 8-14 days.I hope this helps and he gets seizure freeJoe

Sorry to hear about his problem. This site can help you find a  doctor in your area. Under help section there is a doctor section. Follow the tabs and enter your city and state.You will find many posts about this ot that medication not working. Been there saw them. I live in Dallas an have been with the same group of neurologists since 1970. The group that specialized in epilepsy is the only group in Dallas that does drug tests on medications. I have been in some of their studies for newer medications and know how they get their side effects. I also know the percentages of most side effects. People who have a bad experience will post about their issues. Would a person that are taking medications and it is doing what it was created for come on here to post it is working. No. They are doing good and why waste time if they haven't ever had an issue with the medication? Side effects do happen with most medications 5-8% of the people will get them. The posts saying it didn't work o was terrible are being posted by one of them. Which means that the other 92-95% of the people taking it are having no problems with it. I'll go with the larger numbers and at least try it.Depakote was put on the market back in the early 80's. I know doc and I wanted to try it to see if it would control my seizures better. It didn't control them any better then the other medications I was using.If the neurologist isn't answering your questions you need to be looking for another neurologist. The only way I have gotten better control of my seizures was by asking questions. The neurologist always ask questions which gives them information which can be used to adjust medications, couple medications or change medications. Been there done that and all of those things have been done for me.  Yes there is a weaning period weaning someone off while putting another medication on is done so the neurologist knows where the medications should be at that time. Most people do not know that the medications builds up in the body. Just to understand what I am stating. I was in a trial (drug study)  After 6 months it was extended for another 6 months. It was closed after that. About 6-8 weeks after it ended I started having a few more seizures a week so I called Doc and set up a visit. I checked the generic keppra I had been using. I gave Doc the information I had obtained. He excused himself for a few minutes. When he came back in he said it wasn't the generic. He had checked the drug study and informed me that I was one of the people in the last part of the study that was on the real medication and not the placebo. We added vimpat and the number if seizures went from 2-4 a week to a seizure every 8-14 days.I hope this helps and he gets seizure freeJoe

Sorry to hear about his problem. This site can help you find a doctor in your area. Under help section there is a doctor section. Follow the tabs and enter your city and state.You will find many posts about this ot that medication not working. Been there saw them. I live in Dallas an have been with the same group of neurologists since 1970. The group that specialized in epilepsy is the only group in Dallas that does drug tests on medications. I have been in some of their studies for newer medications and know how they get their side effects. I also know the percentages of most side effects. People who have a bad experience will post about their issues. Would a person that are taking medications and it is doing what it was created for come on here to post it is working. No. They are doing good and why waste time if they haven't ever had an issue with the medication? Side effects do happen with most medications 5-8% of the people will get them. The posts saying it didn't work o was terrible are being posted by one of them. Which means that the other 92-95% of the people taking it are having no problems with it. I'll go with the larger numbers and at least try it.Depakote was put on the market back in the early 80's. I know doc and I wanted to try it to see if it would control my seizures better. It didn't control them any better then the other medications I was using.If the neurologist isn't answering your questions you need to be looking for another neurologist. The only way I have gotten better control of my seizures was by asking questions. The neurologist always ask questions which gives them information which can be used to adjust medications, couple medications or change medications. Been there done that and all of those things have been done for me. Yes there is a weaning period weaning someone off while putting another medication on is done so the neurologist knows where the medications should be at that time. Most people do not know that the medications builds up in the body. Just to understand what I am stating. I was in a trial (drug study) After 6 months it was extended for another 6 months. It was closed after that. About 6-8 weeks after it ended I started having a few more seizures a week so I called Doc and set up a visit. I checked the generic keppra I had been using. I gave Doc the information I had obtained. He excused himself for a few minutes. When he came back in he said it wasn't the generic. He had checked the drug study and informed me that I was one of the people in the last part of the study that was on the real medication and not the placebo. We added vimpat and the number if seizures went from 2-4 a week to a seizure every 8-14 days.I hope this helps and he gets seizure freeJoe