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[epiaut]

Hello,

I am the mom of a 19 yr. old autistic boy who has been having complex partial seizures since he was 13. He was on Keppra for 5 years, having a seizure about every 3 months. The neurologist would increase his dosage each time he had a seizure thinking he may be out growing his dosage. As of April 2010, he was on 4000 mgs of Keppra a day and he got another seizure. The Doctor added vimpat to the Keppra and now he is on 200 mgs a day of that.

My son is normally a very sweet, easy to manage child, but over the past year he has become increasingly unhappy, angry, and aggressive to the point of biting people. I guess you could say he has terrible mood swings. We are afraid to take him to public places, where as a year ago, we could go anywhere with him.

We started taking him to a psychiatrist to see if we could find something to combat this behavior. In the process of talking with the Psychiatrist, we have been thinking that his behavior may be attributed to the Keppra. When he started on Keppra in middle school, there were a couple of incidences of biting, but that was all, and we thought it was from adolescent hormones. Through the next 3 years of school, there we maybe a couple of more aggressive episodes, but we thought it was hormones again. He isn't verbal so he can't tell us what he is feeling. So, we don't know if he is suffering from negative side effects. Like I said earlier, over the past year it has gotten really bad.

Does anyone have any experience with Keppra or vimpat?

Thanks

[momof3boys]

Ive been taking Keppra since the age of 18, or 17 years old. Im now 30. I was put on the Keppra 500mg tablets, and was at 3000mgs of Keppra. I was also taking Carbatrol ER, 1200mgs a day, til March of this year, after doing a video EEG my dr said he didnt think I needed the Carbatrol ER and just put me back on the Keppra. Prior to having my video EEG in March of this year, I suffered from really bad headaches for all those years since starting the Keppra. My last dr tried to increase my Keppra to 4000mgs a day, thinking the headaches were part of seizure activity wanting to come on. But instead, it made me very sluggish, tired, and I broke out with seizures two weeks after starting the 4000mgs. So I went back, to find the dr I was seeing, was transferred to another hospital, and I got put with his partner. His partner, whom I am now seeing, switched me over to the Keppra XR, and put me back down to 3000mgs a day. The headaches has since dissappeared. I wish I would have known about the Keppra XR years ago, instead of suffering with headaches all those years. Now after I had the video EEG, I went for a couple of weeks with only being on Keppra XR, and had some complex partial seizures. So my dr added Vimpat. I started out taking 50mgs and worked my way up to 100mgs, where I started to notice how I was becoming angry over the stupidest little things. I would get upset, start to cry, and then didnt care about anything or anyone no longer. When I saw this continue, we contacted my dr's office and the dr said its a side effect of the Vimpat. For some people it can work well, for others it can cause suicidal thoughts, depression, anger, sadness, etc. They tried to cut my dose back down to 50mgs from the 100mgs and things just were not getting better for me. They took me off, and i tried Lamictal, but had an allergic reaction to it. Since May 6th, Ive been only on the Keppra XR 3000mgs and Ive had no seizures!

I have read that some people experience anger issues with Keppra. Ive been taking it for over 12 years and havnt had that issue. But the Vimpat I did have that issue with. Have you tried adding a Complex B vitamin to the Keppra? I was told that it helps with anger issues that Keppra can cause. Ive been taking one since November of last year, just to see if I saw any good changes and Ive noticed Im more laid back now, instead of being uptight about things.

If you have any questions please feel free to contact me.

[Nakamova]

Hi epiaut, welcome to CWE!

Keppra is well-known for causing moodiness and "Kepprage". And in many cases, upping the dose will increases the likelihood of side effects, so the timing in your son's case suggest that's what may going on. Vimpat can also cause mood swings, so it may be contributing to your son's aggressive behavior.

Some folks have found that taking a B6 vitamin can help with the mood stuff. You might want to check with your son's doc about that possibility. (It's best taken as part of a B-complex vitamin, with breakfast or lunch).

There may be other anti-epileptic drugs your son could try that might be less likely to affect mood. In addition, ask your son's doc about using diet as part of his treatment -- the Modified Atkins Diet (MAD) has shown success in helping to reduce or control absences and partials seizures. More info here: http://www.atkinsforseizures.com/

Best,
Nakamova

[epiaut]

I forgot to mention, this past Friday, I read about vitamin B6 and I have been giving him 100mgs 2xs a day. I'm not sure it's helping, but he hasn't gotten violent. He has been grumpy. I also forgot to say that 2 weeks or so ago, we reduced his Keppra to 2000mg/day. I don't think it's made a difference. Since he started with the vimpat over a year ago he hasn't had any seizures (that we know of, they could happen at night, we don't know) which is a good thing.

I'm wondering if there are any members who have autistic children who have seizures also.

[Nakamova]

Yes, there are CWE members with kids with autism. Below are some links to CWE threads about autism, and you may find others by using the "Search" tab in the bar at the top to search for references to autism. You could also check out CSWE's "The Nursery" forum.

Please read, I think my 10 yo son might be having seizures
Introduction

[valeriedl]

I am 35 and I've been on keppra for a good many years and I know I suffer from Kepprage.

I have alot of problems being around people. I'll get angry at people in stores and other places and end up telling them off before I realize I'm even doing it. I espically have a hard time around children the most. I have a friend who has a 4 year old daughter. She brought her over to my house once and her little girl started coloring on my coffee table. I blew up on her, without even realizing it and making her cry. My friend kept appologizing telling me she'd buy me a new table. Luckily I realized I was screaming at the kid and we got the crayon off the table. I got her something else to color on and told her (politely) that she was to color on the paper and not the table.

My husband and I try to do things - grocery shopping, going to movies and other types of things like that when we know the places won't be busy so I won't have to deal with alot of people around.

I hope you find something that works for your son.

We've found Sunday mornings are a good time to go shopping and going to the movies at the first showing on a week day are good. I've blown up on people in movie theaters many times also.

[Endless]

epiaut,

Welcome to the forum. I'm so glad you found us in here. Great support, lots of knowlege, and nice people, too.

There are lots of parents in here, some with children with autism. I'm sure they'll chime in soon.

Keppra... Keppra was the first drug that I was on for epilepsy. It made my moods swing wildly, with anger outbursts that actually scared me sometimes. Vitamin B complex helped some. Everyone is different. I'm on Lamictal and gabapentin now which seems to be a better fit for my brain.

Side effects can start one day after starting a drug, or 10 years after starting a drug - really, any time. And any time I feel a big shift in my moods the first place I look is my meds and my seizures.

I'd definitely call your son's neurologist and tell him about the behavioral changes. The doc may want to make a change in your son's medication types or dosage. If it's a medication that's causing the problem, more meds to control the side effects could just cover up the problem. And the "more meds" come with side effects of their own.

[epiaut]

Thanks for all these helpful posts. They are a big help.

My son's behavior really started to deteriorate over this past year. And that is when we started on the vimpat. As I said, prior to that, we did have rare episodes when he was on just the Keppra, but over the past year and he really has gone downhill over the last 6 months. We used to be able to go anywhere with him, but now we are scared to do that. I have tried the B6 since Friday and he hasn't "blown", but he has gotten "the rumbles" we call them. We used to say that all he was was "sweetness and light," but now we hardly ever see that.

We are still waiting to hear back from the neurologist at the moment. It is taking forever. I know it sounds crazy, but we'd rather have the seizures than have to live like this.

[Nakamova]

I know it sounds crazy, but we'd rather have the seizures than have to live like this.

Not crazy at all -- Most CWE members have had that thought from time to time....