Switching meds and I am scared

[mlbandura]

My son Luke (5 yrs old) was put on Trileptal in April of this year after having 3 seizures. It seemed to be controlling them really well until recently. He started having simple partials and one complex partial that I am aware of. We upped his dose per the advice of his Doctor. It had been 2 and 1/2 weeks and this past Sunday he had a generalized seizure in his sleep (early morning). So, after speaking with his neurologist about the recent activity he would like to switch him to Keppra rather then upping the Trileptal again. He is already at the highest dose for his age and weight. Does anyone have a child that is on or was one Keppra. What are your opinions on it? I have read the side effects and am a little worried. What if this makes him have more seizures or changes his sweet little personality? I thought things were going so well and boy was I slapped back into reality.

 

[epileric]

The good part is that you know what to look for as far as side-effects go. I"m sure you've also read on this site that vitamine B6 helps some of those side-effects in some people

As far as personality change goes, there really isn't a medication that won't change someones personality to some degree. I've been on AEDs for all but 6 years of my life & every now & then I do wonder what my personality would be like without my meds but it's not worth it to me to have constant convulsions.

The big question is "is it worth controlling your sons seizures?"

Also, remember that the side-effects are more common with people whom keppra doesn't seem to help. Even according to my neurologist the people whose seizures it controls are usually the ones with the least side-effects. I wish all AEDs worked that way all the time

 

[Endless]

Everyone has a different set of side effects for any given drug. There are some people who don't experience serious side effects at all. Just stay in touch with what your son is feeling. If he is experiencing side effects then the question needs to be asked, "are the side effects worse than the seizures, and/or is it worth trying another med?"

Most people in here that have been on Keppra think that B vitamins help them. If you put your son on B vitamins be sure to do it with advice of his doctor, to avoid overdose and toxicity.

I am one of the people who has struggled greatly with medications. After Gabapentin, Keppra, Topamax, and Trileptal, I'm now more or less settled down on Lamictal. The lamictal seems to have the least side effects for me, and I'm relatively happy with it. Other people swear by the four I was on before this and are perfectly happy on them. So, it just depends on the person.

Will you let us know how you are doing?

 

[Meetz1064]

I've been

through quite a few AED's, and Keppra was one of them that gave me some loopy side effects. Kaleidoscopes and all. I was on it such a short time that I didn't really develop a huge personality change if at all, but the other side effects enough to drive ME batty.

Vitamins DO help, but DO talk to your doctor as well. Journal everything, just so that you can document whether the behavior changes ARE from the meds--or maybe they're not.

I wish you luck. I wish I had some other advice--unfortunately, I don't. I'm the patient myself, not a parent with a child who has E. :-/ onder:

 

[jordanvp]

I've been on keppra almost my entire "seizure life" and I never really noticed any side effects. Drowsiness was there for a little while, but other than that nothing. I hope the best for your son, hopefully they control his seizures more than they do mine

 

[mlbandura]

We started the Keppra last night (slowly working it in and the Trileptal out). I got a call from his teacher today saying he was acting not like him self. She sent me an email with what she had experienced with him today. Let me note that her son also has epilepsy so she is aware of the different types of seizures and know that there is not just one kind.

Here is her email:
I wanted to let you know that Luke just did not seem like himself today. He seemed like he was in his on little world, kind of out of it but very hyper. I had to tell him several time to do things, having to call his name 3 and 4 times to get his attention. When I had lined the kids up for recess I told him personally 3 times to put his coat on and he still walked out of the room with out it. Then when I asked him what did he forget he walked back to the room and turned off the lights and got back in line. I then told him no it was something else and to look at everyone else and tell me what he forgot. He couldn't, I had to tell him to go back into the room and get his coat. He was also on the ground allot. He would be walking in line one minute and on the ground laughing another, at one point he flipped out of his chair and almost did a headstand. Couch Ryan said he was the same way during P.E. today, spending almost 3/4 of the time on the ground. Also, when we came inside from recess he keep rubbing his ears when I asked him why he told me that he thought they were cold. All of this is very out of the ordinary for him and wanted to make you aware.
Mrs. Joy Gaither
Prekindergarten Teacher

When I questioned him about this he did not remember anything about being on the ground laughing or about his coat. He also could not tell me what he had for lunch or breakfast today and he complained of being tired. He even said that he feels so tired that he is going to fall asleep at dinner. That is not like him in fact it is a battle to get him to bed most nights. He is still on the full amount of trileptal until we get the Keppra into his system. Could a seizure medication cause him to have more? Does this even sound like seizure activity? It just bothers me that he does not remember half of his day. I feel like just taking 1ml of the Keppra wouldn't cause him to do such off the wall personality wise things. I will be calling his Neurologist, I just feel like I am always bothering that man with my many worries and questions. I know you guys are not doctors but at least you guys make me feel comfortable and give a lot of support and suggestions which are always welcome.

 

[Nakamova]

Yes, some seizure meds make things worse, including increasing seizures. Has he already tapered a little off of the Trileptal? That might also be contributing.

 

[Endless]

Yes, a seizure med can make him have more.

Side effects of trileptal:

Increased Seizures

http://www.drugs.com/trileptal.html

Keppra side effects:

increasing or worsening seizures

http://www.drugs.com/keppra.html

For me, low dose Gabapentin seems to make my seizures worse.

I'd call his neurologist. The number of incidents he had at school says to me that his reaction to the medication, or escallation of seizures, needs some quick attention.

 

[helga106]

I would suggest sticking it out with the Keppra for a month or so - it takes a while to get into the system and for people to adjust to it. At any time changing meds can cause strange behaviour and commonly bring on seizures, now is a good time to keep an eye on him.

When E was on Keppra he was extremely depressed, wanted to hurt people and could only see red. All in all he was a horrible person on the medication, which he is the furthest thing from. He had extremely large amounts of memory loss that got worse the longer he was on it (a total of 9 months) to the point he left our gas on one day and filled the house with it (scary). He also had absent moments often where he just didn't appear to be home. We have has a few issues with allergies to medication and all kinds of things so E is a special case. As everyone has said everyone is different - one persons poison is another's miracle cure.

Hope things improve.

 

[mlbandura]

Thank you all. I did speak to his neurologist yesterday. He would really like to keep him going on the Keppra but not lower the Trilpetal dosage as we were doing. He wants to give him 3 weeks and see how he does and then go from there. Of course he said to contact him if he continues having seizures at that rate and then we will take the nest step. Yesterday seemed to be a good day so I am hoping that this was just a glitch. Only time will tell.