March 6, 2010

Keppra: Love and Hate

Last Tuesday Bertrand had, by far, his best day in weeks. He was engaged, happy, smiling and giggly. Bertrand was finally able to sit back up on his own, play with a toy, and started to make wonderful new sounds--the most exciting of which was "our honey go". He was so energetic, in fact, he didn't nap all morning or afternoon. Regardless, I was so overjoyed at how well he had turned the corner... that was until I finally tried to put him down for a nap at 2:40PM. That was when I discovered that Bertrand's Keppra dose from the morning, was still sitting next to his bean bag, un-administered. Shocked, I gave Bertrand his missed dose--and I haven't seen that happy, chirpy baby ever since. :(

I am conflicted.

We had already, on our own initiative, slowly reduced Bertrand's Keppra from 400mg twice a day to 300mg twice a day with no corresponding increase in seizures. Taking the dose any lower, however, should probably be vetted by Bertrand's neurologist. Given prior conversations on this topic, the answer will be to increase the keppra, not to decrease it. But, at what point do we say that the attempted seizure control, at the expense of our child's happiness and personality is not worth it? After all, it's not clear to what degree the Keppra is controlling seizures versus the ketogenic diet.

8 comments :

  1. You already have your answer --- but yes, I can definitely see the conflict. But what about another newer-type seizure medicine? Or do they all have a negative effect with the keto diet?

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  2. Hi Cristina,
    I think Keppra needs to be weaned off. Many parents mention that Keppra and Keto diet to not mix well. If you have seizure control then its time to wean keppra not increase it. That's my two cents on it. Samie has been weaned off keppra and still seizure control.

    Hope you are all doing very well.

    Hugs, Nicole

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  3. You know what Cristina? (Yes, you do, you know this already.) No one knows what any drug or therapy is going to do for an individual; that's one of the wonderfully craptastic things about epilepsy.

    You are educated, you are dedicated, and you know Bertrand better than anyone. You've seen how his jerks would stop within a specific period of administering Keppra (pre-keto) and you've seen what the diet has done for him. You have a good relationship with Bertrand's whole team and it sounds like they respect your opinions.

    I know you feel conflicted, and I've been there, too. But I bet one of those voices in your head is arguing louder than the other. What does your gut tell you?

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  4. I second everything here.

    I also want to encourage you to remember that Bertrand's neurologist is not in charge. I don't say that with any disrespect, but rather as a fact. You and Matthew are in charge of this decision. The neurologist offers priceless knowledge in the area of pediatric neurology, but no one -- no one -- has as full a grasp of the whole "Bertrand picture" as you do. You are not only his parents, but the leading experts in the field.

    We're down to 250 mg 2X day right now from 400 (with plans to go down to 200 later in the week - our neurologist cleared us to decrease by 100 mg per dose per week, but that was a little too fast for our taste, so we slowed it down a bit) and I'm sitting here watching Collin try to roll over. He's been squealing for half an hour. I know all kids are different, but your story just struck a chord with me.

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  5. Hi, I think he should be weaned off too. What is the point of the ketogenic diet if he is on keppra too? Tell the doc that is what is going to happen. Increase the ratio to 4:1 to compensate and see what happens. (All done under doc and nutritionist supervision.) Sometimes docs are way too pill happy. Doesn't the strength of keppra double when on the keto diet? It's not like he won't be on no seizure control the diet will give him enough control that it won't be harmful. We had to start calling the shots with Ava and her medical team, no one knows Bertrand better than you guys.

    Good luck!

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  6. Hi Christina,

    We have had lots of similar frustrations. The doctors insist that my son's his zoning out is all due to seizures and his "underlying neurological disorder" (they love to talk about that), but I and every other parent with a child with epilepsy knows that drugs are at least partly to blame. The good news is that you DO have a giggly, smiley, happy guy underneath those drugs. One way or another, in time I bet you'll get enough seizure control without the Keppra that you'll see more and more of him.

    Best,
    Ashley

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