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Keppra Side Effects?
Hey everyone!
After Maura's revisit to seizureville last week, we were in the middle of a med mixup, and on top of that, they messed with her third med...
She was taking 3.3ML of Topamax, 2.7ML of phenobarb, and 1.1ML of Keppra.
They weight adjusted her to 4.4 of the Topamax at our neuro appointment two weeks ago, after she had had only one random seizure in almost 2 months. They also decided they wanted to start weaning her off the phenobarbital, so they lowered that to 1.8ML for 2 weeks, and we'll wean down from there over the next few weeks. In the process, she had more seizures..It could be that the random seizure was the start of it, and she needed the weight adjustment of the Topamax, or the decrease in phenobarb, but we don't know (do you ever?! heh) and they decided to up her Keppra...
My child has turned into an irritable cranky beast. In the last 4 months, she has been the most pleasant child. I call her my little cheeseball because she smiles at me with the cheesiest grin all the time. People look at her and say what a good baby she is...but all of a sudden, she cries at night, for a good hour, hysterically, red face, tears, sobbing and all.
I'm wondering if it's the Keppra. Does anyone have any experience with increasing Keppra and seeing gas issues? She kicks her little feet and arches her back, I'd swear she had gas pain.
They also told me I could see some withdrawal effects from the phenobarb, so I don't know what's what. The last week has been absolutely insufferable. I'm hoping this isn't the "new" Maura...
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Re: Keppra Side Effects?
I hated when Lydia was on keppra. It was horrific. My sweet baby became a demon child and couldn't help it. The anger/behavior issues/screaming/irratibility are all side effects. My oldest niece went on Keppra two years ago and my mother called after a few days wondering wth happened to the kid she knew.
I don't know her seizure history, but give it another week or so and see if it settles down. Any increase will involve these side effects reappearing. After 3 months on Keppra our neuro called it a day and pulled her off of it. It helped none and we switched to depakene (Lydia had already failed zonegran and she's allergic to topomax) which was our wonder drug.
Good luck!
DS has been on Keppra for over a year, and he is a very mellow dude. That said, several docs have warned us of "naughty behavior" as a side-effect. They both said to let them know if that became an issue.
We weaned off pheno and onto Keppra. We did it very slowly, over the course of several months. Hopefully what you are seeing is more withdrawal from the pheno, and not the Keppra naughties.
Is she on Keppra brand or generic? Some people do better with brand over generic or vice versa. Behavioral issues can arise for some patients, but we were told by one of DD's previous neuros that B vitamins can help combat that. Maybe that is something you could ask about.
DD has been on Keppra (brand) & Clobazam for over a year & has had no side effects other than drowsiness when we first started. She still has breakthroughs though, mainly when overtired or sick. I hope you can find the right meds for your LO & get some good control soon. It has to be especially difficult to get the dosing right when they are so young & growing so quickly.
After 7 long days of cranky baby, she was more herself today...it all started the DAY we upped her Keppra...so I'm really thinking that was it...we take another step down on the phenobarbital this Wednesday, so we'll see if that does it again...then I'll know for sure...I asked to take the steps slower...we were shooting for a 6 week wean (we are in week 2 now) but maybe 8 sounds more realistic...I have to email my neuro this week about that, she was on vacation last week but STILL got back to me to figure out meds (great huh!? I don't think all doctors are like that!) I said we could talk about slowing down the wean this week...but really, phenobarbital is all the girl knows...she's been on it since she was less than 2 full days old!
Assembly Reqd, are you on a seizure specific board? I'm glad I found this forum...for four months I've felt so alone. I've got some great and supportive mama friends (Maura is number 2 for us, so we've got a good circle) but it's not the same...they all give me good thoughts when we have these days of seizures/med mixups, but I just want to vent sometimes to people who GET it...you know?
I am on a list-serve for Corpus Callosum Disorders. The CC is the main superhighway for the neurons in the brain that need to travel from the right side to the left side. Children born without a CC are very prone to seizures. Nate's CC is hypoplastic (thinnner than normal). I try to keep ahead of any potential dx he may have in the future and seizures are one of them. He does not have epilepsy at this time.
There are a few seizure mommies that post here. I am sure if you title your posts with "seizure" or "epilepsy" they will be happy to help you out. I would ask for links to support groups or list-serves from them.
thanks so much!
I thought I'd drop a quick update....Maura's nightly freakouts stopped on Sunday night. Saturday was her last freakout...I'm absolutely sure it was the Keppra increase and not the phenobarbital decrease, as we just decreased the phenobarbital again the other day without the same repercussions...so now I know to look out for the Keppra naughties on any increases (and boy did that suck for a week! I'm glad it isn't permanent!)
I asked my neuro about the B6, and she told me that yes, it is used, (which you guys know) but they don't really know the effect on babies as small as Maura...we are already in unknown waters with her Topamax, which I have to have specially compounded for her, and I had to sign off on in the NICU because it wasn't approved for use in newborns! So considering her naughties have settled themselves, we are holding off on the B6 for now, but it's on the table for future discussion...