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2 y/o on Keppra, won't talk/walk...just not right
Sat, 05/19/2007 - 02:11Topic: Parents & Caregivers
Hello! So for those of you who haven't read any of my posts my daughter Kaitlyn is 2 years old and was just prescribed Keppa, 1 ml (100 mg) twice a day... and then up it the following week. She has complex partials and simple partials. So today we gave her, her first dose of Keppra at 10 am... she also has a cold right now with fever but other than that has been normal and happy and coherent. About 10 minutes after giving her, her Keppra she got really sleepy, uncoordinated and had a hard time walking and talking. We thought maybe she was just tired, so she went to sleep. After she went to sleep at about 10:15 she didn't wake up but for about 2-5 minutes total. When she would look at you she would just stare and didn't even look like she was there. As we were carrying her she was just like dead weight and was all floppy. We waited for awhile, about around lunch time I started to get worried because Kaitlyn quit talking... from 10 am until 9:45 pm she said maybe a total of 12 words, didn't pee at all, couldn't walk and would never respond when we said her name. We ended up rushing her to the er at about 6:30 pm and they did nothing and said nothing. I am just wondering if anyone else has had an experience like this?? Once 10 pm came around she started to talk a little more and was a able to walk finally, but she still doesn't look like she's there.
Please help, this has been the worst thing to see because it's like she lost all ability to do anything. She quit eating, drinking, talking, walking, going pee..... one doctor said to giver her her meds as prescribed still but the neuro said to wait a week. I am terrified to give it to her again because what if it gets worse?
Comments
Re: Re: Re: 2 y/o on Keppra, won't talk/walk...just not right
Submitted by EthansMom on Sat, 2007-05-26 - 14:07
Hi Kailyn's Mom,
Wow, those are extreme sounding side effects - it sounds very scary. I wanted to share our experience with you. Our 4 yr old son has been on Keppra 2ml 2/day for almost 7 months; he was just diagnosed last Aug and this is his first med; it is doing a very good job surpressing his seizures. In our experience he was VERY dizzy, woozy and seemed "high" with the first couple doses. He had a hard time walking. We're seeing an epileptologist who suggested that we slow the titration to the full dosage way down. We started with 1/2 ml am only for several days, then 1/2ml am and pm, then 1ml am and 1/2ml pm for a few days, etc. up to the full dose. She said if he continued having trouble walking, to keep the dose as it was, not increase at all untill he'd adjusted to it. This helped a lot. I'm convinced we would have seen more adverse side effects if we had gone faster (as his neurologist had recommended). I'm very sensitive to medications - usually need a low dose, and I think he is too. The early side effects we saw were much less severe - he was a little uncoordinated - and went away completely after a few weeks. I do know that with lots of meds the early side effects tend to go away after the body adjusts. That has happened with me and what seemed to happen with our son. Maybe you could try starting it again at an even lower initial dose, 1/4ml just 1x/day, and build very slowly from there. Also maybe her fever had somehting to do with it. That said, the side effects you mention do sound extreme and if it seemed at any point that she was totally unresponsive/having trouble breathing I would do what you did - rush her to the ER.
As a side note, if you do try Keppra again, ask your doc about adding B6 as well. We've had some behavioral problems recently and are just trying that. I've read that others have had good success with it.
My heart goes out to you - I'm still adjusting to all this as well (will I ever?) and it can be so hard, emotionally wrenching and scary. Good luck to you.
- Cynthia
Re: Re: 2 y/o on Keppra, won't talk/walk...just not right
Submitted by kaitlynsmom on Mon, 2007-05-21 - 10:53
Thank you so much!! I think that it is very possible that she was experiencing the same side effects just probably a little different being that she's young. If was like she lost all control over everything, it almost seemed like she didn't even know how to drink or know that she needed to drink. It was horrible to see her because she looked like she was just going to quit breathing. Her eyes were glazed over and just didn't look right. At 12 hrs from the dose of Keppra she started to acknowledge things, and then at 24 hrs out from the dose of Keppra she started to talk a little bit more and act more normal and now 48 hrs out from the dose of Keppra she is completely normal. She is talking fine, walking fine, and is happy again. When the Keppra was in her system she was just a zombie and had no emotions and just wanted to sleep. She fell asleep every 5 minutes and when we would try and wake her up, it was hard to do. It took us yelling at her and moving her around and she was still half asleep. Well thank you again!!