Evidently my girl is overtaken by the Clonazepam. She is lethargic, quiet, in a fog. To be honest, she looks wasted. But - no seizures in two days. Is this the trade off we have to accept? Ugh!
We are only supposed to be on the Clonazepam for a couple of weeks until the rash from the Lamictal is gone. Then we switch to Keppra, which the neurologist says doesn't dope the kid up like the Clonazepam.
For those of you with kids on Keppra or Clonazepam - does this play out for you? Was your kid drugged up on Clonazepam? Are they drugged up on Keppra?
I hope not. I am really missing my smiling, talking Peanut.
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
9 comments:
Marie was on Clonazepam and then Diazepam and never was out of it with either. We started at a low dose and worked our way up though, and what you said before is righ, their bodies become "immune" to it after awhile and you have to up the dose every so often. For Rie Clonazepam was a miracle. It managed her movement disorder (she did not have seizures) and gave us our girl back.
The keppra was terrible. She was on it briefly while we thought she was seizing and she was a zombie, I hated it. Some kids have a problem with aggression too, from what I learned when I researched it when Rie was on it.
Ben's on kepra. He's good on it. Not dopey at all. I hope you find a good balance soon. I'm glad the seizures are under control for now too! :)
Zane was on Keppra for almost two years and he was fine on it. It didn't make him drowsy nor did it make him moody. Good luck with the whole cocktail chaos.
Jax is on Keppra and he's not dopey at all. But he's also on pretty high doses of that and phenobarb,so he may be used to the high doses. Your doc should probably lower the dose a little. Call them.
Gavin was on Phenobarbital and Topomax, along with Keppra at one time. He was weaned off the other two about a year ago and is only on Keppra right now. When he was on the other two drugs he was very dazed, but since being only on Keppra, he is very with it! Keppra was our miracle drug! It stopped his seizures and it hasn't had any adverse affects with Gavin at all!
I hope that it works well with Peanut too! Watching your child having seizures and being out of it is so depressing! I'll be praying that both of you find relief from these things very soon!!! HUGS!!!
Ahhh that's no good!! I'm sorry, I hate it when they are drugged up and not themselfs. I hope the doctors can find something better for her. I'll be praying for you guys!!
Oh my goodness! I have missed so much in just a short time. Poor Peanut... and poor you! I am so glad that her seizures are calmed, but not glad that she's so zonked. And that rash... holy moly. Not fun... and scary looking. I would have been freaking out, too!
Hoping they get this all worked out so that Peanut is back to her sweet, smiley self ASAP!
(Thanks for the lemonade award way back when! That was so sweet! :-))
I see kids with medical problems for my job, and the ones I remember were on Keppra seem to do well without making them all drowsy. I remember a few children who had to have combination treatments, and ended up just on Keppra, and the change was startling. I hope it works for her without the zonking.
We had a pretty good time with Keppra. It was the first seizure med that worked for our little guy. It took him 3-4 weeks once started the dose or made a big increase for him to get used to it. During those 3-4 weeks he was tired and not too with but once his body got the hang of it, he was good to go!
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