Special Needs

Keppra Users

My DS was prescribed keppra on 9/23 and since has had 1 day a week of seizures that come in threes at every 2 hours a piece (for a total of about 12 seizures in 4.5 weeks). His first bout of seizures started on 9/23 too. His neurologist has upped his keppra by .50ml everytime he has another round of episodes. How long did it take till the doctors found the "right" dose for your child, if at all? We have an appointment at Vanderbilt on Tuesday and I'm just getting anxious because everything we read seems to suggest keppra is not the right type of medicine for his seizures (tonic-clonic... he's had grand mal and petite mal). We are feeling defeated. We know we are still in the discovery stage and his MRI and EEG's showed nothing. When he has his bouts he misses out on the entire day because he's tired and grumpy and we think it might be starting to affect his development.  Any suggestions appreciated!

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Re: Keppra Users

  • Boy is he cute!!! :)

    I am in no way an expert or medical professional, just a fellow seizure mom. Here is what we experienced and what I understand about epilepsy. I hope it is helpful! :)

    We started with phenobarbitol when DS first started having seizures, then took two months to wean off that and onto keppra. I am not sure how it would be just starting on keppra with nothing else. Our DS also has tonic-clonic seizures and they started at about 3 months of age. 

    From what I understand, phenobarbitol is more sedating and at this point that sounds like what you may need. It's not ideal for long-term use, but it can give the brain a good calming treatment.

    Do you have a diastat to use if he has a cluster like the days you have mentioned?  

    A GREAT resource for seizure parents is this book: Seizures and Epilepsy in Childhood: A Guide. 

    Hang in there. It will get easier! 


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  • Thanks for your response. Today we woke up to another seizure we are now back to back days. We now wait for the next two seizures that always follow. The longest he's gone between them is two weeks but they've now been coming weekly and now two days in a row. It doesn't seem like the keppra is helping at all! He isn't taking much at all though. 2.5ml and from reading he is barely at the starting dose for his weight. We do have the diastat.

    I called his neurologist yesterday, per their request everytime he has a seizure so they can track them and I was told I'd get a call back for a recommendation. Normally they consult his neurologist and she ups the meds. I'm a little ragey right now because they said I would get a call back and I didn't... And now we are back to back days.

    How is your LO doing on keppra? Have things improved for y'all?? I've read so many bad things about the phenobarbitol that I'd be so nervous to use it.

    Thanks for that recommendation on a book! I am definitely going to pick it up.
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  • I would say if you get a bunch of seizures today to go to the hospital. Does your hospital have an epilepsy monitoring unit where he could be admitted for an extended EEG? That is what ended up happening with us when DS outgrew his dose after about a year.

    The Keppra works for DS. He is 3 now and takes 5 ml twice a day. He will have breakthroughs when he has fevers, but that is pretty typical since fevers make your liver process everything more quickly, thus pushing the meds out too fast . We get blood levels taken every few months, to make sure he has the right amount in his system. This could be worth doing for your little guy, to see if he is at a therapeutic level. It's just a quick blood draw. Ours does take a few days to get results back, though.

    Since he is having so many and the first EEG was clean, this could be an opportunity to get some data on him, if your hospital has an epilepsy unit. Also, if you don't hear back from the neuro this morning, call the hospital and ask for the on-call neurologist. Tell her/him about all the seizures the past two days and that the previous EEG was clean and that the Keppra is not working.

    But if it gets bad today, I would just go to the ER.  Please keep me posted! ((hugs))

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  • I don't know alot about Keppra even though both of my boys are on it, but it doesn't sound like the Keppra is working for your little guy.  

     My boys seizures are focal and not convulsive - they have panayiotopoulos syndrome where they vomit and are not reactive for up to an hour.  Joey's had 4 seizures .. they range from every 6-12 weeks and only happen when sleeping. Epileptic patterns show up on his EEG.  Nathan's had 2 seizures so far... 6 weeks apart, also show up on EEG.  And yes everytime they have one, their Keppra dose has been increased, BUT like I said they have having one every 6-12 weeks.  We started with Trileptal and they both had an allergic reaction to it.  My guys are taking 2.5ml twice/day while weighing 38lbs. at this point... my understanding is this is a pretty low dose.

     As for the previous poster, our neurologist said the Trileptal levels could be measured by a blood draw, but that the Keppra ones are not as accurate and really can't be figured out by a blood draw because everyone's body metabolizes it differently.   


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  • Thanks ladies. I really appreciate the input.

    I ended up calling the neurologists office and talking to the after hours physician. Apparently the nurse I spoke with yesterday "forgot" to call me to tell me to up his keppra to 3ml. He is about 24lbs and I know there is still some room to go up (at least from what my H and I have read). Upside is: We are meeting with his neurologist on Tuesday. After the first cluster of seizures she said we'd meet monthly so I don't feel totally thrown to the wolves on all of this but I'd like to see some improvement. Patience is not my strong suit and I feel like my heart is heavy and like life is never going to get back to normal. 

    Two other positives: (Knock on wood!!!) he only had 1 today. Any other seizure that we've seen has ALWAYS been followed by 2 more. So, that feels like a step in the right direction. Also, my H and I both agreed his seizures don't look as... scary. Obviously we've seen 12+ so it doesn't hit us like the first few did but he isn't convulsing as much and he isn't turning blue all over. Downside is that these seizures really put him out for the entire day. For every 30 minutes he is awake he needs to nap for an hour or so and is grumpy the entire day. I worry about his development when he looses whole days like this. 

    We do have a clinic at Monroe Childrens Hospital (Vanderbilt University) that they might admit him into in the upcoming weeks to do an extended EEG. Bright side is, his doctors seem to be very proactive and he had an EEG within hours of his first cluster of seizures and an MRI the following day. He's had one more EEG since.

    Many thanks to you ladies for your help. I will update after we meet with his neurologist on Tuesday. Hugs to you ladies and your kids! 

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  • Interesting! Well, it's been working out well for us the past year. I think it is valuable to compare against your own levels which have been therapeutic in the past. 
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  • I'm never sure what is helping with my daughter...it seems like she's on so much that it's hard to tell what is causing what, you know?  I would just ask the next time you go, and my opinion is that if they don't give you an answer, that it isn't the right doctor for your child.  Ayva had a neuro in the very beginning that was very much a drug pusher and didn't really give an explanation about it so we switched.
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