anyone out there on keppra?

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jennilee

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Hi,

Our daughter is on Keppra to control her seizures and seems to be doing great on it, it is by far the best aed we have tried , despite trying several. Anyone out there on Keppra and any one had side effects? She seems to be suffering a bit from dizziness, cant ask her as she is ten mths old. Was just wondering if anyone else experiences dizziness on the drug? Thanks
 
I got diagnosed last year (age age 47) and put on Keppra. After doing some research, it seemed that keppra had the fewest side effects. They started me on 500 mg 2x a day and it has been adjusted a few times since (I am on 1000 mg 2xs now). When I started and when it was adjusted, I had a lot of problems with being sleepy. A lot of people get moody (called KeppRAGE). I do admit I had some problems with that, but it has leveled out and is not an issue.
One other item, Keppra has a generic now and a lot of people (including me) have problems with it and insurance company will try and force it on you.
I hope your daughter experience is good. I do recommend it, but not sure if it would be different for a child.
jenn
 
My 20mth old son is on Keppra as well as tegretol. He does get sleepy from the tegretol but I haven't noticed any different side effects after the keppra was introduced. He has been on these meds since he was 9 months old so I can sympathise with how hard it is to tell if they are being affected by the meds. I worried about dizziness too but I think it was just him getting his balance and finding his feet.
 
crawling and walking in normal time?

Hi Kelly,

I hope you dont mind me asking but did your son walk at the normal age? and have you noticed any delays in anything?

Our daughter has been on high doses of meds since 5 weeks old. She is almost sitting up but not quite unaided, she is ten mths old so slightly deleyed there. She tries to crawl but hasnt managed to move yet. It is so difficult to know how the meds have affected them.

Look forward to hearing your response.
 
That's ok. We have been pretty lucky in that so far Aiden seems to be developing on time or a bit earlier. He walked at 11 1/2 mths and his speech is really good, the dr is most pleased with his speech, he says this is the best indicator of intelligence. He also said most kids won't start crawling until 9 months so I think the fact she is trying and she is close to that is good. All kids develop at different rates so I wouldn't worry too much about it, just keep an eye on it and discuss any concerns with your dr. We haven't actually found a cause for Aiden's seizures other than genetics, I have epilepsy too and like him they can't find a cause for mine either. If your daughter is delayed perhaps it is something that is normal for her type of seizures rather than the medication? I hope this helps, feel free to ask as many questions as you like, I know how difficult it is to watch your little one go through this and I know I would have loved to have someone understand exactly what you are going through. Take care.
 
types of seizures..

Hi Kelly,

Thanks for the response. Beth, our daughter has had many eeg's and the recent one revealed that she was having generalised seizures, and the Drs have re read it and now say that she is having focal seizures, what type of seizures does Aiden have? and would you say that one type has less effects than another? I'm wondering whether children have the chance to grow out of one type of seizure? Theres just so much conflicting information on epilepsy on the internet. Thanks.

I noticed that you live in Aus, I backpacked around Aus when I was in early twenties and had a great time!
 
Aiden's eeg's didn't show any seizure activity but he was having generalised tonic seizures which changed to partial seizures after the medication started to work. He has now been seizure free for 7 1/2 wonderful months. Both types of seizures affected him the same, he would be very tired afterwards and would sleep anywhere from 30mins to 2 hours afterwards. I'm not sure what the chances are of growing out of them. Aiden's dr thinks he has a good chance of growing out of them because there is no known cause and he has responded to medication but there's no guarantees unfortunately.
What parts of Australia did you come to?
 
seizure free

Thats so great that Aiden has been seizure free for 7 and a half months! It must be so amazing after having seen him have seizures..

We are doing well, its 5 days since last seizure which is so much better than before.. it's early days so fingers crossed that Keppra is the drug for us.

Did it take you long to get Aiden seizure free?

We have been trying different drugs for 9 1/2 mths but hope finally we have got somewhere with this drug!

When I was backpacking I spent time in Perth, Sydney, Brisbane, Darwin and went into central and went to Ayers Rock. Where are you from?
 
It took us 4 months to get Aiden seizure free, at 1 point he was on 3 different medications at once but we are now down to just 2. It looked like we were never going to get there for awhile, the best we could get was 2 1/2 weeks and then he would have one, almost like it was on a timer or something. It's definitely much nicer this way. I will cross my fingers for you too that the keppra works, you will probably find that Beth just takes off once the seizures stop. Although we didn't think Aiden was behind he did seem to just pick things up so quickly once the seizures stopped.
I am in Townsville which is a couple of hours north of Brisbane by plane.
 
getting Beth seizure free..

You are so right in that when your child is having frequent seizures, you just cant imagine them reaching a seizure free period. Hopefully we are on our way with the Keppra. And I guess once you have got your child seizure free, you dont wonder as much what the cause is... I have read somewhere that 70 percent of epileptics never know what the cause is.

It has been so useful listening to your experiences, I just havent met anyone who has an epileptic child so is nice to speak to someone who knows what you are going through.
 
I'm so glad I can be of some help, I was diagnosed 3 months before Aiden and before me I didn't know anyone with epilepsy at all so I had nobody to talk to that understood except my husband and he knew as much as me. It must be harder for you with Beth having them pretty much from the start, this is all you know.
 
I just started taking keppra for one week so far. So far so good. I have been reading not so good things about it, I hope I do not get any.On
Saturday I will be increasing my dosage to 1000mg a day for another week so it will be interesting to see how I feel.
 
I have been on Keppra 3000mg for several years now and also use Tegretol XR with it. I did experience dizziness and poor coordination, sleepiness and sometimes get a druged-up feeling. But it lasted maybe a week in the begining as I started it up.
Now I get dizzy but not very often and usually if I miss a pill (I take 6 a day) I will notice A-tonic seizures happening which scare me.
I think the side-effects will go away, I know the longer you are on them the less you will have of them.

I hope she does well continuing her use of Keppra. Good luck with everything.

Crystal
 
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