New here with some questions

[Staceypt]

Hi! My son Jason has a diagnosis of PDD-NOS (on the autism spectrum) and has recently been diagnosed with absence seizures. He had an EEG about 3 weeks ago that showed 4 absence seizures in 45 minutes and also showed some activity in the frontal lobe, so they are questioning if he is having partial seizures as well. We go for an MRI in two weeks, and a follow up EEG next week.

He was started on Keppra, we just started our 4th week on it - this is the beginning of our second week on the "full" dose that she wants us to try. I am still noticing seizures.

I have a few questions. First - how exact do we need to be in our 12 hour doses of the Keppra? We are usually within 15-20 minutes of 12 hours. Is that close enough or do we need to be exact? Second - how long does it usually take for the medicine to "work"... if he is on the right dosage how long will it take for the seizures to stop? I understand that we may need to up his dosage, but wondering in general how long before you know if you are on the right dosage or not. We have seen some aggression and out of sorts behavior each time we up his dosage, but for the most part he is doing really well with it.

Thanks so much for all your help! I'm so glad that I have found this forum!

Stacey

 

[Nakamova]

Hi Staceypt, welcome to CWE!

When it comes to medication, everyone is different in their reactions and sensitivities, so there are no "one-size-fits-all" operating instructions. In answer to your first question -- some people need to be very exact with their dosing, for others there can be quite a bit of variance. I take my doses (of Lamictal) at 7:30 in the morning and 6 at night, but if I sleep in and take my dose at 8:30 or 9:00am it's not a problem, and I have the same flexibility with the evening dose. In general, it may depend a bit on how much of a "safety" margin the dose provides, as well as the half-life of the particular medicine.

Keppra gets up to a therapeutic dose fairly quickly, so you should be seeing some results by now. If you're not it could be because the dose is too low, or because Keppra just isn't the right med for your son. Unfortunately, there can be a lot of trial and error with anti-seizure meds.

You might ask your son's doctor about adding a vitamin B6 supplement -- it has helped some folks with the aggressions and moodiness the keppra can cause. Another thing to consider is a dietary approach; the Modified Atkins Diet has shown a lot of success in reducing absence seizures. More info here: http://epilepsymoms.com/blog/special-diets-nutrition/atkins-seizures-guide-parents-parents.html and here: http://www.hopkinschildrens.org/Modified-Atkins-Diet-Treats-Childhood-Seizures.aspx

Best,
Nakamova

 

[momofthree]

Hi Stacey, I hope things are improving with your son and you are noticing less seizures by now. My son was put on Keppra after having 3 seizures in a row, he did not have another generalized seizure for about 6 months, so the medicine works very quickly and if your boy is still having seizures my guess is it is the wrong med or not enough of it. We have had to increase his dose substantially from when we started, he gets "tremors", not full blown seizures, when the tremors start we get a Keppra level and then increase the dose. I am sure your doctor will discuss keppra levels with you if he hasn't already. It has a very quick half life and if your son has a fast metabolism you will need more medication. We are not always exact either with timing, life can get in the way of that, but we try to do 7AM and 7PM and we usually stay with in 30 minutes of that on either end. We have never noticed a difference because we were off by 30 min and sometimes, not often, but sometimes we are more off then that too.

 

[Staceypt]

Thanks so much~

Nakamova - I have been reading about B6 and I plan on asking his neuro about it at our next visit. He take a multivitamin that has B6 in it and I've been trying to up his foods that have B6 in it until I talk to her.

Momof3 -- I am noticing less seizures (I think) but he is still having them. It's hard to say if they are less or not b/c I wasn't seeing a whole lot of them, but then he had 4 in 40 minutes on the EEG, so who knows how many I was missing. They are so short and quick they are hard to miss. We have an EEG on Monday and I'm guessing we'll increase his dose. He's still on a low dose -- 500/day (250am/250pm) and that is just a little over what he should be on based on his weight. So we'll see.

Thanks for all the help!

 

[JMusy]

My son is six and has taken keppra from one year of age. Keppra can be used IV in an emergency room situation to control seizures, so efficacy is probably quick. My son has had some breakthrough absence and tonic clonic seizures on it and each time his dose was increased. Sorry that your child is having seizures. -Jo