Interictal abnormalities

[Phil]

OK, so my daughter just spent 4 days with a video EEG study in the hospital. She has absences and since June of 08 has had 3 tonic clonic seizures. She has been on Lamictal, has had 2 breakthroughs on that so in Feb they put her on Keppra too. In July she also had a video EEG and they said they saw siezures.

This time they said NO siezures (great) but said that she was having interictal abnormalities, a few per hour, mostly while sleepting and in a waking state. Does anyone know what this means?

Based on this, which seemed sort of good, they said they want to up her Keppra to 3-4 grams per day. They said that the expect she'll always have these abnormalities but want to surpress the absences and elminate the breakthrough big ones. Does is sound right to use that much Keppra to do this. My D has been on 2 grams of Keppra so far and hasn't had too many problems with that.

Many thanks in advance for any input.

Phil

[No Shame]

My EEG's have all been abnormal--and only my sleep deprived showed spikes characterisitic of EP. I still felt messed up from whatever they characterize as inter-ictal happenings. How does she feel? I guess that's what it boils down to. And question-did she experience tonic clonic's before beginning on meds or after? Or when adjusting the meds or going up--i think people here call it titrating.

[epileric]

no seizures, just interictal abnormalilties and having seizures when sleeping in a waking state. It sounds like your doctors really like oxymorons.

[No Shame]

Or they were just morons!

and sleeping in a waking state-i can relate...she has sleep waves while she's awake right? yep, i got those excessive theta and delta waves. plenty hard to deal with since stimulants are a big no no for triggers for many. i drink lots of coffee though and it doesnt even touch the sleepiness.

[epileric]

I think you should have the doctors clarify things & be careful to watch if they try to hide behind medical terminology.

[No Shame]

gotta be more assertive when talking to neuros/epileptologist's. learning that still! and the medical terminology is confusing when i am just deciphering it 6 months later! GOD

[Phil]

I agree completely with you both. These guys were going very fast. The other complication for me was that my daughter was in the room when this whole conversation was going on and I wasn't comfortable going into painful detail about all these questions in front of her. Still feeling out if that is good for her or not.

Anyway, they got all this past me and I am really trying to figure out what they were telling us.

I figured someone on this site would have been told this too and would know what it means. I think, I think, it means she is not clinically siezing which is good but I am not sure what these bursts are and what it means. The one thing I know is they didn't say leave it alone. Instead they are bumping up Leslie's meds.

This is really confusing.

Whatever you all think is helpful I'd love to know.

Kind regards,

Phil

[epileric]

It actually sounded like the doctors were trying not to upset you or your daughter. Maybe you should bring mom next time & have her take your daughter out afterwards so you can talk with the doc if you're really worried.

To speak honestly though I was born with epilepsy & my parents always kept me aware of them. Remember the more accepting you are of the seizures the more your daughter will think of them as normal. Of course they used to talk about it on a younger level. I used to laugh during my siezures so we just called them "laughing spells" but they were still discussed freely.

My recommendation would be to make a list of questions for the neurologist & try to be calm yourself, that always makes it easier to go slower & ask questions as they come up.

[Phil]

So, I've followed up again with docs on this. What they said is that the interictal abnormailities are not siezures but indicate that Leslie has a lowered siezure threshold. This is why they want to up the drugs, to raise her threshold. The idea is that if we can get the threshold up with meds, then she has a shot at being siezure free! Sounds wonderful. Any one heard of this approach? We are bringing Leslie up on her dose now. Will take about a month. Then we wait a few weeks and re-evalute. So, we're in the tunnel but with a plan that seems to have some hope. Oh please let it be!

Phil

[epileric]

they're saying she doesn't have seizures, just a lower threshold due to abnormalities, so they're giving her meds so that she doesn't have seizures?

I like the idea of preventative medicine but I question putting someone on anti-epileptic drugs if they don't have seizures. I cant remember who posted it but Im' sure I remember something about a study saying that giving people anti-epileptic drug's when they were uncalled for can decrease their seizure threshold when taken off of them hence creating a dependency.

It still sounds fishy to me.

[epileric]

You might find this thread re. a study on starting people on anti-epileptic drug's early interesting

AEDs not necessary in early stages of epilepy