Seizing Less

Something strange is going on with Ashley’s seizures – I’m seeing fewer of them. And to make it even stranger, I have stopped one of her seizure medications.

Ashley currently takes 3 seizure medications – Depakene, Keppra and Trileptal. A couple of months ago, I weaned her off Topamax at the direction of her neurologist. He wanted to replace the Topamax with a new seizure medication named Vimpat. Ashley tried the Vimpat, but the side effects were horrible, and I stopped giving it to her. I haven’t told the neurologist about that yet.

But just in the last couple of weeks, she is down from 6-8 seizures a day to 1, maybe 2, and they are of shorter duration and less intensity. The only difference in her meds besides stopping the Vimpat is that she has also been on Augmentin for an ear infection. Augmentin is a common addition to her medicine regime, so I can’t attribute the fewer seizures to that.

I just don’t understand it – but I am thrilled! Ashley seems happier, more carefree, and definitely less groggy from medication.

Has anyone else experienced this? Has stopping a medication or taking fewer medications actually brought a reduction in seizures? Might it just be a change in her body chemisty/hormones as she matures?

Seizures - 1 Medication - 0

In the last 10 days, Ashley has had an MRI under anesthesia to check for tumors on her brain stem and spine, and she had her 6 month checkup with the neurologist. She and I have both been very busy trying to figure out why we are seeing an increase in the number of seizures she has each day.

Ashley is on four different seizure meds - Depakene, Trileptal, Keppra and Topamax. Yet she was still having 3-4 seizures a day. About a month ago those numbers went up to 6-8.

Her seizures are not usually bad - just lasting 45-60 seconds each. She seems to be able to tell when one is starting, and she will get herself to a safe position, not allowing herself to fall once the seizure gets underway. Afterwards, rarely is she sleepy. In fact, she is often in a much better mood - almost like the seizure cleared some of the fogginess from her brain.

But, she has had life=threatening seizures in the past, and with each of the not-too-severe ones she has, I think back to the times when things were really bad. So, I keep a close eye on her seizures, a close check on her meds, and schedule frequent MRIs.

The good news today is that the most recent MRI did not reveal any tumors on her spine or brain stem. She still has three on her brain, but they are not growing and don't need to be removed at present.

The news from the neurologist wasn't quite as good. Since the four current medications are allowing the seizures to become more frequent, he is adding a fifth one. It is a new medication called Vimpat. I need to do some research on it, but he listed one of the side effects as sleepiness. I'm not wild about that. I'm also not wild about her being on 5 medications...

So that's the Ashley update for now. If anyone has any experience with Vimpat, I would love to hear it.

Dr. McYummy Day!

Today is Dr. McYummy day! Ashley and Ronnie will be visiting their neurosurgeon. I'm anxious to get the results of Ashley's MRI, and the handsome doctor will also be checking out Ronnie's shunt.

I'm very nervous about the MRI results, but figure if there was anything major, the film reader would have contacted the doctor and he would have contacted me. But still, I'm worried.

And Ronnie is worried also. The last thing he needs right now is problems with his shunt. He isn't exhibiting any symptoms that make me think there is something wrong. This appointment is just to establish a relationship with the doctor and Ronnie.

Hopefully tomorrow I will have good news to share with everyone. But until then, here's a little bit of good news. During a trip to the pharmacy this past weekend, I needed BandAids. Imagine my surprise when I found that the BandAid box had Braille on it!!! I'm very impressed....