Going Home and the Removal of Lyrica

I spoke with Dr. Dean a little while ago. I explained that the nurses here are terrified when Scott has a seizure and that they really aren't helpful to me or Scott. I told Dr. Dean that I thought it would be best to let Scott go home. I even explained that we would bring Scott in each day for blood work if she wanted.

I also told Dr. Dean that as soon as Scott received his Keppra and Lyrica this morning he again got very tired and started having some small seizures right after he laid down to rest. I told Dr. Dean that based on my observations I believe that Scott should be removed from Lyrica.

Dr. Dean agreed on both counts. So we're waiting on her to come up here so Scott can go home. Before releasing him, she wants to work with us to develop a plan. We are both of the opinion that the Depacon is working. At least he seems to be calm and able to rest once he's had it. Of course, it's through an IV so we need to figure out the correct equivalent of Depakote - the oral version.

Hopefully if we remove the Lyrica and get the correct amount of Depakote Scott won't suffer any more seizures.

We are going to re-schedule the brain mapping session for Scott. He's reacted oddly to some situations and we need to figure out if it's due to the frontal area of his brain where he had the growth removed. That will better help us develop a plan for dealing with Scott's epilepsy and the treatment of it. We also want to discuss our options with the nerosurgeon after the mapping session. He previously stated that scar tissue is "very tricky". Maybe we'll have some options once we better understand how it's affecting Scott. I'll continue to post here as I learn more.

Thanks again for your love, encouragement and support!
Christa

And Another Gran Mal Seizure Just Before Lunch

Scott had a gran mal seizure at 11:55 am this morning. He had been trying to rest ever since breakfast this morning. But it was obvious from watching him that he was not resting well. His eyes, while closed, continuously roamed as though he were watching someone walk back and forth across the room - even though the only person in the room (besides Scott of course!) was me and I was sitting right beside of his bed. Right before the seizure Scott looked at me and told me that he was having very strange dreams about the end of the world. I teasingly asked if he was dreaming about Stars Wars again... at first he said no but then he stated that there was a bit of Star Wars in his dreams.

After the seizure, Hope, Scott's nurse today, gave him a shot of Ativan. Scott is resting at the moment and his eyes are no longer roaming. While Scott did not injure himself during the seizure, I sincerely hope that he did not injure his remaining IV site. After his first seizure yesterday, one of his IVs had to be removed because his arm had begun to swell and was very red. I know hoe much Scott hates being stuck with a needle and sincerely pray that this remianing IV will not need to be replaced.

I'm anxiously awaiting Dr. Dean's visit today. I want to speak to her about Scott's meds and get her thoughts on this recent flurry of seizure activity. Perhaps we made a mistake taking him off the Depakote. Or perhaps it's the Lyrica causing the seizures. I'm not sure how to tell but know that we must do something to help Scott. I'll continue to keep you updated. As always, thank you for your continue support and prayers.

Christa

Another Day... Another Seizure

Scott had another gran mal (or tonic-clonic) seizure today just before 12:00 pm. Fortunately, he was resting in bed at the time of the seizure and did not get hurt. Perhaps the increase in Depakote ER or the new medication, Lyrica, is the cause of this seizure. Hopefully, we will know something more certain when we meet with Dr. Dean on Monday to discuss Scott's drug regimine. No one, including Dr. Dean, wants Scott to take 3 AEDs so the meeting on Monday will provide Scott and Dr. Dean with an opportunity to discuss and determine which medications Scott will continue to take and which one he will stop taking. Please say a prayer that Scott and Dr. Dean make the right decision for his care.

Update!

Still here in the hospital. Dr. Dean is going to start me on a new drug, Lyrica, tonight. Hopefully that works and they will let me out tommorow. :)

As for the PET scan, Dr. Dean reveiewed it and believes that the seizure activitiy is still eminating from the scar tissue left over from my brain surgery 15 years ago. She is going to review these results with the neurosurgeon that implanted my VNS to see what, if anything, can be done.

Dr. Dean is also performing a sleep study on me tonight to see how well I am sleeping. Hopefully I will know more tomorrow.