EEG and VNS surgery

Everything went as planned. We are back home and John is doing fine.

We arrived at the hospital at 7:30 Monday morning. No mix-ups this time, so we got a room pretty quickly. The tech came in pretty early to glue the EEG leads on. As expected, this was the worst part of the whole day. It took several of us to hold him down and he was pretty unhappy for the 45 minutes or so that it took.










He started having seizures right when she was finished, so we had the tech start recording immediately. So, the first few seconds of the recording should have at least one seizure on it. Surprisingly, once the leads were all on and his head was wrapped up, he didn't seem to mind. He carried on as usual just watching videos and running around. He only tried to grab at his head a couple of times, and we were able to distract him pretty easily.







We didn't see any seizures for most of the day, and we were getting worried. But, he did finally have a small cluster of seizures in the evening. This was much smaller than we normally see, but we were hopeful that it would be enough to determine if there was a focal point or not.
John wouldn't allow anyone to take his vitals. He especially hated the blood pressure cuff. They finally had to give up and do it in the middle of the night while he was sleeping.
John had to give blood around 8:30, then I went home. He didn't sleep very well, and was awake for a couple of hours during the night, so John and Yoshie ended up very tired on Tuesday.
I arrived back at the hospital at 5:45am, just as the tech was coming in to remove the leads. Of course John didn't like this, but it went pretty quickly. He enjoyed his freedom after that and we spent some time walking around the hospital. As expected, he had a significant cluster of seizures during this time.
Just after 7:00am he was wheeled down for surgery. He took his calming medicine without problem this time. Whew! Last time they had to resort to forcing it up his nose. He got very drunk-like, and they took him away at 7:55. Yoshie and I went to wait in the surgery waiting area.
John's neurologist found us in the waiting area and gave us the results of the EEG. Apparently, his team had already studied them that morning. He said overall that John's EEG was dramatically better than it ever has been. He said that his brain wave rhythm had matured, and the background slowing had improved. He said there were times of some normal sleep rhythms - maybe for the first time ever. And, he said the the seizures themselves were far less severe. In fact, he said that if he were basing his findings on the EEG alone, he probably wouldn't classify these discharges as seizures at all. Since these discharges are associated with head drops, they are certainly still seizures, but are a big improvement over the seizures he's been having for the last 3 years. He said that he and his team believe that John's seizures originate in the thalamus area of the brain. This is an area deep in the brain that cannot be accessed. So, that obviously rules out any more testing for a surgery option. He said the best course of action for this type of seizure is VNS and drugs, which is exactly what we're already doing.
We don't know why John got better. It could be the Keppra, or it could be that he is just growing out of this. We also asked about John's lack of development, even with this improvement. He said that it could very well be the underlying issue that is causing all of this. Or, it could be the drugs that John is on. So, he said his goal is to get John on as little medication as we can, which was music to our ears. John really has seemed more alert since we lowered his Felbatol level, so we're really hopeful that further lowering this drug will help even more.
While we were talking to the neurologist, the neurosurgeon came in and told us that everything went fine. He said the leads were OK, so they only needed to do the generator replacement. He said that John was already starting to wake up so we'd be able to see him soon. That was 9:30.
At around 10am, a nurse came out and told us that John was just starting to wake up, and we'd be able to see him soon. She had us go down and get his new prescriptions (antibiotic and pain meds) while we were waiting. Around 10:30, the neurologist came back and said he had just turned on John's VNS. He set is really low compared to what it used to be. It is now set at 1mA, on for 30 seconds each 5 minutes. He said we'd increase it in a couple of weeks but he has no intention of going to the type of settings that John had previously. He also said that John was waking up and we'd be able to see him soon.
At 11:10, I finally asked reception for a status and they were able to take us back to see him immediately. Sure enough, he was half-awake. We tried to get him to drink some liquids so that his IV could be removed (it was driving him crazy). He watched a little TV, and fell back asleep.









At around 1pm, the nurse came and said we could wait for him to wake up, or we could take him home and let him sleep. We opted for the latter. I carried him down to the car and we went home. We were home by 2pm. Once we got home, John went back to his normal ways. I actually had to stop him from climbing his climbing wall and jumping off the couch. It was as if nothing had happened to him. We didn't even give him any pain medicine until bed time as he didn't seem to be in any pain.
Today (Wednesday) he seems completely fine. He doesn't know that he has a big cut in his chest, and we're hiding it from him. I think if he saw it, he would try to remove it. But, it doesn't seem to bother him at all so far. I gave him a dose of the pain med first thing in the morning, really just as a precaution. I'm guessing we won't have to give him any more at all. We even got out for a little hike today. He grabbed some stinging nettles, which is bothering him more than anything right now. So I think it is fair to say that it all went better than expected.
We'll go back in a couple of weeks to increase his VNS settings, and then we'll hopefully start decreasing the Felbatol shortly thereafter.
One really promising sign is that the VNS magnet has appeared to stop John's seizure clusters on two occasions today. I have a good feeling that we're going to be able to go to just the VNS and a low dose of Keppra for long term treatment.

EEG and VNS

We went in for John's EEG last week, but there was some mix-up and we were finally sent home and forced to reschedule. We got rescheduled for next Monday (Feb. 25) at 7:30am.
Today, we met with John's neurosurgeon to discuss replacing his VNS. We got some x-rays taken just to make sure the leads were still OK - they were. And, it turns out that they had a cancellation and were able to get John in next Tuesday for the surgery! So, his EEG will go from Monday morning to early Tuesday morning, at which point they'll remove the leads and take him right to surgery. It will be a rough couple of days, but nice to get it over with all at once. If all goes well, the surgery will take less than 30 minutes and we'll be home Tuesday evening.

In other news, John really seems to be doing better on the lower Felbatol dose. He just seems more "with it". Thankfully, we didn't see any increase in seizures at the lower dose either. So, we're hopeful that we can lower it even more after we get the VNS working again. John has continued to have daily clusters of small seizures, but I don't think they have gotten any worse since my last post.

John seemed to like school for months. But, for some reason he cries when you say the word "school" now. The teachers say he is fine after awhile, so I guess it's just separation anxiety. We're not sure why it suddenly came on, but it might also have something to do with his reduced Felbatol level. John knows the route to his school, and he'll cry as long as you stay on the same route. If you turn off course at any point, he quits crying. So, some parts of his brain seem to work quite well. Sure hope the language part starts working one of these days.

Not a lot has changed seizure-wise since my last post. John continues to have at least 1 cluster of seizures every day. Each cluster has between 5-12 seizures. The cluster lasts a couple of minutes, and the seizures themselves are just head drops. We have lowered his Felbatol from from a high of 12ml/day down to 9ml/day. We didn't see any change in his seizures, so that is good news. I feel more comfortable with this lower dose.
Since we lowered the Felbatol, we think John has gotten more talkative. He babbles a lot now, and sometimes seems to say words that make sense, though its never clear so we can't be sure. He has also started to cry non-stop at school lately. Yoshie had to pick him up twice this week. He's always seemed to like school, so we're not sure what changed. Yoshie suggested that maybe he is just a little clearer after the Felbatol reduction, so he has a some separation anxiety again.
John has also been going to speech therapy twice a week at our local university. I had a chance to observe him the other day. It's really more like play time than therapy, but at least he likes it. So far Yoshie has had to remain in the room most of the time. Hopefully that will change soon.

We had an appt. with the neurologist on Monday. As expected, we got an appt. for another "24 hour" EEG. We'll be doing that next week. He told us that he still believes John's seizures are generalized, but there is a 25% chance that they could be focal. It was enough of a chance that we decided to pursue it. If the EEG shows a focal point, then we'll have another MRI. If the MRI shows something in that area, then we'll continue with further testing. The end result would be a surgery to remove that section of the brain. But, there are many, many steps before we get to there and if any step along the way doesn't show a clear focal point, then we'll stop. The chance of actually getting to the point of a surgery is very small.
After the EEG, we are also going to increase his Keppra slightly. Since it has worked so well, I think there is a decent chance that an increase will help him.
Finally, the VNS is completely dead, so we'll be getting that replaced shortly. As always, we only want to do one thing at a time, so it might be another month or two before that gets done. We got to see the new VNS, and it is remarkably smaller than his current one. It also has more functionality. We're not looking forward to putting John through another surgery, but this one is low risk. I doubt we'd even have to stay overnight. The hardest part will be keeping John from poking at the incision.