I was hoping OHSU had a little better set up for the 24hr EEG than the last hospital. Unfortunately, this wasn't the case. At least we could actually watch the EEG here. At Emanuel, they don't let the patients see it. After going through the long process of getting the leads attached to his head again, we settled in to the process of trying to keep him in one spot so the camera could catch his seizures. He had a lot of seizures. In fact, he was having clusters of 10+ seizures again, which we hadn't seen for awhile. We figured it must be due to the stress of the hospital. We could see the EEG, and it was obvious that it was really messed up. And, it also didn't look to me like there was a focal point. The sole purpose of going through this was to hopefully find a focal point, which would mean surgery was an option. Of course, we also hoped that we would see an improved EEG, though we had no reason to believe that was the case.
The neurologist came in at some point and said her first impressions were that there was not a focal point. That was rather sad news for us, but not unexpected.
During this first day, we also met with the metabolic specialist. He asked us a million questions, and examined John pretty thoroughly. OHSU is a teaching hospital, so he had 4 or 5 students also in the room. After examining him, he told us that he didn't think John had a metabolic issue, as he was too healthy for that. However, we wouldn't know for sure until all the blood tests had been run, as well as the spinal tap.
They also put a high dose of B6 into the IV, just to positively rule out a B6 dependency issue. Unfortunately, this didn't seem to have any effect on John's seizures.
I went home at night, and Yoshie stayed with John. She said that John's EEG really stabilized when he was asleep. That is good news. At least his brain is getting some rest.
The next day, John had to go through the rather miserable process of removing the leads again. He was still having an awful lot of seizures.
Later in the day, he had his spinal tap. We had read up on this procedure, and everything I read said it was common practice to have the patient lay down for a few hours after the procedure in order to let the puncture sight heal. If you didn't do this, you could risk a "spinal tap headache", which is supposedly very brutal. I asked about this, and they said it simply wasn't necessary.
Yoshie and I were in the room when they gave him the anesthesia. We knew what to expect, but it hit us a little harder than we expected when John suddenly went lifeless right in front of us. The whole thing went quickly and he was brought back to the room to wake up. Soon after he woke up, he was full of energy. The nurse said it was OK for him to run around, so he did. Later we would learn what a big mistake that was.
He also had to give a bunch of blood for the metabolic testing. He's gotten used to this, so it isn't a big deal for him anymore. Yoshie tells the nurse exactly where to poke him, and all usually goes well.
After we got home, John seemed to have more and more seizures, and then he began to lose his strength. Turns out that he got the dreaded spinal-tap headache. At one point, he couldn't even sit up in the bed. And, it took a week before he could walk without losing his balance. In hindsight, I guess it was no big deal. At the time, I was angry at the docs for giving John the green light to run around after the tap. And, we were sort of worried that permanent damage had been done. Of course, that wasn't the case. But, when it's happening you aren't so sure.
He had so many seizures in the hospital that we decided we needed to give him back some of the Topamax that we had taken away. We increased his dose from 30mg/day to 37.5mg/day. He had one good day of 30 seizures, then he just got worse and worse.
We had an appointment with Dr. S and our nutritionist on the 21st. Dr. S had gotten the EEG results back from the hospital, and it was bad. There was definately no focal point, and his seizure activity was basically present all the time. We all still wanted to give the keto diet a fair chance, so he agreed that we should keep going with that, and leave the drugs right where they were. He gave us a video explaining the VNS, but we had already extensively studied this so there was no new information.
After talking with the dietician, we decided to go up on his ratio to 3.5:1, and we decreased his calories to 920.
John ended up having 100 seizures on Oct. 21. That was a milestone we hadn't imagined in our worst nightmares. He would out-do this on Oct. 23, with 108 seizures.
We became concerned at this point that he might be really constipated. He would only have a BM every few days, but when he did it was very watery. After talking to the nurse, we gave him a suppository if he went 3 days without a BM. On Oct. 25th, Yoshie took John to the pediatrician and she ordered an x-ray to see if he was constipated. He was. He got his first enema, and another suppository, but we still couldn't get him to have a BM. He started on an adult dose of Miralax. On the 29th, we got a 2nd x-ray, and they thought he was cleared out.
He continued to have 60+ seizures/day, but thankfully didn't have anymore days of 100+ seizures. Still, he was doing worse than ever. We were blaming the constipation, but now that didn't seem like an issue.
John got out to just a few houses for Halloween. He couldn't eat any candy, and he just wasn't doing very good anyway, so we didn't push it. I was able to take Maya over to Eric & Amy's neighborhood and she was able go to a lot of houses with Sam, so she was happy.
