Increase in Lamictal

We finally got the results of John's blood test last week. His Lamictal level was 6.6. This is definately in the therapeutic range, but still well under the theoretical max level of 10 or 11. John was a little sick for a few days so we postponed doing anything. On Sunday night we increased his dose to 175mg daily. Hopefully, we'll see some improvement over the next week or two. Actually, we've already seen some changes. He has been incredibly hyper the last couple of days. He's totally happy, just absolutely full of energy. He runs around and jumps all day. It's wearing us out, but it's nice to see him so happy. I think this will calm down as his body adjusts. Also, he only had 3 seizures today! Could be coincidence, or a honeymoon. But, at least it is a step in the right direction.
His seizures now still last a few seconds and sometimes include some shaking. We can absolutely bring him out of a seizure by yelling at him or picking him up. If you ignore it, they sometimes continue on. What kind of a wierd seizure is that? He isn't falling or even losing consciousness. These are myoclonic seizures where his head gets forced down and his arms come out. It's sort of funny in that it puts him in to a stance where he looks like he is going to jump. So, often when he comes out of the seizure he immediately starts jumping.
Speech therapy is very tough, especially when he is so hyper. Yoshie is doing a good job of getting him to focus a little more. It's definately not easy for him, though. Yoshie attended another class where they taught her some new techniques for training him. She has been trying out some of those techniques this week. It's hard to say if anything is really working. Progress is definately slow, but he sometimes seems to be picking some things up so it is worthwhile to continue.
The other good news is that it looks like my insurance may have recently added OHSU to the "in-plan" hospital list, which means our new neurologist would require a lot less out of pocket expense for us. It's not a sure thing yet, but the lady I talked to at my insurance company made it sound like it was definately going to happen.

Last visit with neurologist

We had our last visit with the neurologist on Tuesday. All went well.

• John's lamictal level hasn't made it to their office yet, so we are leaving the dose as-is for the time being. He'd like to see the lamictal level in the 7-10 mcg/ml range, and possibly as high as 12 mcg/ml if he can tolerate it. The therapeutic range is 5-13 mcg/ml, but really it is just a matter of pushing it up until he can't tolerate it. We've never had his level checked, so we really have no idea what it is at. We'll re-evaluate as soon as we get the level.
  
• We didn't make any changes to the VNS settings either. He did get it interrogated (see the picture) to make sure the settings were what we wanted and to verify that it was still going strong. He estimated that the VNS still has 2 years of life left which would be amazing as we originally were expecting only about 12-18 months due to his settings. Even though there is no pain involved, John hates having to stay still that long and eventually we had to hold him down on the table (while he screamed) just to keep him still.

• We're holding off on the referral to go to UCLA. I told him that our fear is that our new neurologist will not be so willing to make a referral, and he said that our fears were unfounded and it shouldn't be a problem if we want to pursue this later.
• He gave us a referral to the OHSU ped neurology team, with strong wording so it wouldn't be a problem for us to actually get in. He recommended that John be evaluated by the OHSU Epilepsy Surgery Program.
• He admitted to us that he has suspected that John may indeed have a focal point to these seizures. This came as a big surprise to us, as we've been told all along (by 3 neurologists) that John did not have a focal point, except the one time when he was having those wierd "mouth-opening" seizures. Of course this is huge news, and keeps our hopes alive that we still may be able to beat this thing. He said that John's seizures appear to him to come from the left hemisphere, and his latest EEG in January confirmed this. I'm not sure why he decided not to mention this to us before. He said that OHSU will likely jump on John's case.
• I was able to call and get an appt. with OHSU for June. That wasn't nearly as bad as I had thought. I guess return appointments can take many months, but I suspect we'll get scheduled for another round of tests after our first visit. We'll welcome that, of course.

Jumpy

While John is at the level of an 18month old when it comes to speech and understanding, his motor skills are much further along. I found him stacking blocks at least 7 high today. And, he can run and jump with the best of them. I thought I'd post this picture of him jumping off of our dining room table.

When we let him, he does a little circuit where he climbs onto the table, jumps off, and climbs right back up again. Yoshie said he was trying to swing from the light fixture the other day.
He also likes to climb up on the island in our kitchen. We have been able to stop him so far, but he really wants to jump down to the tile floor.
Another favorite activity is climbing to the very top step of the ladder and just falling backwards trusting that I'll catch him.
It's kind of ironic that he doesn't like our big inflatable "jumper". I guess it's the risk he likes.

His seizures are about the same this week, but we think he is beginning to understand a little more. We make him do some command before we give him almost anything. These commands consist of things like "touch your nose" or "wave". He used to just go through everything he knew until he got to the right action. Within the last couple of days, he's actually been listening to what we were asking and can get it right if he's in the right mood.

Rash, oh no!

John has been sick off and on for a couple of weeks now. Recently he has started running a slight fever. Friday he developed a rash over his whole body. Since a deadly rash is one side effect of the Lamictal, I called the neurologist, who said I should make an appointment with his pediatrician ASAP just to make sure it isn't the dreaded Stevens-Johnson rash. Well, it wasn't. It turned out to just be a normal childhood rash. And, it cleared up by Saturday evening.
With the fever, etc. Johns seizures became worse. One day he had over 30 seizures. His seizures are different again. They last a few seconds now and sometimes include shaking. It feels like he is going in to a grand-mal every time, and we keep the VNS magnets close-by at all times now. However, these seizures are different in that he doesn't seem to lose consciousness. In fact, he has fallen a couple of times from the seizures, but he is able to break the fall with his arms. That is a huge improvement over the drop seizures that he endured for so long. So, maybe this seizure type, while appearing more frightening, is actually an improvement?
In any case, the number of daily seizures has returned to a more normal 10-15/day as his health has returned. He's had a few days where we didn't see any seizures after about 5pm.
We're getting more relaxed about what he eats, and it hasn't seemed to make any difference. We went to the zoo the other day and he actually got to eat an ice cream cone - maybe his first ever?