New neurologist

We finally got in to see John's new neurologist. This was at a OHSU, so we first were seen by a couple of the residents. Since this was the first time for John to be seen here, we had to give the whole history again. Once the actual neurologist came in, it was obvious that he was very busy. I think they are way overbooked and trying to fit in too many patients. We had lots of questions, and wanted the VNS checked, etc. so we probably took more than our alotted time. He seemed like a good doctor, and was open to everything we talked about. His main point after looking over all of our records was that John has had excellent care and he had agreed with everything that we had tried.
We asked how he would classify John's condition and he said probably Lennox-Gastaut or maybe MAE, but that there was so much variance in those syndromes that classifying wasn't important. I told him it was sort of important for us since MAE kids usually grow out of the condition and LGS kids generally deteriorate. But, his point was that John didn't fit nicely into any syndrome and it wouldn't change his treatment so we really shouldn't worry about it. I will pursue this further, as I think there ARE differences in the way those syndromes are treated.
His recommendation was to try felbatol again, but in liquid form this time. John tried it for a few weeks last year and vomited after most doses and it never seemed to do anything for the seizures. He also suggested another benzo, which we are not interested in. So, we agreed to the felbatol. We got the dosing schedule which is starting him on a very small dose and increasing very gradually. John will also remain on his 100mg/day of Lamictal.
We also had the VNS interrogated and it checked out fine. We're all a little surprised that it is still going strong, but definately not complaining. We were expecting to have to have the generator replaced this year because the battery should be wearing out.
We also scheduled an EEG for July 13, and will schedule another MRI soon after that.
Yoshie asked if it was OK for John to fly on an airplane and he said it was. I'm not sure the other passengers would like that answer, as I think John would cause quite a commotion on an airplane. :)
We also mentioned the high aluminum that had been found with a hair analysis. He said he had never heard of high aluminum causing seizures so that was basically brushed off.
Finally, we asked about John's absence of IgA when he was tested for celiac last year during his terrible constipation issues. He suggested that we follow up on that and have John re-tested now that he isn't on keto anymore. He was going to give us some references for GI doctors but failed to do so.

Happy 4th birthday!

John turned 4 years old on June 13th. We celebrated with a family party. Yoshie made him sushi, which is one of his favorite foods. And, he had more than his share of cake. He still doesn't understand the idea of presents, so Maya and his cousin Sam helped him to open them. As we've seen with every holiday, he doesn't seem to care too much about the presents until after everyone has gone home. He got lots of hands-on toys, which he has been playing with all week. And, he got a toy that you hook up to a garden hose and it explodes like a volcano every few seconds. The kids had a great time getting soaked.
As I'm sure all parents of special needs kids can relate, birthdays are sort of depressing in some ways, as it's just another year that your kid is delayed. John didn't meet any of the development goals that we had for him this year. But, he is as happy as can be and is making progress these days so we must celebrate what he has achieved. We must not forget how bad things used to be and how far he has come.
As we've come to expect, the fallout from all the cake hit him over the next day or two with a noticeable increase in seizures. There is a fine line between letting him enjoy just being a kid, and keeping the seizures under control. 

Therapy

We had our yearly meeting with the county to formulate a plan for John's schooling. This time we brought our case worker just in case she could offer any advice. John was in a horrible mood so Yoshie and I had to take turns listening to the meeting and entertaining John.
Everyone is very nice, but they only have so much money to work with so it's a bit of a struggle to get all of the services that you think your child deserves. This time, we had learned that kids with autism were receiving far more aid than John had been getting. So, we were hoping to fight for equal services as the autistic kids. Turns out that it really isn't an option.
We had to go through all of John's goals for the previous year. He hadn't met many of his goals at all, so a lot of them just got carried over to this year. We did get rid of the 1 on 1 nurse, as that was simply overkill and unneeded at this point. In a perfect world, we would trade the nurse for a 1 on 1 aide or speech therapist. Of course, it doesn't work that way. When Yoshie told them 15 minutes a week of speech was highly inadequate, we were informed that this is actually a LOT. When we pressed them on why the autistic kids got more than this, they admitted it all had to do with funding. I said that we could get John an autistic label if it would help, but they convinced me that this probably wouldn't be a good class for John. A lot of their curriculum wouldn't apply to him, and I doubt he'd be able to thrive in a structured atmosphere like that anyway. In any case, an autism label from a doctor wouldn't make any difference, as the county does their own analysis and they've already said John wouldn't qualify. Our case worker told us later that we should avoid an autism label anyway if at all possible for insurance reasons.
In the end, I think everyone agreed that we should pursue more private speech therapy, especially since my insurance will cover a lot of it. Some didn't think John could handle it, but we know better. They still haven't seen John's potential because he isn't on his best behaviour at school. Their point was that we need to keep bringing John to the school so that he becomes comfortable there. I think it is a valid argument.
So, we ended up keeping John in the same class which he will attend twice a week for 2 hours.
Yoshie asked them to videotape the class and give us copies of the work that they do so that we can extend their teachings at home.
We made sure that they knew what to do in case of a big seizure. They did. And, we made sure that we could re-visit his therapy options if his conditions change at all. Legally, we have the right to request a meeting at any time.

2 year anniversary

It's now been over two years since John's seizures started. It's been a long two years for sure. It's very frustrating that he continues to have many daily seizures after this long. And, he hasn't progressed much cognitively over that time either, though some progress has been made. But, all you have to do is take a look at his 1 year anniversary posting to see that he is doing much, much better now than he was 1 year ago. We are very thankful for that.

While technically John did have a couple of Grand Mal seizures in the last year, they were last June. So John hasn't had a major seizure in almost a year now. No Grand Mals, and no drop seizures. He hasn't had to wear his helmet since last June, either. The therapists agree that he doesn't need any therapy on the physical side. So, for the most part we are very happy with how this year has gone. On the other hand, John did go seizure free for two months last year. We know it's possible to get there again, and it's been very frustrating not being able to achieve that again. It's also been a tough year trying to get him the help he needs with his delays.

We haven't kept a detailed seizure count for quite some time now, but Yoshie does record the general number of seizures every day. So, if I had to guess, I'd say John had about 5000-6000 seizures that we saw in the last year. That is obviously a huge improvement over the previous year.

After going through 6 drugs last year, this year he has remained only on Lamictal (and the VNS). This despite our doubts that the Lamictal is doing anything.

As far as tests, he only had 1 short EEG this entire year.

The next year will bring a new neurologist, almost certainly the whole gamut of tests again, and likely another drug trial or two. While this is hard on John, and hard on the family, we welcome the tests and trials in the hope that we can find something that will really work for him.

100mg Lamictal

We lowered John's Lamictal doseage again just over 2 weeks ago. He's now at 100mg/day. We never saw any increase in seizures from the decrease. If anything, he is again slightly better. He continues to do quite well, and I think his average daily seizure count is now down around 10, which is a significant improvement. He is still learning new things at his own sweet pace. And, he's taken a real interest in books lately.
Yoshie has gotten his therapy sessions up to 32 minutes. I never thought John would be able to sit still that long.
John's big issue now is his extreme hyperactivity. We're not too worried about it yet, as I believe it is a consequence of the drug wean and will probably diminish with time. Right now, it is truly unbelievable just how much energy he has. He is wearing his parents out!
We'll leave the drug level as is at least until his next appt. on June 15. He's been on this drug for a long time now, and we still have no idea if it's doing anything for him.