Wednesday, June 15, 2005

Good news for a change

John did have another grand mal seizure early Friday morning. This one was only about 20 seconds. That's it for the bad news.

Since John had his VNS adjusted last Wednesday, the number of seizures decreased over 4 days all the way down to only 8 seizures in one day!! This was his best day since this whole thing started over a year ago. Since then, he has remained very good, having between 10 - 16 seizures per day. That is a huge improvement. So, I think the VNS is working.

We hate to make any big changes right now, but John was still having some strong seizures where he would have to catch his breath afterwards. My gut still tells me that this is the Lamictal causing this. So, we made another small decrease in his Lamictal on Monday. He is now on 87.5mg/day. We'll give this at least a week and watch his seizure count and intensity very closely. Hopefully, the count will stay the same and the intensity will get slightly better. There is always some increased seizure activity a few days after a med decrease, so it might get worse before it gets better so we'll have to endure that first.
We know that the grand mals can come at any point these days, and they can be terrifying, so Yoshie has had family and friends stay with her at all times lately.

The other good news is that we had our IEP meeting for John. This is the meeting where the specialists meet with us and test John to determine what sort of therapy he needs in the coming year. They agreed that he needs a 1 on 1 aide. He will start his preschool in July going 2 hours, twice a week. Yoshie will stay there throughout July, then hopefully we can leave John with just the aide at that point.

Also, John turned 3 years old on the 13th. He still doesn't understand birthdays or presents, but I think he liked having all the people around. He didn't seem too interested in his presents on his b-day, but he has begun to play with his new toys over the last couple of days.

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