Sorry for the long delay in updating this site. We have tried a lot of things in the last month, with some things looking promising. So far no improvement in his seizure count, though.
First of all, his blood results came back fine. His Lamictal level was low. We of course already knew this because we have been lowering his dose for some time. It hasn't been at a therapeutic level in months. The Felbatol level was definately therapeutic, but there is a chance we can go a little higher.
We lowered his Lamictal another half pill during a week nothing else was going on. He is now on 75mg/day. Again, nothing seemed to change with this reduction, aside from a couple of days of him just not feeling quite right.
We've now been to the Chinese herbalist 4 times. She has given him a concoction each week, trying to address his sleeping issues, constipation, and the healing of his brain. The constipation thing worked at first, but did not work the next time we tried it. John is also sleeping OK now. I don't "think" that is related to the herbs, since he is no longer getting that combo of herbs and his sleep remains fine. The big problem is that the stuff tastes disgusting, and it is getting harder and harder to get it into him. We're going to continue for awhile longer, but not indefinately unless we see some improvement.
We also went to see our old Naturopath earlier this week. He is a good guy, and has a very sensical approach. He told us to simply give John 2000mg of vitamin C a day to take care of his constipation. It worked after 1 day. That sure is easier and cheaper than the $70/week for herbs! John got an allergy test and will be getting an organic acids test through him pretty soon. We are waiting to get the results from these tests before continuing with any treatments.
We are going to see John's neurologist again next week. He said he wanted time to look over all of John's records and he set up a 1 hour appointment. Hopefully something good will come from that.
Yoshie has been continuing with John's daily speech therapy. He sits for 45 minutes at a time now, and seems to really enjoy it. If you say, "What is your name?", he now answers with a quiet "juh". It's a start!!
John started his preschool last week. This is a normal preschool, and John is in the 3 year old class (he is 4). He's still by far the slowest in the class, of course. Yoshie stays with him. He's been to 2 classes so far, and so far so good. I think he can really benefit from this environment if we do it just right.
His preschool is in the afternoon, so we had to switch his early intervention services to a morning class. That has just been terrible. He hates it there, and lets them know it by crying non-stop the entire time he is there. It's a no-win situation for everyone. They called us and want to set up a meeting because they are "very concerned" with John. I don't think they believe us when we tell them that John is a very happy guy who almost never cries. The fact is that he hates the school. That meeting is next week. Hopefully they will suggest sending someone to our house for therapy. If not, we may be forced to give up on that program completely. So much for "no child left behind".
The other big news around here is that I think it's safe to finally declare that John is potty-trained! Even at night! He still makes the occasional mistake, but it's getting more and more rare. He hasn't had to wear a diaper for a couple of weeks now.
I guess that's it for now. I will try to post some new pictures soon.
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