IEP

Since John turns 5 next month, he is eligible for kindergarten starting this September. So, we had his IEP meeting last week. The purpose of this meeting is to determine eligibility, document goals for the coming year, and determine his placement.
You hear a lot of bad stories about IEP meetings, and parents having to really fight for services for their kids, so Yoshie and I prepared pretty well for this meeting. We had all of our questions printed out. And, we had our goals written down for each area.
Eligibility is a non-issue for John. He's had so many evaluations, and he is currently in the ECSE program, so there was no question that he needed special services. His main diagnosis is still "Other health impairment" or something like that. However, we went through the autism evaluation during this meeting and it was unanimous that he also qualified as autistic. That label opened up a lot more possibilities as far as placement.
Thankfully, the goals that Yoshie and I had come up with very closely matched the goals that they had come up with. There were a few goals that weren't specific enough or weren't measureable, so we had them re-word those. Once it became very apparent that we weren't going to sign off on their goals without some challenge, I thought it went very smoothly. Actually, some of their goals seemed a little too optimistic. I'm all for striving for high goals so I was happy to see that.
As for placement, they actually said one of our options was to be included in the normal kindergarten class right next to our house, and to be pulled out 20-60% of the time for special instruction. I never, ever thought they would offer that. But, Yoshie and I both felt that John would benefit from a more structured, intensive type program. They agreed and we ended up tentatively agreeing to an autism program at a school that is pretty far from our house. I don't like the distance thing, but the school sounds good. We are going to go check it out next week.

We also asked about holding John back a year, and they said we could do that if we wanted, but since they were providing a "free and appropriate" option, that we would not be eligible for any funding. I asked about repeating kindergarten next year if that turned out to be a good option, and they said that we COULD do that, though I got the feeling they would frown on it. The truth is that we can also drop out at any time, and re-enroll next year. So, we decided to give it a try (though we haven't signed anything yet and could change our mind after seeing the school).

Since we got the educational autism label, we decided that we did not need or want the medical autism label. So, we were able to cancel his all day autism evaluation that was scheduled for this week.

John has taken a turn for the worse this week, at least as far as seizures are concerned. He had a 60 second seizure 3 days in a row this week, which we haven't seen for a long time. These are the typical tonic/clonic seizures. One of these seizures was at preschool again. This is the first real seizure that they have seen at preschool and it scared them. I don't think they were prepared. You can describe a seizure all you want, but you can't really understand until you see one. After his seizure, they mistakenly tried to keep him awake. Poor guy was totally exhausted when we got there. We're glad they got to see one. We have revisited what his triggers are, and we even changed his class time to the afternoon since most of his seizures are in the morning.

John got his stitches taken out a couple of days ago. Unfortunately the wound didn't close up very well, so he's going to end up with a permanent scar on his forehead. Oh well.

We also started to see a behavior psychologist last week. This appt. was scheduled for us, and we were told that his job was to coordinate John's services. But, he seems like he is more valuable as a resource to help us with John's behaviors, so I think that is how we'll try to steer the sessions.

Last week, we noticed on several occasions that John had blood in his stool. He had not been constipated or anything, so it seemed odd to us. Because of John's medicine, we take these things a little more seriously then normal.
So, we had to bring a sample to the doctor, and John had to do the routine blood work again. Since he was already getting poked, we had them also do a Felbatol level at the same time.
This place, despite being a pediatric clinic, didn't have much experience with kids like John, so they messed up the first arm and had to re-do. Now I remember why we usually drive 30 minutes for his blood draws.
Anyway, the tests came back normal and we haven't seen any more blood, so that is a relief.

And, his Felbatol level came back at 55. They claimed the "normal" level was 40-100. That's crazy. The neurologist says the normal level is 30-60, and I think that is actually way higher than most doctors would say. So, John's pretty close to his limit.

Felbatol, herbs

Even though we know we are still destined to try Keppra, we are making sure that we given mono therapy every possible chance first. So, we increased his Felbatol dose to 12mg on April 21. I know I've said it before, but I do believe this is the highest he can go on this drug.
It's so hard to say if it is working or not. He does not have nearly as many of the longer seizures as he was having, but he does continue to have daily small seizures.
John's behavior has gotten quite bad, and this could also be from the high dose of Felbatol. Who knows? If he gets frustrated these days, he will usually start tipping over furniture or throwing things. He also pinches a lot, and will sometimes just run up and attack you. He also spits all the time now, and pees in inappropriate places (i.e. outside at the park). We want to stop all of these behaviors before they get out of hand, but we're not having much success yet.

The 2 longer seizures that have happened in the last month were also different than we've seen before. At preschool, they say he made a strange sound for 30 seconds while his eyes were fluttering. We've never seen him make any sound during a seizure. The other time he appeared to just be sitting down, and Yoshie realized that he'd been sitting for awhile and when she got to him, he was out and his lips were bluish like he hadn't been breathing. He didn't show any obvious signs that he was having a seizure, though. You wouldn't even know unless you were looking at his face.

We've also continued experimenting with the Chinese herbs. Sometimes he seems to improve after changing the formula, but we still haven't found the magic potion yet. The herbalist remains very caring, thoughtful, and optimistic, which is refreshing.

In the past month, we also tried a new speech therapist that was closer to our house. She thought John needed OT before speech. We've heard this before, and we've heard the opposite. We think he needs speech, so this new place might not work out.

A lot going on

I haven't posted in a long time, but not because nothing has been going on!
I'll try to catch up over the next few days and add some pictures, but the gist of the last month is:

• We increased his Felbatol to 12ml/day.
• He's only had 2 longer seizures in the last month, both of which were different than we've seen in the past, and one of which happened at preschool.
• Daily small seizures continue.
• Behavior has gotten far worse. We don't know the cause of this.
• We built a climbing wall in our living room! (pics coming soon)
• We spent 6 hours in the ER where John ended up getting some stitches in his forehead (not seizure related for once)
• John had blood in his stool, which worried us for awhile. But, the tests came back showing nothing was wrong.
• We had his IEP meeting and we got our tentative placement for the next school year.
• Not John related, but it was confirmed through a stress test that I have some sort of a heart abnormality when my heart is pushed to it's limit... :(

Check back soon!