We've now increased the Banzel to 1 full pill, twice a day. We've also lowered his Keppra by 1ml in the morning. He's now taking 2ml in the AM, and 3ml in the PM. So far, he seems to actually be MORE hyperactive, and the seizures are continuing as before. I think some of this is just his body responding to the change in drugs. We're hopeful that he will calm down a bit with time.
I was able to get off work early and go to John's speech therapy session last week. Unfortunately, since I was there John wouldn't go through therapy without my being in the room. My being there kind of ruined the session. I was able to get off work early a 2nd time and wanted to see John in a true session, so I hid in the back of our van with a blanket over me all the way to PSU. John had no idea I was there. Man, it got hot in there. Once John was in the room, I was able to go to the viewing area to watch him. That was pretty interesting. He likes his therapist, and they have a good time playing, but John doesn't seem to learn much.
The weather has finally gotten consistently nice around here, so Maya and John and I have been able to ride our bikes a little. Maya rides her new Mtn. bike, while John rides on a tag-a-long behind my bike. He often screams with joy and sings a lot while we ride. He also has started to pedal sometimes which is cool. He can also pedal his own bike for a little while (with training wheels), but he gets distracted so easily that he keeps running in to things and he quickly tires of it. Hopefully by the end of this summer I can get him to ride to the park on his own.
Wednesday, May 27, 2009
Wednesday, May 20, 2009
Another new drug
Well, that ADHD med also caused a rash on the 4th or 5th day. I guess John has an allergy to stimulants. We weren't really happy with it anyway. We might try Strattera next, but we had an appt. with his neurologist and decided to try a different path for now. As of May 18, we have started him on a new seizure drug called Rufinamide (Banzel). This is a new drug, only approved a few months ago. The hope is that this drug will work for John and we can lower his Keppra dose. Keppra is likely causing at least some of his hyperactivity so that is why we want to get that as low as possible. We also had his VNS turned up a bit again. It's still nowhere near as strong or frequent as it was in the past, but we're slowly inching it back up.
John's in-home speech therapist (that we love) is taking some time off, but John still goes to PSU twice a week for speech therapy.
We got some financial assistance from the county to hire a behavioral therapist as well. We had the first session last weekend. We're going to try to work on getting John to sit at the table during meal-time, and to fall asleep without one of us having to be in his bed. We're also going to take the therapist on a shopping trip, and maybe out to eat, so she can see some of the challenges we face there.
We had a scary experience on Sunday while I was watching John. We were out front of our house. I was cleaning my bike and John was climbing and playing with rocks as usual. He took his shoes off, so I made him go inside for a bit. After awhile, I went in to check on him and I couldn't find him. I frantically looked everywhere and finally realized that he had pushed a window screen out and was gone. I ran down the street towards the busy cross street looking for him, but couldn't find him, so I ran the other way towards the park and still couldn't find him. I went back inside to see if he was there, but he wasn't. So, I went back out towards the busy street again yelling at the top of my lungs. I finally saw John coming back towards the house laughing and barefoot. Once I got to him, I noticed that traffic was stopped at the intersection and people were out of their cars. I don't know exactly what happened, but he at least had traffic stopped. A guy yelled from a distance "He was almost killed!". Very scary. I don't know where he thought he was going. I'm sure the people didn't know what to do, as he can't understand anything and probably had no regard at all for oncoming cars. We're just glad he's safe, and we are putting locks on our windows so they can't open too far.
John's in-home speech therapist (that we love) is taking some time off, but John still goes to PSU twice a week for speech therapy.
We got some financial assistance from the county to hire a behavioral therapist as well. We had the first session last weekend. We're going to try to work on getting John to sit at the table during meal-time, and to fall asleep without one of us having to be in his bed. We're also going to take the therapist on a shopping trip, and maybe out to eat, so she can see some of the challenges we face there.
We had a scary experience on Sunday while I was watching John. We were out front of our house. I was cleaning my bike and John was climbing and playing with rocks as usual. He took his shoes off, so I made him go inside for a bit. After awhile, I went in to check on him and I couldn't find him. I frantically looked everywhere and finally realized that he had pushed a window screen out and was gone. I ran down the street towards the busy cross street looking for him, but couldn't find him, so I ran the other way towards the park and still couldn't find him. I went back inside to see if he was there, but he wasn't. So, I went back out towards the busy street again yelling at the top of my lungs. I finally saw John coming back towards the house laughing and barefoot. Once I got to him, I noticed that traffic was stopped at the intersection and people were out of their cars. I don't know exactly what happened, but he at least had traffic stopped. A guy yelled from a distance "He was almost killed!". Very scary. I don't know where he thought he was going. I'm sure the people didn't know what to do, as he can't understand anything and probably had no regard at all for oncoming cars. We're just glad he's safe, and we are putting locks on our windows so they can't open too far.
Subscribe to:
Posts (Atom)