I asked Lee to go with me to this appointment. He has really never been to any of J's appointments before, but I thought this was a really important one so he went with us. It was nice also not to have to drive the whole way there and back by myself.
I thought it was a really good appointment. It is so nice to hear "we can try a,b,c,d,e" instead of "we are out of options." We met with the doctor, nurse, and psychologist. We had sent them records that they just got about 10 minutes before we got there so they were not able to go through them before hand. They had watched the video that I had made for the GI (he passed it on to them) and he had a lot of questions about that, and his history, how does he show he has pain, and the meds he had tried in the past, pain triggers, and what can help his pain, what kinds of things he enjoys. He talked a lot about how some of the medicines we had tried in the past were not dosed as aggressively as he would have liked and that we likely would revisit some of those meds and try higher dosages. He called J's list of past meds "wicked".
The doctor and the nurse then took Jackson to examine him while Lee and I spoke with the psychologist. They said they were really impressed with how well he was cared for (no contractures, good social skills, nice tube site, etc). I guess they got a little too close to his mouth and he started bubbling up, but they were good and took our advice and started flapping his arms around (sounds crazy but it helps)and he started to feel better.
So we have a plan now, which is nice. First, we are starting to increase his baclofen at a quicker rate. The GI was really really conservative with it (glad I wasn't the only one who thought so!) so we are going to go up 3 mg every 3 days until we get to 24 mg/day. We are on 6 mg per day now. If it sedates him too much or makes him too floppy we will either camp out at that dose for a while or back off to the previous dose.
At the same time, he is going to talk to Dr. Li (CVS guy) about how to start him on a high dose of zofran without a central line since his only knows how to do it on kids with a line. We have tried zofran before, but never in high doses. He mentioned that our insurance may deny it because it is super expensive but they will fight it.
If the baclofen does not help, then we will try to raise the lyrica. He said he felt there was quite a ways we could go up on that.
If that doesn't help, we can try klonopin. And then we can revisit neurontin on much higher doses. They are not going to try any more tricyclics with him because of the side effects that J has but he mentioned there is a different kind of antidepressant that he can try if all the other stuff does not work.
We will go back in a month. (Hopefully we can start to coordinate this with GI appointments so we can make one trip instead of 2 trips a month to Milwaukee.) I am just thrilled to have someone doing SOMETHING!!!!!
Bus Update:
I asked the principal for Jackson to have a nurse riding on the bus with him. He agreed to put J on a route with a nurse beginning Tuesday, the first day of summer session. We are happy with this solution and Jackson will now be riding the bus both to and from school. Hopefully there will not be any more issues with the bus!
Jackson is fine. Aside from the marks that you can still see on his face (nearly a week later!), you would never know anything happened.
Pics from last day of school:
They always have pony rides and a petting zoo on the last day for the kids. Jackson said he wanted to have a pony ride. I did not think he would like it (too hot, too smelly, too jerky) and he didn't...but I think it's cool he wanted to try!
He looks pretty happy here, but the pony had not started moving yet. His PE teacher and his PT are holding him up.
This is his "I am going to barf soon unless you do something quickly" face.
Here you can see the whole pony.
