Dr. S said that basically we are coming to the end of the line with medications we can try. And some of the few meds that are left that may work have some undesirable side effects that make me not even want to try them at all. So we have decided to give the baclofen a shot, even though Jackson is severely hypotonic. The other options are phenobarbital, benzos, botox (endoscopically), or surgical options.
The surgical options he mentioned were fundoplication and gastric bypass. Right now I do not think either of these are worth considering, and I was shocked that he brought up the gastric bypass at all. I can not image us ever consenting to that.
So we decided to have the baclofen compounded a the CHW pharmacy because it is very difficult to find a compounding pharmacy here, and I am firing our current pharmacy anyway. Long story short, the pharmacist needed to speak with the doctor before making the medicine and we left without it. It will be sent to us.
It is a ridiculously (pharmacist's word) small amount of baclofen that we are starting him on so chances are small that it will have any effect--positive or negative--until we do a few increases.
