I spoke with Dr. S. on Wednesday. He said that he and Dr. R. had spoken the day before.
First, he and his colleagues were very puzzled by Jackson's reactions to the tricyclics. He said that to have pain in the limbs is very rare with these medications and then to have it in only one leg is pretty much unheard of. That seems to be the way it goes with Jackson.
He said he and Dr. R. believe that seizures could be causing the retching (although the last VEEG we had really did not show that there was any correlation...whatever! ) so the first thing they would like to try is to raise J's keppra to maximum dosage. (Jackson is on 2 seizure meds though and I am kind of hoping they want to raise the lyrica first. I called Dr. R's nurse and asked exactly what were they going to raise...still waiting to hear. Hopefully we will hear today, I would hate to have to wait all weekend!)
So if that doesn't work, we can then decide between 2 options. The first option is to try another tricyclic (aside from the desipramine and the amitriptyline we have already tried).
The other thing we could try is a medication called marinol, which is a cannabis(!) based med used mainly for vomiting and nausea during chemo.
Also, he would like to see Jackson start back on a PPI. He has been on quite a few different PPIs in the past but stopped since they never seemed to do anything for him. Dr. S. said at least it could help to protect his esophagus from damage. He also said it was ok to put the PPI in the J tube, it would still work. I did not know that.
So I am happy that there is a plan in place...although I would be really happy if it was a plan that was actually going to work this time. But at least we are trying something, which is better than trying nothing.
Also, we went to get Jackson's AFOs adjusted today. He needs to be able to lock out his knees so he is able to stand. By design, AFOs are made to prevent people from locking their knees. Last time, the orthotist just took some of the material off the bottom of the heel and that was enough to let him stand better. This time, there was not enough material on the heel so she built up the toe instead. Unfortunately, she could not build it up enough to be effective without making it so big that it won't fit in his shoe...so they are going to be remaking his AFOs.
