First, let me say I am so mad at our GI office here. They told me they were sending Jackson's stuff over there months ago and it turns out they never did! So they had absolutely no history or test results at all for him! But they did write up the order to get everything transferered there.
Dr. S. was really nice, and his nurse is the best...I really love her! We were going over his symptoms and Dr. S. asked if he had been vomiting every day for over 3 years, so I said not for three years, only since he got sick...and they both had blank looks on their faces, so that's when I figured they had no records and we had to start from the very begining.
He feels that Jackson's vomiting and pain come from the Central Nervous System...which I have been trying to tell our team here for quite a while. He said that we could do one of 2 things. We can either go ahead and do manometry testing. Or we can proceed with the assumption that it is CNS related and try some more meds to try to relieve his pain that way. He said if the manometry reveals damage, it would not really change the course of treatment much (if at all) so we decided to not do the testing at this point and just try some different meds for a couple of months. If things don't change we can do testing then.
Because we have already tried amitriptyline and had to quit it due to the side effects, he would like to try a different tricyclic antidepressant. So we went to have an EKG before we left (because this class of medicines have been known to cause arrhythmias). When he gets the results of that (should be 1 or 2 days) then his nurse will call me to let me know the plan and call in the meds to the pharmacy.
I also requested to see a GI there instead of our local hospital because we have not had much luck there in having them be responsive, taking Jackson's pain seriously, and obviously they can't be trusted to send records anywhere either. (Of course they couldn't believe we wanted to drive that far just to see a GI when we obviously have a ton of them closer...but I would rather go there) So when the nurse calls I will ask her which GI she would recommend.
