The Doctor Called Me Back

Here is a little bit of back story first.  Shade does not have pain in between attacks, but he has been hospitalized 6 times in less than a year.  His last ERCP was in August (3 hospitalizations ago). His fecal elastase test was done in November (2 hospitalizations ago) and the results show that he is severely pancreatic insufficient.  When I spoke with the GI at Cincinnati Children's, Dr. Palermo, and his nurse to ask if this changes anything, this is what I got.

 His nurse said that at this time, the results of his fecal elastase test would not change the course of his treatment because there is nothing we can do to prevent future attacks and any procedures might cause more damage. They might be willing to do a procedure if we come back again when he is having another attack.
As long as he has some funciton left in the pancreas, they won't do the TP-AIT because natural is better.  They want to keep the whole organ as long as they can.  She said that the islets are in the head of the pancreas and because that is where there is the most tissue, it is the last part to be damaged.

Then Dr. Palermo called back himself and asked if I was clear with the answers to my questions.  I asked about the damage and he said it doesn't happen that quickly.  He said that it is a slow process and that unless there has been trauma to the pancreas like from an accident, the damage happens slowly.  He said that for them to do the TP-AIT, the main criteria is how he does in between attacks.  It doesn't matter how many times he is hospitalized with attacks.  His fecal elastase test results don't really play a part.  His age doesn't play a part (they formerly said they don't like to do the TP-AIT until puberty).  What matters is that he is fine between attacks.  If he gets to a point where he is in pain in between, then we will see if surgery is an option.  As long as he has some function in his pancreas, they don't want to remove it.  I asked about atypical cystic fibrosis and if it causes constant damage and he said it might, but that there are many ways to have pancreatic damage and that we all probably have some damage to our pancreas. I asked if he would like us to come back when Shade has another attack and he said that he is comfortable managing his care from there because of the driving distance for us and because he would be receiving the same course of treatment at Kosair, so it doesn't matter.  We are, of course, welcome to come back to Cincinnati Children's whenever we want to though, and we should still set up an appointment for sometime this Summer unless he sees us before then.

I want to believe the doctor.  I really do, but I don't know if he is 100% correct.  I am a member of a few support groups on Facebook and it is crazy how often doctors are mistaken or some just don't have a clue about pancreatitis because it is rare.  I suppose I won't feel comfortable until we have our consult in Minnesota because UofM is the number one hospital in the country for performing the TP-AIT on adults and children.  If they tell me the same thing as Cincinnati, then I will just have to accept it.  Until then, I remain skeptical.