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.

The Rest of The Story So Far

This is my 8 year old son, Shade. He's always been a very happy and healthy boy despite being diagnosed with an Autism Spectrum Disorder. He loves video games, telling jokes, bowling, and swimming. His life drastically changed forever beginning on June 11, 2012.  I wrote about our first hospital stay in my previous post.  The doctors told us that since he hadn't had trauma to his belly and had no prior history of pancreatitis that it was probably just a one time thing and sent him home on June 16, 2012. He was back to his old self and completely fine until July 7, 2012. He complained of stomach pain and refused food and drink so we took him to Kosair's ER. They checked his levels and admitted him for pancreatitis again. They did an MRCP and came back with normal results. No food or drink and checked his Amylase and Lipase levels daily. His levels came down and he was released on July 12, 2012. The doctors were still hopeful that he would have no more issues, but put him on a low fat diet of 15 grams of fat a day or less. We had so many questions, but we never got any straight answers. When he went to the ER a third time on August 7, 2012, I got mad and began to demand answers and any further testing they could do to stop this cycle. It was taking it's toll on all of us, but especially on Shade. He screamed every time somebody came into the hospital room because he was afraid they would poke him with a needle. Getting the IV in every time was a nightmare requiring several adults to physically hold him down while he begged me to make them stop. I had to help hold him down every time. They started him on enzymes (Creon) on 8/11/2012 and they agreed to genetic testing and told us to keep him on the low fat diet. That was much harder than you would think with a child who's food choices were already self limited due to sensory issues as a result of his Autism. The doctors also finally agreed to an ERCP which was done on 8/22/2012. The doctor who performed it found no anatomical anomalies or blocked or narrowed ducts, but he did find lots of scarring and diagnosed my son with Idiopathic Chronic Pancreatitis. Soon after this, the results of his genetic testing came back and he has 2 CFTR mutations. His sweat test came back normal, but he was sent to a pulmonologist and diagnosed with Atypical Cystic Fibrosis. Now we knew what was causing the Chronic Pancreatitis, but still had no way to stop it from causing repeat acute attacks. He remained on the low fat diet and enzymes and did not have an attack in September and we were skeptical but thrilled. Then came October 11, 2012. Back to the ER with the same symptoms and the same course of treatment at the hospital. This time the doctors finally admitted that they were in over their heads and did not know what else to do for him. One of them actually told us that this is our life now and we just have to get used to it. He said that Shade would learn to tolerate the pain better as he got older. :( I was so discouraged. He was released on the 15th and life went back to our new normal for a while. I decided that I needed to be more proactive and started searching all over the internet for information and help. I found several groups on Facebook, but only one for children with pancreatitis. I felt so alone, but I found out some info and had a phone number to call to a doctor in Minnesota. I was hopeful for at least a consult, but here it is April 2013 and I am still waiting for insurance to decide. Since then he has been hospitalized in December and February and I fully expect him to have to go back towards the end of this month. It's almost like clockwork. We also had meetings with doctors in Cincinnati, but they don't believe he is a candidate for the TP-AIT at this time and want to just "wait and see". They don't like to do the surgery before puberty. I have conflicting information from paperwork from Minnesota though. They have studies proving that children under 10 recover quicker and have an overall better outcome than older children and adults. I know that his pancreas is becoming more and more damaged with each attack and possibly in between attacks. I feel like he is a ticking timebomb. We found out the results of his fecal elastase test from November (two hospitalizations ago) and he got a 99 which is severely pancreatic insufficient. I'm sure if the test was repeated, his number would be even lower now. I don't want his pancreas to become so damaged that we can't get enough islet cells for the transplant, but I don't want to jump into such a serious surgery either. Still, my gut tells me that he needs this. We even went to Cincinnati during his last attack and had him transferred so they could see him during an attack per their request. They accused him of being drug seeking and still want to "wait and see". I don't feel like that is the right approach, but I am just the mother after all. haha I would like to have another ERCP or even an EUS done to see how much damage he has now, but I have been playing phone tag with the Cincinnati GI for 3 weeks now. He hadn't had the results of the fecal elastase test before and even suggested that we might want to take Shade off of enzymes. His nurse told me to definitely keep him on the enzymes (DUH) and that they would call me back with answers to my questions. I have called them again and it has been a week and all I hear are crickets. Meanwhile, Minnesota is still negotiating with Shade's insurance and we are just waiting. Waiting and preparing for the next inevitable hospital stay. Shade is fine right now. He is happily playing and enjoying the last few days of his Spring Break, but I know how quickly that can change and I also know that if his pancreas continues to get damaged, he may end up in constant pain or worse. I'm scared to death and stuck waiting while the time bomb keeps on ticking. So, there is our long story so far. Sorry it's so long. I left out some details of course, but this is the important stuff.