Noah started showing signs of having pancreatitis when He was just a few months old. I could not keep the kid fed. He kept the formula business going strong but Noah acted like he was starving all the time. He would eat and eat but never gained weight. He also would throw up a lot. We called it demon vomit because it was impressive. I would have to carry a change of clothes for Noah, as well as myself. Because of this, puking since he was an infant I was told he had acid reflex and was placed on a medication. Surprise, it did not help at all. Since Noah was about 3 months old, he would frequent the ER because of dehydration and lethargic behavior. He would cry and cry without being able to find comfort no matter what we did to help him. During those ER visits, I would be told one of two things. He has the stomach flu or you need to make sure he is getting fresh bottles to avoid food poisoning. Can you imagine how frustrating that would be to hear over and over. Knowing full well the cause was neither of those issues. At one point, I very rudely asked for a new ER doctor because I could not handling seeing this specific doctor again without a complete melt down.
Well this patterned went on for about three years, we were doing everything we could to keep the kid fed and out of the ER but we would end up there often enough that people started to know who Noah and I were. We were desperate for an answer. I would plead with God daily to help my son, to help us find a miracle , to help us find a doctor that could help us.
On September 27,2017 we met our miracle but we did not know it yet. Noah was finally able to get into pediatric GI clinic, the wait was about 9 months. We met one of our favorite people Dr. Trevor Laborda! He was a fellow at Primary Children’s hospital. He saw Noah and knew something was up so He ordered so many tests from Cystic Fibrosis to Celiac diseases, we ran all the tests and everything came back normal. We were sent on our with some instructions and new meds to help Noah. We tried to calorie pack and do all the instructions were given for about 2 years…the same story continued and as Noah could communicate better He would tell us multiple times a day how much his stomach was hurting. It was a new piece to the puzzle but we were still unable to figure out what was wrong with him. After two years of nothing improving I finally said enough is enough we need to be seen again by GI and find more tests or imaging we can do to help Noah. I called and made an appointment to see Dr. Laborda again. When Dr. Laborda walked into the room I told him, if you tell me my child has stomach flu you can walk out that door right now, He headed for the door with a laugh. I knew right then, He was going to listen and was just as serious as finding an answer for Noah and I was. Little did I know that in the years we were doing the testing and waiting Dr. Laborda had gone through a fellowship in San Antonio Texas, that specialized in chronic pancreatitis. When we saw him again, He instantly knew what was wrong with Noah and had him scheduled for a scope to confirm it. On May 17, 2022 we had our diagnosis. Chronic pancreatitis! I laughed when Dr. Laborda told me the news because we finally had an answer! Our mystery disease had a name! Years and years of frustrated just melted away because we finally had hope again!
Chronic pancreatitis in children is a process to diagnosis, there a combination of reasons that create the perfect storm for children to be undiagnosed for years. Currently there are less than a dozen doctors that are trained to do endoscopic retrograde cholangiopancreatography (ERCP) procedure on kids. This very specialized imaging of the pancreas is vital to the diagnosis for chronic pancreatitis. Routine testing in the emergency room for abdominal pain rarely includes labs or imaging for the pancreas because very rarely is it the cause of a child’s abdominal pain. On the off chance that labs are ran for the pancreas, the results could come back normal unless the child is having a flare up, making it even more tricky to catch. In chronic cases the labe results will also appear normal because the pancreas is just to exhausted to make anymore more enzyme. The most insane reason for children to be misdiagnosed is that nursing and medical school programs are still teaching that children do not get pancreatitis. IS THAT INSANE!! I would go to every medical in the country to preach to them about chronic pancreatitis if I could. With these things stacked up against chronic pancreatitis kids, the stars seem to need align perfectly to get the diagnosis and specialized care they need. Thank you for reading our story and sharing it with others, in hopes it finds a family who is looking for answers like I was.