Cristina’s Pancreatitis
Anyone who knows Cristina knows she is such a happy kid and is always on the move. Over the last year things have gotten really complicated. Starting in October 2018 Cristina started to have rapid weight loss. Despite eating very healthy and mostly picking at food on occasion, Cristina had gained weight over the years although the endocrinologist wasn’t concerned and said Cristina needed to lose some weight and said since she just started Pre-K that she could be losing weight from that so she wasn’t concerned. It wasn’t until February 14th 2019 that we learned the weight loss was the sign of things coming. Valentine’s Day morning, Cristina woke up at 2am with extreme belly pain and vomiting. She couldn’t move and became lethargic so we ended up calling an ambulance to take her to the hospital. When we got there she was as the doctor liked to say it “chilled out in the bed” and he was hopeful and joked that it would be a funny story we would probably have for later that Cristina had gas and it turned out to be nothing. However, diagnostic testing revealed it was far from nothing. The doctor came back into the room with another doctor and his face was one I’ll never forget. He said Cristina wouldn’t be going home and that he was admitting her. She had Severe Pancreatitis. He told us in his over 30 years as a doctor he had never seen a Lipase as high as Cristina’s was at 24,000 and she was just laying in bed only mildly uncomfortable. He said grown adults come into the er with half the levels she had bent over in excruciating pain but she was just laying there. He told us Pancreatitis is actually more painful than childbirth and Cristina has a high pain tolerance. The doctors told us that the best case scenario was that it was the flu that had caused it even though it was rare and if it was we would be out in a few days however, the doctors said that was best case and they told us from the beginning they felt we didn’t have the best case in fact, they told us we had the worst case. That day Cristina underwent an MRCP to see if she had a blockage or anything physical that would be surgical to remove that could have caused the Pancreatitis. They also had to make sure with how high Cristina’s levels were that she didn’t have necrosis of the pancreas. This was a huge concern they had and they prepared us in case Cristina had to have emergency surgery and remove part of the pancreas. The doctors were actually hopeful they could find something surgical to remove so that it would be the next best scenario as it would have reversed the Pancreatitis. Fortunately, Cristina did not have necrosis of the pancreas and unfortunately, there wasn’t a physical cause either that we could surgically fix and reverse the Pancreatitis. The MRCP did show she had pretty significant inflammation of the pancreas and she had some fluid but it wasn’t drainable in the tail of her pancreas. The next day things only got bleaker. Cristina’s Lipase rose to over 30,000. We actually do not know how high it went because the hospitals diagnostic tests only go to 30,000. Cristina developed fluid on her lung and began having trouble urinating so the doctor told us to prepare in case Cristina went into multi-system organ failure. We couldn’t stop any of this and didn’t know why it was happening. We were as blind to it as the doctors. At that point the doctors said it was up to Cristina’s body to heal and to give her medicine to keep her comfortable. Cristina had a procedure and a PICC line was then placed. Other than pain management, the only treatment since they didn’t have a physical cause to remove was to have Cristina on total gut rest. Nothing to eat or drink, not even water as anything that you ingest gets processed through the pancreas and causes it to get inflamed. The PICC line was inserted and Cristina began TPN (total parenteral nutrition) so she wouldn’t lose much more weight. By this point, in the six months since she started losing weight Cristina lost 15 pounds. Which for a four year old is very significant. The weight loss and fluid on her lung and the Pancreatitis led the doctors to think Cristina could have Cystic Fibrosis. The first round of genetic testing was done. Thankfully Cristina didn’t have CF but the doctors were stumped once again as to why she had Pancreatitis. Cristina remained hospitalized for 14 days. She didn’t eat or drink until her 11th day of hospitalization. Her levels finally came down and her PICC line removed and we were able to come home. A month later, Cristina had vomiting and pain again so we took her into the hospital again in case it was Pancreatitis. This time we learned it wasn’t but that Cristina had developed Bilateral Hydronephrosis. Basically, she has fluid in both kidneys. We also do not know why she has this either. She was admitted for four days and was sent home. Over the last seven months, Cristina has continued to have belly pain in the same place where her pancreas pain is and continues to lose weight. She’s had numerous tests done and scans to watch out for Psuedocysts, which is a complication from Pancreatitis and to check the progress of the inflammation and leftover damage from the first bout of Pancreatitis. Cristina was able to have a somewhat normal life during the summer and was able to be a kid for what seemed like the first time in forever. She celebrated her fifth birthday and started Kindergarten. All seemed well until September 29th. Cristina woke up that morning and told me ever so calmly that her belly hurt and she would like medicine. It was alarming to us because Cristina has a very high pain tolerance and she tries to hide the pain she is always in. We took her into the er as a precaution and were stunned when the doctors came in again and said her Lipase was at 26,000. Higher than the first time. We were devastated. She underwent another MRCP to check for necrosis of the pancreas and any other surgical interventions and again she didn’t need it. The testing did reveal like the first time she developed fluid only it was worse. Cristina developed fluid in both lungs and her stomach. The doctor said her pancreas was so inflamed that it had fluid and basically leaked out of her pancreas (pancreatic fluid) and took the path of least resistance. Many prayed for Cristina and all were surprised at how rapidly her levels dropped compared to the first time. While the first time she was hospitalized for 14 days, this time she was in for 7 days. She was sent home and more genetic testing has been done to see if there is a genetic reason why this is happening. About a month later Cristina developed Pneumonia. While we had always known any illness or cold could land Cristina back in the hospital, we had hoped it wouldn’t happen. A week after she was diagnosed with Pneumonia, Cristina started having belly pains when she was sleeping. The next day we took her to the ER and sure enough her Lipase and Amylase came back elevated and she was having another Pancreatitis attack. She almost spent Christmas in the hospital however, her doctors released her on Christmas Eve when her numbers improved enough for her to come home. She still has daily pain some days better than others. Last year she spent about 30 days total inpatient between the 4 hospitalizations and had numerous ER visits and outpatient procedure in between admissions. We lost count of how many needle sticks she had, blood draws, IVs, X-rays, ultrasounds, MRCPs, etc. Childhood Pancreatitis is not common in children and there is not much known about it. For most kids its a one time occurrence. 5 in 100,000 children each year are diagnosed with Pancreatitis. Less than 10% of those children have another episode and even fewer have recurrent attacks like Cristina. Pancreatitis is can be caused by other illnesses, physical injury, certain medications, gallstones, problems with the ducts in the liver or pancreas, genetic disorders, high triglyceride levels, etc. In adults Pancreatitis can also be caused by excessive drinking. in about 35% of cases the cause of Pancreatitis is not found. Pancreatitis is extremely painful and is said to be more painful than childbirth. Pancreatitis is not an easy road and we hope for a cure for our daughter each and every day.
