Over six years ago, when she was only 7 years old, Hayley had a sudden attack of severe upper abdominal pain accompanied by vomiting bile and swelling in the abdomen. I took her to the ER at Cambridge Memorial Hospital (CMH) in Cambridge, Ontario. The ER doctor did an X-ray, ultrasound, and various blood tests. He couldn’t find a cause for the attack, so he contacted the pediatrician on call, Dr. XXXX. The ER doctor also put her on IV fluids, morphine, and Gravol.
Dr. XXXXX looked over the CMH tests and decided to test Hayley’s amylase levels. The levels came back at 1500. She was immediately admitted to hospital, could have nothing by mouth, remained on IV fluids and was given Gravol and Morphine for nausea and pain. She stayed in hospital for five days. She was gradually reintroduced to clear fluids, then food, then taken off medications and resumed a full diet. Through our discussions, Dr. XXXXX said that he thought the irritation of the pancreas was likely a one-time occurrence, perhaps caused by a blow to the abdomen. He said there would likely be no recurrence.
Six months later, Hayley had another attack with exactly the same symptoms: severe upper abdominal pain, protruding upper abdomen and vomiting bile. I took her to the CMH, emergency room and told them about the previous attack. Dr. XXXXX was on call at the hospital that night; he was shocked to see Hayley back again with these same symptoms. She described the pain as sharp knives cutting the insides of her abdomen. I took that as extremely sharp jabbing pains. On a hunch, Dr. XXXXX tested her amylase levels again and found that the reading was once again very high (1900), indicating an inflamed pancreas. She was admitted, put on IV fluids, given Morphine and Gravol for the nausea and pain management, and could have nothing by mouth to allow the pancreas to rest. She stayed in hospital for several days, and was gradually reintroduced to clear fluids, then solid food and slowly taken off medications.
Three months later, she had a third attack, and from that time up to now more attacks have followed, 2007-2011. The occurrences increased quickly, happening every 8-12 weeks. Each time, her amylase levels were elevated, ranging between 400 and 2500. With some attacks, there was no vomiting; with others, there was vomiting of pure bile. All attacks gave her severe upper abdominal pain and swelling in the pancreas area, as well as high amylase levels. There was however, not always a clear correlation between the amylase levels and the pain. Her levels can be lower and the pain can still be knee dropping (even to this day).
We were now at the mercy of Doctors who did not seem to know what to do. Throughout this time, Dr. XXXXX consulted with another doctor in Cambridge, Dr. XXXXX. Eventually, they referred Hayley to McMaster University Medical Centre where her case was handled by Dr. XXXXX (Assistant Professor of Gastroenterology at McMaster Hospital). Dr. XXXXX ordered various tests including an MRI, CT scan, sweat chloride, and other tests. Because of the increasing attacks, Dr. XXXXX decided to do genetic testing. The genetic tests revealed that Hayley had the SPINK1 gene mutation (active) on one chromosome. Dr. XXXXX also mentioned ordering either an MRI or an ERCP. She chose the MRI stating that she thought the ERCP would be too invasive for Hayley. I can’t help but feel that if the ERCP had been ordered at this early stage, we might have found the stone in the pancreatic duct before it was too large to fully remove. Given all the unusual and unexplainable circumstances surrounding Hayley’s illness, I believe it would have been the right time to place more urgency on trying everything to find the root cause of the pain or do whatever was in my power instead of waiting for another 14 attacks to happen and then do the ERCP (anyways) only to then locate a stone way too large to be fully removed from the pancreatic duct.
What ever happened to drastic times call for drastic measures??? We were NEVER given a choice!