Our son Matthew was born in December of 2019. Shortly after he was born, our trips to the ER seemed never ending. January of 2020 was when Matthew started having stomach issues. He had problems taking his bottle and also had a lot of problems with spit up. All doctors we spoke to about our concerns just said he had colic and told us to reduce his milk volume and switch his bottles. After the issues continued and he developed some constipation, they then said it was a milk allergy. They switched his milk and prescribed MiraLAX.
June 27th, 2021 was the first time Matthew had a pancreatitis episode. He was about 22 months old at the time. He was very fussy, refused his bottle and would vomit any milk he did manage to drink. We rushed Matthew to Children’s Health Orange County (CHOC), but due to issues with insurance he was transferred and admitted to Fountain Valley Regional. Before being transferred out of CHOC, they did an ultrasound and a CT scan. They told us his pancreas looked swollen and there was some liquid around it. They ran his labs, and his lipase level was greater than 10,000. Once we arrived at Fountain Valley they ran an MRI but told us everything looked normal. They thought he might have fallen or hurt his pancreas in some way which triggered the episode of pancreatitis. They managed his pain, had him on NPO diet and once his levels went down, we were sent home. Three months later on October 28th, 2021 he had a second episode of pancreatitis. He was admitted to CHOC where they ran another MRI and were able to finally diagnose him with Pancreas Divisum.
After he was diagnosed his episodes continued every three months and then started to get a little closer to where he was having one about every two months. During this time, my husband and I were scared because we didn’t know what to expect in the near future for Matthew. We immediately started researching and visiting countless specialists here in California. Very few of them specialize in children and those who do usually don’t intervene until the child is around 5 years old. We decided to reach out to hospitals out of state. We contacted Dr. Tom Lin at Cincinnati Children’s Hospital and he agreed to see Matthew. We flew from LAX out to Cincinnati in November 2021. When we arrived they examined Matthew and Dr. Lin agreed to try to do an ERCP with stent placement. The one-hour procedure turned into four hours. The ERCP was successful, and they were able to see Matthews’ pancreas with great detail. However, the stent placement was unsuccessful due to Matthews abnormal anatomy. They also ran a genetic test which came out negative. He was monitored overnight and we flew back home the next day.
He did have another pancreatitis episode shortly after we came home due to the ERCP and was admitted at Children’s Hospital Los Angeles. He had another ERCP at Cedars-Sinai by Dr. Quin Y. Liu on March 11th, 2022. Thankfully he hasn’t had another pancreatitis episode since.
We try to help Matthew live a normal life. While we keep a close eye on him at all times, we let him run around and play. We don’t want him to feel different or left out due to his birth defect. He’s only 2 years old, so naturally he wants everything he sees. We try to limit his greasy food such as chicken nuggets, pizza, doughnuts etc. and instead offer him healthier versions of those same foods. What had helped us the most has been focusing on the positive things around us. We will fight as much as we have to as long as that means still having our little Matthew with us.
