Mason’s symptoms were first documented in October of 2019, but he had them for years. He was a “spit up” baby, and I thought that was totally normal. It wasn’t until he got older and could say what was going on that we realized his symptoms weren’t normal – and they weren’t going away.
After an esophagogastroduodenoscopy (EGD) examination from a hospital in St. Louis, Mason’s pediatrician told him that he would grow out of his symptoms. He was prescribed a maintenance dose of laxatives, with his gastrointestinal problems attributed to chronic constipation. He started losing even more weight and needed a different solution. When we moved to Ohio years later and re-established care, he got a referral for a swallow study at Nationwide Children’s Hospital.
The radiologist identified Mason’s achalasia almost immediately. I saw the test fluid go down and stop at his esophagus. Getting answers after years of misdiagnosis lifted such a weight off my shoulders.
Achalasia is a swallowing disorder where the muscles at the bottom of the esophagus fail to relax while eating. Food can get stuck until it slowly passes through to the stomach, stretching the esophagus in the process. On top of being extremely uncomfortable, this condition can cause weight loss, vomiting and trouble swallowing. It’s a condition that’s uncommon in adults and even less common in children.
After his swallow study, Mason got established with the Gastrointestinal Department at Nationwide Children’s where they ordered an esophageal manometry test, an EndoFLIP and another EGD with biopsies. Mohammed Khan, MD, MPH led Mason’s care and reviewed several treatment options with us after his diagnosis. In the end, Dr. Khan performed a Peroral Endoscopic Myotomy (POEM) procedure. Compared to procedures like a Heller Myotomy, Dr. Khan explained the POEM procedure is a safer and more convenient alternative – and one that few pediatric surgeons can perform.
This procedure was life changing for Mason. Dr. Khan and the team were fantastic – like family. Everybody cared and took time to get to know us. They were incredibly easy to work with. Keep being an advocate for your child. Keep pushing and asking questions. If you know something is wrong, follow your gut. The end result could change your child’s life.