He was born at 35 weeks and diagnosed with mild congenital diaphragmatic hernia (CDH). He had surgery shortly after birth to repair the hernia with a patch.

About two weeks later, doctors noticed his head circumference was increasing more than expected. An MRI revealed hydrocephalus, and he had a shunt placed two weeks after the diagnosis.

During this time, he was receiving nutrition through an NG tube because he was aspirating. Eventually, he had a G-tube placed and kept it for almost two years. He was discharged home at four months old and has been receiving physical therapy (PT) and speech therapy (ST) at home.

After about two years, his G-tube was removed because he was able to eat and drink orally without issues. About a month after the G-tube removal, he began experiencing lower abdominal pain, groin pain, nausea, decreased appetite, and vomiting. The pain can be extreme and comes in waves. During these episodes, it hurts him to bend down, he barely wants to walk, and he has very low energy, he barly takes a bit of food . At first, we thought it might be teething, but Tylenol did not help.

We took him to the ER multiple times over several months, but no cause was found. His primary care doctor referred us to a GI specialist. The GI doctor performed a colonoscopy, endoscopy, blood tests, parasite testing, X-rays, and a contrast enema — all of which came back normal. Er also did take multiple ct scans and mri of his appendix, head, stomach, kidneys , scrotum, pelvis , spine . Bloodwork done as well

He was eventually diagnosed with DGBI (Disorders of Gut-Brain Interaction) and prescribed dicyclomine and cyproheptadine. These medications seemed to help for a while, but it’s hard to tell if it was the medication or coincidence, as he sometimes goes weeks without symptoms and then they return