At first, my son had an unknown illness. Then, when he finally got a diagnosis, we learned we would be dealing with the unknown for the rest of his life. rarediseaseday
Before I had my son, I knew what kind of parent I wanted to be. My husband and I had decided on everything from co-sleeping andto schooling and nutritional choices. Like many moms-to-be, I fantasized about our growing family and the role our son would play in our lives. But then my son, David, came along and we all know what they say about the best laid plans.
After an abdominal ultrasound and a set of labs ruled out more common gastrointestinal diagnoses, his paediatrician referred us to a paediatric gastroenterologist. It took months of appointments, weight checks, dietary changes, labs and an endoscopy/colonoscopy until his gastroenterologist was able to diagnose him with a rare condition called mast cell activation syndrome at eight months of age.
The unpredictability of MCAS works the other way too: Something previously considered “unsafe” may be perfectly fine another day. A couple of years ago, we noticed that Benadryl made him vomit—an unfortunate reaction to a medicine meant tothe severity of his reactions. Instead, he tolerated Atarax as his “rescue medicine,” until the effectiveness of the drug seemed to wear off, and it was no longer helping him.