My Life With FPIES

When I was a baby I was put onto formula because I was deemed too hungry for breastfeeding. My family is a bit desensitized to the hell I found my second child, Gavin. All the lethargy and puking was a normal part of my babyhood. I know a few things. I was an incubator baby with an underdeveloped stomach. I was probably vomity from birth. My mom had an emergency csection since the cord was wrapped around my neck. My mom breastfed for three weeks to three months, she’s unsure. I know I was lethargic. My mom had post partum depression and I spent my day sleeping in bed. I have been told I couldn’t be shaken awake and my mother would feed me bottles in my sleep. My baby teeth rotted from having a formula bottle in my crib at night. Apparently, I projectile vomited on everyone and so did my mother.

Some things I know I have been allergic to as an adult are dairy, soy, goat milk, nuts, basil, potatoes and kiwi. I have symptoms of MCAS when under extreme stress. I was allergy tested as a kid and I remember some type of tree and MSG was positive. I know it felt like MSG built up in my system and I would get randomly sick about every six months. Maybe we are just genetically unlucky. My father in law is allergic to shellfish and my father is allergic to morphine. I will say this, for a sick little baby my son has a great immune system. He is two. He is the toughest kid in the world. He doesn’t even blink when he gets needles and is still happy when his fever is 40 degrees Celsius. My daughter is a little different. Ellie is five. If she has the slightest fever she is knocked out. It is borderline, and we need to give her Tylenol.

I’m not sure what I was like tolerance wise, but I do know I went to school FPIES sick a lot. At some point I stopped puking. Most of the time experiencing crippling nausea. I found ways to cope, including over eating. I had systems. I would have Cheerios for breakfast, be fine, then passed out on my desk at school. I’m sure my father got in trouble for a late bedtime. He coped by letting me sleep in and the school hated our lateness. It was elementary school though. I knew I would be sick at school, so I didn’t want to go. My dad would always ask, “Where’s the puke?”. Once I did puke in front of my stepmother Mandy and I had to clean it up. She didn’t think it was right that I could stay home and play video games. I suppose sleeping on my desk wasn’t the worst option.

I think I got MCAS because my FPIES was ignored. I think the body smoke signals. I had no idea it was the cow’s milk. The weekends I spent with my mother and I would always get sick from the pasta sauce. Turns out it was basil. My great grandmother on my mother’s side would make gnocchi with ricotta cheese. Delicious but that would make me so sick. Secretly puking at parties was a thing I did often. I felt better after I was sick, and I wanted to play with my cousins. My father thought I complained too much and wanted people to feel sorry for me. He thought it made me unlikable. Lack of puke, boy who cried wolf syndrome. The reality was I was way more nauseated then he could understand, and lethargic. I was a chubby kid and I was tired. I wanted to lay down, colour, play video games. Sometimes we would go out and I would suddenly feel exhausted. My self esteem plummeted because I was deemed the fat lazy kid. I did my best to keep up appearances, but it was hard. I still feel like that.

Highschool was easier. I was gifted, IQ 136, so I could manage to do the work when I felt like it and lounge around the rest of the time. I wasn’t the best at going to class especially grade 11 and 12. I was convinced I had bulimia. I overate and ate every two hours to keep from puking. Sometimes I’d miss my snack time or try to eat salad for lunch. There were consequences. If I puked I might get a migraine, it might last days. I tried endlessly to work with family doctors to get a diagnosed. Countless blood tests, ultrasounds, a colonoscopy, and an endoscopy later, I was diagnosed with anxiety. I knew this was wrong but it felt hopeless. I feared pushing the issue. I feared being labelled a hypochondriac. I wanted it validated. I had anxiety because I was sick. I felt hopeless and alone.

I developed a deep depression. My immune system wasn’t the best. I got bronchitis three or four times. I was FPIES allergic to an antibiotic. I kept getting sinus infections. I felt stuffy all year round. My family doctor put me on antidepressants. Some of them helped. Life seemed harder than it should, I wondered if everyone felt this way.

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