FPIES

Munroe and Our Allergy Journey

I want to introduce you a little bit to our allergy story and my biggest inspiration.

Our son, Munroe, was born in November of 2018. His first few weeks of life were exciting, but also a whirlwind of emotions. He had a tongue tie that was snipped early, but as a result he had a weak tongue which led to difficulties nursing, low weight gain that resulted in physio. Things started to level out around Christmas-time, and that’s when we noticed a rash on his little bum. We did what we could, we applied the creams, and changed him more often, we were using cloth diapers, and weren’t sure if it was wet nappies that were causing it.

When things weren’t getting better, and almost seemed like they were getting worse, we called Healthlink. The nurse on the other end was kind and recommended we switch from using baby wipes to just a warm wet cloth, and recommended that we make an appointment with our doctor. We switched right away, and we already had an appointment for his 6-week checkup, so we waited for that. Things got a bit better, but the rash didn’t go away. We went into our appointment and talked to the doctor, she recommended removing dairy from my diet, explaining that the proteins could be present in my breastmilk, and if Munroe had a sensitivity to the dairy his body would try and remove the dairy as quickly as possible, potentially resulting in the diaper rash. We went home and I took out all obvious forms of dairy, no more milk, cheese, or cream in my coffee. Things got better; the rash went away.

Our doctor had said we would reintroduce dairy later, and after a few short weeks I was at an event and they were serving coffee with cream, I had one. Later, a rash appeared on Munroe’s arms. I looked for support on social media and came across a group that was dedicated to Mom’s like me, I joined and that was the first time I heard the term CMPI (Cows Milk Protein Intolerance) and the first time I had heard that I needed to eliminate ALL forms of dairy, so we started again, but this time I cut everything!

I took the hour-long trip to the grocery store, looking at everything, reading all the ingredients, trying to find our new staples. I started to do the research, why did I have to eliminate all forms, how long did I have to do it for, what happens if I accidentally consume some dairy? Any time we went to a restaurant I made sure I was eating dairy free, and anytime we went out to friends/family I offered to bring my own food. Whatever I had to do for my son, I was going to do it.

Then, around Easter of 2019, Munroe started to get a rash everywhere. It was red, inflamed, and it looked sore. I contacted a nurse I know, and she recommended that I bring it up with my doctor. We started to think maybe more foods needed to be eliminated, but which ones? So, I started to track everything I ate which helped me to narrow down to one item I was eating that I was made to believe was dairy free but actually had dairy in it. I immediately eliminated that item, and our detox clock started again.

Things were going well, and it was time to start introducing solid foods to Munroe. I started with egg yolks; I had read they were a good first food as they are loaded with nutrients. Munroe didn’t seem to love or hate them, but he was eating them, so we moved onto sweet potatoes. He loved them! I decided I would mix the two together and try that. Two hours after feeding him the combination of the two foods Munroe started projectile vomiting. He threw up until he had nothing left. He was clammy and lethargic. We cleaned him (and me) up, and decided it must have been the food, maybe it had gone bad somehow. We threw the food away and decided to try again. Again, a couple hours after consuming the food, Munroe started to projectile vomit. I called Healthlink, and they figured it was just a stomach bug and told us to keep an eye on him. He was still nursing so that was a good sign. 

It’s at this point I wish that I had talked to our own doctor, and I did… Sort of.

I only talked to her to ask her if I was supposed to give him the whole egg or just the yolk. She said to give him the whole egg, and we made a plan to try the whole egg.

One Friday night we made Munroe scrambled eggs, we sat down for dinner and we started feeding him. Or, I should say we tried to feed him. Within seconds he spit out the food, as I started to tell my husband that I have read that sometimes when a kid wont eat the food it could represent an intolerance to the food, Munroe’s face started to swell up. We immediately cleaned him, trying to get all the food traces off of him, we got him dressed, cleaned the kitchen and headed to the hospital, where we spent a large part of the evening.

In the following weeks we talked to our family doctor and were able to add an allergist and a pediatrician to our team of doctors.

That was over a year ago, and we’ve since learned that the projectile vomiting, that Munroe experienced, is something called FPIES (Food Protein-Induced Enterocolitis Syndrome). We have done tests for IgE allergies, and trialing food has been done at a snail’s pace. We’ve been able to build a list of safe foods for Munroe, we’ve added to the list of triggers, and we’ve lost foods we once considered safe. It’s been a long road, and there are so many things I wish we had done differently. We’re not quite done our allergy journey, but we’re well on our way, and we’ve learned a lot.

Munroe and our journey is my driving force. I know from firsthand experience what this road can look like, and I know it’s not easy. I have spent a lot of time in the last two years learning about allergies, and now it’s time to combine my experience with my wholistic nutrition education to help other families navigate their own journey. Empowering families to win the fight against food!