FPIES - The Good, the bad, and the ugly
Our Family’s Story
Our journey with FPIES (Food Protein-Induced Enterocolitis Syndrome) began when my youngest son was just a few months old. He was having trouble eating, was always throwing up, and was very uncomfortable a lot of the time. After visiting with the pediatrician many times, we ended up seeing a pediatric gastroenterologist. This doctor told us that it was likely reflux causing the issues and gave us medicine for him. In reading the discharge papers after the appointment, I read that the doctor mentioned him having FPIES (which he did not discuss with us). I began to research what FPIES was and the symptoms, and I knew he had this. The reflux didn’t fully explain all that was happening and the FPIES did. We ended up finding an allergist (that diagnosed him) and a pediatrician in our area that was familiar with FPIES. We started finding foods that worked and ones to avoid. It was a long and stressful process that I was intertwined with since I was nursing him. My son and I, along with the rest of our family, were on this journey together.
Here is what we learned:
The Good Things
Our family learned to adapt and to be resilient.
We learned to cook all our own meals from scratch, so we knew every ingredient that went into our food.
We became expert label readers and came to know and trust brands that worked for us.
Organic foods became a staple in our home because they often had far fewer ingredients and fewer additives that we needed to avoid.
We learned which restaurants we could eat at because they clearly label their ingredients and which ones to avoid. We also learned which places would treat us respectfully with our questions and requests, and which were not worth our time or risk.
We were grateful that our situation wasn’t nearly as severe as others and we were able to manage it eventually.
We found a very expensive formula that changed how our child felt and grew and we were able to afford it.
We found wonderful support from family, friends, and doctors that helped us keep going.
Most kids outgrow this particular allergy and our son did, which isn’t the case for many kids with allergies.
It forever changed our relationship with food in a positive way.
The Bad Things
It was really hard and stressful for a long time. We had to be on top of absolutely everything he ate or touched for years no matter where we were (home, school, vacation, etc.).
Not everyone understood the severity of it or took the time and effort to try.
There wasn’t a lot of information or resources available.
The medicine, formula, and appointments were all very expensive.
It was very hard to see our child suffer or struggle with why he couldn’t eat certain things.
The Ugly
People are mean and rude. As if we don’t have enough going on, we have to deal with people being unkind or putting our children at risk with their refusal to use safe foods.
Throwing up is pretty ugly.
Hope and Going Forward
His food challenge at the hospital, eating a whole cup of carrots. He passed!
Today, I am happy to say that we are FPIES-free and so very thankful. There is hope for those families out there that are going through this. I am here to say that you can and will get through this. It is hard to see the light when you are in the middle of a dark, long tunnel, but it is there. It is there in the allergy community, in the support system that you build, in yourself, and definitely in your child living with it. As you can see, the good outnumbers the bad in my lists above. This is easier for me to say this being on the other side of the long road, but take the small wins when you can and keep persevering. Find a new way to make a first birthday cake that they can safely enjoy, find a brand that you can trust and your child enjoys eating, and realize your child will likely be a better and healthier eater because of this and your family might too. That may not mean the allergy is gone but just that you are able to live with it, thrive with it, and enjoy your life with your child.
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