Our FPIES journey, like most, is complicated. There have been very tumultuous times as well as times of relatively smooth sailing. There have been twists and turns. It’s messy but it is our story. I will do the best I can to explain our struggles in detail and make sense of the symptoms we were seeing and the decisions we made. This is the outline version. As I update the blog I will continue to add more links to posts that will give you more detail. My hope is that this page gives you a quick overview that you can use to find the detailed posts (click on the headings) that are most helpful or of interest to you. Please contact me (in the comments or via email) if you have any questions or thoughts or ideas or if you are concerned that your family is headed down the same path and there’s anything I can do to help.
E’s first couple of months were wonderful and stressful all at the same time. As we learned to be a family and enjoy our new bundle of joy, we also worried about lack of weight gain, constipation/gas, eczema, poor sleep, and buckets and buckets of spit-up/vomit. In an effort to increase his weight, we started supplementing with formula in addition to breastfeeding. To try to resolve the GI issues, we switched from milk-based formula (Enfamil) to soy-based (Prosobee) to partially hydrolyzed (Nutramigen). Each change brought new hope but none resolved his symptoms. Finally, we were referred to an allergist and a positive scratch test confirmed an IgE allergy to milk. We were relieved and scared. We finally had a plan and a new formula (Neocate) but also an epi-pen for our four-month-old.
Unfortunately, the vomiting continued. Our allergist was still convinced there was a milk allergy but was afraid there was something else going on. She ordered an atopy patch test, referred us to a GI doctor and recommended thickening the Neocate with rice or oats. The GI doctor repeated what we had already been told, that he would outgrow the spit up once he was about one year old. Thickening the formula didn’t help and then the patch test came back positive for everything they tested (rice, oats, wheat, chicken, milk, and soy)! At that point we started avoiding soy, grains, and meats in addition to the milk. This was the first time I started to consider the possibility of a non-IgE allergy, but no one officially called it FPIES yet.
During this time things were going well. We felt like we were finally in control and had an understanding of what was going on. We were conducting at-home food trials and adding safe fruits and vegetables. E was growing well and the spit up finally slowed down and eventually stopped. Also, the eczema was clearing up. We were able to add some legumes and quinoa to his diet and he even passed a baked egg trial which allowed him to have a birthday cake!
After the big first birthday, everything seemed to be going smoothly We were continuing to add new foods to E’s diet and were shocked when he started having acute reactions! It turned out that, after several successful tastes of baked egg (a 7 day trial plus 2 days of birthday cake eating), he was actually allergic to it! We then had a similar reaction to coconut milk, which he had several times in the past with no problem. These reactions left us feeling confused and frustrated. It seemed that we no longer had a handle on what was going on and anything could be an allergen, even a “safe” food. It was around this time that I determined that he did in fact have FPIES, a diagnosis that the allergist confirmed.
15 Months to 18 Months: Clarity and Confusion
E successfully passed wheat! That was a huge relief given that we recently added egg and coconut to our allergen list. We were anxious to clarify some of his other allergens. He had chronic FPIES symptoms when he tried soy, rice, and oat so we were never completely clear about whether he was allergic to them or was reacting to other things in his diet at the time. We got the ok from our allergist to start doing food challenges in the hospital. It was exciting and scary. We wanted to get a better handle on what his allergens actually were, but, of course a failed challenge meant a reaction, which we didn’t want.
A failed soy challenge helped to clarify one allergen but left us questioning our treatment plan and sent me on a research frenzy. Based on my research, and advice from the allergist who administered the challenged, we tweaked our approach. This led to a series of messy food trial re-dos and, finally, a victory – a passed barley challenge!
18 to 24 Months
After many rejected recipes I realized that E will eat anything that is mixed with avocado 🙂 This allowed us to successfully complete and pass a salmon trial, which opened the doors to all fish with scales. Unfortunately the crab trial did not go as well and he reacted to it on day 10, which means all shellfish is off limits for the foreseeable future. I was slightly disappointed (but understood the rationale) when E’s allergist suggested that we hold off on any new challenges (of the foods on his allergen list) until after his second birthday. However, we were cleared to continue conducting at-home food trials of new fruits, vegetables, grains (other than rice and oat), and fish with scales. We spent these six months acquiring a ton of new safe foods. We finally feel like we have a handle on this FPIES-thing and can finally breathe a little. We celebrated E’s second birthday with an FPIES-Friendly Fiesta and an awesome construction-themed birthday cake.
The next couple of months are going to be big ones for us. This November we will do a dairy challenge and in December we are challenging Rice and Oats. These would be huge passes for us, but could also be huge fails. It’s really stressful but we feel ready. We’ll also be rounding out the year with all the stress that usually comes with the holidays on top of the the extra FPIES-at-family-gatherings-stress. E continues to thrive and has no idea that he has limitations, which is all that matters to me.