How old is your child and how old were they when you started this FPIES journey?

Lena had her first acute FPIES reaction when she was 7 months old; she was officially diagnosed with FPIES at 8.5 months. Before her acute FPIES reactions, Lena was having issues with food via breastmilk early on, pretty much right from the beginning.

What were the initial symptoms?

Early on, she cried/screamed all day (and night) long, was bloated and gassy, and had reflux. Thinking back, I do think some of her diapers were mucousy but we were first time parents and didn’t know any better.

Fast forward to her acute FPIES reactions, she was extremely fussy, unsettled, and inconsolable for 15-20 minutes before starting to vomit. She started repetitively vomiting 2 hours after eating her now known trigger food; she vomited so many times I lost count. After about a half hour she started passing out between vomiting episodes. She continued to vomit until she was vomiting bile and then onto dry heaving. A couple hours after her vomiting started she had diarrhea. There was blood in her stool when it was tested at the hospital as well.

What foods did you cut out initially?

I cut out dairy (I am also personally gluten free). Looking back, I do think that she was probably reacting to more, we just didn’t have any help or support. She improved a lot with cutting dairy but still was a “high needs,” fussy baby and continued to have reflux. I did not end up cutting any of her acute FPIES triggers.

How long did it take to clear up?

After cutting dairy, she started to show improvements within a week. With her FPIES reactions, we ended up taking her to the emergency room when she was having her reaction, where she received IV fluids and Zofran. After getting the fluids and medication she perked up after a couple hours. After a day or two her stool returned to normal and she was back to eating normally.

What was the winning combo of foods for your child?

Overall, we trial foods slowly and have slowly added many foods to her diet. We slowly add one new food at a time to her diet and continue to avoid her triggers: sweet potatoes, white potatoes, avocado, butternut squash, and zucchini. She also has issues with chickpeas, although they did not cause an acute FPIES reaction. We haven’t discovered a new trigger food in over a year!

What's your favorite allergy friendly brand or food? 

My daughter loves freeze dried fruit. We get some from Target (Good and Gather brand) and Aldi. Also all of Brother’s All Natural and Crispy Green’s freeze dried fruit is single ingredient, no additives. We also like Enjoy Life chocolate chips.

What is one piece of advice you would tell someone who is just starting out with FPIES? 

It’s ok to take it slow. There is a lot of pressure for babies to be eating a certain amount of food at a certain age, but that shouldn’t apply with FPIES. It is very scary and overwhelming in the beginning. Taking food introductions slowly and developing a trial system that worked for us helped build my confidence with feeding my daughter. And I always say, it does get easier. I never say it gets easy, but it does get easier.

Where are you right now in your journey?

Right now, my daughter still hasn’t outgrown her triggers but we have her in hospital FPIES challenge scheduled for next March! We continue to add new foods to her slowly and have learned to make good recipes with the limited foods that she can have (which is over 40 at this point). I spend a lot of time in the kitchen making her foods. As she has gotten older, she has started to join me in the kitchen to make some of the foods too and we have enjoyed that time together.

Follow Becca @our.fpies.journey on Instagram!