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The Perseverance of a Mom to a Little Girl With FPIES

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Since birth, our daughter has had challenges eating and gaining weight. At 3 months she was moved to an expensive formula that was amino acid based (no protein to digest) because she couldn’t digest protein at that time. Thankfully we had discounts for the formula and loving friends and doctors who gave us free samples to help us. When she finally got allergy tested she was 9 months old. She was allergic to corn, oat, wheat, egg, dairy, soy, all nuts. At that point she was going to be on formula for a while.

It was hard to find foods without those ingredients, but we learned and adjusted. Soon after that, she was diagnosed with food protein induced entercolitis syndrome (FPIES). It was nice to have a diagnosis, and we had a plan to move forward. She was finally gaining weight. She still was dependent on formula for a while until she hit 16 months and some of her allergies went away. Corn, oat and wheat. Dairy was more of a lactose intolerance at this point. So we could add new foods. It felt like victory!  She was eating more from the table and was growing.

She was down to one bottle a day until we went back to the specialist; her weight was down again. Back to more formula. Finally we got the news in March 2016 that we could stop the formula and just keep eating what she is eating. What a relief. So we kept doing what we thought we were suppose to be doing.

In September 2016, at her 2-year-old appointment, she’d lost again and dropped off the charts. Since we were moving and wouldn’t have insurance for three months I did my best to follow the doctor’s advice and tried to have consistent meals and eating. Family and friends so generously helped us pay for preschool.

She has been eating more and drinking more of her milk than ever before. So at this most recent weight check we were hopeful. But we learned she has fallen off the charts again both in weight and height.

We are exhausted from all this. I keep beating myself up as a mom saying, why didn’t you feed her this, why not this? But then in the car one day this week I realized there are some things I as Mom cannot control.

As moms we sometimes think it is our faults. We always seem to blame ourselves and keep running over and over the decisions in our head. Should we let them cry it out? Should we feed them fast foods? Should we let them climb on everything?

We have to give ourselves a break. We seem to compare ourselves to each other all the time. These past few months I tried my best to just enjoy the fact that our daughter has been eating good food. She is a healthy eater! I stopped thinking about her weight.

Even at moments when I am hit with disappointment, I need to focus on finding maybe a new set of doctors who will help us figure out the root of the issue. Exhaustion leads to perseverance, which leads to hope. I can’t and won’t give up on my baby girl.

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Thinkstock photo by CentralITAlliance

Originally published: February 4, 2017
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