Notes from FPIES Dads, Part 2

Notes from FPIES DadsLast Friday, we shared a Father’s Day post with insights from some of the dedicated FPIES dads we’ve met at IAFFPE. Soon after, we received a note from a dad with a valuable perspective. Dan is looking at FPIES from the rear-view mirror, as his daughter has recently outgrown FPIES. Here’s what he wants dads and moms managing FPIES to know:

What advice do you have for dads who are new to FPIES?

1. Trust Mom’s Intuition: If it had been up to me, Bella would have bulldozed through these issues. I would have pushed her and pushed her some more. I know now that if it weren’t for my wife’s 6th sense and strong voice, her persistence, patience and concern, Bella may have ended up much worst. My wife said something was wrong when breastfeeding. I kept pushing her. We stopped at a month. She was concerned about food allergies. I doubted her. The reality is that her fear was a healthy fear and something I’m learning to value.

2. Patience: Having a child with FPIES takes a ton of patience. You’ll need to plan everything way in advance—outings, travel, holidays, appointments, etc. Life is not normal. It’s really hard to understand at first but your child has different needs than most children, and those needs revolve around food.

3. Stress: No doubt, you and your child’s mother will have issues. You’re dealing with something that many other parents won’t have to. You won’t agree on everything, but make sure those lines of communication stay open.

4. Educate: Be prepared to teach doctors (and everyone else who matters in your life) about FPIES. Know that you’ll soon become a nutrition expert, which might help you lose 30 pounds (as it did for me!).

5. Hope: Though it can seem hopeless at times, know that for most there is an end to FPIES. To get through it, use common sense. Avoid triggers and read about nutrition that promotes healing of the gut. Hang in there. Stay by your woman’s side and remember that if you can make it through this, then you’ll have more endurance to make it through most anything…together.

What do you want FPIES moms to know?

It’s tough on dads too. Most moms have certain expectations about how they are going to feel with their children and what it means to be a “good mom.” I imagine most moms of FPIES children never expected the early years would be filled with such fear and uncertainty. Like many men, I just want my wife to feel like she has it all. Both of us had a vision of parenthood that was changed by the realities of FPIES.

Even if your child has only a few safe foods, give them as many choices as you can so they feel a sense of control. When our daughter was a toddler and had only a handful of safe foods, we did our best to give her variety within those foods by mixing up the textures and preparation.

As your child gets older, it’s important to still make prudent decisions but also remember that at some point most children with FPIES outgrow it. The only way to know is to introduce the foods that scare us most. Though it’s understood you never want to do anything to harm your child, it’s important to find a balance. Fear is normal and healthy; however, don’t let it rule you.

Thanks to Dan for sharing his insights!


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