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!

Notes from FPIES Dads

Notes from FPIES DadsHere’s to all the dads who rise to the challenge and do so tirelessly and with so much love!

At IAFFPE, we’ve gotten to know some amazing fathers. We’re very fortunate to have several dads as part of our Executive Board. In addition, we met a remarkable group of dads at our FPIES Education Conference last October; they shared an immediate connection. We followed up with these dedicated dads to learn what advice they had for other fathers who are new to FPIES. We also asked what they wanted FPIES moms to know. There is no better time then Father’s Day to share their responses.

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

“Give your wife some room to work, and make sure you are amazingly supportive of her. She is going to be on the front lines as you try to figure out safe foods. Get your hands dirty and make sure you do your part around the house so that she can concentrate on taking care of your baby.”

“The best advice is to reach out and ask for help. Lean into resources like IAFFPE and work on having a support group. My wife and I are always a team in supporting each other with the issues we are faced with. Educate yourself as much as possible and don’t be afraid to fight for your child and ask questions to make sure they have the best care possible. I know for me, having a game plan and the support of my family and friends is huge. It’s hard as a Dad to open up about these things, but the more you can surround yourself with help and support, the more strength you will have to deal with issues that come up.”

“Learn to cook weird food, wife is usually right, and patience.”

“I want to let new dads know that there is a lot of information out there and to make sure they look at as much as possible. And to make sure they receive that information from a reputable source. We may not be able to recite all of the medical terminology but that knowledge is empowering.”

“Dealing with FPIES on a day-to-day basis can be stressful for mom. It’s important that she regularly schedule some alone time to unwind and refresh. Whether she wants to spend it reading, going to the gym, or getting a manicure, she deserves her alone time. In our case, my wife finds running to be great stress release. She joined a local running club, and we coordinate schedules so she can go twice a week.”

“Although they have a hard journey ahead, it’s not the end of the world. A lot of changes will be needed to make their house a safe place (especially if they have more kids), but it can be done. Their social life will change quite a bit too, since only a few restaurants are able to receive children with food allergies, and parties and other social occasions will always be a “risk.” Luckily, they can rely on organizations (like IAFFPE, FPIES Brasil, etc) that can provide valuable information and support to help them on this journey.”

“FPIES isn’t a condition that we can ‘fix,’ but it is a condition that we can help successfully manage. As a husband and father, I feel like it’s my duty, my responsibility to fix problems that occur with my family – physically, mentally, emotionally. Whether a water main breaks, my child gets a nose bleed or my wife catches the flu, I want to take action to make it better. With FPIES, there is no quick fix. I can’t go to the drug store to buy a pill. FPIES is a long-term condition that must be managed daily.”

What do you want FPIES moms to know?

“We are together on this journey, and we have to always join forces. There will be hard times, but the stronger the team, the easier we’ll get through each challenge.”

“Know that you and your husband are in the same boat. One of the hardest things for me to watch was my wife struggle with our son and his food issues. Luckily, we are a great team and this journey has made us even closer. If you’re not on the same page, do everything you can to get there.”

“Dads also go through a very difficult time. In some ways, they lose their wives to the condition, and often feel left out in the cold as their wives dive into the support groups and boards. Make sure you remind them they are an important part of the process and involve them as much as possible.”

“While managing FPIES may, at times, seem overwhelming, you don’t have to take on the burden alone. Include dad as much as possible in the decision making. Whether you’re trying to figure out which food to trial next or how to deal with your insurance company, he may have insights or a different viewpoint that may be beneficial.”

“How frustrated dads are not to be able to fix it. And we may not express it adequately or often enough, but you are doing an amazing job. As terrible as FPIES is, it has shown me my wife’s strength and stamina.”

If you’re the father of a child with FPIES, we’d love to hear from you in the comments section below. What insights have you gained along the way?