She’s growing on Nutramigen, so that’s good, right?
I mean, good enough….right?
Why try milk?
Why ever try it!
Nutramigen is enough.
My train of thought chugged, huffed and puffed these words over and over for weeks—even months. There was nearly nothing that would convince me to try cow’s milk again. Not my husband. Not the doctor. Not the fact that she had reached the age when many start outgrowing FPIES. Not even our pending bill from the formula company!
Bella first exposure to milk led her to vomit seven times over 90 minutes. I knew if we tried milk again, we risked the possibility of a much more severe FPIES reaction like we’d had with soy.
Fear is a reality of FPIES, isn’t it? We fear a repeat of that worst reaction. We fear we’re not reading the symptoms right. We fear we’re going too fast or too slow. We fear what can happen when we’re not around. We fear we’re not doing enough. We can run, hide and try to mask it but there is a huge part of FPIES that is completely out of our control. And the unknown can be terrifically petrifying.
So what can we do? We try really hard to control what we can control…and keep these points in mind:
Embrace and Face Past Fails
I gave her soy…We didn’t have an FPIES diagnosis yet, just a good hunch that she had issues with milk protein. That’s why she was put on Nutramigen at 8 weeks of age. In the months to come, our pediatrician said to try a soy-based formula first before a dairy-based formula. So I did. I gave my daughter soy. She didn’t like it. She winced and turned from the bottle. I stubbornly made her drink two ounces. Two hours later, seven ER nurses and one ER doctor surrounded my daughter. I sat at her bedside, shaking and shocked.
I gave it to her. And I never wanted to be the one that gave her a trigger again. Better yet, I never wanted to see her that lifeless again.
Every time we introduced a new food, I’d tremble with fear. Even foods less likely to cause an FPIES reaction gave me fear. Because tucked in the deepest part of me was that image of my daughter in that hospital bed.
As a FPIES parent, we are constantly experiencing (and replaying in our minds) the trauma of FPIES. It can be easy to let the fear keep us from introducing any new foods. But it can also be exhausting to carry and suppress that amount of trauma. It’s not an easy thing for people to relate to; it can feel really lonely and hard to even to talk about. If you do talk about it, and nobody gets it, it leaves you feeling more disconnected and questioning whether the fear is real or legit. Fear is a very real part of FPIES and so is the trauma that led to that fear. Acknowledge those fears and past fails; don’t hide or bury them. This will help you face the trials to come rooted in the reality of FPIES but not overcome by it.
A Food Fail Does Not Equal a Parenting Fail
Somewhere along the journey of FPIES, I internalized it. I took responsibility for it all. I was convinced that if Bella failed milk (or any food I gave her), then I had failed her.
You, me, we…are navigating a really difficult, muddy and confusing path. If a food is challenged and failed; it is a failed food challenge—not a parental failure. You have not failed anyone. In fact, you have succeeded. How so? By doing your very best to care for your child. By making hard decisions on behalf of your child. You have successfully navigated one more step in the journey, yes? Let that be your focus. Let that be enough.
There’s Fear, and Then There’s FEAR
It’s okay to be scared.
Being scared means you’re about to do something
really, really brave.
– Mandy Hale
Fear is a pretty all-encompassing word for how we feel about the unknown and unpredictable parts of our lives. But not all fear is the same. Some fear is irrational and paralyzes us. Some fear is helpful and keeps us from danger. Some fear is rooted in the all-too-familiar, while other fear is rooted in the completely new and uncertain.
Sometimes I wondered if I was strong enough, if I could just pull it together, then I wouldn’t have the anxiety or fear. At restaurants or playgrounds or anywhere food was present, I found myself wiping and cleaning constantly. I assumed people thought I was weird. Maybe I was a little extreme (I’ll give ‘em that!). The truth was, I really didn’t know if there were crumbs of food on Bella’s hands…or shirt…or seat…or table—or what that would do to her.
My experience as a parent, and that need to protect my child vigilantly, was not something most moms I chatted with could relate to. And yet, I somehow expected them to understand, and worse, I allowed myself to be ashamed of those feelings.
When we’re talking about this kind of fear, this fear of FPIES, it’s a deep-rooted concern for the well-being of our child. That kind of fear is okay. You are not weird or weak. You are concerned. And it takes a strong and courageous parent to take that fear and choose to face it head on and charge forward with new foods and challenges.
So when it comes time to trying that new food or retrying that old trigger, remember, the fear—the concern you have—is just because you are about to do something really, really brave!
Featured blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series. Click here to read her previous posts.