For Food Allergy Awareness Month: My Son Has FPIES

I wish people would stop assuming they know how to fix my kid. Image: Carrie Saum.

I feel the cold grip of anxiety and grief. I just want my baby to get better.

Content notice: emetophobia

It’s May 10, 2015. We are at the cheap grocery store where good food goes to die, if it isn’t dead already.

We are broke. Medical debt has swallowed us whole.

Everything costs too much money — especially food.

My son, Echo, has Food Protein-Induced Enterocolitis Syndrome (‪FPIES)‬. He's rapidly falling off the growth charts. His once-chunky baby frame has turned into a frail, tiny skeleton. I’m awake all night every night trying to figure out ways to get more food into his highly-reactive and allergic little body.

He’s a month away from turning 2; my milk isn’t quite dried up yet. I still feel the slam in my chest when I think about feeding him, even though we weaned nearly two months ago.

I call out to my husband over the 20 people scrambling to fill up their bags with rapidly-decaying organic produce about the really great deal on organic potatoes, and that we should definitely get some for our son.

Echo is exhausted, limp in his daddy’s arms, pale as a ghost. He’s tired from reacting. He’s tired from life.

I feel guilty all the time for my own discomfort and exhaustion: I’m well. I’m healthy. I can eat anything I want without worrying about vomiting up every last bite.

To me, food is still life. But to Echo, it's traumatic poison.

Milk slams into my breasts and I wince from the pressure. I hope I can make it to the car and stuff napkins in my ratty nursing bra, but I already know it’s too late. I feel the dampness beginning to itch already.


 

I’m desperate, though, and full of fear. I'm constantly on high alert, wondering what caused my child to have this horrible condition for which there are no answers, only more questions:


 

A woman next to me overhears me calling out to my husband about the spuds and says, “Do you feed your baby a lot of potatoes?”

With a sideways glance, I quietly mumble, “Yes.”

She launches into a lecture about how important it is to feed our kids nutrient-dense foods.

I stop her and say, “Yeah, I hear you. My son has multiple food allergies, though, so he's limited. This is one of 16 safe foods he can eat.”

Woman: “Hmmm. Allergies usually mean the liver is stressed. A good liver cleanse would really help him. It would clear up those food allergies, I bet.”

Me: “Thanks for the suggestion, but that is not his issue.”

Woman: “Well, I'm a health coach and it works for all of my clients.”

Me: “I'm a trained paramedic and have a background in Ayurveda. My son has multiple doctors and specialists managing his condition.”

Woman: “Well, you should at least feed him eggs with those potatoes.”

Me: “He vomited himself into shock when he ate eggs last year and has an anaphylactic reaction to them. Also, I know you mean well and you want to help, but this is a rare condition with no easy answers. Thank you for your suggestions. I've got it covered, though.”

Woman: “Well, consider a liver cleanse!”

Me: [walking away without the precious organic potatoes before I yell obscenities uncontrollably]

Image: supplied.

I sincerely wish FPIES was as easy to solve as a simple liver “cleanse.”

I wish my son's gut could handle more than a few foods. I wish there were a magic Google function that could tell me and all of Echo's doctors how to manage this jerk of an allergy. I wish I could find the cure so E and his fellow FPIES buddies would never suffer from this.

But mostly, I wish people would stop assuming they know how to fix my kid.

I've spent hundreds of hours and many late nights researching FPIES. I know more than E's doctors, and I'm not exaggerating. We utilize allopathic, alternative, and naturopathic medicine. E sees different doctors at least twice a week. This week, he saw four.

So, sorry, nosy grocery store woman: I'm not going to entertain another piece of well-meaning-but-dangerous advice.

You don't get to judge what I feed my kid or speculate about his liver function. And you definitely don't get to tell me how to fix him or “clear up” his allergies.

♦ ♦ ♦

I lay awake that night and think about all of the things I did that could have caused Echo's FPIES, and wonder if maybe a liver cleanse IS the right thing to do (even though I know it is absolutely the wrong move).

I’m desperate, though, and full of fear.

I'm constantly on high alert, wondering what caused my child to have this horrible condition for which there are no answers, only more questions:

I took IV antibiotics for a long time when I had that parasite in Mexico 10 years ago.

I drank that half-glass of wine that last week I was pregnant because I was so uptight about delivery.

His stroke. Dear God, the stroke. Was it all of the antibiotics they pumped his little body full of before the doctors discovered the cloudy spots on the CT scan?

Maybe it was the anti-seizure meds.

Maybe it was growing up in a toxic West Texas town where the water wasn’t even drinkable in many places.

Maybe it was genetics.

Maybe it was the croissants and black coffee I craved while he was growing in my body.

Maybe it was the lead paint in our apartment.

Maybe it was me.

And what if I make it worse? What if I feed him the wrong thing? What if I trust the wrong person to take care of him because I’m slowly unraveling even as my boobs are filling at 2:37 am?

I feel the cold grip of anxiety and grief. I just want my baby to get better.

To be whole. To be OK. To be healthy.

♦ ♦ ♦

I wish I could have seen into the future that night, so I could have shown myself that one year later, life would be very different.

Echo's thriving now. He eats three meals a day and now has only a dozen foods that hurt him, instead of only a dozen foods that he can eat, period.

He sleeps — we all sleep. He doesn't have an ounce of extra fat, but he's healthy. He's grown so long, we have to buy billowing, too-big shirts just to cover the full length of his torso.

He's so full of life all of our hearts feel like bursting with gratitude.

We don’t have to helicopter him all the time — we can let him roam free. We let him eat the strawberries that grow wild in our garden, and peanut butter cookies, until he’s so full his eyes glaze over with contentment.

I can’t tell myself that he will be OK, because I do not know that yet.

So tonight, I stare at the ceiling with my eyes and boobs leaking and pray for a cure. Pray for wisdom.

Pray for my beautiful boy to make it one more day.

For more information about FPIES and to learn how you can advocate for children and families with food allergies, please visit www.fpiesfoundation.org

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