What: Walk for FPIES
Where: Greensboro, N.C., Country Park
Sunday, July 28, 3-5 p.m.
A suggested donation of $25 per participant is requested to fund medical research for FPIES
The event will include a 1.5 mile walk on a paved path (great for strollers), as well as a drawing to win one of my original oil paintings. For information about the drawing, visit www.katiewallart.com
I need your help. It’s hard for me to say that because I don’t like to ask anyone for anything. But you see, my daughter has a rare disease and I can’t cure it alone. Together we might be able to make some real progress. If you know me at all, you know this disease has turned my world upside down. Trying to figure out the puzzle of how to nourish my child has baffled me, consumed me and made my soul both shrink and swell. It has given me a purpose like you wouldn’t believe. I never thought I’d be the mother of a child with a rare disease, much less a disease that precluded her from eating healthy food or most any food for that matter. I was afraid of many other things while I was pregnant. What blindsided me was the diagnosis that came months later. I had no idea that a disease like this existed, but what still tears me apart the most is that there is little to no science to help me navigate this nightmare. We can change that together. We can change that today.
You’re probably curious about it. I am, and I’m happy to talk about it. It’s truly mindblowing. It’s awful, but there’s a strange glimmer of hope because maybe she will outgrow it.
“I think it’s FPIES” our pediatrician said at the 6-month wellness visit. He asked me how solid food was going and I just replied “It’s not,” and laughed nervously. We had been through the wringer with a difficult pregnancy marked with lots of vomiting, strange problems and an infancy that was riddled with colic, non-existent sleep and profuse foul diapers. I just thought everyone’s experience was like that. At two months old, I took our daughter in to the pediatrician again because she screamed for three hours straight. She was covered in eczema. She was spitting up 5 or 6 times after every two- hour feeding. She couldn’t fall asleep (obviously) and I know what you’re thinking. You’re thinking what everyone was thinking. Babies are always hard. Babies never sleep. Babies spit up a lot. Babies have weird diapers. Babies cry. Yes, all that is true, but this was different and exponential in the nature of difficulty. I now have a name for it. It’s called FPIES. You pronounce it Eff Pies. The name is amusingly appropriate.
Around the 2-month mark, Georgia had several seizure-like events that I now know are called Sandifer’s syndrome. My husband called me home the first time I left the house to get a break. I was having dinner with friends and I still remember the panic in his voice and the painful cries of my daughter in the background. This was the hardest time, until the next time it was the hardest time, and the next after that. Sandifer’s syndrome is caused from excessive reflux that is so painful it makes infants writhe and jerk their heads back in seizure like movements. She was allergic to foods that I consumed and my breastmilk left her in pain. Around the same time, her stomach became grotesquely bloated and her belly button went from an innie to an outie almost overnight. That was an umbilical hernia, but it was protruding because of inflammation in her gastrointestinal tract. Terrified, I took her to the pediatrician and all I could say was “I know there’s something wrong, but I don’t know what it is.”Luckily he believed me the first time. Other FPIES families don’t always have the same luck.
We were initially diagnosed with cow’s milk protein allergy and I was instructed to cut dairy and soy out of my diet. After a few days with no improvement, I was radically in need of some help, so I switched her to Nutramigen formula and that worked wonders within 24 hours. Later we would lose this formula too, but at the time it was a life-saver. Some FPIES mothers drastically alter their diet to continue to nurse their babies. They lose so much weight that their own physicians worry about their health. Because any food can be an FPIES trigger and we have to eat multiple times every day the experience is like tiptoeing through a mine-field. I’m glad I tried the formula. I never would have been able to cut out all her trigger foods from my diet while breastfeeding. It took me over a year to find out that she could only eat eggs, broccoli, olive oil and salt, and the broccoli was an addition that came months after the other safe foods.
We wouldn’t hear about FPIES or have a true diagnosis for several more months. Some families don’t get a diagnosis for years. I felt strange when I first heard it. Eff pies? Hmm that sounds funny. It stands for Food Protein Induced Enterocolitis Syndrome. But to me, it stands for Food Poison is In Everything, Sweetheart.
My Georgia can’t eat most foods. You can’t tell by looking at her. People find out and the first thing they say is, “But she doesn’t look sick!” Yes, I know. She’s not malnourished. She’s smart, beautiful, kind, mischievous, compassionate, silly, defiant, delightful, wild and she’s perfect because she’s ours. We love her and her brother beyond measure. She looks healthy because I have figured out what doctors could not tell me. I have figured out her safes, as we like to say. I use the word I because my husband has been working hard at his job so we can afford her formula among other things. I handle the food trials and the doctor appointments. I keep the food diary. I shop for food- searching- always searching- for single ingredient items that might work for her. I rarely find them, and even when I do, she reacts and we clean up vomit for days. I research this FPIES mess. I read posts on an FPIES support group via social media where other brilliant men and women from all kinds of careers are also desperately trying to find their way through this diagnosis. I attempt to find medical journal articles and scour them for clues. I learn about non-western medicine ideas that might help. I am skeptical, but I am desperate. What I want so desperately are peer-reviewed research papers and clinical trials with FDA approved medications and other medical tests that might help us navigate this, or know when and if it will end.Instead I make pancakes from broccoli. I stand up straight and I go scramble another egg and make another bottle. My daughter is two, for crying out loud. I have cut eggs into bunnies and flowers and made as many things as I can think of with the ingredients we have. I FPIES mom so hard. You know it. I’m proud of it too, because there is never a break. There is never a time when I can just order some take-out and relax. But I am strong. I am an FPIES parent. It’s a title I never wanted, but I have earned my stripes with blood, sweat, lots of dirty spatulas and tears. As an FPIES parent you quickly learn that YOU are the ONLY ONE who can keep your child safe, or advocate appropriately for your child’s medical needs.It’s both a burden and a superpower, but it is always earned the hard way.
We purchase copious amounts of a special elemental formula for which our insurance company denied coverage “because it isn’t administered through a feeding tube.” Let me assure you, that formula is medically necessary for our daughter’s life and health. It costs us thousands of dollars a year and I am grateful that we can afford to buy it for her without going into debt. I am angry that our insurance has failed us in that manner. Having a disease should not dictate whether or not you can properly save for college, prepare for retirement or afford quality childcare. But it does for many families. We are lucky we can make it work as well as we can.
Usually the next question we get is a disbelief of “How did you know?” It wasn’t easy, but every time we fed our daughter, she got sick—really sick. She got so sick that she was vomiting and dry heaving for DAYS. My super active giggly mischievous baby would lay on the carpet in our bedroom lethargic with her face down on the Fisher Price playmat. “It’s just a virus,” they told us at the pediatrician’s office when we brought her in three times one week. “It’s probably not over yet. I can hear gurgling noises with the stethoscope.”
It wasn’t over by a long shot. I told the doctor (who was not our regular pediatrician) that I thought it was sweet potatoes or oatmeal cereal because it happened when we fed her. “No, an allergic reaction to food doesn’t look like that,” this doctor said. My mama instinct knew better. I stopped all food. I offered her the hypoallergenic formula and poof, my child stopped dry heaving and vomiting. Her rash cleared too. I had to test my hypothesis. Reluctantly, I gave her a single miniscule bite of oatmeal cereal and within 24 hours, she was projectile vomiting again and we were changing diapers, cleaning the floor and doing mountains of laundry for days. Life was so heavy I felt like I couldn’t breathe, much less get out of the house without tremendous effort. “Is motherhood really this hard?” I wondered.
It’s a cruel diagnosis attached to a strange tiny glimmer of hope that may or may not magically happen for my daughter. I cling to that hope with all that I have because like any parent I want a life for my children that is free from the burden of a chronic disease. I want a fairytale ending to this tragedy. I want to buy my girl a Starbucks drink of her choice one day when she’s old enough for coffee and look back and think to myself. “Thank God that’s over.” For now, I bury most of our troubles deep in my heart and repeat this script fairly frequently: “It’s okay. We’re doing okay. I have learned how to navigate this and maybe she will outgrow it.” These words are true, and our lives are good and full of joy much of the time. But things could be a lot easier. I say those words to people I meet who have offered something like a lollipop or a popsicle to my child that I now have to turn down for her safety.
When I explain her diagnosis lots of people say “Well she’s so little, maybe she doesn’t know any better. Maybe she won’t remember it.” Trust me. My child knows. Every single day my sweet, smart daughter watches her whole family sit down with plates of food that have the colors of the rainbow- red bell peppers on a green salad, yummy macaroni and cheese, plump purple grapes and juicy blueberries. Sometimes birthday cake. Sometimes chocolate Easter eggs wrapped in shiny pastel foil. Holidays are hard. My child knows.
She looks at her plate with eggs and broccoli and she lowers her pretty little toddler eyelashes. Her body sinks into her high-chair. She knows. Then she points to food she can’t enjoy as she perks back up and says gently “Miles eat dat.” She is happy that her brother can have it, even when she is denied much of the pleasure of everyday life. My word, she is generous. This isn’t right. This is terrible. This isn’t the life I want for her. I hold it together and try to keep the focus off the food and distract her with conversation and silliness when all I want to do is give it all to her- Let her taste it- Or cry. This just isn’t right. There is no end in sight. It feels like we are drowning. “It’s okay,” I tell myself. Maybe she will outgrow it.
My heart aches every day with a strange pain that I can’t describe very well. Then I feel tremendous guilt because yes, it could always be worse and “maybe she will outgrow it.”I have lightly comforted strangers with my words and my smile when my soul was cringing because my child is sick and nobody can help me figure out how to make it better or even keep her safe. Somewhere I read another FPIES mother’s account of what life was like at this phase. She said “It is hard to put into words how difficult it is to have a child who is allergic to most food.” I agree with her. I have done the research. I have read everything I could get my hands on. I know many children outgrow FPIES—In fact most outgrow this. But more than anyone else, I also know that there are children that do not outgrow this disease. I know this because I hear their stories too. My daughter has a severe case of FPIES illustrated by the fact that at age two, she can only eat four ingredients. I want so badly for us to be in that percentage that outgrows it, but our case doesn’t always look like the other cases and I worry constantly.
Who wouldn’t? Even after people started to realize that I wasn’t just an overreacting mama bear--even after they started to believe that my child couldn’t tolerate my breastmilk or baby cereal or compounded Tylenol for teething or antibiotics or even a fraction of a cooked spinach leaf pureed and scrambled into her eggs- Even after they started to believe me at the doctor’s offices- I still realize that the science to help my child does not exist.
I want my daughter to enjoy the simple pleasure of a North Carolina tomato sandwich on kid-friendly Sunbeam bread with the crusts cut off. I want her to know it tastes even better by a swimming pool and magnitudes better when you call it by its true name, ‘mater sandwich. I want to offer her a taste of the creamy pimento cheese that her grandparents sold at their grocery store for 35 years before she was born. Never mind that she might call it “yucky.” Even that would bring me joy. I want the luxury of being able to offer her food from my dinner plate or to go out to eat and have her order off the menu. You mean to tell me some people get to go out to eat and don’t have to pack special food for their children? I want that. I want her to be able to bite a juicy red strawberry from Rudd farm out on Hicone Road. I want to host a cookie decorating party like my mother did for the neighborhood posse of children. I want to give her a popsicle that isn’t just plain ice, again.
I would have LOVED to pass her a handful of toddler puffs, Cheerios or quartered grapes to entertain her as she sat in the highchair while I cooked a healthy family supper. Instead I entertained her in other ways, mostly by holding her while I did all the things.
I had to keep her away from the dried bean sensory bin I made for our son before I understood the wrath of FPIES. I had to hold her, wiggling and squirming, all the time to keep her away from the crumbs on the floor at playdates and the broken goldfish on the ground at the park that might poison her body. My daughter did not want to be held. She wanted freedom to play. She fought me from holding her all the time. I could never let my guard down because those insignificant crumbs littered by other innocent toddlers really could hurt her.
Speaking of crumbs, I’d really love to be able to make some kind of bread for her. Do you know the cloud bread recipe floating around Pinterest? Yes, I’d like to cook that, or maybe something with almond flour or quinoa. We failed those foods too. In my wildest dreams I’d like to be able to feed my child a birthday cake. I’m not even talking about a cake with all normal ingredients like butter, flour and Dixie Crystal sugar. That might be too much to hope for. A homemade slightly lopsided cake I make with alternative flours, some kind of sweetener and coconut icing would flip my joy scales and hers to the max. Is that too much to ask? Maybe she will outgrow it.
Instead, for her birthday cake I painted a hat box and put a plastic toy inside. She loved it, but she also watched her older brother eat cake. You see, this diagnosis means that most food gives my daughter a delayed allergic reaction that doesn’t look like the allergic reactions we are used to. It might take 2 hours or a month for the trigger food to start inflaming her intestinal tract. By a month in I mistakenly thought many foods were safe. Our pediatric allergist and immunologist who works with a significant population of FPIES patients advised me to try a food for 4 days and if she seemed fine, the food was probably safe. That wasn’t true for us. Physicians don’t have the information they need because this disease hasn’t even been characterized to understand the full spectrum of the disorder.
If I don’t find and stop the poison masquerading as my homemade apple sauce, Georgia could vomit to shock with repeat exposure. For us, repeat exposures escalate in severity. Every single time I try an ingredient, it gets worse and worse. Some FPIES specialists tell parents to push through symptoms. Some don’t even believe in the existence of this disease or in the various presentations of it. Believe me, it’s real. We have tried over 40 foods in the past year and a half. There are 52 weeks in a year. You do the math. FPIES looks like a stomach virus that spans years, not weeks. Years. None of our food trials were safe for her except eggs, salt, olive oil, and broccoli. Following the advice of our specialists made my child sicker. I can’t blame them. They don’t know how to help either. The science doesn’t exist yet.
The foods I have trialed are healthy and simple. They are foods like apples, grapes, quinoa, coconut, avocado, banana, corn, rice, potato, pear, spinach, cauliflower, strawberries, watermelon, cantaloupe, green beans, carrots, rice, mangoes, and broccolini. I have not found a single grain or fruit she can enjoy. We get excited. We try a food. She loves it. Her symptoms begin. We try to keep going. We fail. We clean up. We rest. She begs for the food we can’t give her. We do it all again. Now I am just tired and frustrated. What I wouldn’t give for a medical test to identify a few more ingredients to feed my baby. My God I have tried so hard.
One time I used pink Himalayan salt on her food instead of the regular corn-free salt that I purchased. I did it intentionally because her salt is non-iodized and I know iodine is essential for health in trace amounts. I worry about her nutrition all the time, so this is a normal thought for me. I sprinkled some pink Himalayan salt on her eggs. The vomiting started that night. Did she get something by accident? Did I use a different brand of eggs? Does that matter? Did she eat a crumb off the floor? Did I use the bagged frozen broccoli instead of the fresh broccoli today? Does that matter? Did she get a piece of cat food again? (Yes, this happens) I figured it out. The vomiting stopped. Another time I bought the wrong brand of olive oil in a pinch at the grocery store. It was blended with a cheaper kind of oil. Vomiting. You can’t fool my girl. She’s more sensitive than the princess and the pea.
Last year we took the minivan to Hanging Rock, Tweetsie Railroad, and the beach. They’re joyful times. I post happy pictures. We legitimately have a blast. But every time we eat in the car, I hand my son a chicken nugget and I forget to clean my hands thoroughly enough. Then I touch my daughter’s food without thinking, handing it back to her in the car-seat. Two hours later she projectile vomits in the car. The only reason I know what triggers this is because it happened to us so many times that I finally put the pieces together. Now here comes the fun part for FPIES parents. Was it the flour, the chicken, the oil it was fried in? Was it some additive? Welcome to the FPIES game! The only way to know what triggered it is to eventually pick one of these things, feed it to her and wait. No thank you.
Now we use a fork to feed her in the car. She pulls the food off the fork and throws it on the floor. It is another kind of game. Over and over I throw away the food we carefully make for her because she contaminates it. We make more safe food. She eats some of it but she is tired of eggs and broccoli. My house smells like broccoli and hard-boiled eggs all the time. Yummy. My daughter likes to smear the egg yolks onto things. Things like carpet and upholstery. I get frustrated. I clean it up. Again. Why is it so hard? I wish I could give her some Cheerios. This is what an FPIES diagnosis looks like.
So why am I revealing our struggles? After all, there are much worse things than FPIES and sincerely, I know it. My life is wonderful and I am content. Do I want pity or attention? No. Do I need encouragement? No, but I am seriously grateful for all the help and kindness we have received in relation to this diagnosis. I am intensely proud of how we have handled this hard thing. I was strong before I became a mother, but now I know the depths of what I will do to care for my children. I bet you know those depths too because you have your own struggles.
This post is about sharing our story in the hopes that we can make it better for those that come after us on this slog through an FPIES diagnosis. The words that I have both loathed and clung to over the past two years are “Maybe she will outgrow it.” But now I am tired of hearing that because it means that nobody knows how to help us. Coming from physicians, it means there’s hope but there’s nothing else we can do for you at this time. That’s not good enough for my Georgia or any of these children.
If the resources don’t exist, let’s build them. Hope is a powerful thing, but actions speak louder than words and I am ready to act. Please help me. Please help us unravel this mysterious disease.
Come walk with us. Please donate. Your contribution can have a direct impact right now. Let me explain. FPIES research is scarce. We can make a difference simply with targeted funding and awareness. Here are my goals for the first Greensboro Walk for FPIES:
Fund research to:
Create an affordable and accessible test to identify safe foods and trigger foods.
Identify the root cause of FPIES. Is it genetic? Is it environmental? Is it both?
Characterize the disease in its entirety so that physicians may have a set of solid guidelines to help patients navigate food trials.
Raise awareness by:
Educating physicians so that they know how to identify FPIES before months or years have gone by without answers.
Ensuring that future families with FPIES don’t feel so helpless and alone in this journey.
Helping local and regional FPIES families find each other because we desperately need each other to feel whole and sane.
I believe we will continue to see this disease grow in scope. Just this year, the International FPIES Association announced findings that FPIES is no longer as rare as previously thought. A large national allergy study found an FPIES diagnosis in 0.5% of the population. This research places the estimate of U.S. people living with FPIES at one million. ONE MILLION!
I believe many more cases of FPIES are undiagnosed because FPIES has a spectrum of severity and is often outgrown before identification. Let me explain. My son suffered from this disease too, but was never diagnosed. As a first-time mom, I thought everyone’s child was just hard. Looking back now I see striking strange similarities between our son and our daughter. Our son had constant reflux, vomiting, gagging and trouble sleeping. He also couldn’t eat random foods and took eons longer to tolerate normal food than other children his age. Take peaches for example. They made him vomit, so we just avoided peaches. One time I made homemade veggie soup and pureed it for him to have in a pouch. I felt like a champion mother! Right? Wrong- He vomited. We all just thought he was getting sick and we made some jokes about my cooking, but he was fine the next day. I know that he reacted to something in the soup. It wasn’t my cooking. It was FPIES. He outgrew it around 1 and a half, but is occasionally sent home from preschool for unexplained vomiting that has not always been related to a stomach virus. How did we know? Nobody else ever got the virus, including children in his classroom. Even though he has largely outgrown this disease he still has strange stomach pains and symptoms that no one can explain-including an irrational fear of food.
The most reputable organization that is supporting FPIES research is the International FPIES Association. I am raising money for them because their work directly supports medical reserach to advance our understanding of FPIES. On Sunday, July 28, from 3-5pm my family and I are hosting a fundraiser walk at Country Park in Greensboro, N.C. We invite everyone to come rally around our children and other FPIES families to fight this disease.
To join the walk, we have a suggested donation of $25 per person but any donation amount is greatly appreciated. If all you can donate is a hug, you are most welcome too. Wear teal to show your support of children with FPIES, or better yet, purchase an FPIES t-shirt for the event. I’ll share links as soon as the design is finalized.
I will donate one of my oil paintings to the cause as well. If you donate at least $5, I will enter your name into the drawing. If you donate more, I will enter your name into the drawing for every $5 increment of your donation. You do not have to be present to win, but you do need to be able to pick up the painting or cover shipping costs.
“Maybe she will grow out of it” just isn’t good enough for these children. Let’s do something about that. Let’s fund the research right now.