What I Want You To Know About Why My Son Can’t Eat- FPIES

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 1 and part 2 of their story as well.

Carrie and Echo FPIES

Shortly after birth, my sweet little boy, Echo, had a stroke. We struggled to breastfeed and I ended up exclusively pumping for him. But that was hardly the extend of his feeding difficulties. You see, my son can’t eat. For a while there he couldn’t eat anything, now he has a few safe foods. But he still really can’t eat. He’s 16 months old.

My son’s name is Echo and he has FPIES.

What is FPIES? According to The FPIES Foundation:

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.  Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food.  Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.

I will tell you this: I’m a fierce mama bear. I will not let my son be defined by a stroke or FPIES or anything else over which he has no control.  He is a strong, charismatic, people-loving, joyful being. He walks confidently into a room full of strangers, waving and smiling as though the world has been expecting him all along, and is ready to receive him. He is so much more than a diagnosis or cluster of symptoms. Echo is pure light. We do our best to make the world safe for him. Sometimes we fail. With every trip we’ve taken and guest we’ve hosted, Echo has experienced acute reactions each time despite our vigilance. But we walk a very fine line between taking calculated chances and raising Echo in a bubble.

This. This new normal. Echo, at 16 months old, has two handfuls of safe foods and resists eating, all while laughing and giving kisses and shaking his head “no”.  Me? I’ve made peace with the pump. Peace with my life in this moment, with the ever-changing new normal. My son has one constant and safe food source that he never turns down (mommy’s milk!), and it brings me great peace of mind. We’ve learned to keep participating in life, even when my mom innocently asks if there’s a mute button for the pump motor, or when Echo enthusiastically licks the trash can and we know we will be up all night.  I’ve learned I can do anything for ONE MORE DAY, which in this case adds up to almost 500 days. Especially if it’s for my son. I’m grateful and proud that my body still impossibly provides most of what Echo needs. The dark clouds of survival lift and retreat when I remember this: I am lucky to be his.

Echo FPIES I am the voice

Here are three things I want you to know from my experience:

  1. FPIES scary and effing HARD. Have you ever tried to keep a toddler from eating food? It’s impossible. And sad. And no matter how careful we are, Echo often manages to find something and then we hold our breath until we know he’s okay. Leaving the house is stressful, play dates are almost impossible, and no space (except ours) is safe for him. Leaving him with a sitter is always a test of faith and competence. Finances are continuously tight. As it turns out, shipping donor milk, taking the max dose of Domperidone, (which insurance does not cover), and keeping up with medical bills all require quite a bit of cash. Also, it really takes a toll on a marriage, even a solid, seasoned one. Many families don’t make it through these rigorous trials with chronically ill children intact, even with proper support. Try not to judge us when we all seem a little fragile.
  2. FPIES is exhausting. When Echo experiences a reaction, he is in continuous pain, nobody sleeps for two days, and we have to take extra care with him. It requires total gut rest and a diet of only precious breast milk for days. I hate that he suffers so much, and it takes us all about a week to fully recover. We get little sleep and even less respite. We are hyper-vigilant everywhere we go because food is, well…everywhere. So, if you see Lance or me getting hyped-up when Echo gets food on his finger or there are crumbs on the floor or freak out when you pull out the goldfish crackers, please don’t think we’re crazy. And please don’t take offense when we start cleaning up after your kid or respectfully wiping their hands and faces before they play with Echo.
  3. FPIES is a real thing, and it’s rare. I’m part of online support groups where moms have been diagnosed with Munchausen Syndrome when they take their very sick children into the ER after an especially bad reaction, and some parents have had their children taken away because the doctors don’t even know what FPIES is or believe the parents when they explain it. (The parents eventually get their kids back when the doctors and social workers see that the reactions happen no matter whose care the child is under.) Although I refuse to dwell in fear of this happening, it is still something that happens. And the only way it stops happening is if you guys know about FPIES.

 

For more information about FPIES, visit these websites:
The FPIES Foundation
http://fpiesfoundation.org/fpies-medical-literature

From the American Journal of Pediatrics: The Mother of All Food Allergies
http://www.jpeds.com/article/S0022-3476%2803%2900273-7/fulltext

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Comments

  1. Miranda Johnson says:

    It is so hard. We didn’t understand about the reaction until we introduced our little girl to food at 5 months. She had had digestive problems from severe reflux to horrible diapers since birth, but nothing that I thought of worked to make her better. Once we introduced solids, we thought it would get better…but she was allergic to baby food. All cereals caused a reaction, and fruits and vegetables made her break out so bad. This was almost 5 years ago, and while she doesn’t suffer from the debilitating vomiting, she still has very bad days when she eats something or when something has been contaminated with her trigger food…which now is down to wheat and dairy and soy. You can do this!! You are so not crazy for doing all you can to keep your precious one safe. I didn’t leave my little girl with a baby sitter until she was almost 3, because I didn’t trust anyone to watch for her as well as we would. You got this, Momma, and soon, he’ll understand that he can’t eat those foods, and your job will be a little less overwhelming!

  2. … Wow…

    Thank you for sharing this, I cannot imagine how intense all of this must be. Lucky Echo to still be able to have mummy milk! I hope he grows out of it. Best of luck and lots of strength!

  3. Thank you for sharing. People think I’m crazy or insulting all the time. Play dates are so hard. I have a 2.5 year old with no health problems and my 13 month old has a serious heart condition and FPIES as well as some normal food and drug allergies. Her FPIES triggers are up to rice, wheat, oats, barley and corn. I admit Im too scared to try more things. It’s hard on us and our older daughter because she wants to share with her sister. And man being on the lookout for crumbs and snacks everywhere in the world is exhausting.

  4. I didn’t know what FPIES was until I had a girl in my preschool class with the condition. Her mom was super helpful in explaining what was safe/unsafe for her to eat, and in addition to my own research, we worked out a safe environment for her. At four years old, she was quite aware of her condition and what was safe and not safe for her, which is why her mom waited until preschool to bring her into a daycare situation. Fortunately, by that time they had also worked out most of her triggers, so she had many safe foods and was able to join in on cooking/food activities in the class, and we made the necessary adjustments to safe foods when needed.

    You can do it! Continue to spread the word about this condition, you’re doing a great job, momma!

  5. I grew up with terrible asthma and food allergies. I can’t count the number of times I heard someone give my parents a hard time about over protecting me. I’m eternally grateful for the patience they had with me while also dealing with my older brother who developed Kawasaki disease and was going through rigorous physical therapy. I vividly remember getting violently ill and having an asthma attack because a church leader gave all the children peanut butter cookies and being a five-year old who loved sweets just eating it up before realizing something was wrong. Now that I’m a mom myself I’m so very careful with what I give my son even though he shows no sign of allergies or illness. Thank you for sharing your journey with the world. Also a good time to remind anyone who plans on passing out candy on halloween that non food treat options are great to have on hand as well!

  6. Wow, what a story. I love that you have such a dedicated tribe surrounding and supporting you. Even so, it must feel nearly impossible. You’re amazing.
    I’m sure you’ve gotten lots of advice from friends and strangers, so forgive me if this is unwelcome, but I wonder if you’ve looked into bioenergetic intolerance elimination (BIE)/bioenergetic sensitivity and enzyme therapy (BioSET).
    Grace to you and your family.

  7. Deb Grayden-Morrone says:

    I couldn’t help but see similiarities in your experience with our experience with our daughter, now 5 years old. Stroke in utero or at birth with the same apneic seizures. Then subsequently allergic to MOST foods. Coincidence? I would love to talk if you have the time/ interest / energy.

    Either way, thank you for sharing and best to you and your little guy.

  8. What a great article. My daughters now 5 and 1 both have FPIES. Back in 2009 when my FPIES parenting journey started it was a horrible blur of bloody vomit & poop and ICU stays. We’re now on the other side of all that and while she’s dependent on medical formula and a G tube she’s thriving. We don’t know if she’ll ever have enough safe foods to have a complete diet. Then her sister was born we hoped for the best and I think even with an FPIES DX it wasn’t nearly as scary the second time around. I guess you could say we’re seasoned pros.

    FPIES is hard – when your kiddo reacts to oats and dairy and every play ground seems to be covered in Cheerios and goldfish. Not to mention with my 5 year old’s autism and my younger daughter being newly one neither can protect themselves from the danger of food traces.

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