Monday, February 29, 2016

Julia Elise and FPIES

All of my kids have had interesting food "journeys" in their short little lives.  Olivia had infant reflux as a tiny baby.  She refused to nurse at first, and would scream for hours without being consoled.  She had slow weight gain, and finally was diagnosed with reflux when she was about eight weeks old.  After making significant changes to my diet, we were able to make things manageable for her, and finally got her to nurse well at around three months old.

When Levi was born, we were all delighted and relieved that he nursed well from the very beginning!  However, at around three weeks old, he too started showing signs of excessive fussiness/colicky behavior.  After consulting with the Pediatrician, we narrowed it down to a dairy sensitivity (thankfully not a dairy allergy, which is more serious).  Most babies have trouble breaking down the caseins (proteins) in dairy products, not necessarily the lactose (which is considered a lactose intolerance).  After eliminating dairy from my diet (going without cheese and butter . . . so hard!), I had a different baby!  He was happy and content most of the time, and I was happy to go without dairy for a short time for his comfort.  Thankfully, today he enjoys dairy products with no issues!  :)

Both of my older kiddos were completely uninterested in starting solid foods until they were about 9 months old, and could basically feed themselves.  When I excitedly offered them purees at 6 months, they both looked at me like I was trying to poison them.  While I really wasn't in a hurry to start them on solid foods, I would still daydream about the prospect of making all the different baby foods from scratch, freezing them in cute little batches, and feeding them to my babies who would dribble more down their chins than ingest.  Alas, it was not to be! 

Enter the third child!  Julia was by far my easiest baby in terms of nursing.  I really didn't have to have any dietary restrictions with her at all (beyond the obvious things), and she has been a happy, easy going baby who has made having babies look easy (okay, well, almost.  ;).  Just like with the other two, I offered her pureed avocado at around six months.  I thought, "this is it!  She'll be the one to enjoy baby food!"  She timidly gave it a taste at least, complete with adorable scowls and sour faces.  A few hours later, she became super fussy and clingy. Then she started spitting up quite a bit.  She had always been a spitter, so I really didn't think anything of it, and put her to bed - attributing the fussiness to teething or some other typical "baby" ailment.  About an hour after I put her to bed, I heard her wake up crying, and went in to check on her.  She was still sleeping, but had spit up again, and crawled out of the puddle in her crib mattress.  :(  I had to take her out, change her pajamas and crib sheets, and put her back to bed.  I really wasn't sure what to think!  Maybe, I thought, like the other kids, she just won't quite be "ready" until she's a little older.  So I waited a few months.  No hurry, I thought.

This time, we offered her banana.  She eagerly took it off the spoon, and was happy to have more!  I was so excited at how well she was doing, and cooed over how cute she was.  I was still a little gun shy after the avocado episode, however, so I kept her "meal" to just a few tablespoons.  Sure enough, a few hours later, the same scenario unfolded.  This time, my "mommy radar" was going off, and since Julia had her 9 month appointment a few days later, I discussed it with my Pediatrician.  She assured me that nutritionally, it wasn't essential for Julia to be on solids until around her first birthday, so not to worry.  She was thinking it was probably something that would require working with an occupational therapist (for trouble swallowing, texture/sensory processing disorder, etc) for a bit, and that it didn't sound too unusual.  She said that if Julia still wasn't eating anything well by 12 months, we would have a therapist watch her eat to try to narrow it down.  "Just wait a few more weeks, and try again."  

So we did!  Julia had gotten to the point that when she saw us sitting down at the table, she knew it meant food, and she would crawl over to me and want to be held out of curiosity.  Sometimes I would offer her a taste of what I was eating if it was "baby friendly", but most of the time she wouldn't eat it - she just wanted to see what we were doing!  This particular morning, I had made oatmeal for breakfast, and offered her a taste.  It was the tiniest bite!  But she of course, loved it.  Satisfied with her taste, she got back down and was playing happily.  About 3 hours later, during her morning nap, she began crying.  I went up to see what was wrong, and there was vomit. everywhere.

As Nate was home, I called for him to come up and help so that I could put Julia into the tub, and start changing her sheets.  My poor baby kept throwing up in the tub, to the point that I started to get concerned.  I scooped her out into a towel, and held her as she started vomiting stomach bile, and then her little body tensed as she started to dry heave.  She was lethargic and clingy the rest of the day.  Definitely not normal.  

I called my Pediatrician again, and she agreed that it wasn't normal, and referred us to a Pediatric GI Specialist at the University Children's Hospital.  Praise God that we live in such close proximity to some of the best health care in the state!!

We spent several hours with this specialist, and after doing some blood work, and talking over Julia's symptoms, she gave her the diagnosis of FPIES.  Food Protein Induced Enterocolitis Syndrome.  If you want the really detailed version of this disorder, click here.

Basically, it means kids with FPIES are allergic to, well, food!  Unlike other food allergies that can be tested for with skin "patch" testing, or treated with an epi-pen, FPIES only affects the gastrointestinal system.  Furthermore, any food can cause a reaction - even foods that wouldn't typically be considered "allergen" foods (I'm looking at you, oats!).  There are some common "trigger" foods, but no two kids are the same when it comes to what can cause a reaction.  Even in trace amounts, if the child ingests an offending food, it can cause a reaction.  However, FPIES reactions don't usually occur from breastmilk, which explains why we never noticed the symptoms until starting Julia on solids.

Because the symptoms agitate the GI system so severely, it can cause extreme dehydration, and cause the patient to actually go into shock, which is a life threatening condition (about 20% of the time in reactions).  Thankfully, by the grace of God, we never experienced anything so severe!  Unfortunately, we have no way of knowing what will become a "trigger" food for Julia until she's had a reaction.  The good news is (I am always so thankful for good news!), most children outgrow FPIES by about age three.  We just have to hang in there for a few years (Lord willing!).

You can imagine my blank stare as the doctor was explaining all of this to me - I mean, what do we feed her?!?  Also, because FPIES is such a rare disorder, there is very little information out there on how to live with it as opposed to say, Autism, or a peanut allergy.  After I stopped reeling from all the implications (no cake for her first birthday, watching her like a hawk to avoid a reaction from food dropped on the floor, etc), I am optimistic about going forward.  If anything, I am relieved that we found an answer to her symptoms so quickly, and without any serious episodes!  God has been merciful to us.

For now, we are just taking it very slowly.  Any new food must be introduced a week or two at a time, as reactions are typically delayed, not instant (again, unlike a typical "food allergy").  It also should be single ingredient type courses, as it will make it too difficult otherwise to pinpoint what cause a reaction.  We are praying for her safety and well being, and thankful that she is a happy, healthy girl who has continued to grow and thrive!  

Without writing a novel, that's FPIES in a nutshell.  I still have much to learn, but I wouldn't hesitate to answer any questions I can!  We would covet your prayers for Julia, and for us as we seek wisdom in how to care for her best, and that she will continue to be spared from any serious reactions.

We are super excited to celebrate her FIRST birthday in just a couple of weeks now, and enjoying her first steps, first words, and generally pretty much everything about her!  She is a sweet, vivacious girl and we are incredibly blessed to be her parents.


  1. Oh wow. Poor baby, poor Mommy! She's in great hands with you Amanda! I'm sure you will do an incredible job taking care of her. Prayers and love for your family :)

  2. Hi Amanda,
    I just came across your blog when I was searching FPIES. I have a 6.5 month old that I think also has FPIES and I'm trying to figure out how to proceed with starting solids. I live in Iowa City--do you mind sharing the name of the GI Specialist that you mentioned?
    Thank you and your children are beautiful :)

    1. Hi Heather! The Specialist we were referred to is named Dr. Aliye Uc (pronounced Ootz). We also have seen Dr. Diana Bayer, who handles food allergies. They are both at the U of I Children's Hospital clinics.

      It may be super helpful for you to keep a food journal- so you can monitor which foods you're trialing with your baby, as well as the quantity you gave, and the type of reaction (if any) along with the amount of time from ingestion to reaction.

      FPIES can seem really overwhelming initially, but not all kids have severe cases! I would check out this website:

      It has tons of useful information along with some of the common "trigger foods" listed. (Like sweet potatoes!).

      I hope that was helpful! I wish you and your baby the best!