FPIES: A Tentative Diagnosis

Dr. Cecilia listening to her baby's bowel sounds

At the beginning of May, I met with a new allergist for Cecilia.  Dr. Casper was recommended by a lot of people in some FB groups of which I am a part, and I was not disappointed.  He really listened to me, looked through pictures of Cecilia's rashes, took notes, asked questions, and validated many of my suspicions about unsafe foods following the skin prick test.  He even gave me his e-mail address at the end of the appointment and told me I could message him if I wanted him to look at a rash picture or had a question.

I could not get a good pic of her skin prick test.  Here is a portion of her back.
The large hive to the right of the #1 is her reaction to mustard.  It was her worst one.
Almond was the next biggest with all others being tiny.

When Dr. Casper was talking to me after the test, he was talking about some different types of allergy responses in the body.  He mentioned we could be dealing with Food Protein Induced Enterocolitis Syndrome, or FPIES for short.  To be honest, I brushed this idea off because I knew FPIES to be a delayed food reaction in which the child vomits profusely sometimes to the point of shock, and Cecilia definitely never experienced this.

When J saw the list of foods I needed to avoid, he said, "What are you going to eat now?"  I really wasn't sure, but I knew I felt renewed energy because I had a guide.  I eliminated these things and saw improvements in Cecilia.  Her skin was less rashy, and she seemed less gassy.  Four days after testing, I gave Cecilia a small slice of peach because I wasn't convinced that she wasn't allergic, despite the skin prick test saying otherwise.  Sure enough, she immediately got hives on her face.  The next week, I wanted to test out apricots.  I had a baby food pouch that was apricots, carrots, and pears.  I knew pears were safe, and I thought carrots were probably benign.  Cecilia immediately got hives on her face after eating nearly the whole 3.4 oz pouch.  Add apricots to the unsafe list!

It was hard to get a good picture, but you can see
a few hives from the apricots.

The morning after eating this baby food pouch, Cecilia woke very early.  She was incredibly clingy and fussy, which I assumed was because she was still tired.  I didn't know what was wrong, but I knew she was driving me crazy.  She wouldn't eat, wouldn't sleep, and wouldn't play; she just wanted to nurse constantly and threw major fits. I thought maybe her teeth were bothering her and may have given her some ibuprofen.  Then she pooped and seemed to feel better.  Just before we were leaving to go to the store, she pooped again.  Twice in one day is unusual for her but not unheard of.  I thought for sure she'd be doing great at the store now. She always hates being confined in the shopping cart, so her fussing in the cart wasn't out of the ordinary.  Not too long into our shopping trip, she started grunting and making a funny face.  Then she said "poop", and I knew I needed to get her out to let her poop.  She went over to the shelf, squatted, and pooped.  At this point, I was praying I had enough wipes because I hadn't refilled them in awhile; she rarely poops in public.  Let's just say it was a disgusting diarrhea mess that required a change of clothes for Cecilia.  There was visible blood and mucus present, and her whole bottom was bright red.  She was in a great mood following this epic bowel movement!  She went on to have another diarrhea poop when we got home, which leads me to think she was potentially having a reaction to the carrots in that baby food pouch.  Looking back at earlier poop pictures when she was an infant (yes, I have many, many poop pictures) confirm this suspicion as there are pictures of a diaper filled with carrot chunks and bloody mucus.  I guess back then I was looking at things in my diet that are considered top allergens.  I wasn't looking at carrots!!

How does all of this matter?  Well, after a couple more similar reactions with other foods, I sought out more information on FPIES.  I read that there are two classifications - acute and chronic.  Acute reactions involve delayed onset vomiting and/or diarrhea after ingesting an allergen.  Chronic reactions can include sleeplessness, agitation, excessive gas, skin rashes, reflux, hiccups, and mucousy/bloody stools.  I almost started crying because Cecilia had every single chronic symptom.  I always thought her frequent hiccups were strange.  I even asked my friends how often their kids got hiccups, and they responded with very rarely.  Cecilia gets them nearly every day and sometimes twice a day.  I always thought it was reflux related.  Anyway, I sent her allergist an e-mail telling him what I had discovered and sharing a recent reaction to oats (much the same as the carrots), and he urged me to see a GI to make sure we weren't missing anything.  He said many times FPIES is quite mild and chronic.

When I called to schedule with the GI doctor I wanted, I was informed that the earliest available appointment was in September.  There were some cancellations blocked out, so I had to leave a message for the doctor's personal scheduler.  She called me back within two hours and said "How about July 5th at 10 am at the Glendale office?"  Um, yes please!  The Glendale office is less than 15 minutes from my house, so that made the deal even sweeter.  I had many people praying for an earlier appointment and am still so thankful we didn't have to wait around.

Dr. Schroeder with Phoenix Children's Hospital was amazing!  She was very personable and seemed genuinely interested in helping us.  She asked questions, took a thorough history, looked at rash pictures on my phone, checked her weight and height measurements I brought in, and allowed me to ask questions.  Dr. Schroeder even looked at poop pictures!  She was also happy that I brought in Cecilia's poop from earlier in the morning, which she tested for blood twice.  It was thankfully negative.  That coupled with Cecilia's clear skin makes me feel we are on the right track diet wise.

Dr. Schroeder thinks Cecilia has chronic FPIES but said she can't say for certain until we scope her and take biopsies, which will happen 6-8 weeks from now.  She wants to rule out Eosinophilic Colitis, another allergy disorder.  Because my nephew Blake was just diagnosed with Eosinophilic Esophagitis (EoE), that is considered having a family history.  The doctor also said that because she is reacting to so many foods, it makes her wonder if there is something other than FPIES going on, since kids are often starting to outgrow their FPIES triggers now rather than gaining more.  She also said that chronic inflammation could make it look like a food is a problem when really the gut just hasn't healed.

We left the appointment with samples of various toddler formulas/nutritional drinks.  We need to trial these to see if we can get Cecilia to drink one to fill in some nutritional gaps and to make sure she has a good supplement if I am unable to continue breastfeeding.  It is something I can use to replace breastmilk or add into her diet in addition to breastmilk.  (So far, she tried chocolate flavored Neocate Junior and was not a fan.  She took two sips, made a funny face, and said "right here" as she placed her cup on the counter.  I thought it wasn't bad.)  Dr. Schroeder said to let her know which Cecilia prefers, and she will write her a prescription for it.  I wanted to laugh because I already know my insurance won't cover it (right Jill?!).  I will probably give them a call to see though since the cost of the formulas are so high.  We are also getting her a hypoallergenic multivitamin and calcium/vitamin d supplement, and she needs to be on an antacid until her scopes.  Reflux can cause an increase in eosinophils in the esophagus making it look like a person has an eosinophilic disorder, and the doctor doesn't want the scope to be skewed.  I wonder if the antacid will make her hiccups stop.  We also can't introduce any new foods until after the scope results.  This means we continue to eat pork, chicken, turkey, beef, grapes, potatoes (in various forms), kale, raspberries, bananas, olives, and coconut products.  Hey, at least I am back to prepregnancy weight now!

The good news is that FPIES is often outgrown by age three.  The bad news is that the only way to figure out what the triggers are is to feed the foods to your child and wait for a reaction.  Dr. Schroeder advised us to avoid milk, soy, rice, and oats until at least age 3; they are the most common FPIES triggers, and I know rice and oats are two of Cecilia's worst triggers.  Other common triggers are poultry, sweet potatoes, peas, and beans.  I think poultry is fine for us, but pinto beans and peas definitely aren't safe.  The jury is out on sweet potatoes for us.

Rash from pinto beans.  It was also on her belly, back, and thighs.
I won't share the poop pictures with blood streaks.

I am so thankful for a knowledgeable allergist and gastroenterologist, especially after Cecilia's first pediatrician and first allergist brushed off my concerns.  Oh, you don't care that my child is gagging and choking on her vomit?  Oh, I shouldn't consider allergy testing until age two, and seeing a GI would be worthless since they would give me the same advice you just did?  Oh, I should be happy that my child doesn't have any life threatening allergies?  Suuuuuure.  Thanks for nothing.  I just wish I had kept a detailed food log much sooner, but it was so difficult.  I also didn't know what to look for; I was always looking for typical IgE mediated responses like hives.  I din't know to record when she got hiccups.  I didn't know to record specific times to check for delayed reactions.  I thought her full body rash many, many months ago was from rolling in the grass; I didn't know it was probably from eating a lot of a trigger food over a couple of days.  Now I know what to look for, and I am on a mission to help Cecilia be comfortable and happy and to outgrow her FPIES triggers through food avoidance.