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.    
 

Food, Glorious Food!

A wise woman once said to a friend who then told me that she "eats to live rather than lives to eat."  At the time, being at least 30 pounds overweight, I didn't get this.  Oh I knew what it meant.  I just couldn't understand the discipline needed to live this way.  Many, many years later, I learned about eating healthy, but I still lived to eat much of the time.  During breakfast I was already thinking about what I was going to have for lunch.

When I became pregnant I didn't take that as a free for all time where I could eat whatever (well, I thought about it for a good, long minute).  I still tried to eat healthy, but I certainly didn't feel bad about that pizza or ice cream (or 50,000 egg and cheese sandwiches) I ate.  As a nursing mother, I figured I'd continue down the same path.  My lactation consultant said that I shouldn't have to modify my diet, as long as it was healthy.  My milk would become flavored by what I ate, and it would help G get used to different flavors.

I will never forget a difficult night around the time G was three weeks old.  She wouldn't stop crying.  She had a clean diaper and a full belly.  We were bouncing her and rocking her thinking she just needed to sleep.  I consulted The Baby Book by Dr. Sears.  It was kind of like our baby Bible early on.  When G started to toot, I consulted the section on gas.  J and I bicycled her legs and massaged her belly, and after awhile it seemed to help a bit.  This may have been the night I sent J out to get gas drops, but unfortunately they were fresh out.  He brought home some gripe water, so we gave it a shot.  I didn't notice that it helped in the least bit.

As I often do, I began researching what could be causing my daughter such discomfort.  She was crying out in her sleep, but not the usual sleep crying.  She was tossing her head back and forth and kicking her legs.  Pitiful little toots would escape her bum, and she would relax and go back to sleep.  This happened all night long every single night.  I should also mention that her poo was not that of typical breast fed babies.  This changed around the 6 or 7 week mark.  Instead of lovely mustardy-yellow poo we were getting slimy, green poo.    
   
 It turns out that the #1 culprit in all of this is cow's milk protein.  Apparently, babies often cannot digest the proteins until their gut is more developed.  No more milk for this mama.  That meant a lot more than just no milk.  It meant no ice cream, cheese, yogurt or anything made with whey, casein or at least 10 other milk based products that are in so many foods.  Though J was doubtful about this solution, he couldn't argue much when G got seemingly better after only three days of me being dairy free.  On the 4th day, I ate some ice cream.  I felt horrible for the pain I put my daughter through that night and the next day.  I knew I had to give up dairy, and I thought it would be the hardest thing.  It was until I discovered another food intolerance.  Corn.

Corn is in everything in some form.  It has been a nightmare trying to find ready made products or packaged foods that are corn free and dairy free.  After discovering a tree nut intolerance, I almost lost it.  I think eggs are okay, but the jury's still out on wheat.  I have my good days and my bad days with food.  I hate cooking, but now I hate it even more because I feel so limited.  I feel bad that J has to have such a limited variety of dinners because I just don't know what to make, and there is no way I have the time or the desire to make two separate meals.  We have spent so much money on food because all I can really eat is chicken, turkey, fruits, vegetables, rice and quinoa.  Produce is expensive, especially when it's organic!

My daughter's comfort and health have been well worth the dietary restrictions.  I keep reminding myself that this will be such a short period in time compared to the rest of our lives.  Two years will go by so quickly, and I may even be able to reintroduce some foods before G is weaned.  It has never been easier to pass up a slice of pizza or a trip to Cold Stone Creamery.  Going from making very few things completely from scratch to having to make most meals completely from scratch is quite a change (and a challenge with a baby to keep me busy).

I now fully understand eating to live and not living to eat.

p.s. J told me tonight that he is trying to break his chai latte habit, so we can put that money towards healthy foods for me.  That's altruism if I ever encountered it.