Our Slice of FPIES

We have had quite a few questions lately from darling friends and family members wanting to know how Mallie Lynn is doing regarding FPIES.  Here is a brief synopsis. 

We are so blessed to have this little munchkin in our life.  She is a sweet soul, bursting with excitement, and always on the search for a good dose of happy.  She takes quite well to having an older brother and finds his squeezey hugs, gentle tackles, and pats on the head to be a delight.
Our slice of FPIES has taken us on a mental and emotional roller coaster over the past few weeks.  We were fooled into thinking we may have found our sweet spot after going on vacation and having a great week.  However less than 48 hrs after being home we were back to night screams, explosive diapers and blood in her stools.  I searched for answers as I looked back at my food journal and thought about what I had eaten on vacation.  I felt that grain may be the culprit since I immediately came back and had farro for breakfast.  Or was it the wheat tortilla I ate?  No she's had good days after I ate that, Was it quinoa?  Maybe, but we've had good days on that too.  Maybe the coconut milk?  Aahhhhhhhhhhhh    Maybe she just likes salty air? Everything seemed like a suspect.
So here we sit, 8 months and still reacting to foods through breast milk and not yet a safe solid food. 
Sick of second guessing everything and already on a fairly limited diet. (No : dairy, soy, rice, oats, eggs, sweet potato, green beans, peas,  chicken, squash, and barley)  I decided to make a change.  This has felt a lot like a science experiment at times and with any good experiment you need a controlled variable.  Enter the elimination diet.  After spending a few hours looking up foods with the highest FPIES pass rate along with nutritional values and what I had eaten over vacation, I came up with a list consisting of : grass fed lamb, brussel sprouts, spinach, white potato, cauliflower, asparagus, pineapple, cucumber, grapefruit, apple, banana, strawberries, nuts, olive oil.
This began our new journey on a total elimination diet.  It gave us good nights, and bad nights, but overall inconsistent diapers with some being mucus, jelly, and acidic while some showed signs of normal.  We had one diaper that looked, smelled, and felt like GOOD and Healthy baby poo!!!  We were so excited and hopeful I literally cried over this diaper!  "This is it!" I thought, "we have hit baseline!"  Then came a few bad nights, and bad diapers in a row (screaming and held for hours) So I took my issues to my discussion board.  Up and down went the rollercoaster ride.  I was told to try and take out nuts.  Many people had seen success in finding baseline by eliminating nuts even though that is more typically an IgE allergy trigger.  So bye bye, almond milk, walnuts, and peanut butter......hello feeling a little more hungry and piling cauliflower a mile high on my plate. I also discovered one more name for soy that had been hiding in my shampoo, face wash, and hand soaps so I searched high and low to find a new all natural replacement that was soy free.  (this is how I spend my free time)  If you see me spending 30 minutes flipping over bottles in the face wash isle please know that it's not because I'm picky about moisturizers.  We stayed the course for another week before having two nights in a row of night screams, gas, explosive diapers and I decided I had had enough.  I had hit an emotional and mental wall I couldn't climb over.  Tired...........................and tired of second guessing every little thing I eat, touch, or smell I threw in the towel and decided we had to try an elemental formula.
The fear of what might happen plus the nutritional value of the extremely elemental formulas had kept me on the road of exclusively breast feeding.  Most FPIES kids don't react through breast milk, and those that due are often not able to handle formula.  What we were doing hadn't been working either so what was the difference? 
We began by mixing the formula and breastmilk in bottles.  She didn't exactly devour it (this stuff is pretty smelly and nasty) but when she was hungry she would eat it.  Day 2 rolled around and she took it like a champ, eating up to 6 oz of formula and acting fine.  Then the night hit and all of a sudden she decided she was on strike.  For the next 38 hours she wanted NOTHING to do with a bottle.  I had decided not to nurse her for fear of confusing her and thought the tried and true "a baby won't starve itself would ring true".  But in 38 hrs the only thing we could get down her was 4oz.  I tried, her daddy tried, her Gran tried but the moment the bottle got near her mouth she screamed till she was choking.  So we learned we have a strong willed gal on our hands.  She had two good bowel movements on the formula and I wanted to push forward but when 13 hrs went by without a wet diaper and the previous "wets" had been more like damp I caved for fear of dehydration.  At 3am, after lots of screaming, I nursed her and back to total elimination diet we went.  I was happy to know that her body seemed to take the formula well other than being constipated.  So at the very least we know we have that. 
Feeling a bit defeated I again searched for answers online and through support groups.  Our conclusion is this.  Baseline looks different for everyone and whether it looks pretty or not we have one and it involves chronic GI issues.  So we will keep moving forward on this diet and start the introduction of solids.  We will begin with foods currently in my diet or those that are high on the FPIES pass rate list.  If she gains a food, then so do I, if she loses a food then I do as well.  We will look for any reactor signs and pray that none of them give us a trip to the hospital.  (a fear I try not to let creep into my mind)
We are in the middle of trialing apple, have no reactions other than skin  but she is not necessarily interested in eating it either.  She has become constipated but we are increasing liquids in hopes that this will subside.  Our next food to trial will be pear.  Fingers crossed and hands folded in prayer that over the next few weeks we will gain some safe foods, better sleep, and better diapers.  I also plan to sneak in the formula slowly in hopes of making a transition at some point.
We are awaiting a long anticipated appointment to see an EOE specialist at Cincinnati Children's in mid July.  Finding a doctor who understands FPIES, let alone chronic FPIES is a bit like searching for a unicorn, but supposedly Dr. Mukkada is just that.
We are thankful each day that this smart, sweet baby girl is ours.  Her bright smile, sweet hands, and rapidly growing personality are a reminder of our blessings each day.