Day 2: Behind the black door ~ lurks FPIES

circle1It may come as no surprise, that things aren’t always what they seem. Much like my seemingly picture perfect door that I used for my 31 day button. I had to Photoshop {well picmonkey} the heck out of the smudge marks, and the flaws on the exterior walls of my entryway.

Like the doors and the walls leading into our house, the people living inside are not always as they appear either. No, I am not talking about me. Of course not. I am always as I appear. Disheveled and bitter during the day, completely relaxed and well put together at night.

You know what I am talking about moms.

I am referring to my son. Not a single person would ever look at him, and think that he has severe food allergies. But, he does.

He has, what is called, Food Protein-Induced Enterocolitis Syndrome (FPIES), which is an allergic reaction in the gastrointestinal system.

The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. About 75% will have acute episodes on diagnosis. The other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food (The International Association for Food Protein Enterocolitis (IAFFPE).

My son, Harlan, experiences more of the chronic symptoms such as, mucousy and/or bloody diarrhea, horrid diaper rash (like a chemical burn), colicky behavior, and interrupted sleep.

Throughout our FPIES journey, he has trialed 40+ different foods and has failed all but 12.

Currently, his only safe foods (ingredients really) are…

safe foods

Clearly, trying to find things for him to eat proves difficult. I don’t know what we would do if he couldn’t have his special hydrolyzed protein formula (Nutramigen). That is where he gets the bulk of his protein and fats from.

He sadly basically eats the exact same foods everyday, for every meal…
~homemade muffins that I make from a recipe I found and adapted.
~he eats a variety of, pear puree, spinach, broccoli, and mango, and sometimes with his favorite millet puffs. Millet puffs are so messy, that I limit his consumption due to unsightly mess he makes and rigorous clean-up.
~Cheecha Puffs have changed my life, as well as, Jenny-O turkey hotdogs, and
~In-N-out Burger’s French fries.
~he also eats a “millet mush” I concoct with hulled millet, pear puree, spinach, broccoli and mango (and sometimes Turkey hotdogs when I am feeling really crazy)
~homemade pancakes (a recipe I got from a fellow FPIES mom…thanks, Amity)
~and pear, watermelon or mango (or all three)

until (dun, dun, dun)…

last night, when the dollar store was out of Jenny-O hotdogs (seriously, I can’t believe I buy meat products at the dollar store).  I was forced to get creative (they are the only store I can find them at).

Harlan, has never liked ground turkey in any form (texture thing, I am guessing), and I have been wanting to try to find a meatloaf recipe using his limited ingredients.

After a cursory “Google” search, I came across this one that I could totally make work.

here is the final result

card

{print  it  ~ millet meatloaf}

 Good news, he LOVED it. He actually ate every last bite on his plate.
yum
Though I wish I could add a lucky “13” to the safe food list, this new recipe feels like a little victory!

I look forward to many more small victory’s with him.

He is a challenging boy, and he is lucky he is so stinkin’ adorable, or else he may have ended up on the front steps of our local fire station.

Kidding.

I think.

FPIES is just one of the many things we have ‘going on’ behind the black door.

Hope you follow along to find out more.

xoxo,
Magazine Mom

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4 thoughts on “Day 2: Behind the black door ~ lurks FPIES

  1. Wow, I had no idea about the challenges you have faced with Harlan’s allergy. CONGRATULATIONS on your victory! It is actually far from small! Keep at it hot mama and may you have many more:) xox

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