No Allergies...FPIES?

Pin It Well, we know what it is NOT:

After a lot of poking, prodding, and scribbling on her back today at the allergist, we know Kate is NOT allergic to: Rice, Oats, Wheat, Barley, Carrots, or Sweet Potatoes.

Since four months old and her first taste of cereal, Kate has not been able to eat ANY type of cereal.

It isn't a texture thing,

it isn't a consistency thing,

it isn't a taste thing:

she gobbles it all up with a big goofy grin on her face.

Everything is completely normal until about 90 minutes later when she vomits EVERYTHING she has eaten for the entire day. She then can't keep anything else down except Pedialyte for the remainder of the day.

Rice, Oats, Barley, Mixed grain...it's all the same.

Mixed with breast milk, mixed with water, mixed with veggies...it's all the same.
2 tablespoons or 1 teaspoon...it's all the same.

Hot, cold, warm...it's all the same.

Her little tummy just can't tolerate it. After a trip to the allergist today (and $200 later) we determined what I had already suspected: she is not allergic, she just has an intollerence to certain foods. I am NOT one of those moms that likes to research and self-diagnose via the internet. I would rather go by the word of the trusted professionals in the medical field than grapple with the variety of opinions and sometimes well meaning but uneducated guesses out there, but in this case, I have. I found a rare diagnosis called FPIES (Food Protein Induced Enterocolitis Syndrome). Both my pediatrician and allergist agree this is probably her diagnosis. Basically, her body can not digest certain food proteins. They are hesitant to label her with this yet, because she hasn't had anything with milk or soy (she is still exclusively breast-fed) and milk/soy is the typical trigger food for FPIES.

The bad news:

• There is no medical test that can be performed to determine for sure what the true issue is
• There is no medication or treatment other than avoiding her "trigger" foods (anything that causes the vomiting)
• we won't know what foods are "trigger" foods until we give them to her
• So far, she has an intolerance to rice, oats, barley, and wheat
• If she has an intolerance to milk and soy also, getting her the proper nutrients after she stops breast-feeding will be a HUGE challenge

The good news:

• She doesn't have an allergy which means that we hopefully will not have to worry about long-term issues
• FPIES usually resolves itself at about 1.5 to 3 years of age
• She has been able to eat all the fruits and vegetables we have fed her so far
• She's growing and perfectly normal with this exception.

Here are some great links that I found in my online research that I feel (as well as my Pediatrician) are trusted resources:

A Study from the Pediatrics Journal

KFA (Kids with Food Allergies)

Having kids is certainly a journey! I have often heard the phrase, "children don't come with how-to manuals." I have never felt this to be more true than today. I know that if we just take it one day at a time, give our little ones to the Lord each day, and do our very best with the knowledge He has given us, they'll be just fine.