Friday, November 5, 2010


Guest blogger Jen from Chapman Baby gives us the low down on FPIES

To begin with, it's pronounced PIES like apple PIES but you have to say the letter "F" first.

FPIES stands for Food Protein-Induced Enterocolitis Syndrome. The way I explain it is that my kid has food allergies similar in severity to one with a peanut allergy, except to almost everything that contains protein. The higher the protein content in a food, the more likely an FPIES child is to react. I say it that way because when people think of an allergy they think of a rash. Then they think that it might be ok if Bronsen just has a "little taste" of something he's not supposed to have because maybe then he won't even get a "rash." WRONG.

FPIES (so we are going to get all techical right now) is actually a non IgE mediated reaction in the gastrointestinal system to one or more "trigger" foods typically found in infants and young children.

Traslation = FPIES is not a regular food allergy, like when you go to the allergist and they prick your arm. It's not something treatable with Benadryl or an epipen. The only treatment is to discontinue trigger foods and get to the ER asap for IV fluids and an overall assessment.

FPIES reactions involve: vomiting, diarrhea (sometimes bloody or mucousy) and can eventually and quickly lead to lethargy, dehydration and shock. (Some children with FPIES have more symptoms that these listed.)

Translation = usually within 2 hours after the trigger food is consumed a child will start to present sypmtoms. It all happens very fast. Lots of vomiting and diarrhea quickly lead to dehydration.

So here's another deal. Kids with FPIES aren't any more likely to have regular food allergies than kids without FPIES. Strange but I think a lot of kids with FPIES do have regular food allergies as well as FPIES. FPIES is most often treated by an Allergist.

The major problem with FPIES is that it is so uncommon doctors aren't familiar with it. They aren't diagnosing it, they aren't researching it and so they
cannot find a cause/cure for it. There are only 200 children or less in the US who have FPIES.

Through GOOGLE and Facebook parents of FPIES children have begun coming together for support. It has been amazing. Finally, someone who knows what an FPIES parent goes through. Some children can't eat any food, some can have all but one thing. However, that one thing is usually either milk or soy. 50% of children with FPIES to soy will also have FPIES to milk and vice versa. These children are expected to outgrow FPIES but not until age 3-5.

There are no tests that can tell us exactly what an FPIES child cannot have. There is something called and ATP (Atopy Patch Testing) where a patch with certain foods in discs is placed on the childs back for 48 hours. When removed skin under can be red, bumpy or blistered as the result of a positive reaction to that food. For us the ATP testing has been successful, so far. Otherwise the only test is an oral food challenge.

My son was strictly fed breastmilk and fruit until 12 months, then we added a special formula because he started to lose weight. He did not eat any "real" food until 14 months of age.

I've learned alot about FPIES since my son was diagnosed at 10 weeks of age. He is now almost 3 and we are still avoiding milk and soy along with some veggies. her is 1of 200 children with FPIES in the US

Thanks Jen from Chapman Baby for giving us the low down on FPIES, and being a guest poster on Avoiding Milk Blog


Caryn said...

Thanks for this very informative posting. I had no idea that the condition existed. It is comforting to know that it can be outgrown. I am curious, can Jen give a quick listing of all the common foods with proteins in them that need to be avoided? Is the diet similar to one that parents of PKU kids use?

Bronsen's mommy said...

Wow, I am just now reading this. I am not familiar with PKU, although I know what it is. I can say the common foods to be avoided are milk, soy, rice, oat, wheat, barely. I hope this helps someone!