Wednesday, February 15, 2012

My Cutie Pie and FPIES

Cutie Pie is almost 7 months old.  Looks perfect in every way.  Chubby cheeks, pudgy thighs, and a Buddha belly.  You would never know that there was anything wrong with her.  Unless you were here on December 23, 2011.  That's when she had her first FPIES reaction.  Our first clue in a string of many that our perfect little girl was facing some challenges ahead of her. 

FPIES stands for Food-Protein Induced Enterocolitis.  I could go into a lot of detail about what it is, but I'll opt for the short version.  For us it means a lot of throwing up and not a lot of food options.  It means a million questions and not nearly enough answers.  It means getting more information from other moms who have been there, done that instead of the medical community.  It means many hours of rocking a screaming baby in the middle of the night.  It means crying at the grocery store because I'm wickedly tired and I don't know if Cutie Pie will *ever* get to eat an Oreo.  It means pages and pages of documentation about all her food input and all her output. 

Maybe I should start at the beginning.  December 23, 2011 Cutie Pie enjoyed a big heaping bowl of rice cereal mixed with a container of prunes.  All was great in the world.  Family was visiting for Christmas, presents were wrapped and under the tree.  About three hours later she started vomiting.  VIOLENTLY.  I have never in my life seen puke come out of a little baby so forcefully.  It would have been comical except that it wasn't.  It was scary.  After 30 minutes of continuous puking and a very frazzled phone call to the pediatrician Cutie Pie collapsed into a deep sleep.  When she woke up several hours later it was as if nothing had happened.  We brushed it off and went along with life. 

January 2, 2012 we were so excited to give Cutie Pie her first finger food - a Baby Mum Mum.  Her big brother had loved them as a baby and it seemed as if Cutie Pie would be no different.  She chowed down and gummed her way through it.  It was so much fun to watch her eat.  Until two hours later when the puking began again.  This time it continued for over an hour and she puked until there was nothing left.  Then she puked some more.  By the time the reaction stopped she was falling asleep between episodes and wasn't even lifting her head or fully waking up before vomiting again.  Had I figured out a way to get her to the ER without her choking on the bile she was expelling I would have.   Again she finally passed out and awoke hours later a happy normal baby.

That was when I began doing research and stumbled upon an FPIES support board on  The symptoms described Cutie Pie down to the last mucusy poop filled detail.  Every story I read was like reading about my own daughter.  It was then we started to suspect FPIES.  I started keeping a journal to detail our adventures in food.  Since I am still breastfeeding I have to monitor my own food intake as well as Cutie Pie's.  We also had her tested for "traditional" allergies.  Everything came back negative except for a moderate positive reaction to peanuts. 

Since then we have trialed a few foods, all of which have been given a big fat rejection letter by Cutie Pie's body.  Oatmeal led to green slimy mucus filled diapers (gross, I know).  Pears and prunes led to the horrible constipation that made Cutie Pie cry out in her sleep.  Strawberries were flat out rejected.   We also noticed a pattern of eczema flare-ups and bright red slapped looking cheeks when she was exposed to peas, onions, or chickpeas through my milk.  So far, she has NO foods that we can call safe.  So when most babies her age are expanding their palates, we are going back to only breastmilk.  It is the only thing she can tolerate. 

As of now we are officially undiagnosed, except by Dr. Google.  Our pediatrician has been very supportive and we have been in close contact with his office to track her symptoms.  Next week we have our first appointment with an allergist, and hopefully we will be able to get some more answers then. 

By far the worst part of FPIES is the fact there is nothing I can do for Cutie Pie.  No medicine will make it all better.  No medical test can give you a definitive diagnosis.  All you can do is avoid trigger foods, and when you don't know what exactly those trigger foods are it all ends up as a game of chance.  Maybe today she will be happy and comfortable.  Maybe today we will find a safe food.  Maybe today we will get some answers. 

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