Saturday, December 18, 2010

Diagnosis: FPIES, Part 1

I'm jumping into the middle of the story, and I'll try to fill in some of the past details someday, but this is where we are at right now.  My 8 month-old daughter (who will be known on this blog as Punky) has a food intolerance called FPIES.  It's not the same thing as a food allergy.

Food allergies are what my 2 1/2 year-old son (Boo) has.  We've been down a long, scary road with him so far, treating him for severe eczema as a baby, testing and discovering his allergy to milk, finding out after a severe reaction that he was also allergic to lentils and sesame.  More testing concluded he must also avoid nuts and soy.  We were literally scared to feed him in the beginning, it seemed every processed food had a trace of some forbidden ingredient.  But so far, so good.  We've been careful. We don't go out to eat much.  I'm a pro label-reader and an EpiPen-packin' mama.  And he's one of the lucky kids who stands a chance of growing out of at least some of his allergies.  In fact, his most recent testing showed he wasn't as allergic to the same foods as he had been a year before.  We've let a few things slip into his diet.  Soy oil and soy lecithin- not enough protein to cause a reaction.  Cheese and milk as an ingredient in baked goods- a small amount here and there doesn't seem to hurt. He's actually not that hard to feed anymore, especially when we stick to foods with minimal processing.
Boo with eye, cheek, and neck rash, courtesy of  lentil/tahini salad
So when Punky started vomiting profusely after eating rice cereal for the second time, and she didn't look "right," I took her to the ER.  She kept throwing up, even after it was only yellow bile, and that concerned the doctors enough to do a stomach X-ray, and then an ultrasound.  She had an IV for hydration and fell asleep in my arms once she stopped vomiting.  The doctors eventually sent us home saying it was just a stomach bug.  I even asked, "could it have been the rice cereal?" My allergy experience with Boo had taught me to always suspect the last thing eaten.  They were sure it wasn't, but someone did say it might be a good idea to wait a few days before introducing it again.
Punky trying to chew off her IV tubing
We waited two weeks and gave Punky only a few spoonfuls.  In about two hours (same time-frame as last time) she threw up.  I held her in a towel and kept cleaning up as she vomited again and again.  She was lethargic, falling asleep between episodes.  Her skin was pale and she felt cold.  I just snuggled her tight on my lap.  This time, we didn't take her to the ER.  I figured there was nothing they could do and honestly, I didn't want to go sit there for four hours.  After she slept for awhile, I nursed her and she kept it down.  Her body felt warm again and the pink came back in her cheeks.  We knew now that it was the rice cereal, but we didn't know how serious a reaction can be, and that we took a risk keeping her at home.

We didn't try any more foods.  She had been exclusively breastfed for six months and was off the chart for weight at 21 lbs.  At her six-month check-up, I explained what had happened to the pediatrician.  She took me seriously, but admitted she didn't know enough about food allergies and intolerances to tell me what to do.  I was referred to an allergist at our clinic.  The allergist visit turned out to be frustrating.  By now, I had done my research and I knew about FPIES.  The allergist had heard of it, but said it was really rare so that's probably not what was wrong with Punky.  She also said rice shouldn't be a trigger.  She wanted to do skin prick testing, and I consented.  It seemed to me that while we were there in the office, we might as well rule out some common food allergies.  So we tested for oat, wheat, soy, dairy, and egg.  They all came back negative, to my surprise.  It's possible that Punky does not have any actual food allergies, which is really good news.

But there is no test for FPIES.  You have to trial foods, one at a time, to see if your child can tolerate them.  Reactions can vary, from what I've heard, but the most serious kind of reaction is when your baby can't stop vomiting, loses blood pressure, and goes into shock.  And this is why I should have brought Punky to the hospital the second time she reacted.  Luckily, she came out of it OK, but in the future I'm going to act the minute I think something's wrong.  The real kicker here is that, like the allergist we saw, most doctors haven't heard of, or have no experience with FPIES.  So showing up at the hospital, explaining what you think is happening, is bound to get a lot of "she's crazy" looks.

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