Updated: 02/22/2013 2:32 PM KSTP.com By: Mark Saxenmeyer
Doctors at Mayo Clinic in Rochester are trying to figure out why a three-year-old boy can't eat.
He can't keep anything down, not a single food.
The only thing sustaining him since birth has been a prescription-only powdered formula drink.
But now, he can't even stomach that.
At this point, it's truly a medical mystery.
"He doesn't know what real juice tastes like, or real milk," said his mother Jennifer Gonzalez.
She and her husband, Tom Gonzalez, have been in Rochester for two weeks, in search of answers for their only child, Michael.
He has always had an extremely rare condition known as Food Protein-Induced Enterocolitis Syndrome. It essentially means Michael is allergic to pretty much everything.
"Carrots, apples, " Jennifer said, listing off dozens of foods. "He can't eat any of that. Babies are supposed to be happy. He wasn't. Every time you fed him, he got worse. He was mad."
It started the moment he was born. Everything that went down, came right back up. Dozens of doctors failed to find an answer and the Gonzalezes feared their son was literally going to starve to death.
"And then he turned 11-months-old and we put him on Neocate Junior and he was perfect," Jennifer explained. "We go through 20 to 30 bottles a day."
But last November, that all changed. "He was vomiting and had severe diarrhea," Jennifer said.
It happened just as Nutricia, the maker of Neocate Junior, changed the product's packaging. "The company assured us that the new label was the same, same ingredients, same everything," Jennifer said.
According to Michael's dad Tom, a Nutricia vice president even came to the Gonzalezes' home and told them "in our laboratory conditions I can't see a difference, smell a difference, taste a difference."
Nutricia says it knows of 14 other U.S. children who've reported similar problems, and says it's partnering with the FDA to initiate "extensive testing and analysis" to figure out what's happening. The company also says it's consulting with "leading allergy and immunology experts to determine what else we can do to help these children." Nutricia adds, “In consultation with the FDA, we completed an exhaustive evaluation of the product and our manufacturing facility internally and by external labs. All tests confirmed that Neocate Junior Unflavored has not been changed or altered.”
But in the meantime, the Gonzalezes have come from Florida to Minnesota looking for help.
In the last two weeks the Gonzalezes have brought Michael to see every specialist imaginable at Mayo: endocrinologists, neurologists, allergists, infectious disease and gastro intestinal specialists. But so far, none of the doctors have been able to unravel the mystery.
The Gonzalezes are expecting more test results Friday.
Doctors say many infants and toddlers who suffer from severe food allergies and syndromes like the one Michael has eventually grow out of them. The Gonzalezes, though, say they've been told their son might not "age-out" until he's in high school.
As a temporary solution, Jennifer has loaded up on batches of the older version of Neocate Junior that she's found for sale on the internet. The family will keep searching for more but time is truly running out.
Labeling on the older batches indicate they can't be consumed after October 2013.
"And that's not OK to tell me that my son has an expiration date," Jennifer said.
Mark Saxenmeyer can be reached at firstname.lastname@example.org