Omaha boy suffers from rare allergy in which essentially all food makes him sick - LivewellNebraska.com
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Omaha boy suffers from rare allergy in which essentially all food makes him sick

Video:Jamus Hovseth's mother talks about her son's rare condition, food protein-induced enterocolitis syndrome.

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You wouldn't guess by the joyful personality of toddler Jamus Hovseth that he's fighting for his life.

The 3-year-old Omaha boy suffers from a rare condition in which essentially all food makes him sick, and his only source of nutrition is a hypoallergenic formula.

The family's latest struggle shows just how precarious their son's health can be.

The formula maker early this year introduced an upgraded version of its product. But Jamus is so sensitive that he can't keep the new formula down, and his parents Shawn and Robyn Hovseth have just enough of the old formula to last through the end of the year.

They spend much of their time testing others, hoping he'll be able to withstand it.

So far, Jamus can't tolerate any of them.

“Healthy Jamus is about the sweetest kid,” said his dad, Shawn.

Unhealthy Jamus — the one that comes out after failed food trials — is angry, temperamental and in pain.

He kicks and hits and vomits profusely. He's “intolerant of anything around him,” Robyn said.

The first sign something was wrong came as soon as Jamus was born.

He struggled to nurse, and doctors restricted Robyn to a limited diet. It didn't get easier when she introduced him to solid foods.

“Every single food he tried, he would get very sick after,” Robyn said. “We did some testing. Nothing showed up.”

At 16 months old, Jamus was diagnosed with the rare food allergy food protein-induced enterocolitis syndrome.

FPIES affects the gastrointestinal tract and is unlike other food allergies because its symptoms — vomiting, diarrhea and dehydration — aren't immediate.

Much is still unknown about the condition that generally affects infants and young children, but what's clear is that it affects everyone differently.

Most children outgrow FPIES by age 3. Others take longer.

The majority of children with FPIES have harsh reactions to one or two foods, and about 5 percent of children react to multiple foods, said Dr. Terri Brown-­Whitehorn, an associate professor of clinical pediatrics at the Perelman School of Medicine at the University of Pennsylvania.

But Jamus goes beyond that, said Brown-Whitehorn, who has seen the boy as a patient.

“The condition is relatively rare,” she said of FPIES,” and (Jamus') condition is even rarer.”

Unique to Jamus is that a formula called Neocate Junior is his only safe food. It must be unflavored, contain no prebiotics and not include palm kernel oil in its list of ingredients.

Nutricia, the company that makes the product, issued a statement after making what it called improvements to the formula early this year, saying the ingredients stayed the same and including a more detailed description of the same refined vegetable oil used for years.

The company emphasized that the new formula contains no new ingredients. It said it was simply upgraded to improve levels of vitamins and minerals.

Still, it didn't work for Jamus. His rejection symptoms showed up after trying it.

Nutricia said it's been actively addressing the Hovseths' concerns and is open to partnering with Jamus' physician to individualize a nutritional formula.

The family called their communication with the company so far frustrating, with orders of Jamus' safe formula arriving late and eventually not at all.

Now, the Hovseths spend time searching for cans of the safe formula from pharmacies and for families willing to give theirs up. They juggle that with traveling to Philadelphia for additional tests.

They're also trying other formulas and soon will start experimenting with homemade formulas.

The worst-case scenario is that Jamus will end up at a hospital on IV nutrition, and even that isn't guaranteed to help. His body could reject it, leading to liver failure, among other problems.

To help the Hovseths support Jamus, the City of Papillion's personnel committee is hosting a fundraiser from 6 p.m. to 8 p.m. next Friday at Eagle Hills Golf Course. It will include a free taco buffet donated by La Mesa, accept goodwill donations and offer silent auction items for purchase.

Shawn, a Papillion building inspector, and Jamus' grandmother Robin, who works in the finance department, are both longtime city employees.

Meanwhile, the family tries to maintain a normal home life for Jamus and his 5-year-old brother, Logan.

That's despite a recent move from Blair to Millard and Robyn's dismissal from her job.

“I think he knows we're concerned and stressed,” said Robyn, who keeps friends updated on a Facebook page called Fight for Jamus. “I don't think he knows how urgent it is.”

The strawberry-blond boy with toothy grin is generally in good spirits, darting around the house in a superhero costume and calling himself Iron Man.

Jamus doesn't mind that when each Halloween rolls around, he trades his candy stash for a toy purchased ahead of time by Mom and Dad.

He doesn't mind eating spoonfuls of the formula in its powder form or chewing ice while his family sits at the kitchen table for meals.

He doesn't mind the tube feeding through his stomach every few hours, or the occupational therapy that requires him to blow through pinwheels and bite down on “chewy tubes” to help develop his jaw.

“He always says, 'Someday when I'm older, I'll be able to eat (food),' ” Robyn said. “Hopefully. That's what we're working on.”

Jamus Hovseth's mother talks about her son's rare condition, food protein-induced enterocolitis syndrome.




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