WINSTON — Tasha Phillips was scared.
Her son was having severe allergic reactions. He wasn’t eating. He wasn’t gaining weight. Much of the formula, or any solid food, he consumed wouldn’t stay down.
Tasha’s son, Jameson Wilson, was, as she put it, “starving to death.” And she, along with her boyfriend, Victor Wilson, couldn’t figure out why.
“It was frustrating,” Victor said. “At first, we thought it was just some small allergic reactions, but nothing we tried helped.
“We didn’t think it would be something this extreme.”
Jameson recently was diagnosed with eosinophilic esophagitis, a rare and chronic condition that causes an allergic reaction in the esophagus with certain, and sometimes many, kinds of foods. It makes the lining of the esophagus swell, causing food to become lodged before going into the body’s digestive tract.
The disease happens when a type of white blood cell, or eosinophil, builds up in the lining of the tube, or esophagus, that connects the mouth to the stomach. This buildup, which is the result of an allergic reaction to foods, allergens or acid reflux, can inflame or injure the esophageal tissue.
It’s a disease that, according to the American Partnership for Eosinophilic Disorders, is rare but is increasing in prevalence with an estimated 1 out of 2,000 people affected.
In Jameson’s case, eating would not only swell his esophagus but also cause him to break out in eczema rashes, Phillips said.
She first witnessed that, she said when Jameson was 2 months old. Jamison’s body was covered with eczema each time she breastfed, and she immediately switched him to formula.
But Jameson couldn’t keep his food down, and the eczema kept coming, though it wavered in severity. Doctors said there was nothing wrong. But the symptoms persisted, and his weight rarely increased.
“At one point, he was in the zero percentile for his age and weight, and the doctor kept saying he was fine,” Phillips said.
The lack of progress prompted Phillips to switch doctors and put Jameson under the care of Dr. Tasha Rutledge at Umpqua Health Newton Creek, where Phillips said the care for Jameson immediately improved. By then, Phillips said, biopsies and tests had determined Jameson had eosinophilic esophagitis, otherwise known as EoE, meaning a suitable, long-term treatment plan could be put in place.
Much of that treatment plan, however, centered around eliminating foods Jameson couldn’t eat. It also meant all the formula Jameson’s parents got for him came with the risks that the toddler might be allergic while Tasha and Victor had to shoulder the heavy financial load. One formula Jameson could keep down, Tasha said, cost $50 per can — a financial burden Jameson’s parents had to shoulder themselves until, she said, Women, Infants, and Children program agreed to cover the costs.
Not long afterward, Jameson’s parents and Dr. Rutledge agreed to have a gastrostomy tube — a tube inserted through the abdomen that delivers nutrition directly to the stomach — surgically inserted. It was a way for the food to bypass the esophagus and prevent inflammation and allergic reactions, although it was potentially something that would have to have for the rest of his life.
It was the best-case, long-term scenario Jameson had to get the nutrients and calories he needed to reach a weight normal for his age, Phillips said, and the surgery was scheduled to take place in OHSU’s Doernbecher Children’s Hospital in Portland in April.
Then, it wasn’t.
The emergence of the coronavirus pandemic in Oregon and across the United States prompted Gov. Kate Brown on March 23 to issue her “Stay Home, Save Lives” executive order, which enacted social distancing protocol and only allowed essential retail services and medical procedures.
Jameson’s procedure, Phillips said, was considered by the state to be an elective surgery. It was canceled until further notice.
“It wasn’t considered essential enough even though he was starving to death,” Phillips said, her voice elevating. “It makes you feel helpless to know there’s nothing you can do but watch your child struggle. That everything you’re doing is wrong. That all of your instincts as a mother are wrong.”
Jameson’s parents mix and matched baby foods and formulas — hoping for mixtures over the next few months until past April 28, when Phillips received a call from a representative at Doernbecher that there was an opening to have her son’s gastrostomy tube, or G-tube, inserted on May 1. By then, many COVID-19 restrictions had been lifted, and elective procedures were again permitted.
“I told her, ‘We’ll make it work,’” Phillips said.
And it’s worked wonders.
Although Jameson has been limited to consuming Neocate — a hypoallergenic formula tailored to children with severe food allergies — the G-tube, which has to be switched out every three to six months, has allowed Jameson’s parents to isolate foods he tries to see what specific food allergies he has. It’s certainly a long, tedious process, as Jameson’s allergic reactions can take up to 48 hours to show.
Victor and Tasha have at least been able to pinpoint a few foods to stay away from. Soy is their biggest find so far — they’ve determined that almost every processed food has ingredients that include soy, which Jameson can never have, they’ve determined.
In spite of that, it’s also made Phillips wonder, and worry, about how her son will be looked at as when he gets into school, or even high school.
“So many social gatherings with children are surrounded by food,” she said. “I hear it from the moms in the groups I’m in say their kids are struggling in school because they’re always sick, or the kids make fun of them because they don’t eat the same things. It makes me sad.
I hope it’s not going to be a problem, but I’m prepared for it to be a problem.”
On the flip side, Phillips said Jameson doesn’t know anything is wrong with him and only sporadically mentions to his parents every once in a while that his throat hurts. Jameson’s parents know, however, that won’t be the worst thing he experiences.
For the time being, however, they’re happy the proverbial road in front of him is a much easier one to travel.
“What’s amazing is that we’ve gone from wondering if he’s going to die from this to figuring he’s got his whole life ahead of him,” Victor said. “Now we have a game plan and a list of things to look out for. It’s great knowing that.”