Toddler Harley Paige, who is 2 and a half, began refusingfood at 14 months old.- He is now being fed through a feeding tube after he lost an alarming amount of weight.
Shannon Paige was shocked by the overwhelming response to her TikTok video about the trials of raising a toddler who refuses to eat.
More than 8.5 million people have watched as her 2-year-old son rejects every type of food offered to him.
He spits it out and pushes it away while crying. Her video is interspersed with close-ups of the food Paige has tried to get him to eat.
Toward the end of the TikTok, the little boy is shown with a feeding tube in his nose.
"It's as if he's on a complete hunger strike," Paige told Insider.
The single mom from Essex, England, doesn't speak in her TikTok video, but it features written observations. She expresses her frustration with people, including some medical professionals, who've offered advice that she said was not "helpful."
@justareallytiredmama Whoever said meal times were fun… lied. #toddlersoftiktok #feedingtubeawareness #ngtube #JDSummerDrip #oralaversion #spd #nhs #singlemama #HolidayModeActivated #foryoupage #tubiecheeks #tubie ♬ Another Love - Tom Odell
"Unfortunately it was only after Harley got so sick that he needed to be hospitalized that they really took me seriously," Paige said. "They had no choice but to do something."
She said that before her son was admitted to the hospital, she would constantly be fobbed off. Even pediatric dietitians would say things like "All toddlers are fussy," "It's just a phase," and "He'll eat when he wants to."
The 24-year-old mom said that doctors diagnosed him with a dairy allergy soon after he was born at a healthy weight of 6 pounds and 7 ounces.
He drank alternative milks such as oatmeal, and when he "weaned himself" off formula at the age of 7 months, he was on track in terms of growth. As he got older, Paige said, he'd happily eat the typical pureed baby food.
"He loved food and ate so much," Paige said. She said that at one point, Harley was in the 75th percentile for weight. "He looked so chubby."
Doctors were baffled by Harley's refusal to eat
But there was a dramatic change when Harley was about 14 months old. It was around that time, Paige said, that he developed a string of respiratory tract infections. "It was chest infection after chest infection," and he was "coughing up to the point that he'd throw up."
"It was very stressful to watch him suffer," Paige said.
He was prescribed steroids, but Paige, who works as a bartender, became increasingly concerned about his dramatic weight loss. "He started dropping dinners and snacks," she said. "I was worried about him getting enough nutrition."
Doctors gave him a throat spray in case the issue was caused by soreness, but Paige said the problem persisted. "Nobody really knew what to do," she said. She said his weight registered in the 7th percentile.
By August 2021, he'd lost more than 2 pounds. Paige took him to a gastroenterologist, who gave Harley a battery of test, but the doctor couldn't come up with a reason for Harley's issues.
Meanwhile, just as she does in her TikTok video, Paige made every effort to persuade her toddler to eat. She tried to feed him pasta, chicken breast, vegetables, purees, bread, and crackers, but he steadfastly refused them all.
"I've given him every type of food under the sun in the hope he'll try it," she said. "But he wouldn't."
Sometimes Harley, who also has sensory issues, could
She said that she'd often be patronized by medical staff who said things like, "Is he your first one?", suggesting that she was an overanxious and inexperienced mother. "I felt like I was being ignored and nobody would listen to me."
Things got so bad that Harley was admitted to the hospital. His weight had dropped below 22 pounds. Yet doctors continued to struggle with a diagnosis. He had more blood work and gastrointestinal tests, but the results came back normal.
"He was so weak, he'd sleep for 23 hours a day," Paige said of Harley's month in the hospital in February this year. "When he was awake, he'd lie in the bed, staring into space and listless."
A feeding tube has helped the little boy gain weight again
Another gastroenterologist eventually took over Harley's case and recognized the severity of the problem.
The toddler was put on a feeding tube and discharged. He has subsequently gained weight — he is now a much healthier 28 pounds — but he remains without a diagnosis. Paige said that he'd been referred to Great Ormond Street Hospital, one of the leading children's hospitals in the UK, for further tests.
"We just want answers," she said, noting that Harley had recently shown some improvement in
She said he's also gotten his energy back, and despite the feeding tube restricting his movement, he's "bouncing around" again.
Meanwhile, she's being bombarded with unsolicited advice from TikTokers who've seen her viral video. One person wrote, "Just give him food and leave." The amateur nutritionist continued: "If he wants to eat, he'll eat."
But Paige, who said she was frustrated by some of the "uneducated" comments, said that most followers have been supportive.
"I've heard from parents of kids who are just like Harley," Paige said. "If our story helps just one child, it's worth telling."