Ten-year-old with eosinophilic enteropathy put on tube feed

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Twelve-year-old Tylor Savage doesn’t have to ask what’s for dinner. It’s chicken or tuna with carrots and potatoes and maybe some grapes or an apple — the only foods to which he is not allergic.

“I’m a little bored with the same food,” Tylor told TODAY co-host Matt Lauer during a visit to New York on Thursday with his father and sister.

But the British boy is not complaining. When Lauer asked him whether he wishes he could eat all the wonderful things he sees other kids wolfing down, he said, “Not really, because I know it will make me ill.”

“Ill” is a mild descriptive for what Tylor went through for most of his life. He was 4 years old the first time he got violently sick after eating. By the time he was 6, the diarrhoea and vomiting were getting worse, but his doctors could find nothing wrong with him, putting his digestive problems down to stomach viruses.

“It was horrible,” his 15-year-old sister, Elycia, said.

“It broke my heart,” added his father, David Savage, who made the trip to New York with Tylor and Elycia. Tylor’s mother, Lynne, remained at home in England with the family’s third child.

By the time he was 10, Tylor’s situation was desperate. He was passing out, going into convulsions and passing blood from both ends of his digestive tract. His weight was down to less than 50 pounds, his growth stunted, his body little more than skin and bones.

His mystified doctors took out his appendix, thinking that might be the problem, but he showed no improvement.

Last September, specialists at Great Ormond Street Hospital in London, where he’d been undergoing tests since April 2006, realized that what Tylor had wasn’t a stomach virus but an extremely rare condition called eosinophilic enteropathy.

The disorder causes his intestines to produce too many white blood cells that act as an immune system and attack food passing through the gut.

Doctors found that he was allergic to nearly everything he ate, including wheat, gluten, dairy products, eggs and soy products.

On the mend
They took him off all food, feeding him a liquid formula through a gastric tube inserted through his nose. They then introduced him to one food at a time, making sure he could tolerate it before adding another. Recently, tuna joined chicken as a protein source.

Although Tylor could eat again, he still needs to be fed vitamins and minerals in liquid form. The tube through his nose was causing painful sores where it rubbed against his nose, so in May it was replaced by a port in his stomach. Every night, Tylor plugs a tube connected to a bag of formula into his stomach.

Since getting the stomach tube and finding solid foods he can eat without getting sick, Tylor is thriving. Last year, he was so sick, he attended just 10 days of school. This year, he’s missed only one day.

“I’ve got more energy now,” he told Lauer. He plays soccer and bowls and can roughhouse with other kids. “It’s not like I used to be.”

His sister, meanwhile, has been organizing events — she bungee-jumped earlier this year — to raise funds to help others with Tylor’s condition.

He said that his diet will expand. “There’s a lot of things I am allowed but haven’t been introduced to yet,” he said.

The plane flight to New York, he said, was too long, but he said he’s enjoying the city. Lauer asked if there was anything in particular he wanted to do.

“I want to go to a Nintendo event,” he said. “I’ve got some games I need to play.”

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