The boy who cannot eat; ... and he is not on his own.
Our story about Harrison Cooper-Jones, the little boy who wouldn't eat, evoked a huge response from readers. One of them, Suzanne Waller, has a toddler son with a condition that also makes it impossible for him to eat normally.
He is, she says, 'the boy who can't eat'.
Hilarie Stelfox reports.
TOBY PERCIVAL wants to eat but quite simply can't, says his mum Suzanne Waller.
Anything except first stage baby food makes him gag and the 18-month-old toddler has so many allergies that he gets most of his nutrition from a special amino acid formula fed straight into his stomach. Toby, whose family live in Barkisland, Calderdale, has a rare condition called eosinophilic oesophagitis, which affects one in 2,500 children.
The inflammation of the upper digestive system that characterises the condition causes vomiting, acid reflux, nausea, food aversion, growth failure and abdominal pain.
When Suzanne, 37, read our recent report on Harrison Cooper-Jones, who was born with an tracheo-oesophageal fistula (TOF) and at the age of three started to eat solid food for the first time after undergoing a pioneering treatment, she wanted to raise awareness of Toby's problems and others like him. Unlike Harrison, Toby went without a diagnosis until he was nearly a year old. By then he was so underweight that Suzanne says he was listless and delayed in his development. Even now he has just started wearing clothes for children half his age. "He wasn't doing anything much at all. He was barely crawling because his body had gone into starvation mode," says Suzanne.
Toby's problems are complex and began within weeks of his birth. "He had severe vomiting and abdominal discomfort," she explained. "By six weeks old he was projectile vomiting all the time and really not doing well at all. I was breast feeding him constantly." Suzanne and her partner Andrew Percival, weren't too worried at this point because their eldest daughter Lily, 7, had suffered from reflux - when partially digested food is regurgitated back up the oesophagus - but had grown out of it. They also have a daughter Isobel, 4. "We thought that when we started weaning him it would be all right," said Suzanne.
But Toby started to display all the signs of failure to thrive. He lost weight, developed chronic diarrhoea and began having episodes when he screamed for hours on end.
Although Suzanne found her local GPs to be sympathetic, when she took Toby to the hospital for further investigations she says she was met with disinterest.
"I was made to feel like the over-anxious mother of a colicky baby and yet I was exhausted from feeding him non-stop, and he wasn't putting on weight," she says. In the six months before his diagnosis Toby gained just one pound in weight.
"I felt like a bit of a failure. I questioned myself and thought I was doing something wrong. It was a very lonely time."
Because Suzanne had taken out medical insurance for each of their children when they were born, she asked to be referred to see a consultant privately. "He had started vomiting blood by that point and they took me seriously," she said. "We got a referral to St James' and also the Leeds General Infirmary. He was given drugs for the reflux and we felt that we were getting somewhere." The real breakthrough came when it was decided that Toby should have a naso-gastric feeding tube around his first birthday and he started to gain weight. "He put on a pound a week," said Suzanne.
Toby was then given a gastrostomy tube so that the special formula could be delivered directly into his stomach. He's connected up to feeding machine for 10 hours every night. "He's really good about it," said Suzanne. "When he wakes up in the morning me waits until the machine has finished." In fact, despite his many problems and many hospital visits - he's had nine different procedures, tests and operations and has seen five different consultants - Toby is a cheerful child.
"He takes it all in his stride," said Suzanne, "he's wonderful really." But there is no doubt that Toby's illness rules family life. "Everything revolves around Toby, his hospital appointments and feeding. We have to work very hard to make sure the girls don't miss out, but it's difficult," she explained.
"We went to Canada on a family holiday last October but Toby had to go into hospital because he came out in a blistering rash and started wheezing. The reflux has burned his windpipe and he needed immediate steroids and nebulisers."
Toby is now having further tests and there is a possibility that he might have coeliac disease, which is an intolerance to the gluten in starchy foods such as wheat.
"Not many people know about children like Toby," said Suzanne, "although there are quite a lot of them. Even doctors haven't heard of eosinophlic oesophagitis. He wants to try and eat but his body is rejecting food.
"He's a boy who can't eat.". Suzanne is involved with the work of the Living With Reflux group, a web-based support network of parents whose children have similar problems. "It was a lifeline for me," she says. "You don't realise until you have a child like Toby that there are so many children out there like him and Harrison."
The website can be found at www.livingwithreflux.org
* FEEDING PROBLEMS: Toddler Toby Percival, of Barkisland and with his mum Suzanne Waller (PW260810Htoby-03)