It’s lunchtime for 8-year-old Cameron Ledin.
On the menu today, and everyday, is a specially designed formula he takes in through a feeding tube. Hypoallergenic and made of amino-acids, it’s just bare-bones nutrition and all his body can take.
Each bag of formula has 400 calories in all, and he’s fed one bag four times a day.
“He was having issues with abdominal pain. He was getting full early. He wasn’t gaining weight well,” said Dr. John Lee, an allergist at Children’s Hospital Boston.
“People in our school weigh 50 or 51 pounds, and I’m like the only one who weighs 40 pounds,” said Cameron.
Last summer, Children’s Hospital Boston finally put a name to what Cameron’s endured since he was a baby: Eosinophilic esophagitis, or EoE. It’s a disease where his white blood cells attack food, damaging his esophagus.
“It’s almost like his body’s decided food’s a parasite and starts building up and closing off the throat,” said Kim Ledin, Cameron’s mother.
The disease is rare, but alarmingly, is on the rise.
“In the last 10 years or so, there’s actually been probably a seven- to 10-fold increase in the prevalence of EoE,” said Lee.
Doctors aren’t sure why. One of the most popular theories is the hygiene hypothesis.
“Our society is so clean that we have no bacteria. We have no infections. Our immune system doesn’t have anything to fight. So instead of fighting things that it should be fighting, it’s fighting food,” Dr. Perdita Permaul, who specializes in children’s food allergies at Massachusetts General Hospital’s Food Allergy Center.
“They’ve done studies looking at farm kids that grew up in Europe. They live on the farm. They’re exposed to dirt. They’re exposed to farm animals. They have little to no food allergies,” Permaul said.
In the United States, Cameron’s one of a growing number of American children with food allergies. One in 12 kids under age 6 have allergies, and at Children’s Hospital Boston, emergency room visits for allergic reactions more than doubled from 2001 to 2006, according to the Journal of Allergy and Clinical Immunology.
“Food allergies, asthma, all types of allergic disorders are increasing,” said Lee.
For Cameron, that’s meant pain and frequent hospital trips.
“Day after day after day nausea, vomiting, not tolerating food, not wanting to eat food,” said Todd Ledin, Cameron’s father.
“Joint pain, headaches, rashes,” said Kim Ledin.
And at school, kids can be cruel.
“My meatloaf sub, they thought looked like a brain,” said Cameron. “(It tasted good), but it stopped me from eating it because it really hurt my feelings.”
There’s no cure for EoE. But since he’s been on formula, Cameron’s put on three pounds in three weeks.
“My son’s had no pain for the first three weeks in his entire life, and that’s pretty awesome,” said Kim Ledin.
The next step is slowly reintroducing foods back into Cameron’s diet, one at a time, now that his esophagus is in better shape.
“Banana chips, potatoes, sweet potatoes, a lot of stuff,” said Cameron.
The Ledin’s advice for other parents is simple.
“Sometimes it’s not just allergies. It might be something if there are (gastrointestinal) problems. Push your doctor into taking the next step,” said Todd Ledin.