Taste test

When describing how most kids react to a plate of their least favorite foods, the term melodramatic would be an understatement.

“If I have one more bite of broccoli, I’m going to be sick!”

“Yuck! Spinach again? It makes me gag.”

But for a small portion of kids, these terms aren’t exaggerations; they’re medically accurate statements.

Cameron Ledin is one of those children. The 8-year-old was recently diagnosed with eosinophilic esophagitis (EoE), a severe allergic inflammation of the esophagus that causes his body to have terrible reactions to a wide range of foods. When a person with EoE eats, his immune system can mistake certain foods as invaders. This causes white blood cells to attack the throat, and can lead to terrible pain in the stomach, joints and head.

EoE is rare and difficult to diagnose, especially in young children who can’t clearly express what they’re feeling. Complicating things even more, EoE symptoms often change over time, or won’t occur for hours or days after the person has been exposed to a trigger food, making it hard to pinpoint exactly what caused an inflammation. With so many variables involved, differentiating EoE from other food allergies or gastrointestinal issues is very tricky.

In Cameron’s case, proper diagnosis took years of testing.

Losing the food fight

For a time Cam had to receive his nutrients via a tube

As an infant Cameron sneezed and rubbed his eyes whenever his mother Kim nursed him, so his parents brought him to see Boston Children’s Hospital allergists, who diagnosed him with food allergies. When he was old enough for solid food, he often refused to eat. This led to more tests, which revealed more food allergies. When he was old enough to talk he said his stomach hurt all the time—more tests confirmed even more allergies.

By the time he was 7 years old, Cameron could only eat 25 foods. And even then his pain and symptoms continued. When he could stomach eating, he had to chew his food to a fine, mealy paste so he wouldn’t choke if his esophagus seized up.

Sick with worry, Cameron’s parents took him to see the specialists at Boston Children’s Eosinophilic Gastrointestinal Disease (EGID) Program, a multidisciplinary clinic that treats children with conditions where high levels of eosinophils—a type of white blood cell involved in allergic reactions—affect one or more parts of the digestive system. There they met Eitan Rubinstein, MD, a doctor who specializes in kids like Cameron.

Rubinstein reviewed Cameron’s case and suspected EoE, but because the condition is so rare and difficult to fully diagnose, more testing was needed. Rubinstein performed an endoscopy on Cameron, which means he placed a small camera down Cameron’s esophagus and studied the inside of his throat and stomach. He also took small tissue samples to look for damage and inflammation associated with EoE. Cameron’s endoscopy and tissue samples proved to be the missing piece of the puzzle, and he was officially diagnosed with EoE.

Centralized care

Cameron has a whole team of doctors looking out for him at Boston Children's

Even though the diagnosis was serious, Kim was relieved to finally have a name for the illness that had troubled her son for so long. She also took comfort in knowing that the same specialized care team that diagnosed her son would also be treating him. Their team includes gastroenterologists and allergy specialists who work closely to understand and treat Cameron’s medical needs, as well as a social worker, a nutritionist and a nurse practitioner to help them adjust to the many aspects of life with EoE.

“Instead of seeing various specialists at different times, we now go to just one appointment at the EGID Program,” Kim says. “They manage every aspect of Cameron’s health. From Drs. Rubinstein and Lee, to his social worker, Yoshiko Okazaki, his nutritionist Tara McCarthy and nurse practitioner Julia Perkins—he has a whole group of pediatric experts looking out for him.”

Treat to eat

For children like Cameron, treatment generally falls into two categories: medication to reduce reactions, or dietary restrictions to avoid trigger foods.

Because no one is sure exactly which foods are making Cameron so sick, and so far medications haven’t been very effective, all of his nutrition currently comes from a special formula that he receives through a tube.

Dr. Lee and Cameron

But under the close watch of Rubinstein and John Jhe-Yun Lee, MD, co-director at Boston Children’s EGID Program, Cameron is undergoing food trials where he adds one solid food per week to his diet, in hopes of using a process of elimination to figure out exactly which ones his body can—and can’t—tolerate. The trial foods are specially identified by Lee, based on testing, his personal knowledge of Cameron’s case and his background as an expert in allergic gastrointestinal disorders.

“We really tailor our treatment approach to the family’s needs and preferences,” says Rubinstein. “In Cameron’s case it made the most sense to put him on formula at first and then introduce more foods over time.”

After several weeks of trying individual foods, Cameron has another endoscopy to see if there is any noticeable damage to his body. If no damage is seen, the food is added to Cameron’s “safe” list. It’s a short a list at the moment (rice and bananas have passed, pork and potatoes have failed), but Kim and his care team are hopeful that the list will grow as Cameron does.

“The plan going forward for Cameron, and really for all our patients on formula, is to introduce foods slowly, eventually building a sizeable list of safe foods,” Rubinstein says. “I think Cameron will be able to eat most things in time, and as long as he avoids his established trigger foods, he can have a fully balanced diet and enjoy eating like everyone else.”

Kim shares that optimism, but after watching Cameron go through a few failed trials, she has no delusions that it will happen overnight. Still, after each setback Kim reminds Cameron (and herself) that though the journey may be seem long, they’ll see the light at the end of the food trial tunnel some day.

“Unfortunately there’s no fast forward to get you through failed trials, or the symptoms and tears that come with them,” she says. “He’s a tough kid, so we take it one step at a time and celebrate the victories when we have them. We recently discovered a new recipe for one of Cameron’s safe foods and he can’t wait to share it with his care team. Moments like those really give us hope.”

  • Kim Gillis Ledin

    I will be forever grateful to the amazing team of specialists that treat my son, Cameron. Thank you for sharing our story <3

  • Amber Start

    Hi, I just wanted to tell you it is possible to get to the other side of this. My son, now 16, dealt with all of the same symptoms, pain and what seemed like endless tests. What played a large role in figuring out what was the true trigger was looking at family history. My son’s father was diagnosed with celiac disease when he was forty yrs old, he suffered for years not only with all the stomach problems but also with severe seasonal allergies. We had my son gene tested, he does carry the celiac gene but did not hit criteria for a celiac diagnosis, but he was diagnosed with EE. We spent months doing food elimination diets, steriod inhalers, different meds, all with no results. The only thing we noticed was his behavior when gluten was reintroduced, he started acting up again. Our journey took several years, finally be faced with using a chemo drug, I really started to do my homework, reading, learning as much as I could. We decided not to do the trial using chemo drugs and just went completely gluten-free. Within a week my son told me he noticed how much better he felt. It would take a few endoscopies to get clear biopsies. At the same time I worked on boosting his immune system, he takes a multivitamin, a vitamin C, he takes 1 either claritin or zyrtec everyday, and at that time he drank one ensure a day, the ones that have prebiotics. The docs would never say or confirm that the elimination of the gluten was the fix, but I know it was. My son had damage to his esophagus, his father has damage to his small intestine, why can’t it be from the same culprit??? Just for further info, everytime I would research on these health issues, autism spectrum orders would come up, I just ignored that at the time, a few years later, my son would have troubles again, not the EE, but socially. We had him evaluated at Children’s and he was diagnosed with an ASD, asperger’s to be more exact. So it was kind of funny that we would go through all the gastrointestinal problems first and then come to the asperger’s, Almost all kids on the spectrum have difficulty with food and digestion. So to round this up, he is doing well now, he is still gluten free but eats very healthy. He is making progress with social issues, it’s slow progress but he is improving. He is a straight A student and we are hopeful he will attend college in a couple of years. I wish you luck in the days and months ahead, trust your instincts, do your homework, you will get him well again.
    Amber

  • Virginia Hicks

    I need help. My 10 year old son just got diagnosed with Eoe 2 weeks ago and the doctors here are not very familiar with it. We are on our 3Rd hospitalization in 2 weeks and BC he has been on the slurry for a week they are telling me to start adding the foods I took out BK in BC he only scored a 2/4 on the allergy panel so they are safe for him. We were spouse to go home today but I added one food BK in and he stated vomiting again he has been comparing that he feels like everything is getting stuck in his throat but the doctors do not seemed worried. Am I just to worried or do I need to look for a new hospital? At this point I’m willing to travel wherever need to.

    • trippunderwood

      Hi Virginia,
      We cannot provide any medical information online. To speak with one of the team members mentioned in Cameron’s story, please email EGID@childrens.harvard.edu or call 617-919-9958.