Our patients’ stories: living with severe food allergies

Did you see WCBV’s 11 O’clock news last night? If so you met Cameron Ledin, a patient at Boston Children’s Hospital.

We were so impressed with the Ledins we had Cameron’s mother, Kim, write a blog post about what it’s like raising a child with severe food allergy.

By Kim Ledin

Cameron at Boston Children's

Cameron is a smart, energetic 8-year-old boy. These are the words I use to describe him, even though some people might define him by the medical condition that has shaped his young life. Cam was recently diagnosed with eosinophilic esophagitis (EoE), an allergic condition that causes his throat to seize up when he eats. When a person with EoE eats, his body mistakes food as an invader. With every bite white blood cells attack the throat, causing it to tighten up while often creating terrible stomach, head and joint pain.

EoE is rare and difficult to diagnose, especially in young children, so it took us years to find out exactly what was wrong with Cameron. When he was a baby we knew something wasn’t right, but we didn’t know what. He sneezed and rubbed his eyes whenever I nursed him. When we brought it up with his pediatrician, she gave Cam an array of blood tests that showed he had multiple food allergies.

Patch tests are often used to help diagnose food allergy

We were in shock and didn’t know what to do. As many parents do these days, I went online to figure out what our life would be like going forward. I quickly found two amazing sites, www.foodallergy.org and www.kidswithfoodallergies.org, to help me. Through education and support I gradually figured out how to navigate the minefield of allergy-triggering foods, and even changed my own diet so my breast milk would be less likely to trigger a reaction in Cam. I thought we had it all in check, but his symptoms continued.

When he was old enough for solid food, it was difficult to get him to eat. When he was old enough to talk, he said his stomach hurt all the time. Every day. Every meal. Our allergist at Boston Children’s Hospital, Curtis Moody, MD continued to do annual allergy testing, and every year Cam’s list of allergy-triggering foods grew. I tried to put on a strong front, but inside I was a wreck. My child couldn’t enjoy the simple pleasure of eating and it made me feel terrible. I would encourage him to eat (that’s the term we use in our house, you may call it nagging, begging and bribing) but after a few bites he would crouch over in pain.

We tried everything to help Cam but nothing worked; not the hours of research, special ordering of foods online or trips to multiple grocery stores for specific ingredients. He stopped gaining weight and looked gaunt, like a child in a magazine story on starvation in developing countries.

Then, on a routine trip to Boston Children’s, we met Eitan Rubinstein, MD, a doctor who specializes in kids like Cameron. Dr. Rubinstein and John Jhe-Yun Lee, MD, his colleague at the Eosinophilic Gastrointestinal Disease (EGID) Program, diagnosed Cam with EoE. Now, instead of seeing various specialists at all different times, we go to one appointment. Our EGID team (Drs. Rubinstein and Lee as well a social worker, nutritionist and nurse practitioner) is on the same page. Just knowing that all these specialists are always here for my son is a real gift.

Currently, Cameron takes his nutrition through a tube in his nose that goes down to his stomach, but it’s worth it because Cam, for the first time in his life, is living pain free and is starting to gain weight.

Cameron has had his ups and downs with EoE, but keeps on smiling

Thanks to tests being done at Boston Children’s, he’s even starting to try solid foods. He is trialing small amounts of banana in hopes that his body can tolerate it. Just the other day he said, “Mom, I’m going bananas. Literally!” A sense of humor is a great coping mechanism, I’m glad Cam kept his because this is going to be a long road of trying foods, one at a time, and hoping they don’t make him feel sick again.

When Cam was born I thought of myself as his mother, but now I see myself as much more. I’m his mom, his food scientist, home nurse, food allergy advocate, specialty chef and in-house food expert. It’s hard work but I’m rising to the challenge. Like Cam, who inspires me daily, I prefer to be defined by what I’m capable of, not what I’m up against. With the help of our team of experts in the EGID team our whole family is living up to that potential.

 

For more on food allergy treatment and testing, check out the multi-part series Thriving did on Brett Nasuti, who was able to overcome many severe food allergies with help from Boston Children’s.

12 thoughts on “Our patients’ stories: living with severe food allergies

  1. our thought s and prayers are with you especially during this critical period!!! please keep us updated.

  2. Wow! What a long road it’s been! I’ll be keeping you all in my prayers in the hopes that someday he’ll be able to eat without the fear of getting sick.

  3. It makes you truely appreciate the little things we take for granted, like just grabbing a quick snack. Cam keep laughing it really is the best medicine. My prayers are with you and your family.

  4. read and ‘study, deeply’ the science of christianity, as I have.  Science and Health, with Key to the Scriptures, by Mary Baker Eddy.  You’ll find what you are seeking for your little boy and for your whole family there.  godspeed.  you are so very loved…

  5. Hi! My 3 year old has EE also and sees specialists at Children’s! We are on a trial of wheat right now! I feel your pain…but hopefully we can find foods that our boys can eat!

  6. I was diagnosed with EE at 40 years old. Hang in there Cam! Sounds like you have a lot of the right people in your corner:)

  7. You are an amazing mom and he is lucky to have you both as parents! His sense of humor is a gift as well! Keep being positive. 

  8. Kim – my three-year-old son was diagnosed with EE two months ago.  I dealt with similar issues from the time he was born.  One of the most maddening diagnoses I received from an orthopedist regarding the joint pain was “growing pains”.  I have learned that we moms (parents) have to follow our instincts and push doctors when we know something is wrong.  While we’re still dealing with some of the pain as we haven’t worked out all of the allergies, it is so nice to see him finally out of the majority of the pain.  It’s also nice to know I’m not alone.  All the best to you!

  9. I’m tearing up, reading your story.  I am a former Inpatient Psych social worker, and I used to work with medically complex kids, especially kids with anorexia who felt like they couldn’t eat (for reasons very different from Cam’s situation).  I’m also a first-time mom of a lovely, nearly 2 year old.  I’m so amazed by your strength, and by your little boy’s wonderful sense of humor and will to Get Through This.  Parents and kids like you and yours are simply incredible.  All the best to you, in hopes that there continue to be strides forward and answers, and foods that Cam can tolerate and *enjoy*!!

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