EoE Times 3: Tinleigh Is Living the Allergy Life

A lot’s happened since I last wrote about our family’s experience with eosinophilic esophagitis (EoE), Life with EoE Times Three, on Cincinnati Children’s blog! I’d like to give an update on my 7-year-old daughter, Tinleigh, because she’s living the allergy Life. She’s reaching new milestones. She’s now in 1st grade, celebrated her 7th birthday, and  even eats lunch in the school’s cafeteria!

Those sound like pretty typical milestone for most kids. But for a child with severe food allergies and eosinophilic esophagitis, they were quite an undertaking.

Tinleigh’s Eosinophilic Esophagitis (EoE) Diagnosis

You see, Tinleigh was diagnosed with eosinophilic esophagitis when she was 14 months old. Today she can only eat fruits and vegetables. She has anaphylactic reactions to beef, chicken, pork, dairy, wheat, eggs and soy.

She’s still drinking from formula bottles. It hurts my heart. We’ve been fighting this fight for six years. It kills me when she asks for something to eat that she can’t have. And on the flip side, we get really excited when we find a food she can eat. The highs and lows are so hard on our emotions. It’s just a part of our daily life.

Tinleigh Now Attends 1st Grade and Eats in the Cafeteria

But the good news is that she was able to attend first grade this year, and even eat in the school’s cafeteria. During Tinleigh’s kindergarten year she was having airborne reactions to beef and dairy. So we couldn’t allow her to sit in the cafeteria for the fear of having reactions.

But this year has been absolutely amazing. She’s surrounded by a group of people who understand the importance of keeping her protected. After much planning, we decided to allow her to eat lunch in the cafeteria.

For the first week, I sat with her during lunch. I was so nervous—it was like watching a bomb to see if it is going to explode. Fortunately, I think we have finally gotten her airborne reactions under control with medicine, and I eventually relaxed. 

She absolutely loves being in the lunch room. She is isolated at the peanut free table located closest to the exit doors. But it doesn’t matter because she gets to sit with her best friend who isn’t in her classroom this year. The two of them giggle and chat through the whole lunch period. It’s adorable. She’s also allowed to have one other friend join her as long as she has a hot lunch from the cafeteria. No packed lunches.

For Tinleigh’s safety, we have to get 97 sets of hands clean after lunch is over. It’s quite the challenge to get that many 7 year olds to wash their hands in three minutes, and do it well. Since Tinleigh’s class has gym following lunch, it’s important to make sure it’s done right.

To make this easier, the school asked for hand wipes donations from the community. They estimated they would need 17,000 wipes to get through the school year. Our school and community donated nearly 54,000! I was so touched by the generosity, I had to choke back tears. I mean, who cries over donated wipes? This mom. When a community makes it possible for one of my kids to have some semblance of a “normal” life, I am moved to tears.

Tinleigh’s Birthday

Which brings me to Tinleigh’s birthday this year. The milestone is always interesting for kids with EoE—and depending upon what foods they can or can’t eat, a lot of creativity is needed. I made Tinleigh a mug cake this year, which consisted of coconut flour, oil, sugar and water. I mixed it all up right in a coffee cup then microwaved it for 90 seconds. She loved it!

We also let her have her first friend birthday party. I was quite nervous, knowing that we couldn’t have a “normal” cake for her friends. I wondered what they would think? My mom and I came up with a cake made of fruit. I also melted Enjoy Life chocolate chips and drizzled it over the strawberries. They thought it was wonderful, and kept asking for more. Tinleigh thought it was the best birthday ever!

Tinleigh Is Living the Allergy Life

This past summer, Tinleigh did the elemental diet to see if it would help clear her EoE. Unfortunately, it did not—she still had eosinophils in her esophagus. She is truly in that rare group of kids with the disease. She has been on steroids ever since and we are hoping they allow her to eat.

So currently, she’s able to eat all fruits and vegetables, as well as coconut and cocoa. She’s been doing amazingly well with this. She can even have tacos! They’re made up of a corn shell with pinto beans, diced tomatoes, black olives and lettuce. With so many members of my family having EoE, tacos are the one meal we can all do together. They’re just made up of different things.

We are coming up on our next trip to Cincinnati Children’s, where Tinleigh will receive another scope. We’re hoping to see that the steroids are working and she’ll be able to stay on these foods and back off on the number of scopes that are necessary.

Either way, Tinleigh won’t let the news slow her down. And she most certainly won’t let EoE slow her down. She has her sad moments, but this little girl brightens everyone’s day and makes the most out of it. She is definitely living the allergy life.

To learn more about treatment for eosinophilic disorders at Cincinnati Children’s, please call 513-636-2233 or email cced@cchmc.org.

Kara Root

About the Author: Kara Root

Kara Root is the average stay at home super mom. She loves coffee, dancing, learning to garden and teaching her children how to grow into the best people they can be all while dealing with EoE, food and environmental allergies, asthma and feeding tubes. Check out more about what life is really like for her at livingtheallergylife.wordpress.com

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Comments

  1. greatambino January 31, 08:55
    I’m so happy to hear she is doing well and hope the rest of your family is also! I too have a 7 (almost 8) year old with EoE and it’s so helpful hearing from someone who “gets it.” We have gone from eating 15 foods to many fruits and veggies and back to all meats ?. His last scope results were good and we are getting ready to start introducing the major 6. I’m nervous and hopeful all at the same time. He takes every gain and setback in stride, without complaint. I’m beyond proud of him! I hope yours continue to make gains. Best wishes!
  2. Judy January 31, 10:58
    Hi Kara, your post both inspired me and broke my heart. I could relate to every moment of anxiety that you mentioned. After several years of not knowing what wrong or how to help my grandson, he was finally diagnosed with EOE at the age of 12. Explained a lot. We've been researching like mad and joining online support groups. So far, we still haven't figured out what his triggers are. We may have to do elemental. However, I noticed that it allows sugar. I ran across a paper in the Journal of Gastric Diseases on a link between EOE and sugars. Had you noticed any correlation or was in part of your daughter's elimination diet? My daughter, husband and I are simply so frustrated and floundering to figure out his triggers. I was so happy to read that Tinleigh is able to eat lunch in the cafeteria! I was inwardly celebrating with you at this milestone for your beautiful girl. One of the anxiety triggers in my grandson includes calling attention to himself through accommodation or behavior at the school. Ergo, I could really relate to this. Thank you for your blog and sharing so many details of your family life and Tinleigh's progress. It's such a help to hear how other families adapt. Thank you again!
  3. Sarah February 01, 11:55
    As a fellow EoE mom, your article touched my heart. Our son was diagnosed with EoE at 10 months of age, and boy, do we know the heartache you describe over lunchrooms, birthdays, parties... even road trips and the dreaded fast food stops! Cheers to you and your precious daughter on the progress she has made~ and prayers for continued healing (and advancement in EoE). Our son is now 15 and is off steroids and eating (almost) anything and everything he wishes! He is still monitored and scoped frequently, but... we will take it! Thank you for sharing your story. xoxo