It’s been one year. A year since taking away almost all foods from my son. The journey has been a long one and it isn’t over yet.
Meet Bradley: He’s a typical third grader who enjoys hanging out with friends, playing on the computer or a tablet, and watching cartoons. He dreams of becoming a scientist, an architect, a Marine, or a policeman. Unlike most people though, he also dreams of the day he will get to eat food again like everyone else. The top 5 food items he can’t wait to have again include: pizza, cake, steak, chicken, and double chocolate chip cookies.
Bradley was diagnosed 5 years ago with a rare disease called Eosinophilic Esophagitis (EoE). Basically, his body treats food as a foreign invader and attacks. In addition to the food allergies we knew about before the diagnosis, we had to find out if there were other foods. Then began 5 years of removing various foods, multiple endoscopies and colonoscopies, and watching as my little boy slowly lost energy and stopped thriving.
When Bradley started second grade, I watched as he voluntarily stopped going to recess and started coming to my classroom at school to nap during special area time. He had little to no energy. His quality of life was fading right before my eyes. In December 2013 my husband and I requested to have all his MUSC specialists meet with us to review his case and determine a better course of action. A better treatment plan.
As we all came to the table on a morning in January 2014, we discussed all the symptoms and all the treatments for the past 5 years, and we came to a conclusion: His body needed rest. It needed time to heal from constantly attacking itself. The only way to do that was to move full speed ahead to having a g-tube placed in his abdomen so that he could be tube fed with a special elemental formula — a specific type of liquid nutritional supplement that’s made of amino acids rather than whole proteins. Along with the tube placement, we would also take away almost all foods by mouth.
Making this decision was something I had prepared for since his original diagnosis, but when it became reality it was hard. After all, what mom wants to take food away from her 8-year-old without knowing if he would ever get to have any food back? But it was also easy, because I knew my baby was going to have a chance to get stronger, gain energy, and get some rest from a battle his body had fought for years.
For others, the reactions varied from anger to sadness to claiming the doctors were using my son as a guinea pig.
When asked about how he felt at the time, Bradley explained, “I felt sad, curious, and a little happy.”
Our new life began 6 weeks later on March 4, 2014. We began a life revolving around feedings every 3-4 hours. Eating out came to a halt. Meal times for the family were altered. We started regular battles with insurance for coverage for all the supplies and formula (one can costs between $30-$50 and he goes through a can a day). And we waited anxiously to find out if the tube would work.
It is now one year later and I would not change the decision we made to tube-feed our child. Not only does Bradley have his energy back, he has also started growing again. In the past year he grew 2 inches and gained 10 pounds, and his facial features have started to fill out. We’ve even been able to add back a few foods so that he is now up to 15 foods he can eat by mouth. The best part, though: His body is getting the rest it needs so it can heal on the inside from all the years it spent attacking food as a foreign invader.
We still have a long road ahead of us, because the process of adding foods back is a slow one. Any time we add a food back, we face the possibility that it will cause his body to react and we will have to take that food away again. Right now there are days he goes through sadness and longing to “just be normal.” Those days will continue to happen and I will be right there for him when he breaks down in the evenings from the weight of it all.
Making medical decisions, especially life-altering ones, can be tough. The decision to take away food and rely completely on a specialized formula seems drastic, but for Bradley and others like him, it is their chance to do all the other normal things in life. To find out more about his disease, please visit www.apfed.org, the website of the American Partnership for Eosinophilic Disorders.
Do you know someone with Eosinophilic Esophagitis? Do you have a child with special medical needs? Have you had to make decisions in the best interest of your child’s well being that seem extreme to others? Share your story in the comments.