Taking Away Food :: The Decision to Tube Feed My Child

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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 on meet the teacher night, five months after he got his g-tube.

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.

Bradley practices tube feeding on Rodney Rabbit just two days before surgery to get his own g-tube placed.

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.

One year later…first feeding of the day and Bradley sleeps right through it.

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.

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Brandi Cade is a Christian, wife, mom, and Instructional Facilitator at a local elementary school. She is the youth coordinator and also teaches Sunday School for K-5th graders at her church. She married Mark in July 2004. Together they have 3 children: Bradley (10), Tori (8), and Aubrey (4). Bradley and Tori have taught her about parenting children with multiple medical needs. Fortunately their youngest is simply full of life and keeps Brandi and Mark on their toes that way. Brandi holds a BA in Early Childhood, an MA in Curriculum & Instruction, and two Certificates of Advanced Graduate Studies in Doctoral work in Instructional Leadership and Educational Leadership. As an Instructional Facilitator she works with teachers as well as students on best practices for learning in the classroom. Brandi loves the beach, music, reading, writing, blogging, sewing, and her new found interest: Bible journaling. Her newfound interest lead her to create the group Scripture Sketchers for local Bible Journaling fans. She hopes to turn this into a business within the next year or two. She is also a Beachbody Coach and works as an Independent Damsel Pro for Damsel in Defense.

10 COMMENTS

  1. My nephew has this disease. Right now they are in the process of removing foods and adding others back. At this point he isn’t facing tube feedings, but we know its always a possibility.

    • Katrina, I hope your nephew is able to get his EoE managed via elimination diet. Not sure how you all or his parents handle things, but one thing I had to learn years ago…we can’t focus so much on what our children can’t have (one of my daughter’s also has multiple food allergies), but we have to look at what they can have. We would get really down and frustrated when we spent too much focus on the can’t. Prayers for you nephew.

  2. I have three boys and two of them have EOE. My 10 year old has been able to reintroduce all but 5 foods. Unfortunately my 5 year old has been fighting this battle for 41/2 years and still can only eat 4 foods. Our insurance covers NONE of his formula which is very costly. This is what keeps him alive. It is distressing to eat out rarely and explain to everyone why we have to bring his food. We travel from SC to Ohio every three – six months for endoscopes. It is so hard.

    • Julianne, I always had in the back of my mind that if I had to I would travel to Ohio. Our first GI doctor locally was not getting us answers. Thankfully Bradley’s allergist in Charleston has patients with EoE and we were able to find a GI at MUSC. Trips to Charleston are hard enough sometimes so I can’t imagine if we had to go to Ohio. Not sure of your insurance, but feel free to email me if you want to talk more about how we get things covered. [email protected] We have to prove to our primary, private insurance every six months and go through appeals, but we manage to get it covered. He is also on Medicaid for disability based on ADA which helps with the rest. Prayers to you and your family. We are about to make the move to a feeding pump for some feedings, just waiting on all the red tape.

  3. My son was diagnosed with EoE at the age of 2. He is now 7. After a change in GI Doctors (we now go to one of the top Doctors in the country for EoE, in Greenville, SC) he’s doing fantastic. We started out with the top 8 free plus green beans, gluten, and sesame. We have challenged eggs, dairy, fish/shellfish, and now we are doing soy. He failed Dairy but has passed the others so far. It’s such a tough diseases! It breaks my heart that he doesn’t feel like a “normal kid”. Prayers to you and your son. And hoping to find a cure!

  4. I am so happy I found your article tonight! My daughter was diagnosed with EOE in August 2014, she is 9 years old! Finding out she had EOE was unusual as she had a double scoping and the doctor came back with it believe it’s EOE I will confirm the biopsies and then let you know! It was confirmed 3 days later! It has progressively gotten worse. She has severe abdominal pain (epigastric pain) and many of the other common symptoms. She has no sleep schedule anymore due to the pain and is no longer attending school any more! Quality of life for her has declined, she’s in pain continually . I don’t feel her treatment plan is working, we just switched GI specialists as I felt he wasn’t listening to me! More endoscopies to come, currently on the allergy diet of the 6 most common allergens being removed from her diet, haven’t noticed a difference!
    I too am really starting to think we are heading in the GI tube as everything she eats causes her severe agonizing pain for hours!
    I long for a day that I don’t have to watch my daughter suffer agonizing pain, that she can dance again and have a more normal childhood!

    • Megan, I am so glad you came across the article as well. It is very hard to watch your child continuously suffer. My son went from an energetic little boy to one who was in pain, would come to my classroom in the middle of the day to nap because he had no energy and just couldn’t function like a little boy should. Since the G-Tube he is now a different child. Full of energy, sass, and all the other stuff that comes with an almost 10 year old boy. Keep pushing and advocating for your child. Don’t get me wrong, we still have rough days and time periods, but they are much different than before. Since this post in April, my son has been through a set of scopes that came back BAD! All the foods we had added back in since October 2014 ended up doing damage. With further testing we found out that he is also allergic to oats, rice, all seafood/fish, and white potato. We had to take all those away and are now waiting anxiously to see if he has healed enough to test any more foods. All this to say, it is a long process, but the feeding tube was the best thing for us. I pray you find answers and your daughter gets on a healing track soon so she can once again enjoy life.

  5. My son was initially diagnosed with EoE, we battled for six years with removing foods fro his diet hoping to find the answer. In second grade aloe he had lost 20 pounds, suffered fro headaches, dizziness, and so many symptoms. A year and a half ago we discovered that the source of his problem was celiacs. We are so pleased to have found the source of the problem, it’s made a world of difference, he is a different child. Hang in there, it’s tough, you will find the source too.

  6. Thank you for this post. My son has been sick for six months and we very recently received the diagnosis of EoE and chronic gastritis. It has been heartbreaking to watch my nine year old extremely active boy change drastically into a suffering and fatigued child that has lost over 35 pounds. I have felt such guilt for thinking, “Maybe he would be better off with a feeding tube.” But, your article gives me hope in trusting my gut. I simply want my child to thrive again; not just barely survive. I’m praying for miracles as we begin our diets and further endoscopies. Saying a prayer for your sweet family tonight as well.

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