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    When Food Becomes the Enemy: A Video Worth Sharing

    August 28, 2011 •  8 comments.

     •  Blog, News

    Written by Chanda Killion Organ

    We all have a story…this is ours.

    Jake and Carson, were both diagnosed with a disease called Eosinophilic Esophagitis. EoE is an incurable GI disease, where the body actually attacks food. In this “attack” the boys both experienced horrible pain through-out their GI track, and actual damage in the tissue in their esophogus. Food became the enemy.

    Jake(now 10) was first diagnosed with EoE right before turning 7yrs old. He had a few food allergies when he was younger, peanuts, tree nuts and eggs(outgrowing wheat). In Oct of 2007 Jake became allergic to just about every food he was eating. He would be doubled over in pain, clutching at his stomach, when he ate. After new allergy tests were performed, we learned he was positive to just about everything. With the pain continuing, we were able to get him into a GI who was treating Carson, at Children’s Hospital. A scope was performed, biopsies taken, and he was also positive for EoE. Since Jake had run out of safe foods to eat, it was decided that inserting a feeding tube into his nose and putting him on a hypo-allergenic formula called Neocate, was absolutely necessary. So Feb 2008, he was admitted to Children’s Hosp, and an NG-tube was placed. He was taken off all-foods at that time, to get his body to stop attacking itself, and allow it to heal. Things went really well, so my May of 2008 he got his G-tube surgically placed. He also got his EoE into remission, which was our absolute goal. Jake still struggled that first year, his asthma was out of control, but by Jan 2009, he was able to start doing food trials, and to this date, he has passed 4 foods.. A food trial consists of eating a food, every day for 2 weeks. If no eos start an “attack”, it’s considered safe. Jake has trialed approx 15-18 foods. We are actually to the point that there is nothing left to trial. Because of his extensive list of food allergies(we lost track at over 40 foods), our trialing has been limited as of late.

    Carson(now 7 1/2yrs) was actually diagnosed first with this disease. Right off the bat, Carson struggled with horrible reflux and a milk allergy. Causing me to be very careful with nursing, even cutting milk protein(all dairy) out of my diet. When his reflux didn’t improve at age 2, his GI decided to do a scope to see if anything was going on. They found he had a hiatal hernia, which was causing food and fluid, to shoot back up his esophagus. We chose to have it repaired with surgery, a Nissen Fundoplication. The first 6mths after surgery, Carson was doing fabulous. But quickly started going down hill, and experiencing horrible stomach pain when he ate. Thinking something was wrong with the Nissen, the GI again, scoped him to take a look inside. We lucked out, because this GI had also been aware of a disease called EoE, and he decided to take some biopsies. Carson had some damage to the tissue in his esophogus, and when the biopsies came back positive for EoE, I had no idea what we had in store. With Carson, who was allergic to a handful of foods(milk, soy, eggs, peanuts, tree nuts) did more allergy testing, adding beef anf pork to the list, and was put on a swallowed steroid called Flovent. He did really good for the next year, and we thought the EoE was gone. But there is no cure as we found, and right before age 5, his symptoms came back worse then before. We struggled at this point. We tried more Flovent, it didn’t work. We did more allergy testing, pulling the top 7 allergens in addition(leaving wheat)…we added corn, turkey, chicken, and even did a new steroid medication called Beudesonide Slurry. He scoped clean on the steroids, but his symptoms kept getting worse and worse. Now at age 7, we decided to take the same course of treatment as we did with Jake. And in Oct 2010, we removed all foods from Carson’s diet, and he attempted to drink the same formula that Jake got through his tube. Struggling to drink enough of this rancid tasting formula, in Dec 2010 Carson was admitted and an NG-tube was placed in his nose. We saw immediate improvement, and it was decided to go ahead with G-tube placement. We are hoping since Carson doesn’t have the amount of allergies to mess with(he now tests negative to all but milk and tree nuts) that he will be able to trial more foods. Not all EOS(Eosinophils) triggers are allergens though. So that is why it is so important to test and trial each food as you go. To build a safe diet in hope of keeping the EOS as bay.

    Even though Jake and Carson suffer from this terrible disease. Both boys try their hardest to just be normal kids. Jake has continued to play flag football, and just recently, finished up his 2nd season of tackle. He also has played baseball and just recently, basketball. He loves BMX bike racing, rock wall climbing, and just about anything “physical”. Carson has done flag football, baseball and is very interested in signing up for golf. Both boys attend public school and just enjoying running around being boys.

    Everyone has a story. And this is ours. To find out more about Eosinophilic diseases, visit www.apfed.org for more information. We also made a youtube video of EOS Awareness.

    Please watch this and share it with those that you love.

    American Partnership for Eosinophilic Disorders
    www.apfed.org

      8 Responses to “When Food Becomes the Enemy: A Video Worth Sharing”

      1. Mike

        I was recently diagnosed with EE, too. In skin tests, I was positive for allergies for about 65 or so out of 100 tests, and those of us who have gone through this know how inaccurate skin tests can be.

        I’m currently on a seriously restrictive diet, too, though I did not have the feeding tube. I would be interested in any types of recipes you may have, since there are only so many ways you can cook the same 20 ingredients.

        Thanks, and good luck.

      2. AllergyKids

        Mike,

        Thank you for sharing your story. If you want to provide a list of the 20 ingredients that you can use in recipes, we can see what we can come up with. Your work to restore your health is vital, and you are a beacon of light, just like the author/mom of this article, to others who can do the same.

      3. Teresa

        Our daughter as Colonic Eosinophilia,mitochondrial encephalomyopathy complex I def, and Methyltetrahydrofolate Def and something yet undx’d that causes systemic neurological responses to most foods and inactive ingredients in medications. DIET has not only changes her life but has made it possible. She was on Elecare orally from 4 months of age until 22 months.Elecare was begining to fell and after a train wreck of a food challege would no longer take it. She can now eat about 20 foods. Sorry no recipes cook by taste and smell.

      4. These boys and your family are angels, you are an inspiration to all of us. I have added information about Eosinophilic Esophagitis and this video on my blog to help bring further attention in the hopes that someone else who is suffering can gather the strength and courage I feel one receives while watching this video. Never say never. :)

        • AllergyKids

          Thank you so much for the work that you are doing, Debbie. Together, we can affect remarkable change.

      5. For example, walk, walk, take the stairs not the elevator, the car stopped at a place far away from your destination and then walk, walk the dog, and so on.

      6. Jennifer Harris

        Thank you all so much for the information. My child has recently been diagnosed with EE and EGE and I am at a loss for what to do. I am up this morning to medicate him and trying desperately to figure out how to pack a school lunch for him. He is allergic to milk, wheat, soy, potatoes, sweet potatoes, rice, eggs, almonds, nuts, corn. I have a bunch of veggies and fruit all of which my son flat out refuses to eat.

      7. Victoria Weslek

        Has anyone looked into whether ther is a connection between a person’s exposure to GMOs and the development of EoE?

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