At 13 months old, Brandon Hood was diagnosed with a rare disease called Eosinophilic Esophagitis/Gastroenteritis (EE/EG), a disease which is estimated to affect 1 in 10,000. This disease causes certain white blood cells (eosinophils) in Brandon’s digestive tract to attack the tissue in his esophagus and intestines anytime allergy-triggering foods are introduced. These attacks cause his digestive tract to become swollen and irritated to the point that it is nearly impossible to tolerate any food or drink by mouth. Compounding these problems are the fact that Brandon has severe allergic reactions to ingredients that are found in most food products, namely milk, eggs, wheat, soy and peanuts. Brandon’s diagnosis was made when, in March 2005, he began to refuse any and all fluids by mouth. He would still eat baby food sparingly, but clearly was not getting the nourishment he needed. After a few days, he got dehydrated badly enough to require hospitalization. After 8 days at Children’s Hospital in Dayton with no explanation of what was happening, we finally got a diagnosis – EE/EG.
The next five months consisted of a carefully regimented diet of foods that we hoped he would not react to. In August, an endoscopy was performed to check the condition of his digestive tract. The results showed that the condition had worsened. The decision was made to insert a feeding tube into his stomach. Currently all food and medication is given to him through this tube – nothing by mouth at all. His diet consists of one thing – Elecare, a simple amino acid based formula. His only simple pleasure is an occasional home-made lollipop which is made from sugar and water only.
Brandon has been sick for most of his life. He has had numerous ear infections from the time he was born. In October of 2004, he had ear tubes placed, but they have had little or no effect on the number and severity of these infections. He has also been diagnosed nine times with tonsillitis. On September 20, 2005, he had his tonsils and adenoids removed. He was also diagnosed with asthma in November of 2005 and now gets breathing treatments. These facts have led some doctors to conclude that the eosinophilic disorder has also affected his immune system.
The hope is that with proper care and treatment, Brandon will be able to lead a fairly normal life. Right now the plan is to feed him through the tube until the damage to his digestive tract heals. Once that happens, we can begin food trials, introducing one ingredient at a time by mouth to figure out a diet that he will not react negatively to. The best case scenario estimates so far are that it will be several years, if ever, before he has the chance to become independent of the feeding tube.
On top of the obvious physical ramifications of this disease, Brandon is getting to the age that he is starting to feel some of the social affects as well. Halloween was an interesting time this year. How do you explain to a two year old that he can go trick-or-treating, but he can’t have any treats? Our other three children have done a very good job of not eating in front of Brandon, but there is no way to keep him completely isolated from food. He is old enough to know that he is missing out, but not old enough to explain to him why. It is very sad and very frustrating. And without a cure, The future won’t be any easier. Thanksgiving, Christmas, birthday parties, cookouts – all the food-centered social events that the rest of us take for granted – will most likely be very difficult for Brandon.