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Oliver’s story At six months, when regular foods were introduced, my son started to throw up. When he tried cow's milk, vomiting became constant, no matter what other food was presented. His pediatrician originally thought it was GERD, pretty common under age of 12 months. However that was soon eliminated. Next, celiac disease, since it runs in our family, but the blood test came back negative. When he was 15 months old after more tests and no answer, his doctor, referred him to Children's Memorial Hospital to the GI dept. for further testing. He underwent numerous blood tests with no conclusive results. When this path was exhausted, an x-ray of the upper digestive tract was ordered and it was discovered that he had a swollen esophagus and upper stomach. An endoscopy with biopsies followed that confirmed the Eosioniphilic Esophagitis diagnosis. Oliver was 19 months old by then. This sounded so complicated and unknown that I did not react to this news at all - until I did some research on it on line. Still, very confused at first, we put him on the elimination diet, where at first he did not receive any proteins from six food families of most allergic influence: milk, eggs, wheat, fish and shellfish, soy, peanuts and tree nuts; then the foods are reintroduced to his diet one at a time. The first step of this diet was followed by an endoscopy with biopsies, which proved the diagnosis - swollen areas cleared with no eosiniphils/PHF. We were on the right track. Next, one at a time we started adding foods, and for Oliver it was Eggs. Not even half way into this food trial, Oliver stopped eating completely. We tried many different ways to trick him into accepting food, but nothing worked - after 5 weeks, an Ng tube was inserted and continuous feeding started. Meanwhile, it was suggested that due to malnutrition Oliver has became developmentally delayed and physical, occupational, and speech therapies were initiated by Early Intervention services. PT and OT were moderate issues; however Oliver developed a severe food aversion. It took over a year of multiple speech therapies with a focus on feeding for Oliver to eat comfortably again. The elimination diet went fine; doctors suspected he would outgrow the disease by then....until we tried milk again. Biopsies showed 40 eosinophils/PHF in the mid esophagus and 80 in distal esophagus. It took us many months to completely clear his esophagus after the trial. Now, 4 years old Oliver is still on the elimination diet. Because of his feeding issues, his mouth muscles are not well developed, his speech is impaired. Speech therapy is currently our main issue, since he is very talkative and gets frustrated when he talks, repeats multiple times and no one can understand him. I can imagine his frustration specially talking to his peers at school. On the other hand speech is mostly an issue presently since the EE has been controlled pretty well. Eosinophilic Esophagitis is a very difficult disease with so many side effects one cannot imagine. If it was not for the team of very committed doctors, nurses and nutritionist Oliver would not be growing and developing as well as he is right now. Jimmy’s Story Ever since our son was a baby he suffered from a variety of medical issues that seemed to be unrelated to Eosinophilic Esophagitis (e.g. asthma, infections). By the time he was 9 years old Jimmy was experiencing severe nausea and burning in his esophagus every time he ate. After an initial diagnosis of acid reflux, we attempted to address his reflux with 5 medicine trials to no avail. We met with a pediatric gastro-intestinal specialist who insisted that it was acid reflex and nothing more. After it persisted, we felt strongly that our son needed an Endoscopy to find the source of the problem. Sure enough, after the endoscopy, the report came back indicating that he had a high eosinophil count in his esophagus. While the search was underway, Jimmy was progressively deteriorating over a period of 2 years. He was losing weight constantly sick to his stomach and had stopped growing. Towards the end of 5th grade, he spent many days in the nurse’s office, visited the doctor at least twice a week and missed a great deal of the last part of the school year. The most challenging part was that the teachers, nurses and administrators did not believe that he was really sick. They attributed it to stress. By the middle of that summer, he was constantly sick and writhing in pain every time he ate. He was afraid to leave the house. On a scale from 1 to 10 (10 highest for pain), he felt an 8 most of the time, and 9 or 10 after he ate. By July of that summer he came to us in tears and begged us to take him to a hospital for additional tests. He said, “I have no life; please put me in the hospital, so they can find out what’s wrong with me”. We were incredibly fortunate to find one of the leading physicians, his nutritionist and his staff in this field here in Illinois. This team put our son on the six elimination diet to help find out which foods he was allergic to. After determining what he was allergic to and monitoring his food intake, he is now growing and gaining weight as a normal 13 year old boy. It is because of this remarkable team working tirelessly to help our son, that he has some sense of normalcy in his life.
Max's Story Two Dollars. As a youth growing up a few miles West of Wrigley Field, that was my biggest concern. Do we spend the extra two dollars for the premium seat at a Cubs game or do we save the money to spend on hot dogs and peanuts. I’m actually not sure if it was two dollars, but that’s what memory tells me it was. Being the parent of a child with severe food allergies and “EE” disease, I know that is one decision my son will likely never be concerned with and a decision I will not have to make taking my son to a Cubs game, because he cannot go to a Cubs game. Fact is we cannot take him to a Cubs game nor a White Sox game or to most restaurants because he cannot be around peanuts and he cannot eat foods that most people consume without thought or incident. When Max was less than 18 months old, he started getting sick, had bad eczema and would throw up three to five times a day. It wasn’t until one day, when he could not stop vomiting that we took him to the emergency room to have him checked out. After four days and four frustrating trips to the emergency room, where the doctors could not stop the vomiting or the diarrhea, we were referred to an allergist. Max was subjected to a battery of tests that told us that he had multiple food allergies. On top of that, we were referred to a GI doctor at Children’s Memorial Hospital in Chicago who diagnosed Max as having “EE” disease. We had no idea what that was and had difficulty pronouncing it, let alone spell it, if someone asked us what the diagnosis was. Since 2003, Max has been to more Doctors and more hospitals and has endured more procedures (thirteen upper endoscopies), than I have in my entire life. He was put on a six food elimination diet and when his health worsened and he was not growing we removed all food and went on an elemental formula diet. Over the past five years we have slowly reintroduced foods, some went well and others made him sick again. My son is still on an elemental formula, we are still introducing foods and fighting to find a balanced healthy diet so he can focus at school, participate in sports and live up to his fullest potential. Since his diagnosis and on-going treatment(s), our family has had to be reeducated on cooking and shopping. My wife spends hours researching “Max safe” foods through the Internet, in the stores and on the telephone. She has developed a network of support and is an active fundraiser for EE research. To say this has changed our lives is an understatement. With Benadryl and Epi-Pens at our side at all times, we appear to others as the poster adults for overprotective parents. But fact is, touching or breathing in certain foods like peanuts could cause Max to have a life threatening reaction. If this ever happens, we have seconds to get an injection of epinephrine into him and minutes to get him to a hospital. The silver lining to all the frustrating aspects of learning about and dealing with food allergies and “EE” disease is the strength and understanding of our son. Over the years, Max has learned what he can and cannot eat and what he can and cannot be around and I attribute the understanding of his life-style to being diagnosed at a young age and the time my wife spent (and still spends) educating him on his limitations and finding ways to make almost anything possible.
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