GASTRO ESOPHAGEAL REFLUX:
Stephen’s story

Our son Stephen was born with an immature digestive system. For the first five hours after birth, he cried steadily. He never wanted to lie down (not even to take a nap) and had to be held in an upright position constantly. This pattern of behavior continued through much of the day and night, but we were reassured by Stephen’s pediatrician that he had colic and that this worrisome behavior would dissipate by three to four months of age.

At four months, we were referred to a pediatric gastroenterologist. Our son was hospitalized for observation. An endoscopy indicated that he had a protein sensitivity (milk allergy). A milk scan showed his stomach did not empty (the doctor did not know why) and he had gastroesophageal reflex. He was given a medication (Propulsid) that would cause his stomach to empty. The medication exacerbated his symptoms and he screamed wildly. We stopped giving him the medication, which was later taken off the market because it causes heart problems.

From five months to a year old, it was recommended (each month) that we try to introduce solid food into our child’s diet. Each time we tried, Stephen would eat hungrily, but was in great distress afterward. Each time this happened, we were told to wait another month.

At 11 months, Stephen was hospitalized and given a pH probe to determine the severity of reflux. The doctor requested that my husband and I hold him down while he inserted a tube through his nose to be positioned into his stomach. We held our baby (who was not sedated) in horror watching him helplessly cry and struggle. An X-ray was taken that showed the tube was not placed correctly in his stomach. The doctor ripped the tube out as well as the adhesive tape holding the tube onto his face, leaving our child traumatized and with a bloody face. Within minutes, the exact procedure was repeated and the torment was unbearable. The results of the test indicated Stephen was experiencing problems with reflux. The doctor suggested that in the future it may be necessary to consider surgery in which his stomach would be “tied in a knot” as a prevention for reflux.

At 12 months, a milk challenge was performed at the gastroenterologist’s office. The doctor stated Stephen was no longer allergic to cow’s milk. We were told not to deprive our child of cow’s milk or milk products. Within an hour of returning home, our child was wheezing. I called the gastroenterologist and was instructed to continue giving him milk anyway. The nurse insisted he was not allergic to cow’s milk. After a day of gasping for air, we took him off cow’s milk and gave him soy milk, which had no deleterious effects.

At 13 months, we were extremely troubled because our son could not tolerate solid foods. We could hear his stomach rumble from being empty. Stephen still had to sleep in an upright position in order to get any rest – usually resting his head on one of our shoulders. He awoke constantly through the night and never took naps. I contacted Boston Children’s Hospital, and at 14 months, Stephen was seen by a pediatric gastroenterologist who suggested that Stephen be taken off all medications (Regland and Pepsid). He suggested we introduce some very bland foods such as pasta to his diet. He contacted us often and took calls from us whenever necessary. He also warned us to never consider surgery for our son as a way to cure his reflux. Everything gradually started to improve and our child was tolerating solid foods! The new physician suggested that Stephen’s digestive system was maturing.

By 18 months, Stephen could tolerate most foods. By 2 years of age, reflux symptoms were recurring. Stephen began attending birthday parties but would suffer the after-effects of cheese pizza, cake and ice cream. We could hear him gulping in his sleep. When he woke up in the morning, his pillow was soaked and smelled like vomit – a sure sign of reflux.

The thought of our son being put through invasive testing again sickened me. My sister, Meg Wolff, had been practicing macrobiotics for quite some time and she made a suggestion. I remember her telling me, “You’ve tried everything else and nothing has worked. Why not try the nutritional approach?” We weren’t convinced this would be the answer, but we were desperate to find a way to help our child get better. As my family and I gradually adapted to the macrobiotic diet, we noticed improvements. We all began to feel better than we had ever felt before, both physically and mentally. We also sought alternative medicine for our son. With the help of a kinesiologist, we found that Stephen had both a wheat and milk allergy. We have been practicing macrobiotics for years, and it has been the answer to our prayers. After six months on a macrobiotics diet, at age 3, Stephen was sleeping comfortably in his own bed throughout the night. Today, Stephen is a healthy 5-year-old who has adapted very well to eating whole foods and loves them. His favorite meals include lentil loaf, black beans, brown rice and fish. Snacks include kale, carrots, parsnips, etc. – a large variety of vegetables, which have become a way of life – which I find exciting – and there is nothing he won’t try, even seaweed!

Stephen also experienced a speech delay which some doctor’s theorize can be related to lack of solid foods early on. At 2 years old, the only sounds he was able to produce were one-syllable utterances. Our son’s first speech therapist diagnosed him with dyspraxia, telling us that our child would never talk. We were devastated. We consulted with another speech therapist who worked with our son and us for three years – she was amazing and so was Stephen!

Our son is now a very articulate, gregarious and inquisitive child speaking as well as (if not better than) children his own age. Stephen also required occupational therapy (at the suggestion of the speech therapist) beginning at age 3. He was hypersensitive to loud sounds, bright lights, haircuts, strangers and crowds, etc. – he used to scream and become extremely apprehensive when these situations arose.

When he was first tested for OT, we were told that he had problems with sensory integration, his vestibular system, fine and gross motor skills, etc. – a big list with a lot of difficulties. It was suggested that he may benefit with the help of a developmental nursery school. Nine months later, he was retested and the therapist looked at him in wonder. She said she had never had a child pass all the tests before and that he would no longer qualify for occupational therapy, telling me that we must be very proud of him. Stephen attended a regular nursery school and made rapid progress. By 3, he was able to write his own name (terrific fine motor skills!) and is now reading on a first- and second-grade reading level.

Stephen just began kindergarten at our local public school and is doing fantastic. He takes the bus (with no reservations), loves the companionship of other children and reports daily that he loves school. We have no doubts that diet has been one of the biggest contributors to his health and well being!

This was written five years ago. Stephen is now (2007) in third grade and continues to thrive.