We do it for survival, for comfort, for pleasure. We eat. It’s vital part of life; it’s a routine part of life.
Imagine, however, that feeding your baby doesn’t help him grow or thrive at all. Instead, it does the opposite: it makes him sick. Suppose the sustenance you offer through a bottle or a baby spoon acts as a foreign invader in your baby’s body? And no one, not even medical specialists, can tell you exactly why.
That’s what happened to Abbie and Buzzi Shindler of Scottsdale soon after they became parents. Brayden Shindler, who will turn 2 on Valentine’s Day, has been diagnosed with eosinophilic disease, a rare immune disorder in which the body fights against food by forming white blood cells in the esophagus. Through dogged persistence and great love, Abbie and Buzzi searched for, and found, the help their son needed. Now, they are determined to help others by creating awareness about this disease.
Vicki: Did Brayden show symptoms right from the beginning?
Abbie: As a very young baby he never spit up, but he was always coughing and choking, and he had bad skin rashes. He did fine on breast milk, and other than those physical symptoms, he seemed okay. It wasn’t until we introduced him to solid foods that he began showing more symptoms.
Buzzi: It was around the six-month mark that Abbie and I decided that in addition to the breast milk we were going to start introducing formula, and that was going to facilitate Abbie’s transition back to the professional world.
Vicki: And with the changes in diet, the symptoms changed as well?
Abbie: We did the typical—kept him on a certain food for a few days. He would ultimately start projectile vomiting to the point where he would become dehydrated and end up in the hospital. We thought maybe organic foods might help, so we tried that as well. It didn’t really seem to make a difference.
Buzzi: We tried a number of different formulas. I remember Abbie and I having a lot of faith that each would resolve the issue—only to find him in a position where he would be projectile vomiting yet again.
Abbie: It was even more frustrating because Brayden loved to eat. He would vomit 20 or so times in 24 hours and he would loose three pounds overnight. For a 15-pound baby, that’s a lot of weight to lose.
Vicki: How did you discover the reason behind why he was so sick?
Abbie: At first he was diagnosed with reflux. But the reflux medications weren’t helping Brayden. My husband and I just were persistent with the doctors. We kept telling them that something else was wrong. We did research on the Internet. And then we learned that someone I work with has a cousin who has what Brayden has. I called our pediatrician to ask, and she said it was a possibility. At the time, I couldn’t even pronounce eosinophilic esophagitis and eosinophilic gastritis.
Buzzi: It was Halloween of 2007 when Brayden had his first endoscopy and biopsy. Ultimately, the results came back confirming eosinophilic esophagitis and eosinophilic gastritis.
Abbie: It was still an ongoing struggle. You can do patch testing to try to give you a guide as to just how allergic a child is to a certain food. However, some children don’t test positive. The only way you can tell is by giving them the food. For that reason, you feel like you are intentionally making them sick. That’s a tough feeling.
Vicki: What are you feeding him now, and how is he doing?
Abbie: We made an appointment at Cincinnati Children’s Hospital, where doctors do research on these disorders. Their recommendation was to keep Brayden off solid foods until his second birthday. This would give Brayden the opportunity to go into remission. But there is no guarantee.
Buzzi: The formula Brayden is on is made up of amino acids—proteins broken down. His body is able to digest that. Without this elemental formula, quite frankly, Brayden wouldn’t be able to survive.
Abbie: Since he’s been on the formula, he’s gone up in the growth charts.
Vicki: What have you learned over the past year of fighting for Brayden’s health that you’d like to pass on to others?
Buzzi: From the medical side, it is very important to have a great rapport with a strong pediatrician that you feel confident in. And, of course, making sure that family and friends are a part of what you are doing.
Abbie: You need to pay attention to the signs your child is giving you. You need to listen to what your heart is telling you, not always just what your child is being diagnosed with. In your gut, you know what is right. RAK
Vicki Louk Balint, of Phoenix, is the mother of Cory (26), Frankie (22), Robert (17) and Annie (16). Write to her at email@example.com.