My name is Erin. Together with my husband, Matt and daughter, Addison, we make up Brian’s family. Here is his story.
Since birth, Brian has been beating the odds. He was born six weeks early and referred to as a “wimpy white boy” by the doctors and nurses. We were told to expect at least ten days in the NICU, if not more.
Brian would not hear of it.
Born on December 17, 2012, he seemed to be as anxious to go home by Christmas as his parents were. After a roller coaster of ups and downs, setbacks and successes, Brian was released on Christmas Eve.
Brian began life with a starting weight of 4lbs, 12oz. Although tiny, he was a fighter from the beginning and our Christmas miracle. He slept best when he was wrapped tightly in a blanket or being held by mommy. His development was slow, but we were told to expect that since he was born early. We did our best to help Brian put on weight by feeding him a diet of formula (mostly milk based) and breast milk.
Even with our best efforts, Brian remained far below the growth scale for height and weight. He suffered from minor issues, but it was not until we began to introduce foods that things began to stand out to us.
When Brian was nine months old, his developmental specialist remarked that she was not pleased with what he was and wasn’t able to do. She laid out a list of milestones he needed to reach by our next appointment. Also around that time, I took Brian to his pediatrician and pushed for allergy testing. Whenever he had formula with a soy base, he would immediately throw up and break out in hives. The same thing was happening with sweet potatoes and squash. I knew enough about allergies to know that something was not right.
I made an appointment with an allergist, but his pediatrician also wanted him to see an endocrinologist to rule out any growth issues. The allergy appointment was a success and we learned that Brian was allergic to more than we thought. We added milk to the list, which left us in quite the predicament where feeding was concerned.
Around the same time, the endocrinologist ruled out a growth issue, but suggested we see a gastroenterologist and meet with her nutritionist.
This “nutritionist” showed me the average growth scale and then showed me Brian’s, which was not even on the chart. She then looked me straight in the eye and said, “You have been nutritionally starving your son for the past ten months.”
Side note…whether you are first time parent or a seasoned veteran, NEVER let anyone make you question the care you are giving your child.
I was devastated. Was I really responsible for my son not growing or developing? I always believed breast feeding was best and tried to stick to it, while supplementing with formula to ensure weight gain. Now what was I supposed to do?
Frustrated and hurt, I spoke to our pediatrician again, who told me to ignore everything the nutritionist has said, and reassured me that I was doing everything I could. The allergist recommended a hypo-allergenic formula, Neocate, and we decided to focus on this and stop nursing.
Although Neocate is hypo-allergenic, Brian immediately reacted to the formula with vomiting. We returned to the drawing board and came away with another hypo-allergenic formula, Elecare. After only a couple weeks, Brian’s development skyrocketed and he was doing everything a normal ten month old should do.
The doctors decided he was not digesting the nutrients from the formula and breast milk, once they learned he was allergic to milk. Now that he was on Elecare, things began to look up; at least developmentally.