
When Balin Luft, of Columbus, Ohio, was three and a half months old, his mother, Kim, received a frightening phone call from a babysitter who was looking after him. At the time, Balin was suffering from a respiratory infection. The babysitter was worried. Balin was breathing exceptionally rapidly.
Taking note of the advice of Balin's pediatrician, the Lufts rushed their son to the children's hospital in Columbus where doctors finally performed the tests that would lead to Balin's diagnosis of type 1 (juvenile) diabetes. Kim explains, "When every test came back negative, Balin was put on a ventilator which
breathed for him for two days. The doctors decided to put him on insulin and that's when Balin began breathing normally again." As a result, the doctors diagnosed Balin with juvenile diabetes.
Balin began insulin shots at only four months old. But from very early on, Balin's parents felt that their son's diagnosis did not seem right. Frustrated because she knew something else was going on, Kim remembers, "We dealt with a number of 'I don't knows.' " Balin's glucose levels were all over the place and he was using an incredibly small dosage of insulin for his age.
This past spring, Kim came across a news brief in JDRF's Countdown magazine, which discussed a rare form of diabetes seen in very young children. Soon after, Kim read an article about Lily Jaffe regarding her initial diagnosis of juvenile diabetes and her later diagnosis of monogenic diabetes. She recalls, "I read the article and right away I just knew that this is what Balin had."
In order to find more information regarding monogenic diabetes, Kim and her husband used Google search and came across a story from the Chicago Tribune which mentioned Dr. Louis Philipson from the University of Chicago. On March 27, 2007, the family emailed Dr. Philipson in order to have Balin tested for monogenic diabetes. By the end of April the first test results were back. Balin had tested positive for monogenic diabetes.
Balin's test results were sent to the Lufts and to their local pediatric endocrinologist who was aware of monogenic diabetes but had not yet transitioned any patients from insulin to glyburide pills. He worked closely with Dr. Philipson in order to understand the protocol for the transition and what to expect from the treatment.
In May, Balin reentered the children's hospital in order to complete his transition from insulin to pills. The pills worked right away. It has been five months since Balin's last shot and his blood sugar averages 126 mg/dL.
For Kim and her husband, discovering that Balin had monogenic diabetes was life-changing. Kim says, "The pills are so easy. Our life has become so easy." Now, Balin takes a glyburide pill three times a day with meals and his blood sugar regulates itself.
Kim mentions how helpful it was for her to be able to contact Laurie Jaffe before Balin entered the children's hospital for his transition. "I had an idea of what it would be like and what I could expect." She offers her son's story so that other parents may recognize the symptoms of monogenic diabetes and have their children tested. As for Balin, needles scare him. Kim believes he is beginning to forget what he had to go through for the first four years of his life.
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