Sidney, Age 11
Summary
At 6 months, Sidney started losing weight and was refusing feedings. This behavior increased when solid foods were introduced. Most of the tests the doctors conducted were normal for several years. It took us 3 years to finally get a diagnosis that helped him get a feeding tube and get formula covered by our insurance. The feeding tube, hypoallergenic formula, and new biologic medications were the treatments that really made a difference for Sidney, but the formula and biologic medications have been very difficult to get covered by insurance.
What having coverage could mean
If formulas and medications were covered more easily, it would have eased symptoms tremendously.