Location: Arizona, United States
Challenges:My son has Eosinophilic Esophagitis and multiple food allergies. Before his diagnosis, he would only drink clear fluids and only eat a small amount of food.
Formal PFD Diagnosis: Yes
Age of Formal PFD Diagnosis: 3 years
Type of Insurance: UMR
Percent of monthly budget that goes to feeding difficulties: Currently, a small portion, but annually, we have to pay out of pocket for a scope and allergy testing.
Does insurance cover any / all medical costs? It took us several times of requesting coverage different ways, but now, most of his necessary cost. There were times during our journey when we were paying thousands of $$ out of pocket each year.
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.