Benjamin, Age 3

Location: Texas, United States

Challenges:Ben has always had issues with feeding. When we attempted to start him on solid foods as a baby, he would outright reject them and start banging his head against the back of his high chair. At 12 months old, we started him in feeding therapy. At the time, the specialist thought he would only need 6-9 months in therapy, but it has been 2+ years. This originally wasn't covered by insurance due to his diagnosis. Ben still struggles with feeding today, doesn't like chewing solids and prefers only liquids and purees. After having him assessed by numerous professionals in various medical specialties, there is no neurological or physiological explanation for his feeding difficulty. As such, finding appropriate care and solutions is very difficult.

Formal PFD Diagnosis: Yes

Age of Formal PFD Diagnosis: 12 months

Type of Insurance: BCBS PPO

Percent of monthly budget that goes to feeding difficulties: It's hard to say specifically. I will say that we spend an ungodly amount of money on Pediasure to ensure that he's getting all of his nutrients. Also, until our deductible ($700) is met, we spend $60 per session, twice weekly for his feeding therapy.

Does insurance cover any / all medical costs? No. Coverage for therapy starts after $700 deductible has been met.

Summary

Before having Benjamin, I had no idea that feeding therapy or pediatric feeding disorder existed. As a new mother, trying to navigate services was extremely difficult. We were pretty lucky to get Ben involved in services early, but that was because I proactively searched for resources. I think pediatricians being more familiar and understanding of this diagnosis would be immensely helpful for new mothers looking for answers.

What having coverage could mean

The cost of services being based on diagnosis has proved to be an obstacle, which was a hard pill to swallow as someone who works for an insurance provider. We have been fortunate enough to be able to pay for services out of pocket, but had to move in order to be closer to providers. I think having coverage for this diagnosis would alleviate the financial burden of getting services, but also the psychological burden, as it validates that your concerns are for a very real issue that is impacting your child.