Silas, Age 2

Location: Illinois, United States

Challenges:NG tube at 4 months, sensory issues, oral motor planning delayed

Formal PFD Diagnosis: Yes

Age of Formal PFD Diagnosis: 18 months

Type of Insurance: BCBS Illinois

Percent of monthly budget that goes to feeding difficulties: Now we are fortunate to have all appointments covered. Before his diagnosis I spent hundreds and hundreds on bottle feeding webinars, different specialty feeding devices, different kinds of formula, appointments with a variety of specialists (chiropractor, pediatric dentist, speech pathologists, nutritionists, etc)) When Silas was on his NG tube the cost of even the medical tape, specialty formula, etc.

Does insurance cover any / all medical costs? Through the Early Intervention program Silas's feeding therapy, occupational therapy, and nutritionist appointments are covered


Silas's struggles with eating came at his 2 month check up when he started dropping weight percentiles. We were advised to supplement and I was happy to do that, something I had been hesitant to do with my first child, this time I felt fully prepared. After pumping some extra milk and trying to give Silas a bottle at 2 months old, it became clear that he was a bottle refuser. Although hugely disappointing to me at the time, I now wish that it had been as simple as that.

Silas never ended up taking a bottle, would barely breastfeed, and continued to drop percentiles quickly. We ended up in the hospital with him once he dipped below 3% and was diagnosed failure to thrive. That was the beginning of a long journey and search for answers. Silas was put on an NG tube at 4 months old and stayed on it until 8 months. The NG was by the far the most difficult and stressful experience of our lives, and we still hadn't found any answers. He had been through a variety of tests, bloodwork, even went under anesthesia to have an endoscopy done and nothing was ever found - a blessing and a curse to parents looking for an answer.

At 8 months Silas was able to drink from a straw, and once that skill was solidified we felt comfortable trying him off of the tube. Slowly but surely his intake increased, we were able to sneak in more calories from oils and heavy creams, and he was able to start taking more solids, he climbed back up percentiles. Silas still has difficulty with some textures, and delayed oral motor planning (he also has a speech delay), but through our work with a feeding therapist, occupational therapist, and nutritionist he has come light years beyond where he was. Knowing that PFD existed was HUGE - I finally was able to have the diagnosis we were searching for - I got connected with a Speech Pathologist through our children's hospital and she advised me to apply early on for the Early Intervention program in our state so that all of his therapies would be covered. I am so grateful to have been able to have a diagnosis early on (even though the time leading up to it felt like an eternity).

What having coverage could mean

We have been fortunate to have things covered through early intervention, but coverage beyond the age of 3 for kids who live with PFD would be invaluable. I am lucky to have a very flexible job that allowed me to be home and focused on feeding my child when it mattered most, but I know many people aren't that lucky and have had to leave jobs while piling on more medical expenses.