Location: North Carolina, United States
Challenges:Juniper's mealtime challenges include an extremely limited quantity and variety of foods which she will accept and the overall duration of time spent on each meal.
Formal PFD Diagnosis: Yes
Age of Formal PFD Diagnosis: 6 months
Type of Insurance: Blue Cross Blue Shield
Percent of monthly budget that goes to feeding difficulties: Upwards of 20% when attending an intensive feeding therapy program
Does insurance cover any / all medical costs? Insurance covers some costs, but as all PFD parents will understand it has required significant effort to get whatever coverage we have. No feeding clinics are available in-network and it has required substantial campaigning to win exceptions to have out-of-network providers covered.
Juniper was born small for gestational age, but we were assured that most SGA babies catch up as they grew. Instead she almost immediately exhibited an aversion to nursing and her weight continued to falter. At 6 months we knew that this was not something she would "grow out of" and sought the aid of a pediatric gastroenterologist.
Now more than 2 years and several endoscopies later we understand that food allergies passed on through nursing were developing ulcerations in Juniper's intestines and causing her incredible pain. After removing the top 7 allergens from her diet the ulcerations are healed, but the behavioral aversions to feeding that she experienced since birth still remain. Throughout her life Juniper has been helped by an incredible cast of feeding therapists, pediatric GIs, physical therapists and multi-disciplinary feeding panels, but in her case weekly therapy sessions just weren't sufficient. At present Juniper is attending an amazing 8 week intensive feeding program which we hope will help her make permanent progress to address her feeding challenges.
What having coverage could mean
PFD is something that most well-meaning friends, family and even healthcare providers simply don't understand, and we as parents have been largely responsible for navigating this diagnosis on our own. Had we been aware of PFD resources and programs earlier, and if we would have been empowered through coverage and availability to attend an intensive feeding program sooner, I am certain that Juniper would be further along on her journey to wellness.