Location: Arizona, United States
Challenges:Jax has severe oral aversions, GERD, low muscle tone - at this time he is taking 100% of his food and water intake by mouth.
Formal PFD Diagnosis: Yes
Age of Formal PFD Diagnosis: Jax was identified as having feeding challenges at 8 days old, but we received the official diagnosis at 8 years old.
Type of Insurance: Private and State-funded
Percent of monthly budget that goes to feeding difficulties: 5%
Does insurance cover any / all medical costs? We are lucky that Jax's insurance covers most of his medical expenses.
When Jax was born we learned early on that he had feeding challenges. His food struggles were seen as a connection to his Down syndrome diagnosis and heart condition, rather than as a stand alone diagnosis. Jax was first diagnosed with "Failure to Thrive" at 8 days old, and again at 4 months old, which is when we received his NG feeding tube. Over the next few years, Jax had open-heart surgery, a tongue tie procedure, was placed on various medications for his severe acid reflux, had countless hours of feeding and occupational therapy, a g-tube placement, and countless sessions of feeding practice at home. While I know the doctors and therapists were trying so hard to help Jax progress, I can't help but feel like if we had been able to see his PFD as a stand-alone diagnosis, we would have been able to look at the behavioral aspect and emotional fears of food. Over the years, we have engaged in numerous methods to support Jax's feeding including: outpatient feeding programs, private feeding therapy, feeding therapy with a state agency, admitted into an intense in-patient for 1 of the 19 days (then we had to return home because of the COVID shutdown), and we have continued to have daily practices at home. Over the last year, we have seen Jax get more and more comfortable with food. While he is still taking 100% of his daily food and water via g-tube, he is starting to explore touching, tasting, and putting various foods in his mouth. He is laughing at meals, and engaging in mealtimes with his family and at school with his friends. Our family has a long road ahead in our journey, but we are learning the importance of celebrating all positive moments with food, no matter how big or small.
What having coverage could mean
We have been very lucky that Jax has received coverage for almost all of his therapies and most of his medical expenses due to his other diagnosises. But when we have needed more intense therapy or other food options, we have to fight with the insurance to understand why it is necessary. Most of the insurance agencies do not understand the importance of the early interventions needed with PFD that can make long-lasting effects.