Location: Ohio, United States
Challenges:Extreme aversion, GERD
Formal PFD Diagnosis: Yes
Age of Formal PFD Diagnosis: 2
Type of Insurance: Private Insurance
Percent of monthly budget that goes to feeding difficulties: Less than 5% now but it has definitely been more than that over the years and when she was an intensive program
Does insurance cover any / all medical costs? No
Morgan's feeding issues started almost immediately -- she was never a great eater and had a terrible case of Reflux that was initially managed and then returned with a vengeance. We tried to get her treatment at basically every hospital -- but no one seemed to know what was happening. We tried different treatments, therapies, invasive allergy testing... everything. Emily and Mark got up every 90 minutes throughout the night to "dream feed" Morgan through a bottle because she wouldn't eat when she was awake. We tried every pediatric dietician trick imaginable. And she still lost weight. Getting the NG tube that day felt like the worst day of Emily's life - it felt like total defeat. However, it bought us some time to get her growth and development back on track while trying to find a diagnosis and a cure for her challenges.
Emily got to work immediately on trying to find a "pediatric intensive feeding program" that might be able to retrain Morgan to eat and to develop a better relationship and confidence with food. Through many sleepless nights, tears and reliance on our wonderful network, we were led to a program and never looked back. We're convinced that if we would have had a PFD diagnosis earlier on, we would have received better direction, a much less stressful path to care, earlier intervention and more effective therapy.
What having coverage could mean
In the weeks leading up to entry to the intensive therapy was rather stressful for us as our private insurance was denying multiple rounds of requests for approval of Morgan's program. A few days before Morgan's start date, Mark and I had to confirm with the hospital that we would private pay for the program in case insurance would not process the exception. Thankfully, they made the exception right before she started!