Location: Arizona, United States
Challenges:Raegan experiences dysphagia, reflux, multiple food allergies, and esophagitis (EoE).
Formal PFD Diagnosis: Yes
Age of Formal PFD Diagnosis: 1 year old
Type of Insurance: United Healthcare
Percent of monthly budget that goes to feeding difficulties: We spend several hundred dollars each month on specialty food items due to all of Raegan’s food allergies. We also purchase nutritional shakes because Raegan is unable to get all of her calories from solid foods alone. Raegan’s team of doctors are out of state so each year we travel to spend a week meeting with her specialists. While we are no longer meeting with her feeding therapist regularly, those appointments were all out of pocket in order to work with someone who was specialized in EoE.
Does insurance cover any / all medical costs? Even with insurance coverage, we have spent thousands of dollars covering medical expenses for Raegan. While we could choose to stay local for appointments or utilize in network feeding therapy providers, this would mean sacrificing Raegan receiving care that meets her needs in full, and I believe we would not be where we are today without having taken this path.
Raegan’s feeding issues were immediate. It started with a painful latch and her breastfeeding for an hour at a time, only to be hungry 30 minutes later. At about 2 weeks, she had a tongue tie release. This did help, but Raegan continued to feed for long increments and still seem hungry or she would only eat for 5 minutes and pull off screaming. Everyone kept telling us she was fine because she was gaining weight. Raegan never slept more than 2 hours at a time. Everyone said she would grow out of it or that we needed to sleep train. We were constantly told because she was a “happy baby” there couldn’t be anything wrong. The sleep deprivation was torture for everyone. By about 6 months, Raegan would barely nurse. I remember thinking there was no way she was getting enough after 5 minutes. At 7 months old, Raegan had her first significant allergic reaction to peanuts. It was terrifying. The next weekend she reacted to eggs and dairy. Feeding and sleep had begun to give all of us so much anxiety, it was crippling. Within the next couple of months, Raegan started losing weight and fell completely off her growth chart. I happened to mention to her doctor, around 9 months, that Raegan never swallowed any of the food she put in her mouth. Her pediatrician told me she needed feeding therapy, and the allergist recommended we schedule an appointment with a gastroenterologist. At this point, I was exclusively breastfeeding, my supplied had tanked, and we couldn’t find a formula that Raegan would drink. I felt trapped. She continued to lose weight. Just before her first birthday, Raegan had an endoscopy and was diagnosed with eosinophilic esophagitis. It took a few more scopes, medication, and diet management, but within 7 months, Raegan’s EoE was considered in remission. Shortly after, she began throwing up nightly. With reflux medication and diet management, we were able to curb that as well. Raegan still gets a significant amount of her calories from a nutritional drink, and we are still working to help her with being able to swallow some textures and try new foods.
What having coverage could mean
Coverage and access to providers who are educated in PFD and EoE are invaluable tools. Full coverage would save us thousands of dollars. Having the cost of specialty foods even partially covered would help immensely. Before her diagnoses, we spent hundreds and hundreds of dollars reaching out to so many specialists trying to find someone who could help us.