Emerson, Age 5

Location: Arizona, United States

Challenges:Tongue tie, lip tie, bucaals, high palate, food allergies, dysphagia, laryngeal cleft, silent reflux & aspiration, tracheobronchomalacia, ARFID

Formal PFD Diagnosis: Yes

Age of Formal PFD Diagnosis: 4/5 months

Type of Insurance: BCBS of AZ

Percent of monthly budget that goes to feeding difficulties: 30%

Does insurance cover any / all medical costs? Some

Summary

Emerson choked and struggled with swallowing during feeds. I also noticed that her breathing wasn't normal. She had tongue tie, lip tie and bucaals along with a high palate-which made nursing impossible. We struggled with her pediatrician for a few months dismissing my concerns until she started to lose weight around 3/4 months. Emerson ended up admitted to the hospital with failure to thrive. Fortunately I worked for a therapies agency and had a relationship with some feeding therapists that were able to help diagnose. She was diagnosed with aspiration and silent reflux and food allergies at the age of 4 months. We worked a few times a week to get Emerson to eat, which was still a struggle. I could barely get 4oz into her. We were advised by her pediatrician to just force feed her, which in turn added to her oral aversions. After one of the many hospital stays and rapid weight loss, Emerson was sent home with a NG tube. Fast forward to 6 months old and a few hospital admissions later we had a scope done and FINALLY received a diagnosis. Emerson had a type 2 laryngeal cleft, dysphagia, and tracheobronchomalacia. By the time Emerson was 9/10 months Emerson received a G Tube. We were in constant therapy, and had spent most of her first year of life living in the hospital. Emerson is now 5 and fortunately has outgrown a lot of her original Feeding abnormalities. However we are on a new journey called ARFID.

What having coverage could mean

Our coverage was pretty great because Emerson would be hospitalized at the beginning of the year usually and we met our deductible so we wouldn’t owe a lot. But if we were to start feeding therapy at the beginning of the year it would not be affordable-to anyone I believe. Cost of special formulas, or even supplies is about as well. Emerson needed to be on Ensure juice (only thing she’d drink for calorie intake) and insurance refused to cover it. I would order it off Amazon and it was $50 for a case of 12. Imagine spending that once a week! Now that we’re managing her ARFID none of that is covered. Her psychiatrist nor her psychologist are covered. We pay about $650 per month just to see those two specialists. It doesn’t cover her meds or all of the special food items we need to purchase.