Occasionally we invite guest bloggers to write about their experiences in the field. Steve Nemirow has been, among many things, a intake co-ordinator at Kartini Clinic for many years, and has talked to hundreds of families about their struggles to find proper eating disorder treatment for their children. This is one of those conversations.

Life on the Fracture

Recently I was on the phone with a young father from a southwestern state, whose 8 y. o. son was refusing to eat any solid foods, after he choked on vomit during a bout of ”flu.”  This conversation presents a problem I can’t fix.  This happens in the world of childhood eating disorders, more often than anyone wants to talk about. I imagine the problem could be fixed, but that will only happen once a voting majority decides that childhood illnesses belong to all of us, and where children are involved, health problems are never “somebody else’s responsibility.”

The father had taken his son to a major medical center where a standard battery of medical tests all came up negative.  Still, the boy wouldn’t, couldn’t eat. He was losing weight. He wanted to eat.  They took him to an ear/nose/throat specialist. They took him to a speech pathologist.  A swallowing specialist.  The boy couldn’t eat. He kept losing weight, despite his parents’ best efforts to keep his weight up using Boost and smoothies and milkshakes. He dropped from 63 lbs to 52 lbs.  Then his father found our website on the internet.

After speaking at length with the father about the onset of symptoms, I offered him my non-expert opinion (preceded by the usual caveats that (1) I am not a medical doctor, (2) this is not a diagnosis but only a conversation, and (3) to get a real diagnosis it will be necessary for one of our doctors to examine the patient, take some time doing so, and meet with his parents): I said, it sounds like your son may have food phobia.  

“That’s what I think.” Said the father. “I knew it as soon as I read your website. It was like you already knew my boy, knew what happened to him.”

“If that’s what he has, I believe we can help.”

“I’m glad to hear it, you’re the first place I’ve talked to that says they think they can help.”

The question, I said, is going to be resources.  There was quiet on the line.
“Health insurance,” I said.

“I got laid off in January.”

“Any COBRA coverage?”

“COBRA shit its 1,300 a month.  That’s more than my unemployment. What’s so expensive?”

“It’s the hospital. Its about $3,500 a day.  Plan on a couple weeks’ stay.  It could be shorter or longer, but a couple weeks is a good planning number.”

The long silence.

“You know how the President says our health system’s broken?” I asked him.
More silence.

“You’re right on the fracture.”

After more silence he said softly, “That’s like 49,000 dollars. And then there’s the airplane tickets.  You tell me how I’m supposed to do that.”  I could hear his breathing.

“You tell me why a boy’s not going to be treated because his father’s been laid off and can’t find work,”  he said.  “My boy didn’t do anything wrong.”