Coming from afar

This week I have had the privilege of treating a young person whose parents moved heaven and earth to fly them across the entire United States to seek what they believe to be the best care available anywhere.

Can you imagine how humbling that is for us?  To be thought the best care by parents who are entrusting you with the most precious thing they have: their child?  It’s not that they come with stars in their eyes and “yes doctor, whatever you say” written cross their foreheads—far from it, usually.  They typically come after hours of conversation with our intake coordinators, asking questions, challenging, arranging insurance, arguing with disbelieving family members (“surely there’s the best care in the world in New York/Chicago/Seattle….”) telling their stories, crying, debating and taking a deep breath at the magnitude of a decision to put their lives on hold, fly three thousand miles and dive into the deep end of the pool of family-based treatment, Kartini style.

Typically those who come from afar have tried many things first, and “failed”.  It never ceases to amaze me what parents go through in their quest for adequate treatment.  Yes, in those urban centers where one would assume the best and most advanced medical care in the world resides, parents come to us having been told that their child is “untreatable” or “spoiled” or “a result of family dysfunction” or “struggling with autonomy issues from an overbearing family system”.  Some have been in treatment for many months or years, with wholly inadequate weight gain; some have been medicated with medications from a previous century or another field (benzodiazepines, sleeping pills, laxatives…..), some have endured psychiatric hospitalization and separation from their loved ones “for their own good”.

The stories are diverse and scary.  Maybe some of you have a few?