Academics and researchers argue about what they refer to as “outcome” all the time.  How should treatment outcome be defined? How do you know that the patient is “there”?

These are important questions because “good outcome” will need to be defined before we can answer questions like: what percentage of children will achieve a certain outcome? How long will it take?  What factors can affect outcome? How can families influence the likelihood of a good outcome for their own child? What constitutes a bad outcome? How can we prevent the worst outcome of all (death)?

But for families who have a child currently in treatment these academic issues of defining outcome and it’s accurate measurement are not real.  They are anxiously watching their child everyday– even every hour– for signs of improvement.  That is real.

I made hospital rounds on our patients this morning; so let me walk you through a typical case.  

Roughly three weeks ago we admitted a very starved child (let’s say, a twelve year old boy) to our inpatient service for bradycardia and wasting.  We started our usual protocol and by the first week he had gained about 0.4 lbs/day, per the treatment plan.  He was very wasted and needed a special mattress to prevent bed sores and skin breakdown, for he had no fat to cushion him.  His vitals were still way off (heart rate too slow, orthostatic by pulse) but he had begun to speak a little, though he refused to ask questions of the doctors (too mad!).  By the following week he was just re-fed enough to be angry and anxious about weight gain, despite the Zyprexa, and began to refuse further food.  We discussed it with his parents and placed a nasogastric tube.  

We were a little discouraged for a while, I have to tell you, for  it was clear that our boy was tormented by eating disorder thoughts and anxieties, and they had overwhelmed whatever personality he had once had.  He was hard to reach, hard to understand.  And yes, even we, the “experts”, can become discouraged. But we never give up.  How could you give up on a child?

Over the next few weeks he gained further weight, and as he did so his brow began to clear, he made eye contact and began to speak to the doctors in a soft voice.  Soon he gave us a rare smile.  This past weekend it was my clinic partner, Dr Moshtael’s turn on call, so I had not seen our boy for a few days when I came in to make rounds.  In that time he had been able to eat 100% of his meals and the tube had been removed.  He laughed at our stupid jokes and was pleased to be moved up in phases so that he could walk and move about more.  He attended group therapy in the Kartini Day Treatment Unit for the first time, to meet the cohort of children he would spend the next month or so with.  He is a different kid.  “I have my child back” his mother said.

That is what good outcome looks like. Just ask a parent.  With patience and perserverance – and the right treatment approach – there will be more.