Saturday, May 3, 2014

PWS Awareness Day 3: Feeding and Satiety

Like most babies with PWS, Oscar was unable to nurse.  He was too sleepy, too weak. He couldn't sense hunger and couldn't latch on.  He had an ng tube and was fed through his nose for the first two weeks before he graduated to a special bottle.  I still remember how I needed to support his neck and head with my right hand while my left rhythmically squeezed the bottle and stroked his cheek.  Feeding could take an hour, but the nurses advised us to stop after thirty minutes - at that point he would be burning more calories by attempting to suck than the milk would provide.

Oscar was five or sixth months old when he started to gain weight a little too rapidly.  All the literature had warned that he would be hard to feed for the first few years. Then a "switch" would flip and he would be constantly hungry.  We expected hyperphagia and rapid weight gain to set in anytime between ages two to five.

But at six months?

I panicked.

Our pediatrician restricted his calories to two-thirds the usual amount recommended for his weight, as is typical for people with PWS.  We recorded how many ounces he drank at each feeding and made sure to stay within the daily limit. When he started eating solids we measured his portions and created a calorie spreadsheet.  (Eventually we would learn to eyeball it.)

I don't know if it was Oscar's slow metabolism or his lack of satiety that led to the early weight gain.  But I do know that as soon as he was able to sit in a high chair and eat solid food, he was eating everything we put in front of him.  Every steamed carrot, every cheerio.  He never, not once, threw anything overboard.   He didn't appear to be always hungry, but even at this early age it seemed like he was never full. 

Here's one of my favorite photos of Oscar at seven months, around the time of that weight gain. 
(By the way, this smile melted away an iceberg's worth of grief and worry.)