Monday, March 4, 2013

BWS - Overgrowth

As I mentioned in my last post, BWS is an overgrowth syndrome.  Kids with this syndrome tend to be big, usually above the 90th percentile (though as I said kids typically only exhibit a few of the signs/symptoms, and the severity of those signs/symptoms can vary so a kid does not have to be big to have BWS).

It's always interesting to hear people's responses when I tell them how old Micaelyn and Elianna are.  Those who know they have an overgrowth disorder tend to say, "They don't really look very big."  Those who don't know it often say, "Wow, she's pretty big for her age!"  I think the difference comes with people who know they have BWS thinking they should look so huge as to look odd, and because my girls look completely "normal" it's hard for some people to see them as having a genetic "defect."

The truth is that neither Micaelyn nor Elianna will probably ever be very big in comparison to the average American child.  We don't know how big Micaelyn's birth parents were but we know she come from a part of China where the people tend to be quite small.  When we visited there I was bigger than most people, both men and women, and I am only 5'4" tall.  We do know how tall Elianna's birth parents were, and they were BOTH shorter than me, even her dad.  It's most likely that WITHOUT BWS both girls would be very petite compared to American kids.  Thus, even if BWS causes them to be "big" they will probably just be average in comparison to other kids here.

Micaelyn was really big even by American standards when we first got her (40 pounds at 3 years old).  After 2 years with us VERY closely controlling her food intake she has slimmed up significantly and now appears to range in the average/slightly above average range on the growth chart.  At last measurement she was near 50% for height and 75% for weight (so obviously while we are closely controlling her food intake she is not starving based on her height to weight ratio!).  Elianna also appears to fall in the average range for height and slightly above average range for weight (~70%).  So both girls are almost certainly a lot bigger than they would have been without BWS, but they are only slightly bigger than their peers here in America.

The fish Elianna was sitting on was vibrating so she was too fascinated with it to bother looking at the camera.

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