BWS - Increased Appetite

Admittedly I have never seen "increased appetite" listed as a symptom of BWS, but being that it is an overgrowth condition I can't help but wonder if it is the cause of Micaelyn's voracious and insatiable appetite (I think it's probably too early to say what kind of appetite Elianna has - she certainly eats quite a bit, but I'm not sure it's overly excessive just yet).

Micaelyn seems to have no end to either her desire to eat or the amount she will eat.  For example, if taken out to a restaurant to eat she can eat an adult entree and when she is finished she will ask to eat the leftovers from everybody else's plates.  Then by the time we get home she will be asking for yet more food.  She wants to eat continuously all day long, not just nibble but eat full meals.  If given a big bowl of noodles she will eat the whole thing then ask to eat the leftovers from her siblings bowls.  She will ask for meat and vegetables to go with it.  Then when she is done she will ask for a banana.  After she has finished the banana she will ask for an apple.  Then she will ask for a treat.  If she doesn't have food available she will drink excessively.  Whenever we have places to go I always make sure the kids have a large cup of water to take along.  I learned pretty early with Micaelyn that I could not allow her to keep her cup in her car seat like the other kids.  She would have the whole thing drunk before we even got out of the driveway.

Along with Micaelyn's insatiable desire for food, she seems to have no reservations regarding what she eats.  She will eat pretty much anything, not just a wide variety of foods but even foods that are old.  We have seen her lay away a bag of chips, continuously declaring how wonderful the chips were, only to find out once we ate one ourselves they were disgustingly stale.  I have learned to be super cautious about any foods the boys don't finish in the morning, particularly if I will be gone for a long time before returning home after dropping them off at school because Micaelyn will come in and immediately start eating it.  For example, we can drop the boys off at school and then spend all morning at the hospital, have lunch while we are out, then when we return home that afternoon if there is any leftover food on the table or counter from breakfast she will start eating it.  It could be old soggy cereal that has been sitting in milk half the day, and she will gladly eat it as if it was a great treat.

Micaelyn's appetite is so exceptional even the kids at Caleb and Malachi's school talk about it.  Of course, even with an overgrowth disorder there is a limit to how much food a child should consume.  Needless to say, keeping Micaelyn's food consumption under control requires quite a bit more attention than with the average child!

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.