BWS - Weight Control

Beckwith-Weidemann Syndrome is an "overgrowth" syndrome so it's understandable and even expected for kids with BWS to be large for their age.  What's much harder to understand is at what point their size becomes unacceptable.  Should they be allowed to eat incessantly just because they have an overgrowth syndrome?  At what point do you consider a child's weight to be a problem when they have a syndrome that causes them to be big?

I have heard before that for a rough estimate you can take a child's age and add zero to it to get an idea of what they should weigh.  However, for the most part this has NOT been true for my kids.  Most of my kids have weighed considerably less than this.  Micaelyn is the exception.  She reached 40 pounds BEFORE she weighed 4 years old.  What makes that even more amazing is that the first 3 1/2 years of her life were spent in the very poorest province in all of China, a place where people are known to be small.  She was so large, her abdomen so big, that the Chinese physician performing her physical exam there in China commented on it as if it were not only abnormal but also a problem.  Because she had not been receiving any of the appropriate tumor screenings there in China we were actually concerned when we got Micaelyn her huge belly could have been the result of a tumor.  Thankfully it turned out to be nothing more than overeating.

As we quickly learned Micaelyn's appetite was truly insatiable, her desire to eat was incessant.  Since she was blessed enough to be placed in the care of a good foster family who loved her she was given a lot more opportunity to eat.  We feel she was in fact probably spoiled by her foster family (we are very grateful to them for the love they gave to her!).  Once we confirmed that Micaelyn had no tumors we felt we needed to get her weight under control.  It seemed to us that even with an "overgrowth" syndrome she was still a girl who would all to soon be self-conscious about her weight if we continued to let her eat and grow out of control.

Thus we were faced with the challenge of helping an overweight child with an overgrowth syndrome lose body fat while still allowing her to grow upwards as she aged.  To add to that challenge was the difficulty of controlling the diet of a preschool aged child with an insatiable appetite.  To make the situation even more challenging we had a son just 1 year older (Malachi) who was (and still is) tiny for his age, who has heart defects which make it very important we get him to grow as the goal is to get him as big as possible before he has to have surgery.  We had to get one child with an incessant desire for food to NOT eat as much while at the same time pushing another child nearly the same age to constantly eat more.

Through very close monitoring of her diet we have gotten Micaelyn to a much more healthy weight.  She will probably never be "skinny" but she looks healthy and for us that is what matters.  It hasn't been easy.  She constantly sneaks food behind our backs.  We have to be extra alert for food situations that wouldn't matter in most homes.  If somebody leaves an unfinished bowl of cereal on the kitchen counter in the morning and we don't get home until late that afternoon she will gladly start eating the nasty, mushy mess most other people would turn away from.  If someone drops food on the floor and she finds it later she will happily snatch it up to eat it.  No matter what I have told her about staying away from the stove, I have caught her on a number of occasions eating leftovers straight out of the pan as it sits on the stove (admittedly this has only happened AFTER dinner when the stove is off, but it still concerns me to know she was getting food directly from the stove).  So although the challenges of keeping Micaelyn's weight under control seem minor compared to some of the other issues related to BWS, on a day-to-day basis it's actually one of the more noticeable issues we deal with!

Sisters posing in our backyard.  You can see Micaelyn still has a little bit of a tummy, but it's now a much healthier size.

I think it's too early to know exactly what Elianna's eating habits will become, if she will have the same insatiable desire for food Micaelyn has, but she certainly shows a love of eating.  She loves to crawl around the floor looking through groceries that haven't been put away yet.  She could lay away a whole apple, skin and all, from the time she got her first few teeth.

Nothing better than a fruit smoothie while shopping!