Thursday, February 3, 2011

The Beginning

Prader-Willi Syndrome is something that affects our family.  My step daughter was diagnosed at 3 months old.  If you don't know anything about PWS, the short version is that it causes a person to never feel full.  Ever.  There are also behavioral issues, low muscle tone, extremely slow metabolism, short stature, tics like skin picking, and mental retardation.  Extreme food seeking is also an issue.

PWS affects everything we do.  We plan our life around it.  We don't resent it - it is what it is.  We make the changes we need to and we move on.  Unfortunately, many issues arise and sometimes we need help dealing with them.  Right now, K's weight is fairly out of control.  She is 4' 10" and at last weigh in (which was, I believe, in September or October) she weighed almost 170 pounds. 

People look at you like it's your fault she's heavy.  Like you must be a bad parent because your child carries all that extra weight.  What they don't see is the hour a day on the treadmill she does or the fact that she is on a strict diet.  It can be hard dealing with the stares of strangers sometimes.

Even with these precautions, I don't think we're feeding her as little as we should be.  I try to keep her diet around 1200 calories a day.  I'm pretty sure she should be actually eating around 600 a day to lose weight.  I'm just not sure how to feed her using only 600 calories a day.  That's where The Children's Institute in Pittsburgh comes in.  They have a program there for children with Prader-Willi Syndrome.  It is the only one in the world.  It works miracles.  The kids go there and stay inpatient with other kids that have PWS.  They learn how to exercise and they are put on a very strict diet.  One where you can't coax a cookie or bag of chips out of your cafeteria neighbor. 

Recently I was inspired by a program I saw on TLC called "My Deadly Appetie" about a boy named William with PWS.  It was incredibly inspiring to us and is what actually got me to call the Institute.  His mother, Faith, is a sweet woman who has been so helpful to me throughout the beginning stages of this process.  I got the application for the Institute in the mail today and was a bit overwhelmed by all the information they need.  Current lab tests, referral letters, current sleep study, current EKG, and on and on.  Looks like I've got my work cut out for me.  It's a lot of work, but if it will make K healthy it's all worth it in the end.

1 comment:

  1. I just found your blog and I look forward to reading more about your journey to Pittsburgh. I will be cheering for you and your sweet daughter.