Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Sunday, November 14, 2010

"Magic Juice"

Children diagnosed with PWS do not grow properly. They have short stature and are often obese. They do not burn calories efficiently, so they will gain weight while on a low calorie diet. An insatiable appetite combined with a lower metabolism leads to extreme obesity for individuals diagnosed with this bizarre syndrome.

Thankfully, there is a treatment option that has helped many children and adults diagnosed with PWS in maintaining a healthier weight. It is growth hormone injections or GH. We lovingly call it Nick's "Magic Juice".

There has been much controversy surrounding this hormone and its illegal use in the professional sports and entertainment industries. You may recall the accusations aimed at Roger Clemmens, Lance Armstrong and Sylvester Stallone. This issue has caused much grief for parents of children diagnosed with PWS. There is an effort now by lawmakers to further regulate and control the distribution of this hormone, making it more expensive and more difficult for us to obtain for our children. The current price for a yearly supply of GH is in the thousands of dollars!

The new treatment for children diagnosed with PWS is to start this injection of "naturally occurring hormone" in infancy so that our children's bodies and brains will grow more normally throughout their lives. This hormone increases muscle mass and helps strengthen our kid's bodies who suffer from low muscle tone. When you think about it, almost every bodily function requires the use of the body's muscles, ie: breathing, speaking, moving and even going to the bathroom.

Nicholas has received a nightly injection of GH since he was 4 months old. As a result, Nicholas has been able to maintain a healthy weight that is in proportion to his height. We met with Nicholas's Endocrinologist, Dr. Diane Stafford at Children's Hospital on Friday and have just increased his latest dose, since we have noticed an increase in his weight, some speech issues and constipation problems.

Many friends and family ask me if the shot hurts Nicholas. The answer is no, since Nicholas has received this injection every night since birth. He does not know anything different. We make a game of it, asking him which leg he wants it in and how it makes him big and strong just like daddy.

GH treatment for adults and children diagnosed with PWS has enabled these individuals to become slender and live longer lives. The photo on the left shows the incredible before and after photos of GH treatment results.

I guess if there is one thing I am the most thankful for this holiday season, it is for GH and its ability to give my son a longer, healthier life. Now if we could just find a cure for the insatiable appetite!