Nicholas happens to be one of them.
Many children diagnosed with PWS are also prescribed GH or nightly growth hormone injections. These shots help my son to grow more normally. However, if growth occurs too quickly, Nicholas's scoliosis may worsen. Because of this... his growth and back alignment are monitored every 4 months.
This is why it is imperative that all children diagnosed with PWS are followed by an experienced pediatric orthopedist. Other orthopedic issues that effect our children include hip dysplasia, overall ligament laxity (including elbow and knee dislocation potential) and flat feet. All of these conditions may be very painful if left untreated.
Since birth, Nicholas has been followed by Dr Seymour Zimbler at Children's Hospital. This man has over 45 years of experience treating children diagnosed with PWS and is the first physician I have met that understands more about the condition than I do.
He takes periodic x-rays and has prescribed hip, back and foot braces for Nicholas throughout his young life. Dr Zimbler is a very kind and serious doctor. He remembers Nicholas and his previous health status at every single check up, of course we have seen him now for almost nine years. He is an "all business" kind of a guy.
This week was time for our x-ray evaluation.
Nicholas was very cooperative as the x-ray technician photographed his back and side profile.
We entered the exam room where Dr Zimbler posted Nick's x-ray on his computer. As I saw it my heart sank. His spine looked as if it had turned due east.
Previously, Dr Zimbler has explained to me that many individuals diagnosed with PWS will eventually require back surgery to correct this curvature. Typically, if the curve is greater than 60 degrees, surgery becomes necessary since the unaligned spine can now effect the function of internal organs like the heart and lungs.
In my mind, I believe we are headed for surgery and held my breath as Dr Zimbler observed the photo. He too was very concerned.
"I'm going to need to take a look at him," he says to me, his brow tightened, his voice tense.
I was now certain we would be headed to Children's in Boston for surgery. Inside, I was shaking.
Dr Zimbler turned Nicholas around so his back was facing him. He had Nicholas bend down and measured his spine with a hand held device.
"Ohhh," he says, "He must have moved during the x-ray. He looks fine!"
I quickly released the breath I'd been painfully holding
"Phhheeeeew." I said, unimaginably relieved.
Dr Zimbler continued his thorough evaluation.
As he finishes, I stand beside him while he writes up his examination notes.
"His tone is much improved!" he says to me. "Everything looks good, really, really good."
As he says this, he places his hand on my shoulder and says to me,