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.




Wednesday, November 2, 2011

Appointment Highs and Lows

Many children diagnosed with Prader Willi Syndrome suffer from scoliosis.

Nicholas happens to be one of them.

Scoliosis is a curvature of the spine. The muscles in a child's back, and particularly the strength of these muscles helps to hold the spinal cord in its straightened position. When there is a weakness in the back or when the muscles pull unevenly on the spine, scoliosis, or curvature can occur.

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.

Nick's x-ray

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.

As I looked at this x-ray, I was sure, the curvature was that bad. Inside my mind, I envisioned yet another surgery for Nicholas. Only this time, scoliosis correction surgery can last up to 8 -10 hours! With recovery being very slow and difficult for a child.

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,

"Good job!"

Those two words coming from Dr Zimbler and his unusual show of affection, meant the world to me. This highly respected and intelligent man who typically is "all business" took the time to warmly let me know, that I was doing a good job.

As a parent of child with special needs, I find there are very few folks in my personal life who tell me this. And since this is now pretty much my only job in the world.... Dr Zimbler's tenderness has meant the world to me.