Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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.




Monday, July 9, 2012

Nick's New Nightly Injection, Oh No!

Like many children diagnosed with Prader Willi Syndrome, Nicholas receives Growth Hormone Therapy Treatment.

It is a nightly injection of a hormone that helps his body to grow more appropriately. He has received these shots every night since he was 4 months old.

While this treatment does help Nicholas to grow better, it does not unfortunately control his insatiable appetite.

PWS effects a body's ability to produce a variety of hormones, growth hormone or GH, is one of them. Without the benefit of this substance, folks diagnosed with PWS are often diagnosed with short stature and sometimes an accompanying obesity.

Unfortunately, many body builders, athletes and well known actors have used this substance illegally, in an attempt to create a stronger and leaner physique. Because of this, lawmakers have considered placing restrictions on this medication. These restrictions however will make it more difficult for parents to provide to their children with this life saving medication. Thankfully, our Prader Willi National Organizations have fought these restrictive laws.

There are a variety of manufacturers who make growth hormone. We use a product called Nutropin.

When Nicholas was an infant, Pete and I received training from Children's Hospital in Boston on the correct methodology to use for drawing the GH into a needle and injecting it into our son safely.

It was difficult to do and we were squeamish at first. But it wasn't long before we became experts and competed with each other to see just who could give Nick his shot more painlessly.

Many folks ask me if Nicholas minds getting a shot every night?

Since Nicholas has received this therapy since birth, he really doesn't know anything different. And once again, we try to minimize any discomfort to him. We call it his "magic juice" and remind him that it helps his body to grow big and strong like Daddy.

This has been life as we know it.......for 10 years.

Yesterday, however, I received a call from our Endocrinologists office. And once again for a split second my heart stopped.

Why are they calling me? I wondered.

"Mrs Peters, this is Ms. K, we are calling you today to let you know your Nutropin delivery device will no longer be manufactured. They are going to be making a new device called the Nu-spin."

"What is a Nu-spin?" I asked, as this sounded to me like a new form of playground equipment.

"It is a pen-type injection device that will make the Nutropin dosing more accurate. You will however, need training on how to use this device."

My mind reflected back to the anxiety of  our first "injection training" at Children's. And as is often the case when you are the parent of child diagnosed with special needs, I realized that once again the once familiar must now be abandoned.

I thought that this was a perfect metaphor of our life with PWS.

"Is there a website I can visit to learn more?" I asked the pleasant woman on the phone.

"Yes," she said and provided me with the address.

I thanked her and hung up the phone so I could research this new device that would now become my new reality.

The website had a photo and a small video of how the Nu-spin works.....

OMG!!!

It clicks, it whirls, it spins...this new "delivery" device does everything but cook you breakfast.

I am once again ... intimidated!

Luckily for us however, a nurse will be coming to our home to help us prepare for our new shot-giving adventure.

I am sure, like before, it won't be long before Pete and I master this high tech gadget.

Now if I can only convince my stomach of this.

Oh, brother....will let you all know how it goes!