I am starting this blog because of all the support we have received over the last couple years for my son Kaden. We wanted to have a place to document his progress and let friends and family know what’s happening with Kaden and his fight with Dystonia.
My 5 year old son Kaden is battling a Mitochondrial Disease. There are 6 documented cases of this particular genetic mutation world wide as of June 2010. The disease can have various effects from life threatening to fairly benign. In Kaden, the mutation has caused a lack of energy to a small portion of the inner part of his brain. This lack of energy has caused damage and the most profound effect on Kaden is a condition called generalized Dystonia.
Dystonia causes the involuntary contraction of muscles. A doctor once told my wife and I that the contractions are similar to having a cramp in a muscle. Kaden can have 10 or 12 muscles(sometimes more) contracting at once. These contractions can last a couple hours or several days. It moves around and affects muscles all over his body.
On October 14th Kaden had surgery to install a Baclofen pump. This device is about the size of a hockey puck and has been inserted just below his rib cage on the right side of his abdomen. The surgeon made about a 6 inch incision to install the pump and then a 2 inch incision at the base of his spine to thread a catheter up to the base of his neck. He then connects the catheter to the pump and closed him up.
The pump will drip a muscle relaxer called Baclofen into the spinal cavity and from there it spreads throughout the body. At the very least the pump will eliminate the contractions. Best case scenario, when the contractions are removed, with therapy Kaden may be able to sit on his own, walk on his own, and do all the other things that a 5 year old is supposed to do.
Today was Kaden’s first full day home from the hospital and he had a great day. It was the fourth day after the surgery and I didn’t see him wince one time. If I had those incisions I would be miserable, but not Kade. He had a smile on his face all day. He is spending this week at home with grandparents and dad(who is working from home). Kade may go back to school as early as Friday. This Thursday he has an appointment with the physical medicine doc to adjust the pump settings. We are already seeing results as his legs seem much more loose today. It may take several weeks to get the pump settings optimized but the initial results are very encouraging.
Thank you to all of our family and freinds. We are truly blessed to have such wonderful people in our lives who give the support we need to help Kaden fight his battle. We’ll give another update soon. See ya.