Our followup visit with Dr. Rehab

We went to our semi-annual followup visit with Crew's rehab doc today. She is always so positive. Said he is making great progress.. he looks stronger and is definately moving more. The spasticity is there but not severe. I was thrilled when she suggested that he might benefit from some oral baclofen. While I am a little concerned about the possible side effects, I'm feeling okay about giving it a try. She prescribed a very low dosage. The baclofen helps reduce spasticity. We will try it and watch to see how Crew is affected. The question is "how much is he using his "high tone" or "spasticity" to his advantage. Sometimes its hard to distinguish between his strength and the spasticity. So we will see... If he is still able to function we will go through some intrathecal baclofen tests in about 4 months to see if he is a candidate for a rhizotomy in the future.

Rhizotomy is a type of surgery used to lessen spasticity. The surgeon operates on the nerve roots leading to sensory nerves in the legs. An opening in the lower back exposes the nerve roots in the spinal column. Next, the nerve roots are divided into their smaller rootlets. Each of these rootlets is stimulated with a small amount of electricity. When a muscle responds abnormally to the stimulation, this rootlet may be surgically cut. This, in turn, reduces spasticity.

This surgery is major and permanent. Its scary. But the outcome could mean the difference between walking or not. As I was sitting in the waiting room, I met an adorable 7-year old girl wearing her little purple DAFO's and walking quite swiftly with just one crutch. I commented to Dr. Rehab that I thought it was so neat how well she could move about. Dr. told me that she just had a rhizotomy one year ago. Since then she has gone from where Crew's at developmentally (which is walking 10 or so steps at a time with his walker) to cruising with just the one crutch. Her success story gives me hope......