Nathan’s Courage
I admire Nathan because he is able to maintain a positive attitude and set goals for himself, while dealing with the day-to-day difficulties of living with spasticity. He has just started the third grade and is very conscientious about doing the same classroom work his classmates complete. Even though he struggles with fatigue during the long school day and needs the assistance of a paraprofessional to do the actual writing on his worksheets, he does not let his spasticity get him down and he completes all of his assignments. He is a happy child who greets you with a smile. Some of the staff at his school call him, “Smiley.”
Nathan was diagnosed with Cerebral Palsy at about 22 months of age. During his first appointment with his rehabilitation doctor, we learned about ITB Therapy (Intrathecal Baclofen Therapy). We were told that Nathan’s body would have to grow big enough for the pump to be placed inside his abdomen. As Nathan grew older, he learned about how ITB Therapy could help him. Only one thing was holding him back. His spasticity was causing him to grow very slowly because his tight muscles burned so many calories. For seven years, Nathan had to keep waiting to try the ITB Therapy because his body was too small.
During Nathan’s seven-year wait, he showed his face of courage over and over. Throughout those years, he endured numerous Botox injections as often as every 3 months. He attended rehabilitation therapies 2-3 times each week. Nathan had a continuous schedule of doctor appointments, hip x-rays, and orthotic appointments. He had lower extremity surgery when he was in the first grade in which he had to be in a body cast. He ended up missing 47 days of school that year! However, Nathan worked hard to make up all of the work he missed and he was able to move on to the second grade with his classmates. That was a HUGE accomplishment! Nathan also had to get used to the ten hour road trips for medical appointments. He has made the long trip eight times in the past two years. Two of the trips he was in a body cast lying on the bench seat in our van. Through all of this, Nathan kept his positive attitude.
On April 9, 2004, after completing a Baclofen Infusion Trial, Nathan learned that his wait for ITB Therapy was almost over. With the new SynchroMed II Pump soon to be available and being smaller in size than the previous model, Nathan’s doctors agreed that he would be a good candidate for the pump. Our family was relieved that Nathan would have a chance to try the ITB Therapy because despite all of the medical treatments he had tried over the last seven years, the spasticity was still causing problems for him. Nathan was not growing and his tight muscles continued to pull on his skeleton, especially his hips.
On June 3, 2004, Nathan’s wait was over! However, he still had to be brave to go through another surgery. This would be his fourth surgery in two years. He was scared, but remembered how much better his body felt during his Baclofen Infusion Trial and he agreed to go through with the surgery.
The SynchroMed II Pump has already improved Nathan’s life in numerous ways! He has more function in his right arm which has enabled him to drive his motorized chair much better and to play computer games all by himself. Also, he has gained about 4 pounds!! Nathan continues to smile and brighten the day of each person he meets.
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For important safety information related to ITB Therapy please click here
 Important Safety Information Related to ITB Therapy and the SynchroMed II System
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
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