Hello, my name is Tracey. I am writing on behalf of my son Joshua. He was born on March 28, 1993 with Left Frontal Lobe deformity. This caused him to have seizures and Cerebral Palsy. In October 1995 he had brain surgery because meds would not help control his seizures. Up until October of 2001 he was classified as a Hemiplegic. At that time he went through regression and is now classified as a Spastic Quadriplegic. To this day we still do not know what happened.
Before this happened we did not have to deal with real bad spasticity. We did however deal with some on his right side. For this we decided to try the Botox injections in his right leg. This worked, so we went on to his right arm as well. After awhile he became immune to them. When this happened we decided to try Oral Baclofen. As with the Botox, it worked for awhile and he became immune to it.
Once this happened we were at a loss. We didn’t know what to do or where to go. Then we were told about Phenol. Before that he also went through surgery to lengthen the Hamstrings and Achilles Tendons. He also developed Coka Valga and had to have his hips rebuilt.
In 2002 we heard about Phenol. We did the research and decided it was worth a try. His right arm had gotten so bad that paralysis had set up in it. Because of this we decided to do Phenol plus Botox directly into the spots that needed it most in his arm. That worked so well that we decided to do it in both of his legs. We were also expecting the same results. Unfortunately it did work but he was in terrible pain for several months after that.
After this we were at a loss again. His right arm was going great, but his legs were getting so tight that we could not even do his physical therapy. That is when his Doctor suggested the Baclofen Pump and having a test dose done. We all agreed that since it was our last resort it was worth a try. We did the test dose and it seemed to work great. We did all the research and even had three separate appointments with his Doctor and the surgeon before we made our final decision.
In May 2004 Joshua underwent surgery for the Baclofen Pump placement. Today’s date is July 30, 2004 and Joshua has exceeded all the goals that we had for him before the placement.
Believe it or not, but this is the short version of his spasticity story. Since the regression, he has developed a delay in swallow and delay in gastric emptying and several other things. I have to carry the list with me because of the fear of forgetting one.
Joshua is now starting to do things for himself. He can stand in his stander for a long period of time and is trying to walk in his Gait Trainer. He has started helping with transfers and basic self help things. He is a very strong boy and he even wants to “use the potty” like a big boy. We are all so very proud of him for being such a little fighter.
For all the parents of children with spasticity I only have a few things, but very important things to say. First and foremost, if you believe in God and miracles don’t ever lose your faith. It is very easy to do when you are faced with these kinds of difficulties. Second, listen to what the Doctors say and make sure they take time to listen to you and answer all your questions. Always ask questions no matter how small you think they are. And last but certainly not least, don’t ever give up. You never know what tomorrow will hold for you and your child. My thoughts and prayers are with you all. Take care and best wishes in all your decisions.
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 Important Safety Information Related to ITB Therapy and the SynchroMed II System
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