MOVEMENT

I havn't posted to many updates lately as things here have gone from bad to nightmare. We went to the Shrinner's hospital in Philidelphia. My son was making great strides forward. But with in a few week's things got much worse. Let me start from the beginning.

At Shrinners they did a full work up on my son and went over the medications that my son was put on and made adustments. The Dr there told me that we should go ahead and remove one of the drugs called Neurontin. She said the dose was minimal and didn't think it was doing much. This is a drug you have to ween off of so we started the process and over a few week's totally removed the drug.

During the time we were weaning him off the drug we noticed his tone getting worse. They explained it away as spinal shock wearing off. So we just increased his baclofen up and up until he was maxed out and they started talking baclofen pump and gave him Zaniflex.. nothing worked

For the past two week's we have had trouble with Matt getting sick at Therapy in Orlando bouts of disreflexia that we couldn't figure out why.,
Matt was going down hill fast and no one had the answer's we needed. On Monday afternoon I was asking the Dr's to put Matt back in the hospital I was worried about him. His leg's were stiff you couldn't straighten them or bend them and he just wasn't Matt. His eye's looked gone and his attitude was horrible.. He started to lash out at me out of fear.. not knowing what was going on with his body. After breaking down in the Dr's office exhausted trying to care for him they did blood work and still left us with out answer's. So I sat down and went over his paperwork and medications and thought Lord why now...what are we missing what is different he was getting so much better then he crashed. Well it dawned on me the only thing different we have done (at the Shrinner's Dr's request) is took him off Neurontin.. it is used for Neuropathic pain. I gave him one right away..There was suttle change with in an hour... the next day we went to the Neurologist and told him and he looked over Matt and said yes this is what was crippling him more. His body has pain from his accident that he can't feel like we do but his body can feel it. Nerve compression from the swelling in his spine. In 24 hours Matt has made a drastic change and today when we went to his Physiatrist he grabbed Matt behind the knee and lifted his leg up and said Matt kick out. Matt could do it.. HE IS GETTING Movement from the knee down!!!!! Matt lit up and started to grin from ear to ear and kept trying it himself to believe it was really him doing it. So I think we are back on the right track they are increasing his dose of the Neurontin over a three week period to get it to where it need's to be. Today has been such a relief I can't tell you how scared I have been.