neuro puzzler

I have a young boy that I am seeing for Physical therapy that has been declining over the last couple of years despite everything that the doctors and our team of therapists has been doing to "help".  Mom is getting desprate and we are at our wits end.  Please let me know if this sounds familiar to you.

He is a nine year old boy with initial cognitive, gross motor, and speech delays on eval 3+ years ago.  Presented with unilateral plantar flexion tightness and was diagnosed with cerebral palsy.  Has had aquatic therapy along with bilateral AFOs, a gait trainer and a stander.  Surgical intervention has included gastroc/soleus lengthenings, posterior tibialis tendon transfer and intrathecal Baclofen pump placement.  During the Baclofen pump placement he experienced a collapsed lung but recovered with little respiratory residual effects.

Over the course of the last two years he has undergone a significant increase in weight gain despite attempts to modify his diet which may have been affected by behavioral control meds.  He has become heavier, less tolerant to standing, walking, and weightbearing.  He has recently experienced color changes in his legs that are variable in pattern and include red and blue splotches over the lower leg unaffected by temperature.  He is exhibiting signs of neurogenic pain by biting and sitting on his feet.  He has lost much function of his lower extremities and is losing control of his trunk due to weakness and weight gain.  He has recently been screened for diabetes, muscular dystrophy, multiple sclerosis, peripheral neuropathy, metabolic disorders, cardiac and organ disorders, spinal cord tethering, and several other pathophysiological conditions. All negative.

We are wondering if anyone has encountered a similar case that perhaps can point us to a course of treatment.  We would be incredibly grateful.  The doctors just do not have the answers and he just seems to be getting worse no matter what is tried.  
Please let me know if a similar case is out there.........