Peripheral neuropathy

We have a 12 year old child diagnosed with Kabuki Makeup Syndrome, secondary to which he has hypervisceral algesia, and major GI motility dysfunction.  He has long complained of pain, which he describes as "pressure" and "static electricity" on the center soles of his feet.  It happens when he is fatigued, or in concert with other pain symptoms--primarily GI in nature.

He is on a long litany of meds, but the pain control physician is suspicious of his growth hormones (HGH and IGF-1) as potential culprits for what she feels may be a peripheral neuropathy.  

Any input as to whether to pursue this with the child's endocrinologist?

[kathrynemae]

I feel so bad for you. I have a child with Kabuki and it is impossible to get help for her.  She is sick to her stomach all the time!  My daughter was tested for the helicobacter pylori virus and found to be positive in elementary school. This was in the Seattle area.  She was treated twice.  The treatment made her sick and did not work.  She was tested again in highschool and was still found to be positive.  Her doctor in our home town in Idaho decided she would be fine to just live this way.  This is a hard way to live.  My prayers are with you...