She cannot even feed on the jtube without excruciating pain, even with <span style = 'background-color: #dae8f4'>fentanyl</span>
and anti-nausea drugs. So, her weight is dropping, dropping, dropping. She goes days or weeks without any nutrition. Her GI cannot offer her anything more except TPN in a hospital setting (IV feeding). Her pain doc keeps upping her fentanyl
but cannot keep up with the pain.
We are having her evaluated for Chiari I malformation (common with EDS) to see if she has this, and if spinal/cranial surgery will even help.