Program

Friday March 31, 09.00-10.15

Pain and neuro-irritability in pediatric palliative care of children and adolescents with life limiting neurological conditions

Boris Zernikow, Professor, MD

One of the most challenging patient group in paediatric palliative care (PPC) are children who suffer severe psychomotor impairment, cannot verbally communicate, and present behavior that might suggest that they are in pain (e.g., daytime restlessness, weeping, screaming, sleep disturbances, mood changes, increased spasticity).

The first steps to approach these children are to observe the children carefully over a period of several days with standardized tools like the Pediatric Pain Profile and to rule out treatable causes like constipation. Often not biological but social, psychological or spiritual factors contribute to the behavior of the handicapped child and those have to be addressed as well.  If the professionals and the parents could not detect a treatable reason for probable pain – as a second step – an analgesic trial should be carefully started with non-opioids and sometimes opioids. Most important: children with a brain damage react in a different way to central acting drugs than children without brain damage. In those with brain damage sometimes even low doses of opioids cause severe side effects like respiratory depression. The starting dose of opioids should be extremely low to avoid sedation. If the child is sedated, the problem cannot longer be observed and it remains unclear whether pain has been the reason for the unusual behavior of the affected child. Often patience have to be exercised during step 2.  The third step is the most complicated one: if the child shows behavior that might be an indicator of pain despite a proper analgesic treatment second line drugs have to be tried on a trial an error principal. Those drugs include alternative strong opioids like methadone, cannabinoids, antipsychotics like risperidone, anticonvulsants like gabapentin or neuroleptics like pipamperone.

Since there are no systematic studies on this problem in PPC, case series and expert knowledge are the gold standard of evidence. During the talk, case studies will be presented and discussed.