Treating Agitation in Children with Neurological Impairment: What They Can Tell Us

Introduction: The population of children with severe neurologic impairment is growing. This unique group of patients with multiple chronic conditions requires care from dedicated primary care physicians, multiple subspecialists, and myriad other team members. Due to the frequent need for complex decision making, defining goals of care, and advance symptom management, the palliative care physician has an important role to play within this group.

Case Description: As an example, our pediatric palliative care team was consulted on a seven-year-old male with medical complexity and agitation. He had a history of a severe dystonia, spasticity, wheelchair dependence, dysphagia, GERD, and repeated episodes of agitation. Unique to this patient, when compared to many other children with neurologic impairment, was his ability to communicate. Though dysarthric, he was able to respond appropriately in short phrases. During the episodes of agitation, his mother reported increased dystonia, crying, and abdominal distension. The patient consistently reported abdominal pain. The episodes lasted for days to weeks, and he had been admitted 6 times in the last 2 years for the same complaint. His mother was considering redirection of care due to the severity of his suffering.

At the time of consult, he had undergone multiple extensive work ups including labs, imaging, and scopes, which were all unrevealing. He had been prescribed gabapentin and clonidine, with little improvement. Ultimately, we were able to achieve pain control by increasing his gabapentin dose, adding nortriptyline, and then low dose methadone, along with advocating for the placement of a G tube to aid in medication administration and allow for venting.

Discussion: Children with neurological impairment are at risk for pain from many different sources. Common etiologies include reflux, constipation, infection, urinary retention, and fractures, among others. After assessing for these reversible causes, labs and imaging can be helpful in identifying any other concerns that may require acute intervention. However, all too often both the medical team and caregivers, are left without satisfactory answers. Fortunately, there is growing recognition of the risk for neuropathic in this population. There is no diagnostic test to prove this theory, but empiric medication trials aimed at treating neuropathic pain show much promise. Frequent treatment options include gabapentin, tricyclic antidepressants, clonidine, and opioids.

Conclusion: Our duty as physicians is to help alleviate the burden of pain and suffering. Historically, caregivers of children with neurological impairment have been told that living in pain is part of the condition, or even that their child is not in “real pain.” Knowing that there is a risk for neuropathic pain, we can now offer hope to families. We can manage pain in children with neurologic impairment, and sometimes, in their own words, they can tell us it gets better.