The Psychiatric Care of Children and Young Adults With Neurodegenerative Diseases

The Psychiatric Care of Children and Young Adults With Neurodegenerative Diseases

Hauptman AJ; Augustine EF; Brown HB

Journal of the American Academy of Child and Adolescent Psychiatry

2024

childhood mortality; human; spasticity; quality of life; palliative therapy; patient care; young adult; prognosis; comorbidity; interpersonal communication; patient comfort; symptom; disease exacerbation; side effect; seizure; expectation; gabapentin/dt [Drug Therapy]; prevalence; parkinsonism; dysphagia; risperidone/dt [Drug Therapy]; trazodone/dt [Drug Therapy]; sleep disorder; dementia; aggression; automutilation; motor dysfunction; onset age; neuropsychiatry; agitation; irritability; caregiver burden; adolescence; editorial; anxiety disorder; collaborative care team; pediatric patient; symptom burden; polypharmacy; psychosis; responsibility; feeding tube; child psychiatry; gabapentin/pv [Special Situation for Pharmacovigilance]; body weight gain; sensory dysfunction; cognitive defect/si [Side Effect]; medication therapy management; feeding disorder; mood disorder; degenerative disease/dm [Disease Management]; degenerative disease/dt [Drug Therapy]; mental health care; antiemetic agent/pv [Special Situation for Pharmacovigilance]; apathy; appetite stimulant/pv [Special Situation for Pharmacovigilance]; behavior therapy; choreoathetosis/dt [Drug Therapy]; extrapyramidal symptom; first-line treatment; high risk behavior; Huntington chorea/dm [Disease Management]; iatrogenic disease/si [Side Effect]; juvenile neuronal ceroid lipofuscinosis/dm [Disease Management]; Lafora disease; live birth; mirtazapine/pv [Special Situation for Pharmacovigilance]; neuroleptic agent/ae [Adverse Drug Reaction]; neurologic disease/dm [Disease Management]; obsession; parenting education; perseveration; psychiatric neuropalliative care; psychoeducation; quetiapine/dt [Drug Therapy]; quetiapine/pv [Special Situation for Pharmacovigilance]; risperidone/pv [Special Situation for Pharmacovigilance]; tardive dyskinesia/si [Side Effect]; Tay Sachs disease; trazodone/pv [Special Situation for Pharmacovigilance]; visual impairment

Pediatric neurodegenerative disorders (PNDs), such as juvenile neuronal ceroid lipofuscinosis (CLN3 disease, also called Batten disease) and juvenile Huntington disease, are devastating conditions that result in progressive neurological dysfunction and profound medical comorbidities leading to early mortality in children and young adults.1 There are more than 70 PNDs, with a combined estimated prevalence of ∼0.1 in 1,000 live births.2,3 Individuals with PNDs commonly experience complex neuropsychiatric manifestations such as neurocognitive symptoms (dementia), irritability, aggression and self-injury, mood disorders, sensory alterations, and psychosis. Symptoms are dynamic, changing with illness progression, and evolve over time. Effects on patients and families can be devastating, and caregiver burden is enormous.4 We are a group of colleagues with backgrounds in pediatric neuropsychiatry, pediatric neuropalliative care, and pediatric neurology who care for patients together in specialized clinics.

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February List 2025