Table 10.

Supportive Treatment of Manifestations in Males and Females with Adrenomyeloneuropathy (AMN)

Manifestation/ConcernTreatmentConsiderations/Other
Cognitive decline By neuropsychologist
Behavioral issues By mental health providers
Communication By speech-language pathologistConsider alternative means of communication.
Seizures By neurologistAppropriate ASMs
Motor impairment / ADL Orthopedics / physical medicine & rehab / PT & OT incl stretching to help avoid contractures & fallsConsider need for positioning & mobility devices, disability parking placard.
Neurogenic bladder By urologist
Bowel control By gastroenterologist
Sexual dysfunction By urologistIn males only
Emotional & vocational counseling By mental health providersIf necessary
Adrenocortical insufficiency 1 Corticosteroid replacement therapy 2 (which can be lifesaving in males, & is rarely needed in females)Per treating endocrinologist
Family/Community
  • Ensure appropriate social work involvement to connect families w/local resources, respite, & support.
  • Coordinate care to manage multiple subspecialty appointments, equipment, medications, & supplies.
Ongoing assessment of need for palliative care involvement &/or home nursing

ADL = activities of daily living; ASM = anti-seizure medication; OT = occupational therapy; PT = physical therapy

1.
2.

Corticosteroid replacement therapy has no effect on nervous system involvement.

From: X-Linked Adrenoleukodystrophy

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