Intellectual Disability Follow-up

Updated: Apr 19, 2016
  • Author: Ari S Zeldin, MD, FAAP, FAAN; Chief Editor: Amy Kao, MD  more...
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Follow-up

Further Outpatient Care

See the list below:

  • Children with MR/ID should be evaluated regulalry by a neurologist or neurodevelopmental pediatrician with a special interest in the etiology and management of cognitive disorders. The physician should have adequate knowledge of the educational, social, and support services available in the community; assessing the appropriateness of the patient's individualized habilitation is important.
  • To maximize the individual's functional independence, the following areas should be addressed by the physician at least annually:
    • Treatment of associated impairments
    • Pharmacotherapy
    • Behavior management
    • Educational services
    • Recreational needs
    • Family counseling
  • The annual visit requires routine preventive medicine and coordination of specialized services such as dental and gynecologic care under sedation. Supplemental vaccines, including the influenza and hepatitis B vaccines, are particularly prudent for those in residential placements. A careful behavioral history is important to identify newly emerging maladaptive behaviors that may be treated effectively with behavior management. Examples of health care guidelines for individuals with MR/ID include the Massachusetts Department of Mental Retardation checklist. [37]
  • If patients have coexisting motor impairments, the physician should monitor for secondary orthopedic disease. Advanced knowledge in the pharmacologic management of spasticity and rigidity allows the clinician to refer the patient for botulinum toxin injections or baclofen pump insertion when appropriate. Arthroplasty for progressive hip dislocation and/or tendon releases for progressive contractures due to spasticity may be required.
  • The health maintenance schedule for individuals with Down syndrome is well recognized. The American Academy of Pediatrics and American Academy of Family Practice have provided practice guidelines on the preventive care of children and adults with Down syndrome. [38] Ongoing vision and audiologic evaluation, thyroid function tests, and screening for atlantoaxial instability and obstructive sleep apnea are some important components.
  • The American Academy of Pediatrics has recently provided practice guidelines for the health maintenance of children with Prader-Willi syndrome [39] .
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Prognosis

Individuals with MR/ID fare better today than at any other recorded time in world history.

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Patient Education

Family support and education around the issues of MR can be obtained from the following:

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