Congenital Muscular Dystrophy Follow-up

Updated: Jul 03, 2019
  • Author: Emad R Noor, MBChB; Chief Editor: Amy Kao, MD  more...
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Follow-up

Further Outpatient Care

Muscle function, contractures, visual function, seizures, the ability to perform activities of daily living, and cardiopulmonary functions should be assessed at each follow-up visit.

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Further Inpatient Care

Patients with alpha-dystroglycanopathies may require prolonged hospitalization. For example, neonates or infants may have progressive disease and have feeding difficulties, cardiopulmonary complications, seizures, or profound mental retardation.

Older children may need admission for orthopedic care or cardiopulmonary complications.

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Complications

Complications include the following:

  • Feeding difficulties

  • Respiratory failure

  • Seizures

  • Contractures and/or scoliosis

  • Blindness

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Prognosis

The prognosis depends on the type of congenital muscular dystrophy.

With severe disease, such as Walker-Warburg syndrome, patients usually die within the first few years of life.

In congenital muscular dystrophy with laminin-α2 deficiency and in some cases of mutations in FKRP, patients occasionally have a relatively normal life span.

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Patient Education

Genetic counseling is often helpful to patients and their families to assist in family planning.

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