Adrenoleukodystrophy


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Neonatal adrenoleukodystrophy
Neonatal adrenoleukodystrophy
Alternative Names

X-linked adrenoleukodystrophy; Melanodermic leukodystrophy; Neonatal adrenoleukodystrophy; NALD


Treatment

Adrenal dysfunction is treated with supplemental steroids (such as cortisol).

A specific treatment for adrenoleukodystrophy is not available, but a diet low in long chain fatty acids and the administration of special oils have been demonstrated to lower the blood levels of the long chain fatty acids. These oils are referred to as Lorenzo's oil, after the son of the family who discovered the treatment. This regimen is presently under evaluation for the treatment of adrenoleukodystrophy.



Bone marrow transplant is also being evaluated as an experimental treatment.


Support Groups


Expectations (prognosis)

The childhood form of adrenoleukodystrophy is a progressive disease that leads to a vegetative state in approximately two years after neurologic symptoms develop. The child may live in this condition for as much as ten years until death occurs. The later onset forms are significantly less dangerous.


Complications

Calling your health care provider

Call your health care provider if your child develops symptoms suggestive of adrenoleukodystrophy or if you have a child with adrenoleukodystrophy who is experiencing increased difficulty.



Review Date: 12/01/2005
Reviewed By: Daniel Rauch, MD, FAAP, Director, Pediatric Hospitalist Program, Associate Professor of Pediatrics, NYU School of Medicine, New York, NY. Review provided by VeriMed Healthcare Network.

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