Acute disseminated encephelomyelopathy

  My 28 y.o. adopted sister was diagnosed with ADEM in October of 1997.  Today,in August 1998 she is still modearatly to severely disabled(esp. frontal lobe problems-reasoning etc.)  My question is threefold...1)Are there any documented cases fo people who had recovery that took longer than the nine month time frame in my sisters case and to what extent recovery? There are still myelin lesions present.  2) A causative agent has not been identified.  Two months prior to the ADEM,there was an emergency room visit where she was horseback riding and had a first time allergic reaction where her "eyeballs popped out of her head"  .  Could this be related. 3)Also approx. 5 years ago, there was a Cytomegalovirus infection hospitalization.  Any correlation? Any information,studies,feedback would be greatly appreciated.

  
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[CCF Neurology M.D./DFG]

Dear Kimberly:
The speed of recovery, as well as the ultimate degree of residual impairment,
varies considerably depending on the amount and location of the original
demyelinating lesions. It is not uncommon for the recovery from such
extensive insults to the brain to extend well beyond a year (again, with
individual variance). One thing your sister has in her favor here is her young
age, since younger people tend to have more resilient brains in terms of
recovery.There are no good studies I am aware of which specifically or
indirectly tracts recovery/prognosis over time in ADEM.
The causes of ADEM are also varied, but the most often associated entities
include postviral respiratory infections (especially Epstein-Barr and CMV),
and in rarer cases post-measles,influenza, rubella, smallpox, and chickenpox infections,
and in extreme rare cases after rabies or smallpox vaccinations and
tetanus antitoxin injections.
Your sisters CMV exposure 5 years ago is an unlikely cause of her ADEM, as
the infection predates the brain lesions in ADEM within days-weeks usually.
The incident 2 mo. prior of unexplained "allergic reaction" is again hard
to link with ADEM due to the timing as explained above.
I hope this has been helpful. Good luck to you and your family.