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Infantile spasms

Frank Silbermann fs at cs.tulane.edu
Mon Dec 21 13:49:43 EST 1992

My 6mo. old daughter has just been diagnosed with infantile spasms.
According to the two journal papers I've glanced at, the prognosis
is devastating -- severe and unavoidable physical and mental retardation
in about 90% of cases.

She is one of the 10-15% who are classed as crypto-genitive
(i.e. no measurable associated brain damage, normal cat scan,
normal neuralogic exam etc.).  For this lucky group,
only about 60% develop severe retardation, but it is
unpredictable as to which patients will fall into
the "lucky" 40% who suffer at most "mild" impairment.

I put "mild" in quotes, because one nurse told me that
mild retardation might be an I.Q of around 70.
I, myself, would consider it quite a severe impairment indeed
if --say through a head injury--  I suddenly dropped 75 IQ points.
(No flames please about the meaninglessness of IQ.
Just subsitutute any other reasonable measure).

I would greatly appreciate hearing from anybody
who has any experience with this disease,
so my wife and I can get a better idea of what
we're up against.

Frank Silbermann	fs at cs.tulane.edu
(my wife, Janice, can be reached at js at cs.tulane.edu)

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