Here are links to current trials for patients with adrenoleukodystrophy.


http://clinicaltrials.gov/ct/gui/c/a2b/screen/ResultScreen/action/GetStudy?J
ServSessionIdcs_current=u21jv7z44h

I'm concerned that a recommendation was made for a paleo diet based upon one
article that states:

<<The story of Lorenzo, who is now 17 years old, is sadly not a successful
one. Medical trials have proven that the elevation of very long chain
saturated fatty acids (C24:O lignoceric acid and C26:O hexacosanoic) are
normalized with the administration of Lorenzo's Oil (C18:1 oleic acid and
C22:1 erucic acid) but the degeneration of the condition persists and is
relentless. Use of the oil causes gross deficiency of omega 3 and omega 6
fatty acids and lowers the platelet count. Amazingly, researchers have
finally (we pointed out the association of omega 3 and omega 6 fatty acids
years ago but it was ignored) now discovered that children with
adrenoleukodystrophy are deficient in docasahexaenoic acid (DHA) and are
conducting trials on the administration of this fatty acid derived from
algae(Martek Biosciences Corporation). DHA is available in marine oils but
due to the fishy taste researchers shunned using it due to difficulties with
patient compliance. It is crucial that medical testing of red cell membrane
fatty acids be performed so that application of therapy is specific to the
individual's requirements. Children with adrenoleukodystrophy have low
docasahexaenoic acid, low nervonic acid and high lignoceric acid while
children with autism, seizures and brain injury also may exhibit high
lignoceric acid but have high docasahexaenoic acid and high nervonic acid.
Arbitrary administration of specialized fatty acids is inappropriate due to
the unique patterns of fatty acid derangement in specific medical
conditions.>>

What this says  to me is this type of trestment needs to be researched and
clarified.  It appalls me that this could be taken and translated to mean
that a paleo diet would suit this child who has a rare genetic disorder.

I think we need to be very careful about recommendations that are made when
we are talking about life and death situations.

Siobhan