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