The only known treatments at this time are either Bone Marrow or Umbilical Cord Blood Transplants. However, I believe that there are numerous things that can be done to help support the body and lower the levels of Very Long Chain Fatty Acid’s (VLCFA’s).
Kennedy Krieger Institute is conducting an ongoing study with Lorenzo’s Oil, but unfortunately because of very strict guidelines set by the FDA many affected individuals are not eligible.
I have put together a list of things that I believe may be beneficial to others. I have had personal success with the Amino Acids and have communicated with many other families who continue to have success with some or all of the items listed below.
I recommend you print this page and take it to your physician before implementing any changes.
Mustard Oil - not all mustard oils are created equal, but we have found one that has been tested at the Kennedy Krieger Institute where it was determined to have many of the same components as the Lorenzo’s Oil. We know a distributor who will ship it to you if you can’t find it locally. The brand is KTC and is manufactured by K.T.C. (edibles) LTD and it comes 12 bottles to a case for approximately $35 + S & H.
East West Foods
441 47th Ave.
Sacramento, CA 95824
Alpha Lipoic Sustain 300 - a sustained release format to minimize gastric irritations and blood sugar fluctuations. Alpha Lipoic Acid is a disulfide molecule (containing two thiol groups). A thiol (or SH) consists of a sulfur and a hydrogen atom. This unique antioxidant is both lipid and water soluble, a potent promoter of glutathione synthesis and cofactor in energy production, helping to regulate glucose metabolism*
Acetyl L-Carnitine - is involved in many metabolic functions. As an antioxidant, acetyl carnitine can protect neurons from damage caused by superoxide radicals. Acetyl carnitine is involved in other aspects of neuronal metabolism and its molecular structure resembles the neurotransmitter acetylcholine. It also supports energy utilization through fatty acid metabolism in the mitochondria. *
DHA (Omega 3 fish oil) - contains 80% Omega-3 fatty acids in their natural glyceride form. Also contains Gamma Tocopherol and Ascorbyl Palmitate (fat soluble vitamin C) Which are antioxidants for protection of long-chain fatty acids.*
Neuro Optimizer - nutrition for the brain, combining CDP-Choline (cytidines 5’-siposcholine), Corti-PS 9 Phosphatidyl Serine), Alpha Lipoic Acid, Acetyl L-Carnitine, L-Glutamine and Taurine to enhance brain metabolism and antioxidant protection. It is a safe, natural way to enhance brain metabolism and cognition without the use of stimulants.*
Co-Q-10 - an important antioxidant found in high concentration in human heart and liver, is part of the cells’ electron transport system.*
Custom-blended Amino and Fatty Acid formula - designed especially for you. Get a complete blood analysis to determine your biochemical profile. Learn more and order your blood test kit at the Cochran Foundation.
Atkins Diet - a modified version of the Atkins diet may reduce seizures in children according to a study at Johns Hopkins Children’s Center.
Life Extension Booster - a multi-vitamin formula jammed with nutrients the body needs to help fight off diseases. It contains palm-oil derived tocotrienols in its alpha, beta and gamma forms and has been identified as a super antioxidant.
Flax Seed Oil - from Finest Natural has 1000 mg with 700 mg Omega from Alpha-Linolenic Acid. Helps promote healthy cardiovascular and immune system function.
Calcium, Magnesium and Zinc w/vitamin D - aids in nerve, muscle and metabolic functions. Zinc also participates in antioxidant processes. D improves calcium absorption.
Rhodiola - an adaptogenic herb long used as a tonic by many cultures, is suggested to use as an aid in cortisol support and helps the body to adapt to stress.
I’m not saying to take all of these but I do suggest that you do your own research and find what works for you.
I will add to this list as more things are identified to be beneficial.