Supplements

Note: This is not intended to replace medical advice. Please consult with your physician.

Several families of children with A-T believe they see positive differences when their child takes specific supplements or combinations of supplements. Because A-T is a very rare disease, and because nutritional or metabolic research is very complicated and expensive, scientific research on the use of supplements and/or the need for supplements is sorely lacking. However, the first-ever clinical study on A-T (Myo-Inositol Clinical Treatment Study) addressed the effects of supplementation of pharmacologic doses of myo-inositol, and studies currently underway are addressing patterns of deficiency in A-T (Characterization of A-T Biochemical Phenotype), abnormal metabolic requirements in A-T (Nutritional and Metabolic Requirements of A-T Lymphocytes) and alcohol avoidance strategies for individuals with alcohol sensitive metabolisms (Food Alcohol Project).

If you have a child with A-T, see Nutritional Research Study for the Assessment of Nutritional and Metabolic Status of Human Lymphocytes for information about participating in the ongoing University of Texas study which is determining individual metabolic profiles and nutritional requirements for subjects with A-T.

INOSITOL: 20 children and 2 adults went through the extensive clinical treatment study that investigated the effects of myo-inositol supplementation on cerebellar and immune functioning and activities of daily living in A-T. This study was initiated based on findings by university-based researchers that A-T cells were up to 80% deficient in inositol, and on separate on-going university-based research on fresh lymphocytes from A-T patients indicating an abnormal requirement for inositol in over 60% of subjects. Because inositol is a growth factor and is intrinsically involved in cell signalling, it is not recommended for consumption at pharmacological doses at this point, although there are no known toxic side effects of inositol. Study results are being analyzed and information will be provided to parents in subsequent months.

B-VITAMINS: Published research on A-T indicates that subjects with A-T were significantly deficient in the active enzyme form of riboflavin (glutathione reductase). Testing of individual cells in a case study also indicated the same deficiency, as well as an abnormal requirement for B6. Other case analyses of subjects with A-T have indicated abnormal requirements for other B vitamins including B6, Biotin, Pantothenic Acid and B12. B vitamins should be taken in balance with each other. Some families supplement with B-100s. Some children with A-T can only utilize the form of B12 called hydroxocobalamin, which must be injected, as opposed to methyl-cobalamin which can be taken orally.

FATTY ACIDS/OILS: On-going university-based research on fresh lymphocytes from A-T patients indicates an abnormal requirement for oleic acid in a majority of subjects. Other A-T research is beginning to implicate problems with fatty acid metabolism in A-T. Oleic acid is found in olive oil. Some families supplement with Essential Fatty Acids. Some families give acetyl-L-carnitine, based on scientifically-reported benefits of carnitine in neurological disorders, especially those with fatty acid metabolism problems. Acetyl carnitine is very expensive. Insurance is more likely to cover it if the doctor specifies acetyl-carnitine in dosages that are not available over the counter.

ANTIOXIDANTS: Back in 1957 Elena Boder, M.D. named A-T, based on observations of clients in her Beverly Hills/UCLA medical practice. Based on her observations, she believed Vitamin E to be helpful in A-T, as do many parents. On-going research on fresh A-T lymphocytes indicates abnormal requirements for antioxidants in a majority of subjects compared to controls. Antioxidants tested include Vitamin E, alpha-lipoic acid, retinoic acid and Co-Q10. Some families give NAC, based on reports of beneficial effects in other ataxias.

CO-ENZYME Q10: Co-Enzyme Q10 has used in subjects with cerebellar-based intention tremors (not A-T). According to scientifically reported research, CoQ10 significantly decreased intention tremors, which are problematic in A-T.