In our ongoing studies in the lab to find additional compounds that increase IKAP levels in FD patients, we have found that vitamin A, as well as the related provitamin A forms, such as beta-carotene, increase the production of the functional IKAP transcript in FD-derived and normal cell lines. These vitamin A forms increase functional IKAP levels in a similar manner to that which occurs in response to the tocotrienols. In fact, we have observed that the simultaneous treatment of cells with vitamin A and the tocotrienols results in a greatly enhanced production of functional IKAP.

Studies in our lab reveal that these Vitamin A and related compounds enter the blood stream where they mediate the same effects seen in the laboratory cell lines. Dr. Anderson and I both took these compounds ourselves and measured the IKAP levels in our blood. While we don’t have definitive proof that the vitamin A compounds will affect IKAP levels in the nerve cells of our bodies, we have evaluated the impact of these compounds on neuronal cells in the lab and they respond very well.

Before going “public” with our findings, we often will ask parents of some of the local children if they would be willing to have their child ingest a supplement and report back to us any effects noted. The results have been VERY encouraging. Parents have reported significantly increased autonomic stability and increased cognitive function. The commercial products that we tested in the lab and recommend are the “Non-Oily Dry A” product produced by Vitamin Shoppe and the “Dry Beta-carotene” product made by Solgar.

Vitamin A is obtained by our bodies either in the form of vitamin A or as a provitamin A such as beta-carotene or similar molecules. The ingestion of excessive amounts of vitamin A can be toxic. The Dietary Supplement Fact Sheet provided by the National Institutes of Health presented below provides guidance on the “Upper Intake Limits” for vitamin A, depending on the age of the individual. According to this information, a child between 9 and 13 years of age can take 5610 units of vitamin A. An individual between the ages of 14 and 18 can take 9,240 units of vitamin A. How much should you give your child? Clearly age is not necessarily a good measure when it comes to FD children, as they tend to be smaller than unaffected children. As an example, the upper limit for a 19 year old healthy female who weighs 100 pounds would be 10,000 units. It would therefore seem reasonable to extrapolate that a 50 pound FD child could receive 5000 units of vitamin A each day. Further extrapolations should be easy to perform according to the weight of the child. It is important to keep in mind that if a child is receiving vitamin A from another supplement or from a formula, the total amount of vitamin A that can be given should not exceed the upper limit. When calculating how much vitamin A to give your child, please consult your physician.

Tolerable Upper Intake Levels (ULs) for retinol

retinol table

Contrary to the impact of the ingestion of vitamin A, the ingestion of large amounts of beta-carotene are not toxic, as the body will only use the beta-carotene if the body is not being provided with a sufficient amount of vitamin A. What this means is that there is more leeway when ingesting the beta-carotene. In Dr. Anderson and me, a clear effect on our blood IKAP levels was apparent when we ingested either the “Dry A” capsule that contains 5000 IU of vitamin A (in the form of retinyl acetate) and 5000 IU of beta-carotene, or the tablet ( Dry Beta-Carotene) that contains 10,000 IU of the beta-carotene. What we suggest is that you consult with your child’s physician regarding this matter and that you arrive at a dose that is deemed appropriate for your child.

• The fact is that the beta-carotene is considered non-toxic and, as such, a higher dose of this provitamin A is not believed to have any negative effects.
• Ongoing ingestion of an excessive amount of beta-carotene can cause the skin to turn somewhat orange in color. This color change disappears when the supplementation is stopped.
• There are many interesting and sometimes contradictory studies in the literature that are worth noting. There is a study that suggests that ingestion of large amounts of vitamin A may cause osteoporosis and there is a study that indicates that the ingestion of beta-carotene is associated with improved cognitive function. While these studies, in our view, are not conclusive, we would suggest that if you provide your child with an increased amount of vitamin A, you also provide calcium supplementation.