CLARIFICATION ON THE VITAMIN A ISSUE Page 1
CLARIFICATION ON THE VITAMIN A ISSUE
Sidney MacDonald Baker, M.D. and Jaquelyn McCandless, M.D.
(Dr. Baker) In the spring of 2002, measles virus was reliably reported to be present in the spinal fluid of some autistic children who had previously demonstrated measles vaccine virus in the lymphoid tissue of their digestive tracts. The alarm of this finding increased our incentive to come up with ideas upon which well-informed parents might base safe private decisions for their children pending a shift in public policy to address the measles virus issue. The gap between the urgency of private decisions in regard to this issue and the resistance to the very idea on the part of those responsible for public policy suggested that it might be many years before speculations about treatment of individual children with atypical presence of MV might be resolved by research in groups of children.
Very high doses of vitamin A palmitate (400,000iu per day for two consecutive days) is the only measles specific treatment for children with active acute measles. This common childhood infection may involve a sometimes fatal inflammation of the lungs (pneumonia), inflammation of the brain (encephalitis) as well as other complications that befall very sick children. Other anti-viral treatments have not been shown to work in measles. A discussion at the DAN! Think Tank in May of 2002 in Boston led to a consensus that some form of Vitamin A treatment would be worthy of consideration. Guidelines for such treatment were published in Biomedical Assessment Options For Children with Autism and Related Problems, by Pangborn, J and Baker, SM, published by the Autism Research Institute, 4182 Adams Avenue, San Diego, DA 92116 October 2002 Edition, pages 216-220.
The chronic nature of the possible measles problem in a subgroup of children in the autism spectrum led me (SMB) to consider that a lengthy treatment that pushed Vitamin A levels toward the high end of the safe range would make sense in that it answered the need of parents to observe their children over a period of a few weeks or longer to judge progress if any should occur and it gave time for monitoring a slow increase intake to avoid surprises of toxicity. My own experience with this approach in my patients did not yield positive results. Meanwhile Dr. McCandless, inspired by Teresa Binstock’s and my literature search showing this to be effective in children with wild measles and also as reported from English parents with 2-day high dosing, began suggesting that parents who fit certain criteria might try the two-day protocol, followed by maintenance doses only for at least 6 months before doing any more mega-doses. Her preliminary clinical study of salivary secretory IgA rubeola antibodies done with Dr. Ari Vojdani at Immunosciences has revealed an elevated level in 14 of 32 children tested. Those with very high levels were some of the best responders to this protocol, and other positive feedback started coming in from parents doing the protocol. Another study is almost completed checking both the serum IgG rubeola antibody level as well as the secretory IgA salivary antibody level to see how these two correlate along with clinical assessment and reports.
Seizing upon the positive implications of those reports and guided by the simplicity and safety of that approach (for which safety has been documented in studies of both well-nourished and undernourished children) I took the position that this approach might form the basis for clinical observations that could benefit children. Unfortunately, there are no generally available tests to reliably measure Vitamin A levels in the body; the assessment is primarily clinical observation. Signs of toxicity are a “scruffy” rash around the neck, headache, nausea, vomiting, lethargy, and excessive unusual hyperactivity. The few parents reporting whose children have shown any of these responses have stopped with no sequelae. Most reports have been very positive with some showing remarkable benefit. It is important to emphasize that this is not a treatment for autism generally (though the RDI is probably very low for Vitamin A) but only for those suspected of having measles in their systems. The risks at this time do not seem to be from the protocol itself, but from misunderstandings such as related above. High doses should not be given until a skin rash is produced, for that is one sign of Vitamin A poisoning!
Based upon existing medical literature, two (2) days of high dose vitamin A in the range of 200,000-400,000iu of Vitamin A Palmitate is the only way of proceeding that appears to be safe. Any further exploration of high-dose Vitamin A therapy must be carried out with close medical supervision. Based on the belief that children with active measles in their gut or brain are probably low or depleted in Vitamin A, the criteria as outlined by Dr. McCandless for her patients for launching into this pilot study are three or more of the following:
-History of regression after MMR (particularly in those children who had an immediate and strong negative reaction to the vaccine or booster).
-Persistent gut problems in spite of all recommended treatments.
-More than slightly elevated IgG serum rubeola levels.
-Elevated anti-myelin basic protein (MBP) and anti-neurofilament antibodies (indication of autoimmune reaction).
-Elevated secretory salivary rubeola IgA antibodies.
-Needless to say, endoscopy showing ileal lymphoid hyperplasia with vaccine strain measles by PCR, or measles in CSF studies.
(CAUTIONARY NOTE): Internet posting on an autism parent-support list has revealed some potentially harmful misunderstanding on some parents’ part concerning the use of Vitamin A. The speculation that Vitamin A may benefit children with persistent measles vaccine virus problems as has been shown for hospitalized children with acute wild measles infections has led to some parents using the mega-dosing regime with or without medical supervision with variations of dosing and agents. A recent post from a parent who was giving mega-doses to her child for 4 days in a row wanted to know if she should increase the dose even more, even though her child was showing alternating lethargy and hyperactivity, because he hadn’t yet gotten what she called the “measles” rash. She stated that she had gotten this from another parent, who believed you would not have effectiveness until you got the rash. The parent was contacted immediately and told to stop all Vitamin A, and the list was given all pertinent information about the Vitamin A issue. (Her child is fine now). We felt it was important enough to alert all of you in the DAN! community of our position on this treatment.
Sidney M. Baker, M.D. Jaquelyn McCandless, M.D.3/21/2004
* Vitamin A
o Acute toxicity effects include headache, nausea, vomiting, drowsiness, and desquamation after 24 hours.
o Chronic toxicity affects the skin, the mucous membranes, and the musculoskeletal and neurologic systems.
+ Skin and mucous membrane effects include erythema, eczema, pruritus, dry and cracked skin, angular cheilitis, conjunctivitis, palmar and plantar peeling, and alopecia.
+ Musculoskeletal effects include pain and tenderness, particularly in the long bones of the upper and lower extremities, which may be exacerbated by exercise; epiphyseal capping and premature epiphyseal closure may occur in children.
+ Neurologic effects include blurred vision and frontal headache, which is often the first sign of toxicity.
o Findings also include papilledema, hepatomegaly, ascites, erythematous dermatitis, migratory arthritis, craniotabes in children, or bulging fontanelle in infants.
o Recent studies suggest that elevated levels of vitamin A may cause increased bone resorption and promote development of osteoporosis.