Supplements for Roberta's diet
From water to carnitine.
Dear Parents of the Brave New World: It is constantly reported that many children dislike water. What does it mean when a mammal dislikes water?
Might a child dislike chlorine? Might a child dislike fluoride? Might a child dislike unidentified contaminants in a local water supply or emanating from lead in the pipes?
Read "The Four Pillars of Healing" by Leo Galland MD, the advocate of "Integrative Medicine" featured in the article. It has excellent information on essential fatty acids, explains why yeasts and parasites may very well be more ubiquitous than formerly - antibiotic therapy causing yeast overgrowths; water supplies contaminated with giardia (of which we have routine summer outbreaks here in Arlington and Washington DC) and cryptosporidium. (We use only bottled water now: reverting to the old french standard where people spent the bulk of their money on comestibles, with lodging etc a distant second!).
Salt - like water- is every bit as vital in the management of seizures as carnitine. I think your dieticians deserve commendation for coming up with Morton Lite (the potassium boost shows some thought on their part). Better yet is the trace mineral product from Utah that was posted as being used by the Abrahams. The salt I get from a Whole Foods Market is called Celtic Sea Salt. It contains dozens of minerals and trace minerals. Micro-nutrients are dispensed in micro-doses like a pinch of salt, but the body still needs them every bit as much as carnitine or the long, long roster of essential nutrients
Vitamin C is ascorbic acid. Ester C is specially manufactured to eliminate acidity, which is a common problem, and particularly relevant. for everyone on the ketogenic diet. Acidosis is the enemy! Drugs and vitamin supplements add to the burden of acid on a diet that is already skewed toward acidity. Since we have to be detectives, we need to be as vigilant re hidden acids as we are re hidden carbohydrates. Just as there is a range of tolerance for carbohydrates which is unique for each individual, so there is a range of acid which is acceptable for each individual.
Ester C is a patented process. Solgar and other brands offer Ester C.
The combination of ascorbic acid - any acid - and the ketogenic diet, should be approached with caution. Ester-C with bioflavonoids (preferably time-released), manufactured by Natrol, is superior to ascorbic acid for many reasons, the most important being that it is non-acidic. It is important to keep the ketogenic diet as alkaline as possible, since individuals on the diet already manifest varying degrees of acidosis. Too much acidosis will bring on seizures. An abundance of low carbohydrate fresh vegetables is the best way to keep the diet more alkaline. You can find this information in "Prescription for Nutritional Healing" by James F Balch MD and Phyllis A Balch CNC. (Avery publishing Group). My personal experience is that, if I take a fair amount of ascorbic acid, a labial sebaceous gland becomes inflamed and painful from overly-acid urine. Supplements are not as hazardous as drugs, but there are often hidden problems. Anyone supplementing with amino acids (taurine, for example), should think very carefully about acid/alkaline balance in the over-all diet.
Among enzymes that you might try is bromelain (anti-inflammatory and lipid metabolism stimulant). Acidophilus would probably be a good idea if he has been given antibiotics. Maile Pouls PhD is a clinical nutritionist with a world-wide practice, the majority treated by long-distance consultation. She is co-founder of the Health Enhancement Centre in Santa Cruz, California (408.477.1100). You might want to look at her article on Digestive Problems in the magazine Alternative Medicine Digest, issue 18 (http://www.alternativemedicine.com). p41 features a 24 hour urine analysis explaining what she looks for. Among other things, she mentions giving small amounts of magnesium and sodium carbonate powder after meals to relieve gastrointestinal distress and to rebalance the electrolytes. My own preference is always for naturally occurring enzymes from fresh. raw, organically grown vegetables and fruits.
Broccoli and spinach contain oxalic acid, which interferes with calcium absorption (which is ironic because spinach and broccoli contain calcium!). The blockage of calcium might be why they provoke seizures in certain list members; or it might be the toxicity of oxalic acid itself, which is not a nutrient, but an insect repellent useful for the plant's own ends. We need to remember that calcium, among other important minerals and trace minerals, is crucial for epileptics in that it is required for normal functioning of nerve tissue. Very low calcium levels may cause convulsions. It is noteworthy also, and again ironic that two commonly used anti epileptic drugs, phenytoin (dilantin) and phenolbarbitol contribute also to depressing calcium levels.
Magnesium deficiency is a known cause of seizures. Such a deficiency would be looked for in a routine neurological work-up. Unfortunately, testing does not necessarily lead to reliable assessments of nutritional status. A deficiency would have to be extreme to be identified. The bottom line is that it's hard to get nutritional guidance from orthodox medical sources. A new nutritionally-oriented medicine is starting to develop but it is truly in its infancy. "Human Nutrition" (Burton and Foster) points out that the magnesium requirement of human beings has not yet been determined precisely. Burton and Foster also point out that individual needs for ALL nutrients vary enormously. This was one of the seminal concepts of Roger Williams, the discoverer of several of the B vitamins: biochemical individuality means that each one of us has unique nutritional needs. In view of the above, the most conservative approach to magnesium is
The best supplement I'm aware of is Twinlab's "Tri-boron Plus". It's a balanced supplement containing calcium, boron, zinc, manganese and copper. It also contains vitamin D3 and betaine HC to aid in assimilation of the minerals. If you want to use this product you would be advised to alternate with your general vitamin/mineral formula because you don't want to be giving double doses of over-lapping nutrients. Supplements in high dosages should always be viewed with caution.
The ketogenic diet is based upon the principle of fuelling the body with fats, and the body can't transport fat into the cells where it's needed for energy without carnitine. The body manufactures its own carnitine. But to do this it requires two amino acids (methionine and lysine), two B vitamins B1 and B6, and iron. Are you so sure that your child has an abundance of these nutrients so that there would always be enough carnitine to meet all the needs for it throughout all the systems of the body?
And the links are so compelling between carnitine requirements and the success of the diet, it seems to me to be irresponsible for any neurologist to put patients on the diet without prior testing for carnitine deficiency . In fact, it's pretty obvious that, even if you go into the diet with sufficient carnitine in your system, you're likely to develop a deficiency on the diet.
Dr. McCurdy (of Sigma Tau) recommends that all child inductees into the diet be placed on carnitine supplementation. This amounts to taking out insurance against the life threatening acidosis which can occur on the diet, which Roberta endured on the diet, and which Roberta endured prior to the diet when a combination of multiple stresses and valproic acid therapy depleted her always precarious store of carnitine . If you're on the diet and the body cannot make ketones (as in a fasting state compounded by carnitine deficiency), fatty acids accumulate resulting in acidosis.
For the purposes of the ketogenic diet, carnitine is not being used as a therapeutic agent, but as a nutritional supplement. This suggests to me that dosage should be started at a conservative level and raised slowly. I know from long years of experimentation that nutritional supplements tend to produce acid ash and can be hard on the system. I know, also, that if I take one of Roberta's carnitor tablets (333mg), I'm conscious of a metabolic ‘speed-up’. For me, 60 yrs / 5' 3'' / 149lbs, 333mgs translates into increased energy and less sleep (6 hours as opposed to 8 ). I suspect that if I took the 333mgs on a regular basis, my weight would eventually drop to the 120lbs of my college days. If supplementation with Carnitor speeds up metabolism, it follows that there is a corresponding requirement for additional calories if weight is to be maintained.
After dramatic initial improvement on Carnitor, we lost our seizure control and did not regain it until calories had been upped significantly. If there had been delay in raising calorie levels I can speculate that lethargy and loss of appetite would have ensued if Roberta had been allowed to decline on a dangerous status quo (ie a metabolism going full tilt with insufficient calories to fuel it - like a powerful motor always running out of gas before you can get it to a gas station). This situation scares me to death when I consider the plight of little kids who are very sick and very mal nourished. Please, everyone, let's consider very carefully and over time the premise that carnitine supplementation creates a significant need for caloric increase.
continue to From
the desk of "Dr" Walcutt
return to Roberta's diet
(update 1.2: 18 July 2002)
(issue 1: 27 March 1998)