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Roberta's story  

 

 

 

My priority in life is to reclaim my child from epilepsy.  If Roberta had sustained brain damage during her almost thirty years of mixed seizures and status events, she could never be the complex human being for whom my goal is "life begins at forty!"

She has sustained third degree burns because of a seizure; nearly drowned because of a seizure; injured her foot and broken a tooth because of seizures. But her intelligence is intact. Her spirit is indomitable. And, on the whole, I'd rather not discuss her will! 

Roberta used to be a menace on depakote. She would suddenly hurl a can at a super-market - you all get the picture without my elaborating. She's still occasionally inappropriately aggressive, but the behaviours are extinguishing nicely.

Roberta started to recover from her first MMR shot at about age 4.  Before that she was classically autistic and had seizures, but never received any medication.  Roberta's pattern is simple partial graduating to complex partial graduating to tonic-clonic graduating (in extreme cases) to status. Fear can take her from what I think is a simple partial (what her neurologist diagnosed as a pseudo seizure) to a complex and so on.  

I remember experiencing a true panic attack in Central Park where I suddenly found myself too far North and utterly alone. The physiology of panic is quite remarkable. Another example from my own life was in a hospital on the eve of major surgery. I don't do well on drugs (so why did I ever allow my daughter to be drugged out of her mind?) and had refused medication to make me sleep. I got up in the middle of the night and engaged in a bizarre conversation at the nurse's station. I wasn't asleep and I wasn't normally awake either. Just vigilant. There's a wonderful French expression for this state - the wakefulness that governs the metabolism when there's a life and death issue at stake.

The ketogenic diet clearly provides the best possible fuel to Roberta's brain and nervous system that, in her first ten years, were assaulted twice by MMR vaccine that she couldn't handle; and, in the last nearly 20 years, by drugs that took a horrific toll, namely tegretol (she was taking 2 and a half grams as a 100lb teenager!) and phenolbarbitol. Please note the above word assaulted, as opposed to damaged or impaired. I most emphatically believe that the body has the intelligence to restore its own balance if the environment gives it a chance.  

Roberta was diagnosed as having a carnitine deficiency when she was 11 years old. At that time she was being treated by an experimental clinic and was on an allergy rotation diet supplemented to the hilt with all the micro-nutrients in which she was deficient. She crashed badly after a year on this program and wound up at Texas Children's Hospital in status. At that point I lost faith in myself and in my search. The neurologists took over with their anti epileptic drugs.  The drugs caused more harm than good. 

Roberta does not have a formal diagnosis of celiac disease, but starches and sugars have always triggered hyperactivity ie, neurological malfunction.  

Roberta started the diet on 1 December 1996. I was instructed to contact either Dr Freeman, who was described to me as the foremost authority on the epilepsies of childhood; or Dr Lesser, a Hopkins neurologist with an adult practice and a sub-speciality in psychiatry. Since Roberta was then 24 years old and plagued with sporadic behaviour problems, I chose Dr Lesser.   

Dr Lesser respected my wish to initiate the diet, but he told me that patients with complex partial seizures were not good candidates (in contradiction to information posted at the Stanford web site). He agreed, however, to refer Roberta to an "upcoming adult trial at Hopkins in 3 months". The "3 months" never came. Finally, last Spring, we were told that adult trials had been called off.

Bitterly disappointed, but encouraged by Roberta's positive response to allowing fat ad libitum in her diet, we tried the Atkins version of ketosis "eat what you like as long as it isn't carbohydrate." Roberta became acidotic on the Atkins regime - seizing uncontrollably. Then I got a call from our nurse at Hopkins. We were to meet with Millie Kelly. At this point, I was sceptical, having just observed Roberta's becoming ketotic acidotic, a state we had repeatedly experienced in the course of her intermittently intractable epilepsy, and which, on occasion, culminated in status. I was seriously debating whether to go ahead with the meeting; but, in any case, it was forbidden by Dr Freeman. I was ready to forget about the diet.  

Then we had our first little miracle. Millie Kelly invited us to her home. She offered us coffee and we chatted. I knew in my heart that this woman - who has worked longest and hardest with the diet over decades, who still labours long and hard at an age when most people would claim leisure as their due - believes without reservation in the diet. I remembered a little girl who had been Roberta's room-mate at Texas Children's. "Don't bother talking to her," the nurse said. I knew Millie Kelly had seen eyes like that, and I knew she had seen them come alive again.   

She started the diet with 450mg dilantin and 3750mg depakote, and is down to 300mg dilantin and 2750mg depakote. Her blood chemistries are fine (including cholesterol) and for the first time in years she has normal liver function tests (the famous SGOT etc currently being discussed).  The diet is the most effective therapy we have experienced. It is also, in my opinion, easy for a motivated adult to follow if the meals are calculated to suit individual tastes.   

Roberta went into status a couple of months into the diet. She had not been in status for ten years, and I dare say many neurologists and many parents would have quite reasonably opted to terminate the diet then and there. We are making excellent progress on the diet, however; so, when Roberta started to go into status a second time ( a situation we were able to abort by having rectal ativan compounded for her), I had to choose between the diet and depakote. I chose the diet. 

My daughter, Roberta (28 years), fits the category you describe - deterioration after initial success on the diet.  In hindsight, it is clear that Roberta was set up for failure. Inducted with a carnitine deficiency probably dating back to the time when she was weaned from carnitine-rich breast milk, Roberta wound up in status for two reasons (1) the diet places exceptional demands on the body for carnitine (2) valproic acid places exceptional demands on the body for carnitine (Roberta's depakote level soared as she was being weaned from her secondary drug, dilantin). These "reasons" are based on strong scientific evidence well accepted by metabolic specialists. If they are controversial, it is among neurologists under the considerable influence of Dr Freeman, who has never shown much interest in the effects of nutritional deficiencies

Roberta improved on the high fat diet. And, now that she's on the ketogenic diet,  she is making remarkable progress: off depakote entirely – (was 1750mg am 2000mg pm.) Depakote was starting to kill her. I could see her failing to thrive, often lethargic, often acidotic, as liver tests became increasingly worrisome and as a pronounced tremor developed to the point that her social worker thought she should be tested for cerebral palsy. I've had the notation ‘autistic’ removed from her medic-alert bracelet because the weird array of behaviours (sudden aggression; sudden panic attacks; sudden manic bouts; sudden sensory outages and sensitivities) that earned her an autistic classification have disappeared. I don't know if we've seen our last seizure yet, but they're not the horror they used to be - and we still have her dilantin to wean.

Roberta is doing beautifully again, as when she started the diet at the beginning of December. We ran into problems because depakote should have been reduced before dilantin; also the dietician did not allow her enough calories, nor did she include the considerable carbohydrates from medications in her calculations

Roberta is now completely weaned from what was clearly a iatrogenic drug for her (depakote), is on a therapeutic level of dilantin (160mg am 200mg pm), and is stable on the ketogenic diet, with nutritional needs apparently under control. We just got back from a mini vacation at Virginia Beach. The trip was a huge success- first time we've ever gone anywhere sans seizures and behaviour problems. Think about it! 27 years of seizing, hitting people for no reason, panicking, staring through me in the most pathetic way saying "where's my mom?", swearing at people on the street, hurling cans at the supermarket! Roberta had her first truly great vacation, and so did her step-father and I!

We're still waiting for lab reports and follow-up with Dr Shafrir at Georgetown University , but I'm feeling pretty confident that Roberta's metabolic problems are under control after decades of futile efforts on the part of neurologists who wanted to stop her seizures without understanding what caused them in the first place. As for her diagnosis of autism spectrum, I believe the behaviours observed at different times by different specialists reflect fluctuations in brain functioning that have always been determined by her metabolic imbalances. Her neurologist, who trained under Dr Freeman, used to tell me Roberta was "wired differently from you and me". False. False. False. She's never had a hardware problem (is that what epilepsy is?) but a software problem (metabolic malfunction).

Roberta's development has been uneven to say the least. With hindsight vision, I do have to say that the worst decision I ever made was to have her put on anti epileptic drugs. The only benefit of anti epileptic drugs in cases like Roberta's is that they possess a diagnostic capability: when they don't work it surely means there's a metabolic problem that needs to be researched, probably in consultation with other specialists. Roberta was never investigated on a metabolic level by any of the neurologists and neurologists who attended her over the years. Of course, she's still on dilantin, but I don't think its doing too much except handicapping her to some extent

As usual, my daughter was telling me what she needed. Just as she had always wanted fat, once on the diet she wanted coffee with every meal. Caffeine is not recommended for seizure patients, so I kept saying no even to decaf. until I learned that coffee (presumably decaf also) burns in the body to an alkaline ash.  

My daughter Roberta's problem, especially now that she's off depakote (Thank God!) and doing well on the diet and carnitor, appears to have been a carnitine deficiency leading to metabolic overload, then to acidosis, then to seizures. It seems to me that her autistic behaviours and her seizures are symptoms of a single syndrome - let's call it the Roberta syndrome. 

I think the diet, by fuelling her starved brain and CNS with ketones, and maintaining a steady balance between insulin and glucagon ie minimising metabolic highs and lows, protects her from acidosis. (Perhaps the attention I pay to acid/alkaline balance in food and drink contributes also - or maybe it doesn't) . It may seem paradoxical that the ketogenic diet actually protects the patient from acidosis, but I believe that to be the case. Dr Freeman does point out in his book that acidosis does not produce the desired anti epileptic effect since the body corrects acidosis fairly quickly after induction into the diet..  I believe that depakote contributed to the metabolic mayhem that used to ravage Roberta. I believe that various food additives, excessive vitamin/mineral supplementation, and environmental factors like chlorination and ozone have all contributed, more or less, at various times in her life, to Roberta's metabolic overload. And having experienced a dehydration crisis miraculously vanishing before my eyes as soon as she was put on an IV and rehydrated), I have ceased to restrict water as per Hopkins protocol. It seems to me that, over the years, when Roberta would be suffering from intractable seizures, the situation was exacerbated by her not drinking (a vicious cycle: seizures causing her not to drink, causing more seizures

I believe that my daughter, Roberta, is not the only one who gets out of acid/alkaline balance on the ketogenic diet. Roberta had to endure 6 days of torture because her neurologist could not understand what I was talking about. Roberta does not  have acidosis in the conventional medical sense. Her CO2 runs around 22 which is a low normal value. But my ‘food intuition’ has been telling me for some time now that she is ‘acid’, and I have been searching out more alkaline foods for her menus. When this management got interrupted and she was hospitalised, we got on the old merry-go-round of drugs to stop seizures causing more seizures, leading to more drugs and on and on. Her neurologist was finally willing to explore the concept that getting her more alkaline was the 'cure' and he discharged us with a prescription for polycitra, a formulation to alkalinise the body.

Roberta (28 years.) used to have the problems you describe: constipation; lack of sleep; not eating (to which I would add not drinking, which is even more serious). Previously, I wasn't even particularly aware of these problems, let alone focused on clearing them up. I now believe it is critical to address these problems with clear and resolute focus.  Before the drug era, neurologists widely recognised constipation as a problem related to seizures. Many, many factors have contributed to Roberta's success, and clearing up her chronic constipation has been one of them.

We've had a horrendous set-back, which, at the same time, is proving to be constructive. Roberta endured a terrific trauma when she was recently hospitalised for monitoring. She was so disturbed on Christmas Eve that my husband insisted on getting her released from the hospital. She kept expressing rage (cursing and kicking) to the point that the nurse's aide prayed for her release from "demonic possession". It was only after we had been home for about a week that the neurologist called with "bad news". He said he had been reviewing an unflagged section of Roberta's video tape and discovered  footage of an x-ray technician sexually molesting Roberta. We are very lucky to have had this revelation because Roberta's subsequent behaviour would have been otherwise incomprehensible. She is now engaged in intensive therapy - which boils down to my being engaged in intensive therapy. But, optimist that I am, I believe that our current efforts are serendipitous not just because of a single incidence of pain but also in terms of validating the grief and isolation of years and years of alienating seizures and medications.  

As far as my daughter Roberta is concerned, I can't claim absolute success because she's still on dilantin. But I can claim success in that she is seizure-free for the first time in 27 years, and she is a "normal" person for the first time in 27 years as opposed to being subject to a bewildering array of bizarre behaviours. I cannot distinguish readily between the effects of being off depakote and taking carnitor because they coincided for Roberta. But I do know that both factors - being off depakote and receiving carnitor supplementation - have played an important part in allowing the diet to work for my daughter. My ‘story’ is merely anecdotal. But certain biological facts are irrefutable.

continue to   Isabel exquisita
return to   Roberta's diet


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(update 1.2: 18 July 2002)
(issue 1: 26 March 1998)