Our mission is to save the special child entrusted to us; to help others in need. We are truly "the happy few", far braver than the heroes of Agincourt because our courage has to be renewed with every breath, day after day after day. The enemy? A vaccine in your case? Intractable epilepsy, the hydra's head with a thousand aetiologies? And, more devastating than epilepsy itself, a superb high tech army of well-meaning, misinformed neurologists who, along with risky surgeries, unwittingly dispense ever more dangerous drugs in increasingly experimental "cocktails". Shunned and dehumanised, tagged with the junk label of "degenerative brain disease", the children demand our help. We are in perfect alignment on this forum to save the children. One by one, they are reclaiming their lives. We need one another, for each one of us contributes to this awesome puzzle that can only be solved when scientists and physicians and parents are speaking the truth to one another.
I was an Assistant Professor of French language and literature at Vassar College when Roberta was born in 1969. My left brain had been well trained in philology and linguistics, and I have continued to explore the field of semantics in the course of my present career as a consultant and translator. My right brain, however, has always wanted to be a poet. LOL, as we say entre nous. But it is my whole brain and my whole being that compel me to respond. We must continue to examine all the issue. I am choosing to focus on valproic acid and the diet because I have grave experiential concerns. We owe it to our children; we owe it to those who wish to follow us on the diet; we owe it to the diet itself - because the diet will only ever be as good as we make it. We parents have, until now, been excluded from the search for a solution to our children's problems. That has been a mistake. We own a major part of the puzzle. And, if we need researchers and neurologists and other medical professionals, they need us just as much - although I doubt many of them have really come to terms with this concept. 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.
When I first logged on to this list, I couldn't write anything because the mental dialogue between myself and you all was too complex. and too intense. Like "The Little Prince" of St. Exupery, I had lived without anybody to really talk to when, out of the blue, Rick's Magic Carpet whirled me off to a whole new planet where people spoke my own language of epilepsy, and where everybody shared the experience of learned helplessness that shreds the gut when your child is seizing and there's nothing you can do to make it stop.
I love you all as if we were cells of one big body communicating in this very miraculous medium. I believe that, collectively, we have the power to find the answers that are desperately needed.
The internet is the perfect vehicle of democracy - a medium that facilitates communication, while dispensing with impediments of location and physicality. But, to my mind, exchanging messages on the internet is essentially no different from conversing with an acquaintance ie, has nothing to do with issues of copyright. My messages originate as an expression of personal discipline - a quest.
My aim is to master my daughter's and my experience of epilepsy now, as well as over the past decades. This process, however, is constantly being informed by you all. Without you, Roberta and I wouldn't have possessed the complement of information necessary to have achieved our current level of success; nor been empowered to take appropriate control vis-à-vis our neurologists and their treatment plans. Zipf's Law in linguistics states that the rarer a word is, the more bits of data it contains. This concept expresses the value of the Parents' Keto List. The specificity (and dedication) of our focus elicits rare information and rare insight. Sceptics may scoff at the paradoxes that riddle our exchanges. But free speech is like an impressionist painting - an incoherent jumble that miraculously meshes to yield up beauty, which poets recognise as truth.
Dear fellow workers in the mined fields of epilepsy: There are many important discussions in progress. If our children succeed, the diet will prevail. If our children fail, the diet will be left to sleep again until something triggers the next wake-up call. We are truly pioneers - certainly not a novel role for Americans!
We - parents in general, and particularly parents subscribing to this list, who are helping one another to receive needed information and support – are saving - empowering one another day by day to act on behalf of our children, often tragically ill-served by an uninformed neurological community one at a time - each child being unique and requiring special attention in this bewildering collage of diverse victims of epilepsy.
I am leaving this post shaking because we came very close to losing Roberta to a three day uncontrollable status event in 1987. I am shaking because, although Roberta has had numerous episodes, there has never been a single instance of status epilepticus that, in her case, was not iatrogenic in origin. In plain English, iatrogenic means having been caused by therapeutic intervention. I'm using the word because, unfortunately, it denotes a reality shared by many of us.
If it weren't for this list and all the love, energy, knowledge, and intuition that inform it, we would surely never have stuck with the diet, which, when Roberta was on Depakote, provided all the highs and lows of a roller coaster from hell.
Re your recent posts, I believe they provide a solid basis for valuable debate - debate that could culminate in a Parents' Protocol worthy of notice by a neurological establishment that presently lacks reasoned and systematic parent input.. Collectively, we possess experience and insights that neurologists cannot achieve by virtue of theoretical training alone.
Keep the questions coming! That's the name of the game, 'til the last riddle is solved, and the last child reclaimed!
We are all in perfect alignment on this list: A solution for every child!
Parents find fulfilment by embracing their children's challenges regardless of the cost to self. But to freely choose to follow Jon on his most difficult journey is sublime. Thank you for the inspiration of your example.
We're going to have to gradually develop a comprehensive, user-friendly Parents' Protocol and this will probably be best done in a series of separate papers that can be e-mailed or mailed (topics like digestive problems; constipation problems; etc. etc.).
It was hard for our forebears to raise their children because of food scarcity, lack of hygiene etc. In solving their problems, have we created conditions that may turn out to be far worse?
Our greetings are virtual but, as Lauri pointed out, "l'essentiel est invisible pour les yeux" (the only real 'seeing' is with the heart ).
As my Scottish mother used to say on Hogmanay, "Here's tae us, wha's like us?"
return to Roberta's diet
(update 1.2: 18 July 2002)
(issue 1: 24 March 1998)