Another Letter to the Mother of an Epileptic Child

----- Original Message -----

From: XXX

To: dogtorj@bellsouth.net

Sent: Friday, September 14, 2007 10:23 PM

Subject: epilepsy in a child

Hello there,

My son has an intractable seizure disorder - he is ten and also has brain damage and cerebral palsy. His disorder is called Lennox Gastaut Syndrome which isn't a disease, just a label given to children who have similar types of seizures that medications can't control.

He has been fed via a stomach peg since 2001. I don't want to bore you with all the history, but the key facts are these:

1. Last September his diet - he is and has been on formulas since 2001 - was changed. He had had his epilepsy under medicated control for about 9 months at that time. In November he started vomiting at night, then the fits re-appeared. By March this year he was vomiting, often very violently, every night, sometimes for hours. His fits were totally uncontrolled.

2. His doctors were of little help. They tested for reflux etc, to no avail.

3. It finally occurred to me to fast him. I fasted him for three days using the master cleanser de-tox. The first night on the fast, he did not vomit. 24 hours or so after he started fasting his seizures stopped.

4. I put him back on his previous formula as by then i had a suspicion the diet change was the culprit. the fits returned but the vomiting was reduced, but not stopped.

5. I then requested that my son be placed on the Ketogenic diet believing that the ketosis in the fasting was the key to his seizures stopping.

6. he is on yet another formula feed (soy based) which was supplemented with maltodextrin for carbs. After 5 days on the diet no improvement in the fits. So .. it's not ketosis.

7. It must be his diet. I have removed the maltodextrin and am giving him small amounts of cabbage and carrot juice instead for his carbs. the fits have improved significantly, but not entirely stopped since then.

8. Today I have been researching maltodextrin..leading to MSG..leading to Glutamate ...leading to you.

Basically i want to put my son on a low glutamate, nutritionally complete diet which at first at least should be ketogenic. However, i am beginning to strongly suspect that ketosis is not the issue and glutamate is.

I would be very interested to know if you think i can achieve a low glutamate liquid diet and how i might go about that.

I hope to hear from you.

Regards,

XXX

Dear XXX,

It's good to hear from you. I am sorry to hear about your son's problems and surely hope that the information on the site will be of help. My experience thus far makes me certain that it will. :) It sounds like you are already on the right path and have seen some indications of what the diet corrections are capable of doing.

It is actually a combination of factors that make the glutamate such a serious trigger for seizures. I am now fond of stating that if we are going to call something a "cause", we had better be able to explain why it does not cause the problem in all individuals. That idea forces us to dig deeper for the true distinguishing factor that we can truly label as the cause and helps us to differentiate between causes and triggers. In some cases, this may seem like a moot point because the elimination of the trigger may stop the condition from occurring but we still should know the true cause so that we can truly "cure" the condition rather than simply successfully manage it...when that is possible.

Thimersol in vaccines and autism is a good case in point. Mercury in vaccines is not the "cause" of autism, otherwise all children who received these vaccines would have autism, right? BUT, mercury is a major neurotoxin (in fact, it is the most toxic element known to man, with fluoride being second) and one heck of a major trigger for autism, especially in those brains of individuals who are suffering from food intolerance. The results of gluten-free/casein-free diets in autistics has been astounding (www.gfcfdiet.com).

Same for glutamate in epilepsy.The high dietary levels of glutamate (and aspartate) are waaaay too much for the brains of individuals that are already diseased by lectins and viruses. I now believe down to my socks that viruses are the ultimate cause of epilepsy (and autism). The lectins of those foods to which the individual is sensitive start the damage in the gut (villous atrophy leading to malabsorption of nutrients), liver (reducing critical enzyme function, including conversion of glutamate to the neurologically inactive form of glutamine), and brain (gluten can kill neurons!). The viruses adapt to that challenge and during that process the individual develops an "intolerance" to the high levels of glutamate in their diet, often being provided by the very foods doing the harm elsewhere. Do you see the cascade of events taking place here?

That is the beauty of the GARD, the elimination diet that I describe consisting of the strict avoidance of all gluten (wheat, barley, rye), dairy, soy, corn and other sources of glutamate listed on the site (http://www.dogtorj.com/ ). These same foods are rich in estrogen which also serves to sensitize neurons. So, the diet puts a big Band Aid on the situation by drastically reducing the glutamate load on the diseased neurons (and liver, etc.) but also provides the long-term solution by allowing the intestinal tract, liver, brain, etc. to heal and start functioning normally again. Just the healing of the intestinal villi so that normal nutrient absorption can take place is enough to heal so many things, including the improvement of immune function (which is critical when viruses are in play).

The GARD has allowed miracles to take place in both pets and people and it makes so much sense that I still have to pinch myself to make sure that I am not dreaming that is not already part of mainstream thinking. The medical profession is getting closer with their ketogenic and now "modified Atkins diet" but they are still off the mark. Ketosis is not necessary to halt seizures. Not a single on of my now countless epileptic dog success stories came any where near ketosis. Researchers are now finding this out employing the modified Atkins diet. It is all about the elimination of the offending foods that are doing the intestinal, liver, brain, and immune system harm while these same foods are also providing staggering amounts of the non-essential, neurostimulating amino acids glutamate and aspartate and neurosensitizing and immunosuppressive estrogens. So simple. So effective.

There are other elements, such as neurotoxic air pollution and other environmental factors (including fluoridated water) and the "worst of the worst"need to actively address all of these factors. But, the vast majority will see a major improvement by the elimination of gluten, dairy and soy and the obvious sources of MSG and aspartame (NutraSweet). I do also strongly recommend non-fluoridated water. From there, we can do more elimination if needed.

I do think you can accomplish this is a liquid form for your son. Just about anything can be blenderized. You will need to OK this with your nutritionist/doctor but I do not see at all why you cannot make more balanced meals in a blenderized form. He needs more than calories, proteins, vitamins and minerals. He needs some of the phytonutrients that only fruits and veggies can provide. My newest section will be on phytonutrients, those incredible substances in food (particularly fruits and vegetables) that do so many wonderful things in our body, including the binding of lectins ( http://www.krispin.com/lectin.html ) so that they cannot do their harm. These phytonutrients (healthy sugars and glycoproteins) are crucial to optimal health. Many incorrectly think, since they don't care for or have time for eating fruits and veggies, that they will just take vitamins and that will be the same or adequate. Sadly, this could not be further from the truth. So, we need to figure out how we can provide these things in a form suitable for your situation. Hopefully a wise nutritionist can accomplish this for you. I would just use a professional juicer, I guess. Then we need good health proteins (e.g. eggs and meats). Most liquid meals are the worst (e.g. Ensure). There is bound to be a way to use more natural proteins in a liquid form. Can he not take anything by mouth?

I hope this helps. You are certainly on the right track here. The feeding situation certainly provides an added challenge but I think with a little outside-the-box thinking, this too can be conquered. I hope so.

Please keep in touch,

John

John B. Symes, D.V.M. (aka "Dogtor J")
www.dogtorj.net *
www.manna4pets.com - Life's Abundance Pet Foods
* Read- "Food Intolerance- Man and Animals versus Gluten, Casein, Soy, and Corn OR How We Won the Battle of Helm's Deep"