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Dear Dr. Stoll,
Would you have any recommendations for my six yr. old son who has this DX.?He is on two anticonvulsant's Tiagabine and Topomax.
Some people are opting for surgical resection of the Hypothalamic Hamartoma. Most Neurosurgens, in the U.S. do not recommend surgery.
I was wondering if you can suggest anything he has 0-3 Gelastic seizures daily, 10-20 seconds in duration.
Thanks,
In Reply to: Hypothalamic hamartoma/ Gelastic Seizures posted by Kathleen Davis on February 14, 2001 at 00:11:09:
Hi, Kathleen.
As you know, this is a very rare condition. Depending on exactly where the tumor is on the hypothalmus, surgery COULD be very effective.
As you know, the suffix "oma" means tumor. There is no reason to think that it will not continue to grow since is did not cause seizures earlier in life and now it is. The more it grows the worse his symptoms will be and the harder any surgery would be to perform.
Since it is so rare, and his very life is at stake, MY suggestion would be to find the top expert in this "oma", in the country and go there for evaluation &, if indicated, his surgery.
Fortunately, with the contrast MRIs now available, the exact location of the tumor can be determined prior to surgery.
Let us know what you learn and what happens.
Walt
In Reply to: Hypothalamic hamartoma/ Gelastic Seizures posted by Kathleen Davis on February 14, 2001 at 00:11:09:
Hello kathleen Davis
and Hello once again Dr Stoll and Everyone!
Today I happened back here-- after a long absence, previous to which i had been here everyday for a few months. This board helped me tremendously...thank you again Dr Stoll for your insights and for what you have set up here with everyone. Thank you again to everyone.
I am glad I happened to find Kathleen Davis's message.
I do not pretend that I could offer insight on the level of Dr Stoll's, but in the last several months, since i have been away from here, i have learned about some stultifying things. there are those in the medical field who have been able to use their very different perspectives to lead them to some conclusions far outside the mainstream. Only because they considered health issues from such a differnet point of view in the beginning, were they able to arrive at conclusions that are the result of logical, step by step, SLOW progressions.
TUMORS
this is far outside the mainstream and i do not mean to try to suggest it is just what is happening to your son, but if you can find even a shred of help from this, all the better...
tumors can be in part the accumulation of toxins from our environment along with parasites. (right here, medical doctors can already discredit this appraoch in their eyes, because it is generally not accepted that parasites can get outside the intestines. however, several careers of careful study and treatment speak to the contrary, despite that medical journals declined to publish the studies/reports on numerous occasions). Stopping a tumor from growing -- and sometimes terminating the negative effects of a tumor-- can be as easy as killing the parasites in it.
Again, consideration of this from a standard medical point of view is really fruitless and will no doubt lead to ridicule. There are few people who can speak in an informed way about these findings, and I am merely reporting about some of what I have learned. Im certainly not one of those few people!
There are a number of researchers who take this point of view. However, there is one researcher and doctor whom I know of who practices successfully with the methods that this point of view gives rise to. Hulda Clark, ND, PhD, has documented thousands of cases of medical problems terminated simply by killing bacteria /parasites/viruses/etc. (this is different from repairing the corloary dammage, but it is the first step.) Because this is so important to her ability to do her job, she invested great energy in finding a simple way to kill the invaders.
She turned to the field of bioelectrics and found many ideas about using small amounts of current to do this killing. There are many such devices, but she has prefected a simple device thats uses positive offset, direct current from a battery (about 5 volts at 30,000 herz). After about an hour, exposed bacteria, viruses, yeast, fungi, mites, and other parasites are killed, to return ONLY IF re-infection takes place.
I am running a bit off focus here, but I hope that kathleen Davis gets this. In some cases, as Hulda Clark has doccumented and as others have verified, it is possible to terminate seizures by killing parasites in this simple, safe way. (She has found that some seizures are caused by toxins and parasites accumulating in particular areas of the brain. Incidentally, she also indicated that there are components of tumors that are still not yet explainable...empty space, for example.) Let me emphasize that there are those in natural medicine who have found that seizures are *ALWAYS* accompanied by living parasites in parts of the brain.
From this point of view, parasites are drawn to particular areas of the body which are already contaminated and weakened by pollution...metals, solvents, etc (and continuing to live with these pollutants invites re-infection). She believes that these accumulations occur probably first, weakening the immunity of a polluted area. (more specific details available on request !) Certainly even mainstream environmental medicine has doccumented this relationship in principle. So since the toxins are a part of the initial probelm, what about them?
Toxins of a particuar type will build up in your body if your capacity to biotransform or detoxify them is overwhelmed. Clinical ecology tell us this much. However, chemical and other analysis of tumors by Clark and others finds that many tumors contain freon, or asbestos, or arsenic, or PCB's, or formaldehyde, or other things, suggesting that patients with tumors containting one of these things has an ongoing exposure to that substance, which has overwhemled that person's body's capacity to deal with it. (we are speaking here in general terms; there are substances which the body has no ability to biotransform, like freon or PCB's, or fiberglass, so the body tries to sequester them and form tissue around to sort of block it off.)
in any event, clark has had patients who were able to shrink their own tumors further by finding the source of their ongoing exposure and stopping it...basically, doing a thorough detox of environment, as clinical ecologists would suggest. doing this may give the body's internal natural detox system an opportunity to "catch up" with that backlog of substance to handle (again, freon, for example, will not be biotransformed; special measures can be taken for such "unhandle-able" toxins), and in a few months, the level of the toxin in the body has dimished. (as well, clinical ecology uses these basics to treat disease. the famous clinic that theron randolph created in chicago is one progressive place that uses this environemtal approach to treat diseases of various natures, which most people would not think of treating in this way.)
so...sorry for the less than eloquent presentation, but you should know that there are a number of peolpe who believe (and at least one who practice !) that the problems of tumors can be addressed in this way. (1) reduce size and corolary dysfunction immediately by killing the part of the tumor that is alive , especailly with simple electrical current.
(2) give your body's detox system the chance to handle another part of the tumor-- the chemicals in it. (by continuing to expose a body-- especailly one with a tumor-- to toxins, you are keeping one hand of your body's immune system tied behind its back.)
thats enough for now, but i could share more if anyone would like it.
As Dr Stoll wrote in his wonderful book, SAVING YOURSELF FROM THE DISEASE-CARE CRISIS, the body is amazing. Healing happens as a part of the vitalistic nature of our beings. We are so much more than just the atoms and chemicals and reactions that make us up. By removing a few impediments to our health, we free up powerful resources to cure other problems in our bodies. It certainly is noteworthy that most of those impediments were NOT extant factors that
our great great grandparents had to deal with (and consequently, were not accumulating in their bodies!).
im not suggesting that anyone pin ALL their hopes to such an approach, but certainly a few hours spent killing parasites and thoroughly cleaning an immediate environment can be done as other options are pursued.
incidentally, i have spent so much time reading, learning, corresponding, and meeting people (and building electronic devices!), because environemtal chemicals are a problem for me. as less frequent problematic episodes turned into probelms all day, everyday from chemicals all around, i had to learn whatever I could to deal with the issues. I have gone deeper and deeper, always finding a new , more detailed level everytime i have thought that it was not possible to dig any deeper. In the last several months, some of the things that i have come to understand are so profound yet so simple. i have at the very least the first steps of an educational basis for a unique entry into the medical field in some capacity.
at first, when i learned about clinical ecology, i focused entirely on the chemistry, but lately, i have been able to find research asking the question, HOW do peolpe become chemically sensitive (so that what went wrong could be corrected). looking beyond the simplistic answer of an accidental overwheling exposure has brought great insight and many more questions, but a lot of help as well.
chemically, i still am getting worse and shwoing more symptoms, but i have learned so much more about how to stop at least SOME of them...so far...
as well, i should say that i am not limited to the most rational of approaches. things can be made to happen for reasons we cant explain or understand, and there are those who can take advantage of this for the good of their health. ( i suppose deepak chopra has fashioned a career out of espousing this.) to overlook this potential avenue for help would be as silly as medical doctors overlooking acupucnture, for example.
In Reply to: Re: Hypothalamic hamartoma/ Gelastic Seizures...more information to another approach posted by Leon Cavallo (once again !) on February 17, 2001 at 14:28:54:
Thanks, Leon.
Learning is the surest way to the "top of the mountain".
Namaste`
Walt
In Reply to: Re: Hypothalamic hamartoma/ Gelastic Seizures...more information to another approach posted by Leon Cavallo (once again !) on February 17, 2001 at 14:28:54:
Leon, everything you said is really intersting. I'd agree with the idea that accumulated toxins in the body will lead to disease, especially in the body of one who is already weakened. My father died of myelofibrosis, a very rare bone disease leading to scarification of bone marrow, which causes leukemia. His hematologist/oncologist actually said this disease can be caused from long term exposure to toxins in the environment such as arsenic, lead, etc. and suggested "biogenesis" or chelation therapy. Unfortunately, it was too late to help and our society seems to take for granted all of the poisons around us. I look at my neighbor spraying his lawn with Dursban(which has just been made illegal by the epa)and not thinking twice about standing unprotected in this CLOUD of toxic insecticide every week.
In Reply to: Role of toxins in myelofibrosis/disease posted by Elizabeth on February 21, 2001 at 14:27:14:
hi elizabeth
yes, interesting huh ? who knows what can happen in this new world of pollution to much greater degrees all over-- INCLUDING in our bodies !
and if great pollution can lead to disease, think of how smaller amounts can lead to lesser but significant (and confusing to understand) dysfunctions!
who can say how dysfunction will take shape under such new terribly powerful influences ? i think so far, we can only make statements of observation. and few people will believe even the observations (to say nothing of the even more radical judgements!) because they sound so diferenrt from what was known before.
im very sorry ot hear of your father's sad case !
who was that doctor ?! he sounds like a thinker -- maybe you should hold on to him.
stupid neighbor !
one doctor i have seen "diagnosed" me with fibromyositis...i havent bothered even to look into it...just another "diagnostic name" to me...
In Reply to: Role of toxins in myelofibrosis/disease posted by Elizabeth on February 21, 2001 at 14:27:14:
Thanks, Elizabeth.
Namaste`
Walt
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