Rose Posted April 21, 2004 Report Share Posted April 21, 2004 Since my son was diagnosed with TS two years ago, I have scoured the web for any info on what causes this disorder. I have come up with a theory, and my son says that the first thing you do when you come up with a theory is to try to shoot holes in it. So, I hereby invite all comments, pro or con, to the following theory: THEORY: ALLERGIC RESPONSE TO VARIOUS SUBSTANCES RELEASES VARIOUS PROTEINS OR ANTIBODIES WHICH ATTACK THE NERVES (or the myelin on the nerves). THE TYPE OF RESULT OF THIS ATTACK ON NERVES (TICS, OCD, AUTISM, ETC.) DEPENDS UPON THE SPECIFIC TYPE OF NERVES BEING ATTACKED. I THEORIZE THAT THE REASON TICS CAN CHANGE SO FREQUENTLY IS BECAUSE DIFFERENT ALLERGIES MAY PRODUCE DIFFERENT ANTIBODIES WHICH TARGET DIFFERENT TYPES OF NERVES. What I know and what I have observed that support this theory: There are different sizes and functions in the various nerves that make up the nerve bundles. If a nerve is damaged, it will not work properly. Tics and obsessions in TS "move", or change. To me, this indicates that DIFFERENT nerves are involved. For example, eye-blinking would involve different nerves that a diaphragm tic. Some of the nerves seem to misfire, and others seem to be getting erroneous input. I would refer to a tic as being a misfire, and I would call an obsession an erroneous input. I also think about dislike of certain textures as being an exaggeration of a nerve input...(like after you have had chronic pain for a period of time, you react emotionally out of fatigue, and the pain seems worse.) I have been working with kids for many years now. I am seeing kids who are having tics, autism, ADHD, OCD and other disorders at an increasing and alarming rate. I also read the labels on food and see that there are substances in our foods that we never had before. HMMM. Many of the supplements we have been giving for trying to treat kids for these ailments are specifically ones which are involved in proper nerve functions. I don't know the answer to this, but perhaps some of you will answer this: How many of the pharmaceutical drugs being given for these ailments are intended to target the nerves or the nerve receptors in the body? How many of these drugs have the potential to inadvertently have this effect? What can anyone tell me about the latest research being done with myelin therapy being done with autistic spectrum disorders. With Mad Cow Disease now in the US, the idea of giving myelin supplementation for these disorders seems out of the question, but I am very interested in keeping abreast of what they are discovering. How many of these symptoms that you are describing in this forum could be explained through this theory? Are there any that do not. Please, discuss these. I truly want to do what my son suggests.... to try to shoot holes in the theory. Rose Link to comment Share on other sites More sharing options...
Chemar Posted April 21, 2004 Report Share Posted April 21, 2004 Hi Rose very interesting theory, and, based on what a lot of us here have noticed, probably has areas of merit. Main criticism that I have is how do you explain the genetic inheritance of TS spectrum disorder. In our family it was passed from great grandpa to grandpa to my husband to our youngest son. Our older son (almost 18) shows absolutely no sign of TS or the comorbid conditions like OCD,ADD,SID etc that my husband and younger son have, yet he is similarly allergic to dustmite, mold, certain pollens, penicillin and some of the foodstuffs that his brother with TS reacts to. We have reduced allergic reponses by eliminating Yeast(Candida) overgrowth in their systems, and they can now tolerate many of the foods that they were sensitive to. Yet, both my husband and younger son still have tics, but my husband doesnt seem to have any allergies/reactivities. So, although your theory may well have a basis for general tic disorders, I am not so sure that it holds true for the genetic transmission of Tourette Syndrome, although I feel certain that allergies DO worsen tics, but not that they actually CAUSE them in Tourette as opposed to non-genetic tic disorders. I am not sure if you are familiar with the excellent research done by Bonnie Grimaldi on Tourette Syndrome........her theory, which is receiving some very accredited support, is based on the premise of a MAGNESIUM deficiency linked to the TS gene. ( http://www.bonniegr.com ) She has mentioned in interviews that she does feel that food sensitivities can exacerbate the magnesium deficiency, so there again, your theory is of interest. Thanks for posting it Link to comment Share on other sites More sharing options...
Rose Posted April 21, 2004 Author Report Share Posted April 21, 2004 Hi Chemar, Thanks for the reply. There again, magnesium plays an essential role in the function of the nerves. Calcium and magnesium must maintain a critical balance in the body. Calcium triggers the muscles to tense and contract, while magnesium tempers the amount of calcium that can enter the cells. I have made an interesting note that one of my father's brothers died of an early age of rickets, a calcium disorder. I wish to add that my father's family had cows, so I don't believe that it was a nutritional deficiency as much as a genetic one. My mother has also had problems with milk products all her life. Anyhow, my side of the family has the history of Tourette Syndrome, but it has never been labeled as such until my son was diagnosed. I drank a lot of milk when I was pregnant with my son, and he has always consumed a lot of milk up until lately. While my son only shows a mild sensitivity to milk, I must wonder if that sensitivity contributed to his magnesium going out of whack. Moreover, could a mild sensitivity to milk products (which he showed signs of even as a baby) be the factor that set the T.S. in motion? What if the very same antibodies that are reacting to the milk products are also reacting to the calcium or magnesium in the nerves? Could the antibodies go after the nerves which contain the calcium and magnesium? I wonder. What I also know is that, when his tics were the worst, magnesium supplementation had very little effect on him. Removing the foods to which he has had the allergic response have been far more effective (I have recently registered here and have taken Rose as my username, but I also wrote as M.C. prior to registering. Hence, the "Hooray, my son has food allergies!" is also my post.) So yes, I agree that the genetic factor is perplexing, but perhaps it has something to do with the calcium/magnesium balance issue, which both play a critical role in nerve function. Again, all comments are welcome. Thanks for yours. Rose Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted April 22, 2004 Report Share Posted April 22, 2004 Hi rose How are your son's tics after you eliminated the offending food items like eggs, dairy, etc. Would be interested to know the progress.. thanks for keeping us posted. efgh Link to comment Share on other sites More sharing options...
Claire Posted April 22, 2004 Report Share Posted April 22, 2004 Hi Rose/MC, As Chemar said, we have such a mix even here of tic disorders vs Tourette's, and although there is overlap, it is hard to see where it begins and ends. I think your theory makes a lot of sense--for those people for whom food allergies are triggers. For those with TV/computer/flicker as a trigger, then the path is different, etc.. Or virus issues, as some suspect. First, I am a believer in certain foods triggering tics in certain kids. For those with food allergies, I still think your theory would need expansion to why they have those sensitivities, e.g. 1) Why do some people get skin or respiratory reactions and others nerve reactions? 2) What in life made them so sensitive to the foods, e.g. what immune system issue such as yeast or genetics or whatever. Claire Link to comment Share on other sites More sharing options...
Rose Posted April 22, 2004 Author Report Share Posted April 22, 2004 efgh, Please see the "Hooray! My son has food allergies!" post for how my son is doing and the specific foods to which he is mainly allergic. (I previously used M.C. as my unregistered name.) Claire, visual input through the eyes is carried to the brain by.... nerves. As I stated above, the nerve bundles are made up of many different sizes of nerves, and with many different functions. With my theory, if the nerves responsible for carrying visual stimuli to the brain are damaged in some way, they will fire at a very low threshhold. If you are familiar with how a capacitor works in an electrical circuit, the firing I am referring to acts very much like this, firing at a greatly reduced input level. Another way of looking at this concept is to consider chronic pain. I once had neck pain for years. Even though the pain was not severe, the fact that the pain was incessant for years on end made me frustrated and in many ways made my neck bother me more than the actual pain. Or think of how badly a sunburn hurts or irritates, even though the skin may not really seem like it has undergone much damage. With a sunburn, the nerves have undergone an injury and send constant input to the brain. If you just brush against the skin, it hurts. In other words, the nerves fire at a much lower threshhold than they normally would because of the injury they have sustained. So, I don't see that the TV trigger (stimulus to nerves responsible for vision) is an exception to the theory. I maintain that those nerves that carry the visual input to the brain have undergone some form of damage... and I speculate that this could be some type of damage or pressure on the myelin that causes the nerve to misfire and to react at a low threshold. I still would have no idea why certain nerves would be attacked while leaving others unaffected. Perhaps there are variations in the make-up of the different nerves, or perhaps certain nerves are simply more susceptible than others, genetically speaking. The transient nature of my son's tics leaves me wondering why the tics change from one to another and then come back again. Different substances attacking at different times? I don't know. I think that stress, in general, might be a critical factor in whatever is going on. I guess that would be the next place to look: What specific things go on in the body when one is under stress? Thanks for the response. Rose Link to comment Share on other sites More sharing options...
Chemar Posted April 22, 2004 Report Share Posted April 22, 2004 Hi Rose Have you followed the story about the first ever Tourette Syndrome patient to undergo DBS surgery and the astonishing success of the procedure for him. I am interested to know how you would apply your theory there.......? Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted April 22, 2004 Report Share Posted April 22, 2004 Hi Rose Interesting theory. Good to know your son is doing well now after eliminating food allergens. One question - BAsed on your theory , how do you explain the fact that most kids with TS get better with age.. Why do the tics get most severe around 10 years of age.. why do most kids tend to get better after that... thanks.. Link to comment Share on other sites More sharing options...
Rose Posted April 22, 2004 Author Report Share Posted April 22, 2004 Chemar, It is my understanding that the way that Deep Brain Stimulation works is by blocking off the nerve impulses coming into the brain from the spinal cord. It does this by causing endorphines to be released in the brain which then bind with the opiate receptors in the spinal cord.... effectively shutting off the spinal cord. So, whatever is going on in the nerves that have undergone damage, the transmission of those impulses are just not getting to the brain and back... hence, no tics. EFGH, That's an interesting question. While (of course) I don't know the answer, I wonder if it goes back to the idea of calcium/magnesium imbalance in the nerves. My son's worst tics have often coincided with periods of tooth activity and growth spurts, so I wonder if the body's need for calcium (and other bone-building materials) elsewhere tends to worsten the imbalance and intensify the tics. Rose By the way, for those of you who have used GABA and have found some positive results: Are you aware that the way that GABA works is by shutting off (inhibiting) the transmission of nerve impulses produced by the small nerve fibers? Unfortunately, by ingesting GABA, there would be no way to control or target WHICH impulses were being blocked, so I imagine that GABA could cause as many problems as it helps. I am also coming to believe that tics are a natural defense or reflex that the body has in place to shut off the transmission of neural impulses. You see, when you create activity in the large nerve fibers (shaking, vibrating, etc.) it releases.... GABA, which blocks the nerve activations. AND>>> acupuncture near the affected nerves has the same effect. (ARE WE HAVING FUN YET, FOLKS? Rose Link to comment Share on other sites More sharing options...
Chemar Posted April 22, 2004 Report Share Posted April 22, 2004 Rose, I would tend to disagree somewhat with the generalised statement that "GABA could cause as many problems as it helps"......simply based on our experience and that of others. I think that GABA, like any other supplement, has to be used correctly to reap the benefits, and causes problems when used incorrectly. We dont use it continuously, but rather on an "as needed" basis....similarly the accupuncture. And the benefits of both are worth it........calm, relaxation and a rapid decrease in tics /anxiety/OCD etc. When you have a child in crisis.....it is like a miracle to see them calm down! Based on your clearly educated replies...I am curious to know if you are trained in any of the biological fields? Also, have you had any contact with Bonnie on your theory? I think she would be very interested. Link to comment Share on other sites More sharing options...
Rose Posted April 22, 2004 Author Report Share Posted April 22, 2004 Chemar, I have no specific training in these fields; I'm a teacher, actually. When I found out that my son has TS, I was extremely frustrated by the lack of knowledge my son's pediatrition had on the topic, and I have been bewildered at how so little is understood about autistic spectrum disorders. I, like everyone else here, would do anything possible to help my son overcome this condition. I have been trying to learn as much as I can on all of this, and I have been trying to piece together EVERYTHING I am learning into some type of framework that explains what causes TS. I have been disillusioned in the medical field for being so willing to treat the symptoms without delving into the cause. (My son's doctor pooh-poohed allergy testing and would have gladly prescribed meds.) I went ahead with the allergy testing anyway, and then I brought the results to the doctor. If the doctor is not the expert, then I'm going to have to be. That's my attitude. ACN has been a godsend to me, as I think it comes closer than anything else out there to being able to actually HELP get to the root of what is causing TS. I'm merely trying to learn everything I can about neurology and am trying to find the common thread that ties all of this together. My theory makes sense to me, even though I'm not sure what other research is out there that might be able to "poke holes" in it. The latest tidbit that I have uncovered has to do with stress producing Interleukin-2 and an alternative tidbit about Interleukin-4 stimulating the production of IgG and IgE antibodies. I have to wonder if there is a connection between the two. Rose P.S. No, I haven't been in contact with Bonnie. P.S.S. I have a question for all of you reading this. Have any of you ever tried using a vibrator (massage) on your child around the area of the tics? I ask this because of what I said earlier about the stimulation of the large nerve fibers blocking nerve transmissions. I would try this on my own son, but he isn't experiencing any tics right now (NOT COMPLAINING!!!). I'm wondering if there would be any effect. I suspect that if there were any effect, that it would be on tics that were less deeply rooted in the body, such as maybe ones in the neck area. If anyone is so inclined and has a chance to experiement with this, please let me know what happens. Link to comment Share on other sites More sharing options...
Chemar Posted April 22, 2004 Report Share Posted April 22, 2004 AHA! a teacher.....so that is why you are so methodical For your interest, my son (and MANY others who have TS or other neurological issues) also have Sensory Integration Dysfunction (SID) and one of the occupational therapy techniques to help with this is skin massage(with those little wooden roly poly things) and skin brushing. My son has frequently found that both the massage and brushing calms a tic area. Also, he and others with tics have said that tensing sometimes blocks tics...eg clenching his fist or tensing leg muscles etc. Link to comment Share on other sites More sharing options...
Ausclare Posted April 23, 2004 Report Share Posted April 23, 2004 Wow, this is the most amazing site I've ever found. I'm almost addicted to logging on everytime I turn on the computer! Rose, I have also wondered along the lines you've been thinking, but I've never been able to put them into words. As far as I know our situation is not hereditary, and I haven't done as much research as I would like, but inside I really feel that you are on the right track somehow. I also wonder if your research would help Multiple Sclerosis sufferers? My oldest sons tics increase if he is coming down with an illness. But how do you explain the tics stopping when they sleep? What is GABA? Ausclare Link to comment Share on other sites More sharing options...
Rose Posted April 23, 2004 Author Report Share Posted April 23, 2004 Thanks, Chemar. That's good news. I've never tried it, but I will if the tics return. Have you found that some tics respond to massage more than others? Ausclare, Again, I don't know, but I would have to guess that there are similar effects to those of Deep Brain Stimulation. I see that a study has been done that found that endorphine release by the brain does not seem to be the factor stilling the body during sleep. in the study's conclusion, the researchers raised a question of whether or not there might be some other type of endorphine receptors of which they were still unaware. It's interesting to note that scientists have not yet discovered why sleepwalking occurs, either. In normal sleep, it is believed that the body undergoes a paralysis which renders our bodies immobile. Sleepwalkers don't seem to be "paralyzed" properly. I suspect that whatever causes this sleep paralysis is also responsible for the tics shutting off during sleep. GABA is just one of the many chemical neurotransmitters present in the nerves and responsible for "message" transmission in the nerves. GABA, produced by the large myelinated neural fibers, inhibits neural transmission. GABA is also available in supplement form, but there has been some question as to how it can be effective since it is not believed that GABA can cross the blood-brain barrier. GABA, however, is also present outside the brain. I think that GABA's effectiveness in supplement form (evidenced by testimony given here at ACN) offers some evidence that the dysfunction in TS is in the nerves of the body rather than (just) in the brain. Rose Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted April 23, 2004 Report Share Posted April 23, 2004 Rose, That is really interesting. From you theory, can you give me some clue on what I am undergoing.. My son gets vocal tics ONLY when he watches TV (he repeats the sounds that he watches on the TV). He is fine without TV .. From your theory, how do you explain the fact that he GETS VOCAL tics only when he watches TV. (the emphasis here is why vocal tics from TV and not his usual motor tics..) thanks. Link to comment Share on other sites More sharing options...
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