Chemar

we had hair analysis along with the Great Smokies blood test as well as radiogenics diagnosis all were in the same range showing elevated mercury we used chlorella along with other homeopathic drops, and accompanied by a combination therapy of accupuncture/reflexology/aromatherapy and biofeedback to reduce the mercury levels and to detox the system

That is very interesting Claire. although I couldnt help but notice the following I find that puzzling....does she mean her doctors hadnt seen TS?? although it has only been in the last twenty years that advances in understanding and diagnosing TS have occurred, and as we know many doctors are still very ignorant about it, it has nevertheless been documented since Dr Itard first reported on it in 1825, followed by Dr Gilles de la Tourette's detailed documentation on it in 50 individuals in 1885. Also, do they happen to comment on whether this was hereditary TS or how they believe the son "developed" it? I would be very interested in getting some more details on this as documented cases of actual TS going into full and absolute remission like that are VERY rare. It would be fascinating if someone could maybe invite this lady to visit here and give us some more details, as this would really be helpful information to many with TS

This article is here on the Latitudes/ACN website, but I know many folks who read the forum have not yet seen it. It is an excellent article by our own Dr Rogers (to whom we owe a big THANK YOU for this website http://latitudes.org/articles/finding_triggers.htm

bumpity bump for those who have TS and feel frustrated by continued tics in spite of good treatments

It is a very good thing to have threads like this one and thanks for the time you have been putting in to provide these summarizing threads Claire. I do just want to stress again...at the point of being VERY repetitive...that it is ESSENTIAL to distinguish between tics that are being caused by Tourette Syndrome and other tics. Heather raises a very important pont about the importance in NEVER putting stress on the person ticcing by in any way making them feel responsible for the tics that they cant help, or by showing your frustration that there isnt the improvement that you are looking for. And especially NEVER have them feel that you are punishing them for ticcing, which, in a child's mind, can easily translate from your helpful attempts to eliminate food or screens or even by making them swallow icky supps I did a posting recently which I am going to bump up and also put the link here. I stress again that I wrote it for the benefit of those who tic from Tourette Syndrome.....that is truly all I have experience with, and so I fully realise that things are different in other tic disorders. But, for those with TS it is encouraging to know that their ARE ways to improve quality of life by seeing the frequency and severity of tics reduced.......but it is IMHO just not being realistic to do these excellent and beneficial things with the expectation that the TOURETTE tics are going to totally disappear. Yes, sometimes they do go into remission, and yes, many people find a natural decline in their tics as they get older, and YES YES YES! using supplements, and healthy diets free of artificial stuff, and eliminating allergens, yeast and metals and other environmental toxins and strep and all the other very important tests recommended frequently here .....all these things REALLY do help to reduce tics....... BUT if you have Tourette Syndrome you tic! that is simply a fact....... and it is IMHO more valuable to accept that it is OK to tic than to become obsessed with trying to stop ticcing. Do what you can to help reduce the tic frequency and severity, but dont let the stress of doing that become another tic trigger here is the link to the thread on TS and Triggers http://www.latitudes.org/forums/index.php?...p?showtopic=772 and here is the link to the article by Dr Sheila Rogers on things that are triggers for tics http://latitudes.org/articles/finding_triggers.htm again, I commend Claire for the excellent job she is doing to make all this info so clearly available to both old timers and newbies

Excellent series of articles starting in the Mercola newsletter here is Part 1 http://www.mercola.com/2004/sep/22/blayloc...ine_coverup.htm

I would also add that we have found that my son's tics, OCD and overall health are also sensitive to refined foods vs whole foods so we avoid white sugar, white flour etc and rather use turbinado sugar and rye or other whole grain flour products.

Hi Claire, although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine. He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.

Hi Diane Andy is absolutely correct in the rights that you have in the school system. They HAVE to accomodate your children for the TS and any comorbid conditions and if they wont they are breaking the law, unless they provide you with the ability to switch to an accomodating school or give you private school "vouchers". here is the TSA website.....go to the sections on education and Education Advocacy. http://www.tsa-usa.org/ We had a private educational psychologist do the comprehensive testing on our son and write detailed reports on all the accomodations that he requires at school and the school, by law, HAS to provide them. This is only my son's second year in public school (he just started 8th grade) and I am very pleased. We had him in private education before. But I know that without the comprehensive reports and literature that I supply to his teachers, counsellors etc...perhaps things wouldnt be so smooth. When he was initially going thru the diagnosis 5 years ago it was a nightmare dealing with the school he was at then! I learnt quickly that I had to be mommy lioness I got lots of very valuable booklets and brochures from the TSA and I now provide each teacher with a copy of his psychoeducational report plus the booklets/brochures so they have no excuse. I also ensure that his counsellor and the special ed liason at the school are fully briefed on his needs, tics etc etc.

Hi you really would need to check with a person qualified for this......it is commonly suggested that children between 6-12 yo and under 100lbs should take only half the adult dose on supplements. However, adult dose ranges from 500-1000mg per day depending on the need. You could try breaking the capsule open and mixing half of the contents in with some juice. It may well be that your child tolerates 500mg, but it is just a good idea to start things at lower dose and work up. also, if your child has severe tics you truly may want to consider a full supplement program. I personally feel that the supplemets work together to produce the optimim effect. It is good to introduce them one at a time over a couple of weeks tho, so you can see what helps and what is not good for your specific needs. I would highly recommend that you provide a good pure multivitamin/mineral (NO artificial colors or flavors) as well as extra magnesium, calcium and zinc For a child of the age and weight of yours, 800mg calcium/400mg magnesium/50mg zinc per day is what I see most recommended. Just please do remember that I am not a medical doctor, and so am basing my recommendations purely from personal research and experience. It is really a good idea to formulate a supplement program under the guidance of either a nutritionist or naturopath or someone who is qualified specifically in this area.

Hi concerned mom and welcome to Latitudes here is the link to the thread on top of this forum for finding doctors who take a more natural approach http://www.latitudes.org/forums/index.php?...p?showtopic=565 Integrative doctors,Naturopaths, and others, like the DAN doctors are usually the ones who are best to see. It is a good idea to get their guidance on the supplements too Bonnie Grimaldi may be away at present and I am sure she will contact you asap. Her supps are specifically formulated for TS Some of us have followed her guidelines and come up with our own combinations of supps too. Again, doing this under a good physician's guidance is by far the best route. here is a link to what I have done to help my son http://www.latitudes.org/forums/index.php?...wtopic=687&st=0 let us know if you have any more questions

bumping up for concerned mom

Kim craniosacral therapy is excellent, but it is different from accupuncture. a good accupuncturist is so quick and accurate that the needles would be placed correctly even if your child is a "mover" I remember the first time my son went, he was very nervous and kept waiting to feel the needles go in and was quite amazed when our therapist informed him they were already all in place

Hi guest Acetyl L Carnitine is a fast working amino acid and you should start seeing results fairly soon...somethimes immediately, and sometimes a few days. At that age and weight I would think that half the adult dose would be correct ie 250mg daily I am not a medical doctor tho so please do check with your physician, especially if your child takes any medications. HTH

Just to elaborate here a bit re the pyroluria and alcoholism link. The individual WITH pyroluria induced tics does not necessarily need to exhibit alcoholism.......even if there is only a FAMILY HISTORY of alcoholism that is enough of a red flag to suggest that maybe proluria is present. I have also read that any forms of addictive behaviour(including cigarettes and other drugs) may well be indicative of pyroluria. So it is really worth testing for it, Buddy. As Claire has mentioned, the test is relatively inexpensive and simple and the treatment with VitaminB6 and zinc is simple and affordable. Also, some people benefit enormously from supplementing with MANGANESE added to the B6 & zinc. We have heard documented remarkable relief from tics after pyroluria has been diagnosed and treated.

Hi efgh good to see you here and sorry I missed this thread. the hurricane stuff has really thrown my life in a loop so I am not as "on the ball" as I like to be No, I didnt have disc prolapse. I had dislocated my atlas vertebra. As a result, I do have to be very careful about certain motions and know exactly when it is even slightly out now.....and quickly run to my chiro for a "tune up" I highly recommend the NUCCA chiros. hope you arent suffering too much with your problem. glad your sons tics are down and hope the asthma symptoms are relieved soon too. God Bless

Gina I have always been told that ACETYL L- CARNITINE is the best form to use. Magnesium stearate is not problematic if the stearic acid is not an active ingredient but magnesium oxide should generally be avoided. As Claire explained. Bonnie Grimaldi once explained this to us. Bonnie? are you still reading the forums? we would love to hear from you. I know Bonnie has been very busy with her research and so may not be checking the forums as much as before. We all owe her such a debt of gratitude for the superb research that she does, and for sharing her treatment for her son all those years ago.......just look at how many people have now been helped by supplements!

hmmmmm dont know what happened above as I am usually permanently logged in but anyway, that post was from me

Guest_B_N123 It is also very possible that you are suffering with depression which is a very real and treatable part of TS in many people. If you arent on any medications at the moment you may want to consider trying 5HTP (5 hydroxytryptophan) which helps to elevate seratonin and so help with depression. It also brings relaxation and so helps you sleep, and my son has found that the relaxation also helps the tics too. IT CANNOT BE TAKEN WITH CERTAIN MEDS THO!!!!! My heart goes out to you cos it is really other people's reactions to tics that make it so much harder isnt it. Most of the time you probably dont even realise you are ticcing till someone else does! But you really do need to take the offensive here and make some positive changes to improve your situation. dealing with depression is a major step in the right direction and I wholeheartedly agree with those who have reminded you that a healthy diet with avoidance of artificial junk can make such an enormous difference. you will start feeling better and ticcing less and then have the energy and desire to start implementing more positive changes and before you know it living with TS will be less of a burdern and life will become enjoyable again I am not just dishing out platitudes.......I really am speaking from experience! My son was suicidal 5 years ago at age 10 and today he is loving life and even appreciates the uniqueness that his TS has imparted to him. hang in there B_N123.......there is LOTS of reason for hope and encouragement!

Dear Louise I certainly do understand where you are coming from and think these are questions that many people with TS do ask themsleves, especially when they have suffered deeply with the TS and comorbid symptoms. When we had our children we had no idea that my husband carried the TS gene. He had suffered with tics etc as a child, but had internalised much of it and, although I certainly knew he was a bit eccentric, his tics were not obvious. Our first son (now 18) has absolutely no neurological issues, while our second one(nearly15) inherited the full range of TS, OCD, ADD etc. It wasnt until this son was diagnosed and we started learning about TS that my husband went "aha!" and realised that both he and his dad had all of the above. Even with the very hard time that our son initially had when his TS manifest, and with the memories of my husband's own painful childhood......in retrospect I would not have hesitated to have children. Both of our son's have brought such joy into our lives, and the son with TS has brought an immeasurable special treasure to us. But I know if I am honest, when he was at his depth of suffering 5 years ago and kept telling me he would rather be dead than live with TS, I did ask myself if I would have had children had I known the torment that TS could bring. However, now that I know that most of my son's suffering was related primarily to the horrible side effects of the medications he was on, and now that I have seen the blessing that can come from learning to live with TS, and the talents and remarkable abilities that come with it.......I realise that all life is truly a precious gift from God and that He can use all things to work for good. My life would never have been as fulfilled and meaningful as it is with this precious child in it, and I know that God blessed us with him because He had a wonderful plan for my son. So, dear Louise, life can be hard whether one has a disability or not....and it can be wonderful either way too. It really is all to do with what we make of it. If you have a desire to be a mother, then that is a God-given maternal instinct and you shouldnt let the fear of TS prevent you from experiencing one of the ultimate fulfillments in a woman's life! Yes, there are challenges in mothering a child with TS.......but the rewards far out weigh them. I sense that you may have had a hard time personally with either your own TS or someone else's and so I do hope you will feel comfortable to share your concerns and hurts and fears here, knowing that there are many of us who have been thru it too and understand. God Bless you

Susannah I am no expert on food allergies, but from what I understand most dairy intolerance in caused by lactose intolerance. With yoghurt, the lactobacillus probiotic would diminish the reactivity in lactose intolerant people. so yoghurt is usually ok..fresh or frozen PROVIDED IT DOESNT HAVE ARTICICIAL COLOR OR FLAVOR OR SWEETENER ETC ADDED I would highly recommend the Stoneyfield farm brand of natural yoghurt as it is loaded with good probiotics and then you can add your own good stuff to it in the form of fruit, maple syrup, honey etc also, re the corn syrup.......it is primarily the chemical HIGH FRUCTOSE CORN SYRUP that is the problem, although some people with generalised corn sensitivuty should avoid all corn syrup. all the best to you as you make these adjustments. I hope you see rapid and rewarding results

bumping up for the person who emailed me....sorry I couldnt reply personally as you didnt include your email address, but I hope this answers the questions. Also wanted to add the link here to Dr Duncan McKinley's website again Life's a Twitch http://www.lifesatwitch.com and the link to the treatment protocol that we used with success for our son is here http://www.latitudes.org/forums/index.php?...p?showtopic=687

Hi Gina yes, it seems that many people find relief from vocal tics by taking up to 500mg of ACETYL-L-CARNITINE daily. It is also reported that it has a general calming effect. however, as with all things, some people get no benefit from it and some also dont tolerate it well (nothing bad, just "know" it isnt right for them) My son used to find it very helpful a few years ago, but his metabolism etc has definitely changed and it, along with some other supps, are just not beneficial to him now. it is always good to start out at the lowest dose and then work up gradually overall the reports on reduced vocal tics from this amino acid are encouraging. HTH

Hi based on a lot of recent posts to the forum as well as emails and private messages I receive I really felt it was important to make the distinction once again between tics that are a result of Tourette Syndrome and other tic disorders. Tics can have their origin in a number of variable conditions. Evidence clearly shows that there are certain things that can trigger tics, and that there are treatments and dietary and other modifications that can help to minimise or eliminate these triggers and so help to reduce the tics. However one thing that should always be remembered is that THE MOST CHARACTERISTIC THING ABOUT THE TICS CAUSED BY TOURETTE SYNDROME IS THAT THEY WAX AND WANE. Sometimes one can identify a trigger for this, BUT very often it remains a mystery. I feel sure that there is some physiological explanation for the waxing and waning in TS, but to date there is no clearcut answer, only many plausible theories. One can be doing all the right things in terms of diet and supplements, and be stress free and well rested, and have eliminated all toxicity and allergens and everything else that could be a potential trigger and then suddenly experience a waxing period as I have documented before, we have even noticed a waxing phase that follows the moon's waxing......it sounds sci-fi.......but after almost 5 years of keeping a monthly chart I simply know it is a fact. I cant explain it scientifically(although I have read many interesting articles on the theory behind the effect of the lunar cycle on neurological issues) In our case, what we have clearly found by following the natural treatment protocol that has eliminated toxins and allergens and other triggers, and implemented good diet and supplements......... is that the intensity and the duration of the waxing phases IS much reduced......... but the waxing and waning still happens, sometimes we can identify a trigger, and sometimes it takes us by surprise. PLEASE NOTE that I am specifically talking here about TICS CAUSED BY TOURETTE SYNDROME...... so to those that are feeling disheartened because you are doing everything right and yet you are still seeing tics wax "inexplicably".........you are not doing anything wrong......it is simply the waxing and the waning that is inherant in Tourette Syndrome! Just keep doing all you can to identify and minimise your known triggers...... and keep up your healthy diet and your supplements it DOES help and things could be a lot worse if you were not doing all the good stuff....... but people with TS have tics, and the tics come and go.......dont get stressed out by it, that only makes it worse. And always be encouraged by the fact that for most people the tics do naturally diminish as they pass the teenage years. Try to focus your life on the many talents and abilities that people with TS are blessed with and dont let your TS bring you down. It's OK to Tic!! with blessings and love and dollops of understanding and compassion for what you go thru

I just wanted to let you all know that it is currently hard for me to be on the forum as often as I would like to........we recently had Hurricane frances over us just a few weeks after Hurricane charley and now they are forecasting that Ivan is headed our way. We go thru power outages(another today) as they try to get everyone back up (6 million lost power last weekend) and are repairing roof leaks we are all very anxious as Ivan would be just devastating for an already severely damaged and flooded Florida we value your prayers for all who are suffering from these storms. i have lived in Orlando for 14 years and have never had hurricanes over us this far inland before so this is just unbelievable. I will pop in when I can, but just wanted to explain my inability to answer questions and emails promptly at present.