Chemar

Hi efgh the jury is still out on what caused the waxing seen by so many....I am not sure if you followed my thread on it on BrainTalk but the response was rather amazing as to folks who havent seen quite this intense a waxing in years! It seems many feel it is the pollen, but, we have had pollen before so........ At the risk of sounding odd, I am leaning toward the Lunar influence. I am finding enough credible info to lead me to believe that there is definitely a link in the Lunar cycle, and the fact that the last full moon was very notable just adds weight to this. Probably has to do with Spring Equinox and all that stuff. Anyway, I am pleased to say he is definitely on the wane again, tho still not at the baseline that he was at before the end of March.....during this waxing phase all his tics were up, with vocal just being the most evident His anxiety and frustration levels were also up. But it is good to see things settling down again...just in time for the next full moon!! As to seasonal variations...my son always seems to have(before now) his waxing in Dec/Jan, which is when his TS "began" 4 yrs ago. Heat is a trigger for him and so if he overheats in summer, he tics more.

Hello Audrey and welcome I really feel for the situation you are in as four years ago my son, then ten, suddenly started showing severe TS and OCD etc. We tried meds for a year because the physicians told us that was the only way....but in fact the drugs only made things far worse and so we began a natural treatment regime under the care of an Integrative Medical Doctor(trained conventionally, specialised in Alternative Med) She and her team helped identify and eliminate Candida(yeast) and Mercury from my sons system, and ran tests to determine his vitamin/mineral needs. At the same time, learned about Bonnie's research(her products were not yet on the market then) and I devised (with the physician's guidance) a supplement regime to help my son. His OCD was his most bothersome symptom, and we found great relief from supplements there too. Also accupuncture, reflexology and resonance biofeedback helped enormously! I see you mention that your daughter is on Zoloft, and so I have intentionally not detailed the supps we use for the anxiety/OCD stuff as some of them interact with drugs. I too would STRONGLY caution against SSRI use like Zoloft in a young person. My son was on Luvox and it messed him up big time and actually intensified his tics and caused self injurious behaviour. As soon as he came off it, things improved. (He also had tried Haldol and Zyprexa, and naltrexone...all with horrible side effects) Just another word of advice.......supplements dont have their full effect ewhen used with meds, so that is why your daughter may not be responding to Bonnie's supps. Also, it may just be that Bonnie's formulations isnt what she needs, and you need those tests to show what she is deficient in I would also like to draw your attention to PYROLURIA.....a recently discovered condition which causes tics and mood/behaviour problems. Non-response to supplements can often be a hint that Pyroluria is present Here is a thread on BrainTalk that explains it and it's treatment http://brain.hastypastry.net/forums/showth...ead.php?t=10944 Please dont hesitate to contact me if you want more details on the treatments that have worked for us. I just didnt want to overwhelm you by going into it here. Cheri

You are spot on there, Claire!

FJ* from BrainTalk has posted a very informative and detailed account of Pyroluria induced tics. She is unquestionably an expert in this area, both by personal experience and by virtue of her biochemical training edited as link no longer works since the infamous crash of 06 that lost the main database for braintalk

Hi wondering yes, Essential Fatty Acids are very beneficial in helping with tics...some people seem to be a bit sensitive to the fish oils tho, while others tolerate them just fine. We use a combination of Flaxseed, Borage, Evening primrose and Fish Oil and it works wonderfully. From your previous post...has your son been to see a pediatric neurologist or a developmental pediatrician? That truly is the best way to get an accurate diagnosis. It is also important, with any form of shaking, twitching etc to rule out seizures. I can only speak from our experience, but we dont really ever see shaking" tics.....they are rather well defined twitches or movements. So many different things can cause movements in young children, including transient tics, which most kids grow out of. With Tourette Syndrome, there is usually a family history of tics.

Ausclare.....I am on my way out but quickly wanted to respond to 2 things you mentioned..... Firstly......the fact that your son "lets it all out withyou" is a blessing! It shows that he feels absolutely ok to be able to trust you and just be himself and not try to suppress etc......that is a tremendous compliment to you as a mom and a credit that you have been able to build such closeness with him Now, as to the "holding it in" at school......although everyone with TS does suppress in ceetain social environments....still, your son needs more of an outlet at school than just at playtime.....!! Suppression for any length of time actually INTENSIFIES tics, and can also TRIGGER OCD, rage, anxiety and other stress related behaviours. I often liken it to shaking a bottle of soda with a cork in it.....eventually the cork is going to burst out! Well, that is what it feels like for a person who NEEDS to tic but holds it in for too long....the pressure builds and builds until eventually it bursts out as intensive ticcing, or worse! I dont know if you have told the school yet about his situation, but I personally would recommend that you do, and also that you provide them with as much info as possible about it. Once the teachers, and also the other kids, are aware that this is something that your son does not have absolute control over, it will make life a lot better for him, and will also foster more understanding and acceptance by his peers. That in turn will help him to relax more at school and you wont have the "megaburst" afterward!! Believe me, i speak from experience on this one Hve you visited Dr Dunc's site yet? Life's a twitch at http://www.lifesatwitch.com He is a psychologist who also has TS and he does a lot of seminars etc talking about what I have mentioned above...where suppression of tics for any length of time is not good...especially because of the rise in OCD that seems to follow. I have to dash now, but hope this gives you some info to work with. bye for now Cheri

Hi Leslie here are the links that were posted for finding physicians that are specialised in natural medicine, while still being fully qualified conventional docs. (The original thread link is posted below as the info in it given by Dr. Sheila Rogers may be very useful ) http://www.aaem.com http://www.acam.org the thread is at http://www.latitudes.org/forums/index.php?showtopic=79 There are a number of supplements that help with moods, but it is a good idea to first see a doctor, and get a clear diagnosis. Especially if your daughter only has motor tics, not vocal, she may not have "classic" TS but rather be dealing with other issues. Have you had a clear TS diagnosis? I know you mentioned being on meds......is she now off them? My son actually got MUCH worse on meds! We didnt see a DAN doctor, but instead had help from an Integrative Medical Doctor (like many on those lists above) who works with a team of people, each specialised in a particular area, so that a very comprehensive treatment is provided. The tests we had run were similar to those that Clare mentioned, but mostly bloodwork and also radiogenics. I would also mention that it is very important to have a bloodtest to detect whether your daughter falls into the PANDAs category...where tics, moods, OCD etc etc can be caused by strep and related viruses. This is NOT necessarily just the "strep throat" virus, but others that dont always manifest in the recognisable forms, but instead cause all these other issues. Some people, especially those who are not necessarily "classic TS" just dont respond to Bonnie's vits because there are other problems underlying their tics and moods etc. That is why testing for PANDAs, Yeast(Candida albicans), Mercury or other heavy metal toxification, etc. are so valuable. My son also found enormous benefit from accupuncture, biofeedback (this is NOT the same as neurofeedback, which I dont recommend) and reflexology Leslie, I know it must be very hard to deal with all this, especially when it seems your daughter is not wanting to avoid the foods etc that could make things worse...that is tough! If you could find a good psychologist who could help her work thru her struggles that may help....but it is so important to find a sympathetic therapist!! There is a great website that many young people seem to relate to well called Life's a Twitch. http://www.lifesatwitch.com Dr Dunc is a psychologist who has TS himself and has a wonderful way with youth. He is also very gracious in replying to emails. There is a chatroom for kids called the Haven on his site. For my son, the biggest breakthru in his battle to live with TS/OCD/ADD/SID was when he began to educate himself and when he accepted it, and became determined to live a full and happy life in spite of it. His "oppositional" attitude changed, and now, at 14, he takes really good care of his diet because he knows and avoids things that set him off, and is diligent about taking his supps. Most of all, he is very upfront with others about his TS etc, and so has formed good friendships and acceptance from the kids around him. I do hope my long ramble will give you some pointers Do stay in touch here.......it is a great community of caring, sharing people!

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.

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.

efgh by appropriate dress for hot, sunny days I mean he covers as much exposed skin as possible with light but protective clothing so that shoulders,head, neck and face are shielded My son really just cannot tolerate extreme heat and so doesnt like the beach etc, and his chlorine sensitivity eliminates swimming pools. The schools have also exempted him from outdoor PE/sport in the heat. When we are at an outdoor activity, he tries to stay in the shady areas. We have known for sometime that heat and intense sun do trigger his tics Our naturopath is very anti-sunblock because of the "hazardous" chemicals, fragrance etc

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.......?

Hi Mommy and welcome as Heather has mentioned, we had a nightmare year with prescription meds, but have been med-free for almost 3 years now with remarkable improvement coming from using alternative therapy. Ronna is our "expert" on PANDAs and has just returned from a trip abroad, so I am sure she will be checking in soon and be able to give you lots of good info.... If you start back reading the threads here you will gain enormously from the experiences that have been shared with regard to allergies, heavy metal detox, Candida)yeast) elimination, supplement treatments, biofeedback, accupuncture and careful diet, avoiding artificial stuff that have so helped. My son's OCD was always more troubling than his tics, but thankfully is now almost negligible thanks to corrective supplements like 5HTP, St John's Wort and Inositol..... again, welcome to the Latitudes Community

We dont use any sunblock as it intensifies my son's tics. He dresses appropriately and wears a cap and sunglasses, but, as extreme heat is just not good for him, he prefers to stay inside or in the shade outdoors on those kind of days.

hi Searching his supp program has varied a bit with his symptoms, but this is what he is on now (14yo, 150lbs) I have highlighted the OCD stuff and added the doses. He is NOT currently taking GABA, but does when anxiety increases (havent seen that in a wonderfully long time) MORNINGS 1 multivitamin/mineral (the multi has all the good antioxidants etc, and is high in the B group vits, and I add a B1 and a B6 ) 1 combo flax/borage/omega-3 oil 1 Evening Primrose Oil 1 Lecithin 2 ginko biloba(for ADD) 1 St Johns Wort (for OCD) 300mg 1 L-Carnitine 1 Royal Jelly 1 Inositol (for OCD) 500mg 1 GrapeSeed extract 1 Bilberry(for vision and antioxidant) in the evening he gets 1 5HTP (for OCD-) 50mg 1 combo cal/mag/zinc 1 taurine 1 Methionine (for OCD 500mg We also try to watch the diet VERY carefully so he eats healthy good stuff, no artificial colors, flavors or sweeteners and NO HIGH FRUCTOSE CORN SYRUP, no caffeine and mimimal sugar(we only use pure Turbinado sugar) he likes pure dark chocolate, and is allowed some of that, and I try to make most things from scratch. Other complementary treatments that have been helpful to my son are: accupuncture biofeedback (we do NOT do neurofeedback) yeast (candida) control, along with other parasite elimination detoxification and heavy metal elimination environmental modifications to eliminate as much dustmite, mold, pesticides, cleaning chemicals, chlorine and other things that seem to trigger tics or OCD for him. Let me know if you need any more details

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

efgh I have done sooooo many posts on yeast that I dont know which thread we discussed this on, but, as Claire has stated, when you have yeast overgrowth, it just messes up your system so that you begin to exhibit a lot of food "reactivities" and sensitivities and allergies that you would not normally show. Also, if you are mildly sensitive to some things, the Candida can intensify it. Once my son's Candida was controlled, he no longer was reactive to wheat, dairy etc. I really recommend that book "The Yeast Syndrome"

Hi again Clare! You certainly have used some interesting alternatives there! For us we have found success with the supplement program mainly, reinforced with accupuncture and biofeedback. I dont use Bonnie's products for the same reason...budget.....but I am forever greatful to her for her willingness to share her research and formulations, as I base my son's supplement program on her recommendations, just fine tuned for his specific needs. I find that putting together the combinations he needs and buying good tho not expensive brands, works perfectly for my son and my budget! We didnt use kinesthetics....but did have something very similar , known as radiogenics, which is widely used and respected in Europe. The practitioner works in partnership with the accupuncture/biofeedback therapist, and they in turn network with the Integrative medical Doctor who oversees it all (we also have a chiropractor on the team, who uses a very unique form of gentle pressure chiropracty) Anyway, the radiogenics also involves vials of stuff, and you insert your finger into an electrode tube and he takes readings. It was quite amazing how his results accurately mirrored the blood tests we had done for everything from the allergens to the toxins, parasites, Candida, heavy metals, vitamin/mineral deficiencies etc etc etc. He is a homeopath & nutritionist,and so provided us with remedies and dietary advise, plus he would then make the recommendatuions to his partner in terms of the accupuncture/biofeedback specifics. Reflexology was an inherant part of this treatment protocol, along with aromatherapy. My son found the greatest relief ever from his symptoms with the accupuncture/reflexology/biofeedback. There is a wealth of info in past threads on all the treatments that have helped so many here so be sure to start some "back reading"

that is great news MC......hope it continues and just gets better and better. keep us posted.

YAY!!! That is great news. It is so rewarding when you actually start reaping the benefits of all the hard work ...hopefully it will also be a major positive reinforcement for your son to persevere!

efgh when I say it is potent......I dont mean that in a bad way........it just has extra mag/cal/zinc plus high level of capryllate and so is truly meant to be used to target yeast.......if you have yeast, a mild attack simply will not work.....you have to go for it from all sides to eradicate it, and then maintain an environment with good diet and probiotics, plus occasional capryllate booster to keep it from overgrowing again.

I truly feel this is one of those "chicken & egg" phenomena.....which came first?? candida or strep??? Candida weakens the immune system and the toxins produced by yeast make the environment favorable for secondary infections by viruses, bacteria, and other parasites. Use of antibiotics kills off the good bacteria that make it harder for Candida to thrive, so without proper probiotic treatment, the yeast overgrowth is rampant during and after antibiotic use.... which once again makes the system more susceptible to strep and everything else....and the cycle starts again. We have thankfully not had strep problems in our family, and have also not used antibiotics for our children unless it was truly an emergency(ie hardly ever).....still, they did have yeast overgrowth and the younger inherited the disposition that allowed the onset of TS/OCD etc etc...... sooooooo.....

efgh capryllic acid is rather potent and I wouldnt personally recommend using it unless you have a yeast problem....... However........ Also just my opinion, but I think just about everyone in this modern world has some form of Candidiasis, unless they have eliminated it, or never used antibiotics, refined foods, sugar , alcohol etc. I agree with the guys who wrote the Yeast Syndrome that Candida is the root cause of a multitude of diseases The Yeast Syndrome : How to Help Your Doctor Identify & Treat the Real Cause of Your Yeast-Related Illness by John P. Trowbridge, Morton Walker

The Yeast Syndrome : How to Help Your Doctor Identify & Treat the Real Cause of Your Yeast-Related Illness by John P. Trowbridge, Morton Walker available online (Amazon etc) or in bookstores

Hello Ann and a big welcome! You have found the right place to look into alternative treatments Just reading thru the numerous postings here will reveal how many of us have found remarkable results using vitamin/mineral/supplements and some herbal and amino acid remedies. Also some have found relief with homeopathy or the Feingold Diet.Nearly all of us have found an improvement after dietary changes that eliminate artificial foods, and any allergens. Most have also discovered that our children needed detoxification from heavy metal buildup, especially mercury and lead, as well as elimination of any parasites, the most common being Candida (yeast) infection. Some have dealt with PANDAs where the tics are related to strep infection. We also find that many of our children have sensory issues. Alternative treatments like accupuncture, reflexology and biofeedback have also benefitted my own son, along with detox and supplements. One thing most of us have in common is that we have either had a negative result with conventional treatments by prescription meds, or just dont want to take the risks associated with them. So, as you can see.......there is a wealth of info and experience here. stay in touch!

Hi Claire efgh has given a very good reply there re the various forms of magnesium. There is also magnesium stearate which i recall Bonnie advises against. Both magnesium and taurine have been found (mainly as per Bonnie's research) to have a calminative effect on tics and Bonnie's current thesis is based on the premise of magnesium deficiency in TS (sorry Bonnie..I realise that is a major oversimplification ) Anyway, it is a very good idea to take calcium, magnesium AND zinc together in the ratio of 2:1 cal:mag (usually 800:400mg) balanced with around 50mg zinc. As far as i know there are currently only two available sources for magnesium taurate as a single supp...that is from Bonnie and from The Vitamin Shoppe. I give a calc/mag/zn combo with an added capsule of Taurine from TwinLab As to the capryllate.....we went thru various doses....we FIRST had to start the special detox diet and use no capryllate then...after 2 weeks we used capryllate and had to increase dose weekly over a 4 week period. On max dose for 2 weeks. Now he takes it for 1 week after every six off.