Chemar

hello it does sound like you may have OCD. But also, I sense that you may really need someone to talk to about all this. Do you feel comfortable telling your mom some of this and maybe asking for her to make an appointment for you to see a trustworthy therapist/counsellor who has experience with teens and OCD There is something called Cognitive Behavioral Therapy that can be very helpful Although there are medications that can help with OCD, they do have the risk of pretty serious side effects, especially in young people and so you may want to ask your mom or the therapist about 5HTP and Inositol, both of which are over the counter supplements available in health stores that can help to balance your serotonin levels. Serotonin is known to be deficient in OCD I do hope you will talk to an adult that you can trust and who will assist you in finding help for this, so that you can be liberated to enjoy life stay in touch here too as it is good to have a place where you can vent, or ask questions etc freely

Hi kimwal I am working at present so dont have much time to post details but the ONLY thing that will help if this is PANDAS is long term antibiotic treatment with the correct antibiotic. I am amazed that steroids were used as they make tics and OCD WORSE!! supplements etc are not going to work properly if this is PANDAS and so FIRST the strep needs to be treated It is really sad that the doctors are putting you through all this when an antibiotic is needed. Ronna has done a lot of posts on this as to which antibiotics are best as not all work as well.

satu I would highly recommend that you ask the doctor if it is ok to start her on 5HTP to boost her serotonin It was the only supplement that calmed my son's raging OCD tics. He took 50mg 5HTP each night (makes you sleepy) and 500mg Inositol in the mornings our doctor explained to us that the subtype of OCD that is prevalent amongst TS people is in some way linked to the tics so that an OCD behaviour can become a tic and vice versa. This also means that the waxing and waning occurs in the OCD too. Do begin to be very diligent in watching for triggers for this satu. For my son, lack of sleep, stress and excitement are BIGGIES as are any artificial foods, as well as illness Although your child may not have shown ASO titres high enough to be classified as PANDAS, yet the fact that she has had strep +ve recently may still be a significant factor Also, try switching from fishoil to flaxseed oil for a week and see if that helps. My son, although not reactive to fish, is VERY reactive to fishoil supplements and simply cant take it. Instead he has a combination of flaxseed,borage and evening primrose oil which gives an excellent balance of the omega 3 an 6 those are good points to maybe start with and see if it helps. dont give up...........sometimes it just takes a while to find the right mix of supplements, or to find what is triggering things, whether food or environmental or pathogen etc

Hello jeanchan as a mom who saw firsthand what nasty stuff haldol is and what it can do to a child...I am delighted that you were able to find info here to help your son get off it! Have you ever tried the magnesium taurate? Some people really do find this more beneficial than just plain magnesium, or you could try adding taurine with the magnesium ( if you see any negative impact it may be that your son is reactive to taurine and then you should no longer give it) Some people have found that carnitine is very helpful ...I have always heard acetyl-L-carnitine is best, but have also learned from some people with TS that they find the regular L-carnitine better so again it is something you would have to try to see which is best I notice that you mentioned evening primrose oil, which is good, but it is Omega6 whereas most beneficial re tics is Omega3...found in fishoil, flaxseed oil and borage oil...........some people cant tolerate the fishoil, and then flaxseed or borage (or preferably a combination of the two) work very well also jeanchan, it may still be good to supplement with a bit of calcium just to balance the extra magnesium...it doesnt have to be 2:1 also, there is a supplement called CARNOSINE (different from carnitine) which has shown a lot of promise for a variety of ailments, including tics. hope those ideas give you some things to try so that you can see if any of them help with the complex tics I would personally also add some zinc

I like the sound of your naturopath!!! As strange as it may seem, yet the principles of ancient Chinese medicine, and especially as related to the meridiens in the body really do have remarkable results. We have clearly seen this with my son, and also with myself and other members of our family I do feel for you tho in having to eliminate so many foods....but I also agree with your doc in that once you have taken care of the gut/immune issues, these foods may no longer be reactive. Millet is an excellent alternative to wheat and corn flour, and I know there are a number of threads here re substitute foods. I seem to think Claire did some excellent posts on this too congrats again on the way you are forging ahead on this. Your child will reap the benefits

Carolyn, I dont know whether ghee is tolerated in people who have dairy allergy, but I do know one can purchase it at Wholefoods Supermarkets It is clarified butter, and is excellent for cooking as it doesnt burn like butter does. Has a great taste too It is quite a bit more expensive than regular butter tho, and so you may want to look into making it yourself from unsalted butter. It is basically unsalted butter that is brought to boiling point and then simmered till all the milk solids settle out in the bottom. The top "butter oil" is then gently skimmed off and that is what is used as ghee.

good questions! with Tourette Syndrome, it is believed that age(hormones) and whatever other triggers (vaccines?allergies?environmental?etc etc) switch on the TS gene re allergies..............one of our physicians firmly believes in aquired sensitivity leading to allergies, so we may not show these early on but, the more we are exposed to the things we may have sensitivity too...so we eventually become allergic I cant address the issues re eczema as none of us suffer with it glad to see you pursuing your research and looking for answers!

Hello Lee and welcome I am bumping this up in the hope that someone in your area will know of a good doctor to recommend. have you checked the thread at the top of this Forum (with a heart next to it) for finding physicians? good for you for researching this way, and finding ways to help your children! Cheri

kbt, yes, stick with the dose that is working best. you can always go up if needed. we have found that my son has always responded to minimum dose of supps and so we have generally kept things there. This again reinforces that different people have different metabolism/physiology if it works...then that is what matters!

welcome to the board jjj I am glad that your son is responding well to the clonidine. As I always try to stress, different people have different metabolism and physiology and so what works for some may not work for others. There are members here who have had bad effects with clonidine and so they would likely say that they "have no faith" in it, just as others, like Jeff and his family, have had remarkable results from the diets that you say you "have no faith in" In our case, my son had little benefit and many severe and very serious side effects to ALL the medications that he tried, whereas the use of supplements brought rapid, dramatic and long lasting (5+years now) improvement. I also feel that it was the combination of supplements, correct diet, yeast and heavy metal toxicity elimination, acupuncture etc ALL working together that had the full benefit for my son. Sometimes people expect a miraculous result from taking a supplement, and when they dont see it, they dont look further into whether there may be underlying problems (like yeast, strep, pyroluria) etc that are preventing the supps from having full effect. So I think it is important for us always to be open minded and to respect that there are many treatments available and many people who respond in varying ways to them. I try to do that with regard to those who choose medication as their treatment, and I certainly wouldnt dream of suggesting to you that the benefits that you have seen with clonidine in your son must be wrong simply because meds didnt work for my son! and I would hope that you too would understand that others have chosen dietary changes or supplements or whatever because FOR THEM IT HAS WORKED, even though it did not for you! We all have to follow the treatment that works best for us, and respect others who choose something different because it works better for them. Again, congratulations on finding a treatment that is helping your son

Hi Pam and welcome we have never used Bonnie's actual supplements so I cant answer any specific questions related to them, but other members here have used them and many have been very pleased. Hopefully some with firsthand knowledge will be along soon to give you answers to your questions I based my son's successful treatment with supplements on the original info that Bonnie first posted long before she had begun to market her own BonTech range of supplements and so I know that the basic protoocol can work, as my son's tics went from very severe to very mild. We did add and subtract some based on my son's unique needs. Do be aware that some people do experience and initial increase in tics when first starting bonnie's supps, which seems to then settle and the improvement starts. Some people have reported that they did not show improvement and have then gone on to put together there own individual supps one by one until they have found what works best for them (we did this) As with all treatment protocols, do give it at least a month to fully work, although most people usually know by the second week whether it is working for them! all the best

Hi kbt and welcome I am so glad that the Forum here has been helpful to you and do also check out the main website at http://www.latitudes.org for excellent info on Sheila's book and also articles on Triggers for Tics etc etc Bonnie's vitamins are excellent and have helped so many people! however do be aware that some people do seem to have a reaction to them and tic more when taking them, either just initially and then they seem to improve...or in some cases, just not able to take them at all. It is usually a good idea to see how things go for about 2-3 weeks before giving up on Bontech supps as, when they work, they work really well and are by far the purest and best formulated supps for TS available. However, if things arent getting better after a few weeks, it may be that you would be better of using individual supplements best suited to your child's specific needs As you have also already realised, some people get tremendous benefit from taurine where some just cant take it In my opinion, it all has to do with individual metabolism and physiology, which is why having testing done to determine just what is needed really is a good idea. I have been hearing a lot of good things about the attitude that osteopaths (D.O) have toward the alternative treatments for tics and TS, which is encouraging BTW, I couldnt help a wry smile while reading you story re the eyes and the allergies........when my son was younger and had eye rolling and sniff/cough we also went through the "all to do with his eyes/allergies" stuff and also were told at one point he had asthma Where he did and still does need glasses, he has consistently tested negative for allergies except to dustmite, and most certainly doesnt have asthma! Anyway, do keep reading and learning and asking questions....eventually you will find what works best for your child. We are all her for you

i would second what Alison has said, Carolyn The way you have described it , it sounds more like a muscular flutter or spasm than a tic

Hi David and welcome congrats for deciding to be proactive in helping your kids and yourself I can attest to the dramatic difference that natural treatments have made for both my son and husband. As you begin to read through the threads on this forum and also the articles on the main website, you will find a wealth of info to guide you. I am busy working right now, but will return later and try to bump up some threads that may be helpful to you bye now Cheri

Hi Carolyn I think it is very wise for you to ask these questions! It shows again that you are the kind of person who educates yourself and takes charge of your health.

Carolyn, I would truly caution you re alcohol. When alcoholism runs in a family, the susceptibility to not be able to control drinking really is heightened, and the problem is, once it hooks you, it is very hard to break the habit. Also, for what it is worth, many TS adults have commented on how easily they can become addicted to things...whether sugar or drugs or whatever....so the tendency is there in many. Do just be very careful! I have nothing against responsible use of alcohol, but I have also seen what alcoholism does to people and families, and observed the heartbreaking struggle (physically,emotionally & spiritually) that alcoholics go through to break away from it! As to the Pyroluria aspect, I see you have asked the question over at BT too and that is one best answered by FJ*

Hi Cherry and welcome to Latitudes if you want to make a post it is best to use the "ADD REPLY" button at the bottom of the page I hope you will return again to make your post

Yes, sadly that sounds like the standard response from a neuro! There are very few of them who have taken the trouble to actually stay up to date on anything that isnt related to a prescription or surgery I guess in addition to telling you that what she eats doesnt matter he also said that medications rarely have side effects! Plus, for him to suggest that ALL people with TS also have ADD or OCD is flat out WRONG!! DAN doctors originated as a group of physicians dedicated to provide help for Autism (DAN=Defeat Autism Now) However, as so many off the issues found to help in autism (detox from heavy metals like mercury, treat gut issues like candida/yeast and food allergies, diet, supplements etc etc) also are beneficial for TS and other neurological disorders, many DAN docs now also treat TS etc There are also other Integrative doctors (conventionally trained but specialised in alternative medicine) who follow similar protocols and a whole lot more! to the DAN docs There is a sticky thread with a heart next to it at the top of the forum here that may help you in finding a DAN or Integrative doctor. Arizona is known to have a lot of alternative physicians so you will hopefully find one easily. Before you make any appointments tho, you should FIRST ASK if they have experience treating tics and Tourettes I am so glad you have ordered Sheila's book as there is a wealth of information there. Honestly, as most of us have found, we are the ones who have to stay informed and do the research and then hopefully find a good doctor who is aware of these things and is also willing to listen to what we have learned and become knowledgable about it too and see if it is a viable treatment option

hi Simon hopefully one of our Canadian members will best be able to guide you on this.

especially as you are still nursing your little one, it would be better for you not to use taurine at this time. Taurine is an amino acid and my personal feeling is you should not try that till you are no longer nursing your baby. Magnesium alone is fine, as you are going to be having it with calcium...remember the 2:1 rule..TWO mg calcium for every ONE mg of magnesium. Good that you are adding the omega EFAs too I hope you are already also on a good multivitamin/mineral

Hi Simon we have not tried DHEA supplementation However, from the little I know about it, I would think it would be essential to first have testing done to determine the baseline DHEA levels and whether it is necessary to supplement with it and at what dose. Too much DHEA would have a detrimental effect on the overall hormonal system, which in turn would affect many other physiological processes.

Hi they are individual supplements sold in Healthfood stores and also available on the internet I order online from http://www.papanature.com as they have the best brands at lower prices and very reasonable shipping

I posted this on another thread here too, but decided to give it its own thread as many may not see it where it was, and because it contains very interesting information about the chemistry believed to be associated with Tourette Syndrome I found the info re the steroids, androgen and cortisol (near the bottom of the page) to be of specific interest re why more boys than girls manifest TS and why stress seems to be such a big tic trigger http://au.geocities.com/jones_kacm/chem.htm ~Cheri~

The worst food additive tic triggers seem to be ALL artificial colourings, artificial flavours as well as artificial sweeteners like Nutrasweet(aspartame) and Splenda(sucralose), sorbitol. Also try to avoid HIGH FRUCTOSE CORN SYRUP and MSG (monosodium glutamate) and chemical preservatives like BHT etc Sheila's article on triggers is very helpful too http://www.latitudes.org/articles/finding_triggers.htm Deanna, there is sooooooooooooo much anecdotal evidence pointing to those food additives as somehow triggering tics, OCD, hyperactivity etc that it is pretty much a given that they have a negative impact on most people. In our case, I had read about this many years ago in a health magazine, and removed them from my son's diet even before we got an official TS diagnosis...........the reaction he has when he sneaks something with these things in is so dramatic that I am in no doubt as to their bad effects. I am actually really pleased to see that he now reads all labels on foods to ensure that he is not going to swallow somethingbad! Our whole family avoids them too.

Here is that article The bit about androgens and cortisol are near the bottom, but the whole article has interesting info http://au.geocities.com/jones_kacm/chem.htm Kim, it sure seems possible that the thimerisol preservative in vaccines (as well as other mercury sources)could be triggering the eye stuff, especially as with so many people it seems they notice the eye things in their kids around the time of those pre school booster vaccinations! But then again...why it should affect some kids and not others.........I guess individual metabolism and immune systems etc play a major role too As an aside, our doctor felt that my son was exposed to mercury in utero because of the many mercury fillings that I had.......still doesnt explain tho why he developed TS while my older son didnt as both had the same exposure, and the same childhood vaccines.......guess that is where the genetics comes in.