Chemar

Hi Lilbit95 yes, it can all be so overwhelming and alarming when one is starting out trying to get a clear diagnosis and understanding of these things! There are sooooooo many underlying conditions that can cause tics in addition to Touirette Syndrome that it truly IS a good idea to gradually work thru them before settling on a TS dx (unless there is a clear family history of TS) As many here have discovered, issues that can cause tics range from PANDAS ( high strep in the system that is NOT just strep throat, but can be strep "lurking" and needs a blood test, not just a throat swab , for clear dx) Heavy metals in the system like MERCURY, lead etc (mercury especially from childhood vaccines containing the preservative thimerisol) PYROLURIA which is linked to a deficiency in zinc, B6 and other vitamins/minerals FOOD ALLERGIES to maybe dairy, gluten or artificial ingredients like colouring, artificial sweeteners, MSG etc ENVIRONMENTAL ALLERGIES like mold, dustmite, formaldehyde(in carpets, wood and upholstery) other chemicals (eg pesticides, chlorine, perfumes, house cleaners, toiletries, FLUORIDE in toothpaste etc) and also SENSORY ISSUES (photosensitivity has been found to be a BIG tic trigger for many) etc etc etc this forum is loaded with info on these subjects, and I would also HIGHLY recommend the new book by Sheila Rogers that details all this. http://www.latitudes.org/forums/index.php?showtopic=1314 All of the things you have described are recognised Tourette tics too, both the motor and vocal ones, and yes, excitability and stress are known tic triggers! Here is an excellent article by Sheila on tic triggers that may help you http://www.latitudes.org/articles/finding_triggers.htm The majority of posters here have found that an alternative approach (ie not using the standard prescription medications for tics and ADHD) has greatly helped...... please do keep asking questions and seeking knowledge, and if at all possible, try to find an Integrative doctor to work in conjunction with your pediatrician to advise you on all the things I have listed above. Conventional docotrs arent always aware of all this, whereas Integrative docotrs (conventianal MDs who have gone on to specialise in alternative/complementary medicine) tend to be. There is a thread at the top of this forum that gives help in finding Integrative medical doctors. I would also like to recommend a very good website for you to learn more about Tourette Syndrome and its associated disorders http://www.tourettesyndrome.net Hope this gives you some things to ponder and investigate

Hi Kim, good to see you and happy New Year I dont have any problems with the ACN site, but you may want to email Sheila and see if she has any advice for you. If you want to eliminate your multiple posts you can go in and delete them bye now

Hi Lisa sorry to hear that your son is having these headaches. Honestly, I would try to get a doctor to seriously look at the med combo he is on!!! Adderall can have some pretty intensive side effects, never mind Risperidal, and Clonodine is not side effect free either. I would also get a second opinion on the TS diagnosis as adderall can in duce tics. If your son has been having any head or neck tics, he may find relief from the headaches by seeing a good chiropracter....preferably a NUCCA one ( http://www.nucca.org ) Headaches, especially sharp ones like you describe are NOT something to be ignored and so I really would advise you trying to find a good doctor (preferably an Integrative one) who looks for causes rather than just writes prescriptions! BTW, Omega Fatty Acids, especially Omega 3 have been found very beneficial for ADHD ...best kind are the ones that combine Omega 3, 6 & 9 (eg fish oil, flaxseed oil, borage oil and evening primrose oil combos) Also gingko biloba is excellent for memory/focus You may also want to check out http://www.nativeremedies.com as they have some good preparations as alternatives to meds for attention/focus problems all the best

Hi carolyn dont forget that Gentle Iron formula that I mentioned to you. It is chelated iron at 25mg per day, and is in the form of ferrous bisglycinate and made by Solgar Our doctor says it is by far the best iron supplement and has none of the side effects that can often come from iron supplementation

Ronna is our resident PANDAS "expert" so you may want to send her a PM or email re the most effective antibiotics I know that some folks have had to try several before they found the one that did the job. Also, with PANDAS, one needs prophylactic use of the antbiotic in order to eradicate the strep. I came across something recently that suggested that the natural antimicrobial, MONOLAURIN (lauric acid) may also be effective in eliminating strep. It is well known for its general antifungal, antibacterial and antiviral effect and the research is showing very encouraging results with things like herpes, cytomegalovirus, epstein-barr and even HIV It is available from the Vitamin Shoppe ( http://www.vitaminshoppe.com )

Hi Marie and Happy New Year to you too! I do agree with the suggestion on the HEPA filter air purifier (and also agree re NOT using the ionization systems---which actually increased my son's tics when we tried one!) Mold is not only a very BIG tic trigger, but it is also very dangerous to overall health. I know many healthcare professionals feel it is even advisable to move out while doing any renovation work as these particles and mold etc are so detrimental to health.

The website for Native Remedies is http://www.nativeremedies.com/index.shtml

I am so relieved to hear that the treatments you are using work Sarah and also that at least you now have clear answers on the strep. So glad your son can start the new school semester in this positive way! Happy New Year to you too!

Hello Tara my deepest sympathies to you and your husband. I have never heard of any connection between TS and sudden infant death syndrome so I honestly cant comment on that. I am not sure why TS, which is usually not manifest until children are older, and is not a life threatening disorder per se, would in any way have contributed to this, but as I say, it is something I have never heard linked before and so really have no qualified opinion. again, my heart goes out to you

Hi Stuart and Happy New Year I am so glad you are finding the benefits from Sheila's excellent book! Yes, an allergy sure can be a big tic trigger. Hope the HEPA filter helps. We are also a cat family and thankfully dont have any allergies to them. all the best to you and your family

Hi we havent used Feingold tho much of what we have learned to avoid in our son's diet is on the Feingold "no" list...eg artificial flavours,colours,sweeteners,preservatives etc etc There are a couple of folks here who have experience and great success on feingold so hopefully they will be along soon to give you details I do want to say that Ax and all similarly perfumed sprays deodorants etc are MAJOR tic triggers for my son!! This may be related to the sensory integration dysfunction that so frequently accompanies TS

Hi mommy yes, melatonin does promote sound sleep and therefore can increase relaxation, decrease stress= reduced tics. It is VERY important to always start with the lowest dose available of melatonin and then gradually work up if needed. Different people need different amounts of it and if one takes too high a dose it can have the opposite effect by making one very edgy and sleepless! glad it is helping your son

Hi I dont know that birth order has any significance...if it is genetic TS it just depends on whether or not the child gets the TS gene in a dominant form. Boys are known to manifest TS more than girls I have two sons, same parents, eldest has no TS, youngest has it. My husband and his father are the familial link

glad things are better and that you are getting answers. hope it just keeps improving, especially once you have the strep under control Happy New Year to you and your family

evie i have bumped up Ronnas PANDAS thread for you.........

bumping up for evie

both acupuncture and chiropracty have been very helpful for my son. Evie, I am puzzled as to why you need to fly to Florida for the treatment? are there no NUCCA chiros or qualified acupuncturists where you are? Also. PANDAS induced tics do not need to have an "active" strep infection to flare up....it is the presence of strep in the system that is the problem

Hi Evie the chiro does sound very interesting. Do post back with your son's results to this treatment. I was a little concerned tho re what you said about his attitude about PANDAS..........treating the neurological aspect of it is good.........but ignoring the infection by the strep seems a bit odd to me! Strep is a very dangerous pathogen, and nomatter the additional good therapy used for its side effects like with PANDAS, still, IMHO, one should ALWAYS attempt to eradicate a pathogen from the body, especially of a child.

Hello Mary I did just want to answer to encourage you not to feel despondent. As you have a clear TS diagnosis and a family history, it is most likely that your son has genetic TS and, altho there undoubtedly triggers and subtle physiological changes that cause tics to suddenly wax, yet, this is probably the most characteristic thing about TS...the fact that tics DO wax and wane. For our family, where we try to always be very aware of potential triggers and to do our best to avoid them, yet we have also learned that sometimes there is no clear reason as to why a waxing phase has occurred.And so we have just learned to live with those times. We can drive ourselves and our kids batty by tring to be overzealous tic trigger detectives. Yes, it is good to look for possible triggers and so treat effectively, but....when it is genetic TS........often the trigger is just not evident to us, and it is at those times that we just have to stop stressing, especially when the tics are mild and not debilitating. We found the best response was to be very honest with our son about TS so that he fully understood what was happening. and when the tics waxed, we had to do our best not to draw attention to them, as that in turn helped him One thing I can say for sure is that, once we had cleansed my son's system of toxins and parasitic fungi (candida) and heavy metals, and implemented a careful healthy diet with correct balanced supplements to suit his individual needs, and had attempted to keep envoironmental triggers at bay.......we clearly saw a decrease in the freqency and severity of the waxing phases. Do also remember that, especially for younger children, this time of year is filled with excitement and excitement, just like stress, is a BIG tic trigger. I am not sure if you have ever looked at the Tic Triggers article here...in case not, here it is http://www.latitudes.org/articles/finding_triggers.htm Here too is Claire's excellent thread summarising some of the ways to get started on testing and treatment http://www.latitudes.org/forums/index.php?showtopic=1211 and again the link to the thread where I have documented the Treatments that helped my son go from very very severe TS/OCD to very mild http://www.latitudes.org/forums/index.php?showtopic=687 here too is a (((HUG))) for you

PLEASE!!!!!wait for a diagnosis before doing "Habit Reversal" or at least research it more..... if your son has developed Tourette Syndrome, whether from PANDAS induction or something else....Habit Reversal would be one of the WORST things you could do for him!!!!!! For someone with TS to be told to stop, or alter a tic makes the tic far worse and can lead to severe psychological problems. PLEASE research this or wait for a clearer idea of what you are dealing with before embarking on such a drastic therapy, It works for some disorders but is really NOT a good thing for TS An Integrative doctor is not always a DAN doctor but all DAN doctors should be INtegrative.(ie fully qualified MD who has gone on to do a PA or some equivalent specializing in Alternative/Complementary/Naturopathic medicine

i agree with Andy re the yeast stool test not being the best indicator, especially for those forms of Candida that are outside of the GIT we had specific Candida bloodtesting done at the time when all the tests for the various streps and other viral/bacterial things were being run I would agree it is better to use discretion on running the tests as often careful research will lead us to the right tests based on our child's specific symptoms. I always feel it is so very important to remember that each persons metabolism and other vital physiology is almost unique and so the results and the remedies really will vary greatly from individual to individual

Hi bleaschmann you are so right to be warning folks about what the drugs can do...so sorry you had to experience it first hand. My son was put on haldol and luvox and then zyprexa and the side effects were absolutely horrible!! After a year of that experience we thankfully found a caring and knowledgable psychiatrist who helped him withdraw (another scary experience) and we then began a natural protocol which had almost immediate and dramatic improvement I have documented what helped him in this thread http://www.latitudes.org/forums/index.php?showtopic=687 we did not know about carnosine then, but it does appear to be helpful if used correctly. I personally feel that there is no one "miracle" supplement for TS, but rather that a combination of the right things is what has the best longterm results This includes cleansing the body of all toxins and parasites etc and following a good diet free of artificial junk, while also trying to avoid environmental triggers. hope you find the combinations that are most helpful for you. BTW to help with the anxiety etc I would highly recommend BACH'S REMEDY (made from flower essences) It is truly remarkable in its calming effect and i know of many people with TS who find that it also helps their tics, while aiding with stress/anxiety etc it is available from health stores

just wanted to add that if indeed your son is dealing with PANDAS then only the correct ANTIBIOTIC will help him! It astonishes me, with the wealth of research etc available, that there are still doctors who dont recognise PANDAS induced tics!! also as far as supplements go, IF there is underlying PANDAS or some other issue like pyroluria or heavy metals or yeast etc, then the effectiveness of the supplements is diminished. as frustrating as it is for you now, yet dont give up on trying to keep him on a healthy diet with good supplements while you search for more answers I dont remember if you have found an Integrative doctor yet, but that really is so important if you desire to follow natural treatments rather than the meds. altho clonidine may not be in the same danger group as say haldol, yet it IS still a strong medication with the potential for serious side effects. If the low dose helps your child, then that is encouraging, but if it doesnt help, and if you notice side effects, it would be good to carefully withdraw it. ( do remember that all these drugs have severe withdrawal reactions and so cannot just be stopped cold turkey...they have to be titrated down.

Cindy it is always good to consult with a doctor, and then proceed with treatments. Conventional doctors tend to generally just prescrible medications, but all the meds for TS have the potential for really serious side effects, especially in children, and so I would personally advise avoiding them An Integrative doctor is the best choice, one who is fully qualified and licenced in conventional medicine but has gone on to specialise in alternative/natural/complementary medicine Yes, the blinking and throat clearing in the other family member could well be a mild form of TS and so the gene may well have been transmitted. Do spend some time working thru this website and forum as there is a wealth of info here! all the best to you Cheri

Hello Cindy I know of a number of people who have benefitted very much in having their TS treated by traditional Chinese Medicine. My own son has regular acupuncture which helps enormously, more so than anything else We did have him on Chinese herbs once, and they helped a lot, but then began our supplement program and found even more benefit from that I personally stay away from ever trying to suggest that anything "cures" TS....if the onset is because of the genetic inheritance that is. Although I am the first to confirm that tics can be very substantially diminished by alternative treatments, as we found with my son. There are a number of issues that can make tics worse, such as heavy metals (mercury, lead etc) and also illnesses like strep and other infections, plus parasitic illness from things like Candida albicans yeast. Also allergies to foods, artificial food additives, environmental allergies eg mold, dust, chemicals like chlorine etc, pollen, electromagnetism, photosensitivity etc etc etc avoiding and eliminating these tic triggers, while maintaining a healthy diet and emotional wellbeing goes a long way to keeping TS tics at a minimum!