Chemar

I just got the annual booklet from the Tourette Syndrome Association listing their funding for new research studies...fascinating stuff! one study that caught my eye was a grant to Dr Babara Coffey at NYU medical school for study on GABA and TS, with hypothesis that people with TS are deficient in GABA in the basal ganglia and cortical regions of the brain, specifically the anterior cingulate cortex, both brain regions that have been implicated by past research as being the main areas of dysfunction in TS Interesting in the light of anecdotal reports of GABA supplementation helping with certainly the anxiety aspects related to some people with TS anyone who is interested in getting one of these 2009-2010 booklets on the medical and scientific programs/research can contact the TSA and they will send it free of charge http://www.tsa-usa.org

I honestly dont know much about manganese Faith but I know some doctors suggest using it with zinc and B6 for pyroluria I found an old thread where Claire spoke of it possibly aggravating tics http://www.latitudes.org/forums/index.php?showtopic=947 you said tho the doctor said slightly elevated so surely it shouldnt have too dramatic an effect the references I have suggest excess will not be absorbed by the body so pretty much self limiting? also wondering what made him suspect liver toxicity? did he run liver enzyme tests? here is info on manganese but it only refers to it being needed rather than what too much does. it does give foods rich in manganese tho so you could check if maybe your son eats a lot of those http://www.whfoods.com/genpage.php?tname=n...ent&dbid=77 here is more http://www.traceminerals.com/products/manga.html not sure if that helps at all but that is what I have on it

Hi Bonnie biofeedback is used more for health related stuff and I havent heard of it being used for ADD have you tried the gingko biloba? it really had a very noted positive effect for my son, along with the increased omega 3. If he can take Borage Oil that really does have very interesting studies associated re ADD in the UK also, strange as this may seem, my son has always had better attention for his work when he has music on in the background than in a silent room

Buster I havent read the whole thread so not sure if this was mentioned but you may want to go with a 504 plan rather than just an IEP the 504 covers the acedemic/learning issues as well as the emotional etc that comes with the OCD anxiety etc a 504 is very individual in structure and you can include doctors letters etc when you go for the meeting to set it up we found it far better for my son than the IEP he had in elementary. He got the 504 in middle school and carried it thru highschool and it was a big big help! With the 504 all teachers have to sign off on the accommodations (emotional and academic) and it become legally binding that they have to adhere to it altho TS and PANDAS have differences, still you may find helpful info on the TSA website http://www.tsa-usa.org/educ_advoc/educ_ed_strat_main.htm

MomwithOCDson do be very watchful for bad side effects from Luvox....it robbed my son of personality and expression of his musical/artistic talents...really "zombied" him. It also triggered some rather odd psychotic behavior for him that stopped as soon as we withdrew him from it. we eventually found far more effective relief from natural supps for his attention issues as well as his OCD (and tics)

we have never used Bontech supps as I had already formulated a plan for my son based on Bonnie's original plan for her own child prior to her coming out with her supps and so I was reluctant to change what was already working others here have used them with much success (altho a very few seem to not tolerate them)

yes, I have reused the water tho not for more than a few days...also I just corrected my post above to 1/2 cup per 2 cups water....doesnt matter if you made it stronger, wont do any harm!....just a typo error sorry and yes, my son's tics were at their worst around 10yo he is 20 now and doing great tho he does have to maintain his supps and diet etc...if he slips up his tics increase but NOTHING near what they used to be we did homeshool for 2 years when things were at their worst for him, and used an online "virtual" school

Hi so sorry re the increased tics The head shaking/whiplash tics were amongst the most alarming to me so I deeply sympathize have you tried rubbing magnesium sulfate (epsom salts) cream or soak a washtowel in warm epsom water ( 1/2 cup epsom to 2 cups water dissolved in a bowl and keep soaking the cloth in it and then squeeze out the excess liquid and lay it on the back of his neck while he tries to relax ...if he is ok watching TV let him lie on the floor with arms folded in front of himand lay the cloth on his neck--) this really used to help my son also if he tolerates the flowers used in Bach's Rescue Remedy..a few drops under the tongue really is very immediate in calming in general and therefore often calms tics too I dont know of the magnesium oil you mention but as long as it is pure and no ick additives it should be ok hope this passes quickly for him and for you

Hi and welcome usually with TS the tics wax and wane and different tics come and go, so it would be unusual IMHO for a TS diagnosis for just one continuous tic? Do be very cautious if the neuro suggests meds for the tic! you may also want to post on our PANDAS forum as the parents there are best to answer those questions for you the anecdotal reports we have here definitely suggest that for some kids, vaccinations can be a big tic trigger! I have a link in my signature below on what has helped my son not sure if you already have Sheila's book, but I would highly recommend it http://www.latitudes.org/book.html hope you find the answers you need to help your son

welcome Craig my son was very recently checked for TMJ probs but does not seem to have issues there, however, he does benefit greatly from careful chiro adjustment, primarily along his spinal cord, but also cervical. Our chiro is NUCCA certified re Bonnie's supplements...many people *who have TS* find them very helpful as they are specifically formulated for Tourette tics I based my son's supp program ( see the link in my signature below for details) on her original research years ago and it really has helped him. He has hereditary TS and has been on natural treatments since 2001, which has helped his very severe tics and OCD become manageable In addition to chiro, he finds acupuncture very helpful as well parents mix the ingredients in the Bontech supps with apple sauce, peanut butter, yoghurt, smoothies etc to get them in. Also, for some reason people who struggle to swallow pills seem to find it easier to drink liquid from a straw when swallowing the pills we look forward to getting to know you

I have knowledge of 3 different situations where use of adderall for adhd triggered bipolar disorder there are also some alarming studies related to ritalin and cardiac problems apart from the other warnings they now carry FDA "black box" warnings http://newideas.net/adhd/medication/FDA-warnings

my son's friend had the same problem with Ritalin he had no tics prior. was put on ritalin for adhd in elementary school and developed eye scrunching tic last time we saw him was in high school a few years ago and he still had the eye tic even tho he apparently stopped the ritalin a while back. no family history of tics or TS before my son was dx with TS, he had problems with his ADD and the school tried to bully us into ritalin use thankfully we had scheduled additional educational testing to get his IEP and the savvy ed psych suspected TS and strongly advised us to stay away from ritalin a few months later we had the TS dx

?? I am not sure where you read that but it sounds more like conventional alarmism to me The form like Jarrow's is used by many people for joint/skeletal pain relief too as it has glucosamine added Target sells their own (Origin) brand which is just the samE with vit C and Vit B2(riboflavin) I guess you have to do whatever you feel is best, but 200mg samE a day has been really good for my son

The stimulant meds rx for ADHD are known to trigger tics in some people even those who have no prior history of tics

how great to hear from you Alison and thank you for the encouragement to all here with your update! ps I see Kim gave you the tip on setting the forum view to standard to see the threads in traditional format now you can check in more often

check the PANDAS board...seems the negative blood test results are no longer considered a totally reliable method to rule out a possible PANDAS case

Hi Tatoomom so sorry things took a downturn again I do agree that it would be worth checking into possible PANDAS/PITANDS connection as usually with TS one doesnt see that kind of "remission" ... you may also want to check in with member Caryn as she is very clued up re celiac/gluten intolerance. It honestly wouldnt surprise me that you would see this pattern is by chance your child is gluten intolerant as sometimes a build up of allergens can have a delayed reaction re triggering things I know the term transient tics is used often by doctors, but to me it has always seemed there must be an underlying cause for them. It is great that they resolve for many people (eg your husband) but seem to also sometimes resurface as you are seeing with Ethan. so sleuthing to find that trigger (or triggers....) is the only way to go...along with keeping his diet and environment as trigger free as possible while you look for clues. btw do just keep a cqreful eye on his reaction to the zoloft...he may be fine with it but SSRIs do bring big side effect risks and one also needs to come off them very gradually, so work up slowly so you can come down faster if you see he isnt tolerating it well there is a new research study out about personality changes with SSRIs, and more warnings re their use in young people....so just be watchful. hopefully he will tolerate it well and be helped by it all the best and hope you find what is causing the relapse

the genetics of celiac disease and and many autoimmune disorders is already determined and there is already much documented research and evidence on Tourette Syndrome genetics http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1683024/ http://www.tourette-syndrome.com/ts_genetics.htm Genetic Markers in TS Gene Map there are many more references you can also check the research at the Tourette Syndrome Association for information on the genetics http://www.tsa-usa.org that is what "predisposition" is often all about....genetics.

Hi dmc and thanks for posting, tho I am so sorry to hear of what your son suffered from the neurofeedback i have posted here a number of times in the past on it being something people need to be very cautious of after hearing some negative reports about it related to TS and also for kids who tic from other issues. so where I am do sympathize with you re your son, I am thankful that you posted your experience to reinforce that need for caution! Biofeedback is very different, and my son has had much benefit from that.

well as i stated on that other thread...it is possible that this is a factor for some people who tic but I do not feel it is "the" cause of Tourette Syndrome as, if it were, then why have people like my son (who has genetic TS) and others improved with other treatments and have no TMJ diagnosis or dental intervention if you also visit our PANDAS forum you will find many parents whose children tic because of strep we also have parents here whose children have stopped ticcing after dietary modifications, as it appears that certain food (and environmental) allergies can trigger tics. Frequently it is multiple factors that may trigger tics so again, and this is just my personal opinion, where it is possible that tics are triggered by TMJ for some people, I think it a stretch to suggest that this is the cause of tics for everyone, and most emphatically disagree that this is the "only" cause of tics for people with genetic Tourette Syndrome, as suggested in some of the research work I have read by Drs Sims and Stack, who, although they may be excellent and highly respected dentists, yet are extrapolating their theory into areas that IMHO they dont have all the answers for, or knowledge about, as evidenced by the many members here whose kids tic for many varied reasons and who have seen positive results from other treatment methods than dental

just want to be sure everyone is aware that the original poster deleted her own first post on this thread this was not a moderator deletion!

yup, it sounds like a tic

bubbasmom I think it is naive to imagine people will not try to profit off PANDAS just the way they try to profit off everything else my goodness even some physicians are raking in the $$$ from desperate parents and charging outrageous sums! with regards to the antibiotic ads in the message boxes....spammers will take advantage of anything they can and no, to them nothing is sacred. That wasnt a message from a member...it was someone who joined that very day with the sole purpose of spamming everyone. best to just accept the fact that unscrupulous people are always looking to turn a fast profit off everything they can and not let it frustrate you I see people touting e-books on "cures" for Tourette Syndrome that they have clearly put together reading the FREE info we all share that's life....not much anyone can do about it so best just keep sharing and caring here and not worry about who's profiting from it IMHO however kids get helped...all that really matters is they are being helped!

Bonnie's supplements are comprehensive and designed for tourette syndrome so I am not surprised that your child may not have responded well to them if he doesnt have TS acetone breath can be indicative of diabetes so you may want to have that checked has your child or anyone in the family recently had or been exposed to strep?

best to start a thread on our PANDAS forum as well as the parents there are most clued up I believe many use what is called the Cunningham test to determine whether PANDAS is also a factor.