Chemar

what a very insightful topic my son has had all kinds of tics just about allover. from mild to severe enough to cause injury. And they come and go and change and evolve. I am avoiding detailing them, as I know for some reading who have TS that can be a trigger I can relate too to the "tics where they are felt" and have always thought that my son's sensory issues and his tics are frequently interconnected (he has the whole caboodle of all 5 senses in his sensory integration dysfunction) perhaps even his extreme chemical hypersensitivity is tied in with it all He doesnt really have longterm habits, as even his OCD varies so, depending on triggers there too. ps added music is my son's passion (both of them) and they play many instruments and compose etc. My TS son never tics when he is absorbed in listening or playing music

my son had 2x 250 mg a day and that seemed to work fine. With GABA. less is often of more benefit so if you do start it, start out at 250 mg evenings and add the other 250 mg mornings only if nn. injury puts the body under a lot of stress and so the heightened anxiety could be fallout from the overall disruption to his system both from the injury/healing etc as well as the removal of the cal/mag Also,have you considered doing the Natural Calm for magnesium intake just in case he is one of the few that dont tolerate taurine too well?

Hi Damien and thanks for supplying the back up info, and for understanding why some may be cautious here is the info on the NYC marathon (scroll down, RHS to Nov 2nd) http://www.tsa-usa.org/teamtsa/index.html and yes, Michele is a very kind and helpful director of TSA and can be reached at the numbers Damien has provided wishing you much success in your efforts on behalf of TSA, Damien

environmental toxins and allergens can be major tic triggers and where I can see why a photosensitive child may also tic less when removed from the "screens" flicker, i really would do the mold test if you suspect it, and also consider whether formaldehyde (in wood and new carpet) any recently painted rooms?, buildup of toxic stuff in air vents, pesticide residues etc could be triggers as my son has always done fine on wheat I cant address that, but if he isnt gluten intolerant wheat should be good for him I think

the TSA really is a wealth of information. I havent always agreed with the meds first philosophy, but they did have Sheila do a talk here locally in Central Florida about Latitudes, ACN and her book, (my son and I did a little support testimony for her and they really have so much useful information available, both on the website, as downloadables or by mail order brochures and help guides for everything from helping others understand what TS is, to stuff for very young kids to understand as well we to educate educators on Tourette http://www.tsa-usa.org Tourette Syndrome Association, Inc. 42-40 Bell Boulevard, Bayside NY 11361 phone 718-224-2999 also the Latitudes/ACN tourette/tics info pages http://www.latitudes.org/tics_tourettes.htm and the learning disabilities info http://www.latitudes.org/learning_problems.htm Glad to be able to help. I started advocating for my son from pre-K for the central auditory processing problems LOL so I sure learned a lot along the way to where we are now #1 rule is to politely but firmly be VERY proactive, and dont hesitate to ask for a full meeting with all teachers and nurse and special ed admin etc whenver either medical or *any* other issue necessitates either an addition to or emphasis on existing accommodation that your child needs to function in the classroom. Tics, OCD and learning disabilities etc all are covered by law and when a physician or therapist etc writes a letter in support of what you are asking for then you also tend to get the point accross in language they understand and dont hesitate to ask TSA re recommending advocates in your area. some are free and some charge small fees I believe.

Hi Mary sometimes we will just do a footbath of epsom too. I put 1 cup in the footbath with as warm as comfy warm water and soak for 30 min. one can sit and read or whatever for that time while just letting the magnesium sulfate salts do its thing. another thing is not to rinse off till morning. my son now takes his shower first to clean and then soaks in the epsom salts tub before bed . very very relaxing to tics and psyche, and helps him sleep. he also finds it soothing to those achy parts that having tics brings.

These Treatments Helped Us is a database thread of the various experiences of our members with tics, Tourette syndrome, OCD/behavioral/mood issues and PANDAS. we hope to compile a database of what has triggered these for those represented here, as well as the member experiences of treatments that have helped. this will be a helpful resource not just for newcomers, but for all of us, so do stop by that thread and add your story. thanks! http://www.latitudes.org/forums/index.php?showtopic=3558 ps a small request to keep that thread *just* for posting the info, and not for discussion. if you would like to ask questions on the various things, feel free to start a new thread on the forum and just mention you had seen this info on the other thread etc etc . thanks that will keep the database thread dedicated to just the info!

Hi ya P.Mom no PANDAS here but Crohns, which is also autoimmune. My son hasnt been able to use probiotics or even eat his beloved yoghurt and kefir anymore. it caused him small flares of the crohns symptoms I dont understand fully why but I have learned by now to heed when he says "this is not good for me" even when it may be a good thing !!

Hi Michele I got our doc to write a letter supporting all the accommodations that my son felt he needed. You really have to be proactive and go in with the list of things needed. I didnt have the probelms I hear many having as the school nurse was clued up on Tourette and then, when we needed extra accomodations re the Crohn's, again they knew what I was talking about if they dont know about TS, I would suggest you order the brochures for education that TSA provides. they really have a lot of good resources re the academic accommodations...once again I got the educational psychologist (private but fully accredited by the schools here) to write a full supporting letter of what he needed and why we had no problems at all getting it all added. I ensured that all his teachers as well as the district school nurse and the special ed administrator were all there for each meeting I never needed an advocate because we got what we asked for without problems, but I know others who have successfully used them again, it has nothing to do with their grades and everything to do with their ENTITLEMENT under IDEA. Its the LAW!!! and you have that 100% on your side!

Chamomile tea is excellent for relaxation Dedee Magnesium is also a relaxant and so promotes sleep and of course taurine is good for tics so mag taurate compound may be helpful epsom salts baths before bed (magnesium sulfate) really do help to relax my son and he usually drinks a cup of chamomile tea at same time so a double benefit if anxiety is real bad you could ask your doc if GABA is ok. we used it for a short while when my son was in a mega anxious phase and it really helped

as long as it is in original sealed container it should be ok but WOW that is expensive Greyhound for just 250 gm? I pay under $2 for 4 LBS ie 1.81 KG at our local Target Store and our supermarket sells it around the same price have you checked Boots or other chemists there?

Michele usually the 504 plan provides those accommodations but it can be built into the IEP too try those links to the TSA educational advocacy section that I left for Brink as they have a lot of good stuff there My son had accommodations for everything from the OCD/tics that affect his handwriting to being able to keep healthy candy in his mouth to suck on (helps with vocal tics) and everything in between!

((((((Bonnnie)))))) I do so feel for you on this has the Doc tried any GABA short term to see if that might break the cycle of obsessive anxious thought? my son had it for a few weeks during a hyper anxious phase (along with his other OCD supps) and it definitely helped religious OCD is known as scrupulosity so you can try googling for possible tips to help our pastor was very very helpful to my son during a phase he had with that so not sure if yours can help. I do hope your hubby will come to understand that this isnt something one can "discipline" as that could really do psychological harm, especially in one so young where logic & reasoning hasnt yet fully developed We really did find that reassuring support and understanding was extremely important to my son during those debilitating OCD/anxiety phases. praying for your son and whole family to be able to pull together to help him

for my son, as he tics daily with his TS, it's really hard to answer Faith. But when he plays explosive, flashing or multi-movement games (lots of stuff going on all around kinda thing), he tics more. His tics are definitely reduced when he is in total relax mode and he doesnt seem to tic much when reading, not at all when playing his musical instruments, eating etc cinemas trigger big time and longer duration tics for him. so many factors there that set him off.

peglem this sure is a board where all of us can understand deep feelings on many things. We've all been affected deeply by the things that have happened with our kids, and we care deeply about the issues surrounding them .... so its ok. sometimes we dont know or remember each others full stories, and nuances of words can take on personal meanings. we are all on this learning curve together and it really is such a blessing to have all of you to learn along with.It's wonderful that we can use the ups and downs of our own experiences to maybe shine a light for someone else to be helped on a path that will benefit them. I sure appreciate all of you and this place soooooo very much

glad you have found helpful stuff on TSA website Brink! another very comprehensive site is Tourette Syndrome Plus http://www.tourettesyndrome.net ps lurker....thanks for your comment and I sure do hope no one thought I was in any way coming down on CP for my emphasis on the smart/IEP issue....CP is one of the kindest and most caring members we have and I absolutely read her comment "in context" and so was making mine on the issue and not against her (((((((CSP)))))))))

yes. having an IEP is *not* indicative of whether a child is "smart" or not my son has a very high IQ and took all AP and Hons classes, and was far advanced in many areas compared with his peers, but he does have learning disabilities associated with his Attention deficit Disorder and Central Auditory Processing, anmd needed the IEP for elementary and part of middle school later, when we switched to a 504 plan, the learning disabilities were incorporated into it. again, having the 504 was an *accomodation* not an indication of his abilities, academic or otherwise. It was to accomodate his illness and disorders within the framework of what was required at school. smartness has absolutely nothing to do with an IEP and also has nothing to do with a 504. (tho I sure do know that isn't what you meant CP)

I sooooo agree about needing to be pro-active when the school is not in compliance!! We had a really good response from ours, but even so, I needed to stay on top of things and insisted on quarterly meetings with all teachers etc to ensure that everyone was doing what needed to be done! some school districts are notoriously bad with this and so you really cant rely on them to do the right thing....you have to take the reigns. TSA can also connect one to student advocates who will accompany you to the school to make sure the needed accomodations are granted

well Faith I gotta tell ya...if I were to take away my son's Wii or any of his game systems I would trigger mucho tics when we looked into the photosensitivity issues we realized that for my son darkened room with flashing lights, as well as fluorescent lighting were the main triggers. Also Claire's info on the advantage of reducing flicker by only using LCD screens helped. We avoid fluorescent lights as much as possible (ugh when the incandescents are phased out ) and my son always plays games or watches TV and computer stuff with a daylight lamp on He also limits his time spent on any games that have flashing graphics the trade off of a few tics but having him relax with his games is a tiny one IMHO

an IEP is best when learning disability or any form of direct educational accomodations are needed a plan-504 is best to allow for accomodations directly related to tics, TS, OCD and other health related issues that the student finds impairs their ability to function at school Tourette Syndrome is now fully and BY LAW classified a disability in education and as such is covered by the Americans with Disability Act under IDEA. For educational institutes the definition is "Other Health Impaired" if a school is delaying implementing either an IEP or 504 for someone with TS they are breaking the law!! here is some info from the TSA on this http://www.tsa-usa.org/educ_advoc/education_main.htm http://www.tsa-usa.org/educ_advoc/section_504.htm http://www.tsa-usa.org/educ_advoc/educ_ed_strat_main.htm http://www.tsa-usa.org/educ_advoc/educatio...ocacy_main.html there is a lot more on the website related to helping kids at school etc Also, phoning the TSA and asking specific questions always has brought helpful answers for me :

hello harmonii and so sorry to hear of all you and your son have been going through it is late and so I am not even going to attempt to post any info for you, but would encourage you to look at the pinned thread here called essential threads and start reading other info on the things that have helped others with tics here. for now I just wanted to welcome you and say you and your son are in my prayers

yep epsom salts tubs would probably be a good way to get some magnesium in and it is often recommended for sprains etc plus the relaxing effect would also be good

remember...a good multi plus healthy diet will give you calcium and the B vits plus other essentials so just adding some extra magnesium is a good start! my son found using royal jelly to get extra B vitamins to be way better than B complex, to which he reacts badly I do honestly feel that Bonnie's carefully formulated plan works best, whether one uses her Bontech range or puts together one's own. Only thing there is we do have reports of some not reacting well to fishoil and also some people seem to have a waxing reaction to the TS plus tho they do seem in the minority and likely a personal sensitivity to one or more ingredients. People really are very different in how they react to supplements depending on their unique biochemistry and metabolism

Hi Donna...again hard to generalize as one may also be pleasantly surprised and find the doc IS one who reads and studys for themself outside of the conventional textbook box so many are in.....we have been pleasantly surprised sometimes and so one just never knows till you go. The best advice I can give you is write down a list (not too long) of the *most important* issues that you feel your child is exhibiting and ask specifically about those. Take the rest that the doc says in and the RESEARCH it yourself then. Some conventional docs will know (or at least be open to your request) to order the important tests to at least investigate whether PANDAS or other microbes like candida etc or vaccine etc induced heavy metal overload, dietary and/or environmental allergies etc etc are contributing to the condition...... but be warned! many will look at you like you are from quackville when you mention these things but still, trying to get a clear dx is I think an important start. doesnt mean you will get one from this doc....some are quick to dx Tourette or "transient tic disorder" but not check to be sure it isnt other tic disorder stuff caused by the above "triggers". But IMHO it is worth giving this doc a try at this time. hopefully you will be pleasantly surprised

Donna it is hard to answer this as many of us have not been really satisfied with what conventional neuros offer, which is usually prescription meds and not much else hopefully the doc you see will at least be able to provide clarity in diagnosis travelling would only be worth it IMHO if to a facility that is clued up on the many things that can induce tics and who would do alternative testing and treatment options, but that can get very expensive! and is often not covered by insurance Once you have seen the neuro and hopefully got an accurate dx, perhaps look in your provider list to see if any D.O. physicians in your area. They can sometimes be very clued up and take a more holistic approach to healing. Some medicaid plans do include them I believe