Chemar

we have never used NAC and used the L-carnitine not the acetyl form so cant comment on that however it is a good idea to do one at a time and wait a few days before adding the next so you can more easily identify benefit or adverse effect re dose...we were always told 12 yo .100 lbs take adult does 6-12 yo 1/2 dose under 6yo 1/4 dose as she is 6yo, if it were my child I would personally start with 1/4 dose and then slowly up to 1/2 if needed.

((((Faith)))) and (((ALL))) who are taking this step in hope of helping your children I am *truly* hoping and praying that this will be a solution for you I also do want to clarify that all of the comments I have made here are my own, and not meant to represent ACN/Latitudes. I just help to moderate the forums here, mainly to welcome newbies and encourage oldies and also to keep watch for those ick spammers who occasionally appear. I have said right from the start on this thread that I DO believe mouthpieces/oral devices can help *some* who tic, and that I could see how they could benefit *some* tics so I dont at all dismiss the potential for this device to help possibly even many who have tics (and yes, I can see the ramifications of neural relief leading to comorbid disorder relief too!) My own son has always had tics caused by teeth stuff, so I know there is a trigger for him there, along with the many others that he has for his tics and OCD but when this was first posted and I went to look at the related research papers that had Dr Sims name on, I was concerned by some of the statements there that seemed to be kinda emphatic to me for someone to make over such a broad scope of the complexity of Tourette Syndrome here also is the abstract on PubMed http://www.ncbi.nlm.nih.gov/sites/entrez as mentioned before, I have been talking with others about this and where we can agree that cranial nerves dohave a role in TS, yet all feel very cautious about the broad claims being made, as summarized in the PubMed abstract the published paper is in the PDF file that CCC linked http://www.tmjstack.com/casereport.pdf. the *ONLY* things that I have been anti in all of this is that TOTAL negation of all other aspects of the complex comorbid disorders that make up TS....as emphasized in that PubMed quote: "Tourette Syndrome is neither psychological, infectious, genetic or environmental in origin, but is what we have termed a structural-reflex disorder.... can be discontinued with a device........." We know full well from just the membership here and on the PANDAS board how often we see that what works for *some* doesnt always work for others. That ranges from medications thru the supps/diet to the infectious agents like candida and strep etc and the food intolerance/allergy elimination methods, NAET, acupuncture etc etc etc. Faith put it so well in her post above. It doesnt negate other treatment's effectiveness when one has to try another way. I just have concern that this may hold out false hope for some who see that emphatic statement from Dr Sims' published work. And so I have only been cautioning on that aspect in the hope that, just as has been happening, parents will first ask questions, and when satisfied for themselves with the answers, will go into this knowingingly anyways again, it is my sincerest hope that all who are "pioneering" a new potential helpful treatment WILL find help from this. my prayers remain lifted always that people who pass through here will find, from the many treatments and triggers discussed,that specific light at the end of their tunnel. my personal feeling remains this device/treatment protocol from Dr Sims very likely can help some, but that it isnt a TS cure for ALL. And I sure hope many of those some come from here!!

one of the reasons this forum functions, with so many positive results, is that we really DO think "outside of the box" and for me that also means asking many many questions rather than just blindly jumping on every new bandwagon that passes through Asking questions about treatment techniques and costs, and also looking critically at what physicians claim about *any* treatment, is *essential* IMHO. That doesnt negate something good....it investigates it..... and if it is good, it will stand the test and be proven good. I am not sure what can possibly be gained by a newbie coming on here just to reprimand, and then refusing to share their positive experience . my goodness...if I had taken that attitude after all the times I got dissed about supplements and other alternative treatments on other forums no one would ever have benefited from my son's experiences oh well....glad things worked for your child newtotics

hello Guy as mentioned before my son has Crohn's and has kept it under control without flare ups for over 2 years now with the following supps: NOW Foods Boswellin with curcumin (extract from turmeric) and White Willow Bark as anti-inflamm and Slippery Elm to provide protective coating to the GIT. Also DGL-liquorice root chewable lozenges (must be DGL not plain) to promote healing of the ulcerated areas and fistula. He drinks a lot of green tea with local honey as well In addition he has a daily multivitamin/mineral shake by Jarrow called Multi Easy and extra Jarrow methylB12, as well as flaxseed oil For his tics/OCD he also takes his Natural Calm ionic magnesium, P-5-P form of vitB6, vit D3 and Inositol We got a lot of help re diet from a book called The Maker's Diet by Jordan Rubin, himself recovered from severe Crohn's. we didnt follow the diet to the letter but rather used it as a guideline My son has learned by trial and error which foods are ok and which not re the autoimmune aspect of Crohn's. He no longer has any probiotics, yoghurt, kefir etc as it seemed to cause crohn's flareups and has obviously also cut out all things that promote inflammation (omega 6) as well as all immune "boosters" hope that helps for you and yes... steroids can cause a major flare up in tics!

(((((((((((Bonnie))))))))))) we sure all understand. years ago, when I first started posting on forums to find help for my son and support for self, a lady who is now a dear friend had a post for those with a TS diagnosis. I have posted it here before but I am going to quote it again below as I think it is so relevant for those who do have Tourette Syndrome I learned long ago in this journey with my TS son that although yes, he has triggers, and yes, there is much we can do to help....yet he has TS and so he will tic....sometimes more, sometimes less.....but he tics. Period. It is *NOTHING* like it was before we started diet modifications/supps/acupuncture etc but he still tics. here is Lara's message:

this is why we originally took my son to Shands/Dr Murphy in 2000 as just after his 10th birthday in dec 1999 he came home from playing with friends and it was like anew kid had walked in...he started exhibiting phobic phases of OCD and depression plus monumental tics! however, all testing done at Shands indicated no strep connection for him, he has never even had strep throat to the best of our knowledge he did have tics like eye rolling and blinking and squeaking from around 3yo tho (we didnt realize they were tics then) and his behavior/moods were always very different from his even keeled brother (who has had strep throat), but again we just attributed it to personality back then. He was dx with TS/OCDand that was when we realized the eccentric sounds and movements made by my husband and his own father were likely TS too however, my husband has faint recollection of scarlett fever when around 5yo and being dunked in ice by his grandma to bring raging fever down Noliving relatives anymore for me to check on this but it does seem with hubby a strep conection may exist

hope you are able to quickly identify sensitivities Carolyn. Isnt it a blessing to have the foresight that you have gained from your own experiences to now be proactive for your baby re chamomille...I have never used it homeopathic way,but did always give my kids chamomille tea from infanthood, including while nursing. It is excellent for digestive and nervous system calming. I bathed them adding strained chamomille tea to water and also used Weleda chamomille baby products on skin etc.

that is an excellent resource and what a brilliant way to be able to educate physicians who are either skeptical or not knowledgeable re PANDAS. congrats on a great job to Diana and to Buster for all that research! I will add it to the useful sticky as well

just wanted to mention that although serotonin deficiency often also occurs with TS, yet it is primarily a syndrome where hyper-reactivity to dopamine occurs.

I have been most concerned too and just keep hoping that all is well

hi I have a link in my signature documenting the things that helped my son if you are interested in looking into any of those waxing moon = waxing tics/OCD for my son altho lately it has been a very mild effect which we attribute to his being 191/2 yo now, as well as his great care with diet and supplements l-carnitine helped his vocal tics when they were really bad tho I know some (like CSP's child) dont handle l-carnitine well

Hi tawny although only a qualified professional can actually diagnose OCD, yet from what you describe it does seem that you may be exhibiting some of the symptoms of obsession and compulsiveness. many members have found things like inositol, st john's wort, samE, methionine, 5HTP or tryptophan helpful in naturally elevating their serotonin and so helping with OCD symptoms. none of these should ever be taken with meds tho!! finding a good cognitive behavioral therapist can also be very helpful all the best

my son had a screeching tic that was stopped almost immediately when he started taking L-carnitine he was 12yo and weighed over 100 lbs and took 500mg a day

yes my son has waxing of his mood/OCD in addition to his tics with chemicals, including but not exclusive to chlorine perfume or household cleaner smells gives him an odd headache and then folllowed by irritible and "off" mood, tics waxing and that can often in itself be an OCD trigger for him, and freshly shampood carpets are a BIG trigger for him too, as well as pesticided gardens etc we honestly keep him as unexposed to chemicals as we possibly can, in food, toiletries, clothing, bedding, environment etc. It really has been worth it he has a TS diagnosis and we were told he wasnt PANDAS by Dr Murphy (he hasnt ever had strep throat either that we know of) He has shown so many of the symptoms that I see PANDAS parents mention over theyears so not sure if that is just crossover areas with TS/OCD or maybe the greater knowledge now re PANDAS would have shown him to have it back then he is 19yo now and seems to have his tics, OCD and moods, as well as his Crohn's under control with very careful diet, supplements and environment

Hi Swim we havent ever used the spray down method, only the epsom baths @ 2 cups epsom in tub of warm water or footbath with one cup epsom. try asking the member who mentioned the spraying on that thread I linked when I make epsom cream/ointment I use a tablespoon salts dissolved in same amount hot h20 and then blended into a 1/2 cup of cream

michele for some kids it isnt just the tics that get worse after swimming....................... (altho for some that worse ticcing can be severe enough to have them become afraid to swim!) my son started to have horrible breakouts of hives from chlorine water. along with pretty intense tic trigger some develop breathing problems, headaches and other stuff and yes, sometimes such sensitivity reactions can also cause behavioral/mood issues multiple chemical sensitivity (MCS) is a growing diagnosis because of the overexposure that we all get to chemicals it is like all allergies and can be serious if overexposure occurs. chlorine is but one chemical that some people have found has severe impact on them, including their tics. it isnt "depriving" someone with dairy allergy when you have to remove milk, or not eating peanuts if you are allergic to them. It is a necessary elimination for a potentially serious adverse health reaction. Similarly so for those who have severe reactions to swimming in chlorinated water. However as I mentioned above, there seems to be a viable option in using a salt purification system instead here is that thread on the TS forum http://www.latitudes.org/forums/index.php?showtopic=4886 also the relief some get from the epsom water my son had enough bad reactions to chlorine to decide for himself when he was only 11 that no way will he swim in it again.

may be an allergy related headache

my son has only had headache when his tics have misalligned his cranial vertebrae...one trip to thechiro and the headache goes he doesnt get "regular" headaches tho

Hi we have many discussions on the TS/tics forum here on the negative impact of chlorine on tics some are reporting success with specialized salt cleaning systems for their pools having an epsom salts bath afterward can help a bit and some spray their kids down with epsom water after swimming (spray bottle) chlorine is one of my son's biggest tic triggers

most prefer the L-carnitine as some react to the acetyl...but we have also had members here report the opposite...so again, as with all supplements, it is trial and error

just checking on you myrose and hoping things are getting better

Hi sorry to hear that...must be painful! l-Lysine inhibits the reproductive cycle of the herpes virus and is known to keep it dormant. Monolaurin (lauric acid supp made from coconut) is an excellent natural antimicrobial so may be worth a try too applying honey to the whitlow may also help speed the healing

we have a link on the pinned thread to this company that does do neuroxmitter testing https://www.neurorelief.com/index.php?optio...9&Itemid=74

there are a number of cases of Lyme being msdx as TS that I have heard of

San some kids have tics because of chronic strep infection, a condition known as PANDAS Severe OCD is characteristic and one of the symptoms many parents note is confessing/reporting things repetitively here is our PANDAS forum where there are other posts about this http://www.latitudes.org/forums/index.php?showforum=17 however confessing/reporting is also something that can occur after a trauma or other trigger so it isnt unique to PANDAS my son had it real intensely after he was hospitalized for a severely injurious tic and they had pumped him full of haldol and luvox.