Chemar

Hi Mary I had not seen the Brainchild products before but they do look very pure and well formulated, and how great to have those liquid supplement formulae. Bonnie's supplements are formulated *specifically* for kids with Tourette Syndrome and so that is an advantage *if* your child has TS Cheri

hi Caryn, that recipe sounds like one my granma used to make! we very seldom have colds,coughs,flu here but when we do I tend to go for a thyme tea with lemon and honey there are also very pure and highly spoken of (albeit a bit pricey) products at www.nativeremedies.com for all ailments, including respiratory C

glad to see you posting this encouraging news, Alison and so glad that the L-carnitine worked for your son too as it did for mine. my son had a screaming tic for a couple of weeks and I truly was desperate to find some relief for him as it was driving him (and I confess, us,) batty....it was very loud and was one of those when OCD and TS tics blend. It started a vocal tic that then got louder and louder and by that time he started "having to do it" compulsively and then it became an obsession to get it "just right" anyway, I found some info on L-carnitine and vocal tics and ran it by the doc's and we decided to try him on the 500mg a day and voila! the screaming vocal tic began to wane. he stayed on the carnitine for a couple of weeks and then doc suggested we take a break and see but that one never returned. My son does still get occasional vocal tics. He tried the l-carnitine again a couple of years ago but found it then made him feel a bit "wired" and so he decided not to take it again. Faith, re the acetyl L-carnitine vs just the L form, it seems to depend on the individual as to which works best. I am not sure but I think that the "over vs under methylated" theory may play a role in which is better tolerated. My son took the L version. anyway, here I go rambling again *blush* but it really was so good to see that "it has passed", Alison and also to explain how I came to share what worked for my son when Alison was looking for pointers. do remember, for younger and lightweight kids especially, always do check doseage of amino acids with a doc first. My son was 11 and quite heavy at the time he took it, which was why the physician suggested the 500mg dose daily. praying things stay waned all round, Alison. Thanks so much again for sharing your positive result

Hi Kim good topic! from my understanding, it isnt the increased level of dopamine that is the tic trigger in Tourette Syndrome, but that the dopamine receptors over react to even small changes in dopamine levels. The way I have understood it, even small spikes in dopamine can result in an exagerated response in those with TS, because of this "hypersensitivity" to dopamine fluctuations by the receptors. gotta run, but that is how I have always understood the dopamine issue re TS. I am sure there must be a lot of more recent research on this, which I havent kept up with. Cheri

Hi Kim I think once again it is ESSENTIAL to distinguish between tics resulting from Tourette syndrome (where dopamine has been shown to have a definite role in increasing tics) and tics caused by other factors. that was why I specifically said that those aminos that increase dopamine are not recommended for people with Tourette Syndrome, and it is one of the reasons I am always so careful to draw the distinction between those with TS and the other tic disorders as I do not feel that they have the same biochemistry and so believe they react differently to supps etc I know of a number of kids in whom Ritalin actually triggered the onset of their tics. anyway, again I would urge caution *IF* your child has a TS dx and only because *some* of those amino acids are known to result in increased dopamine, which is known to trigger more tics IN THOSE WITH TS I certainly would not suggest ignoring the doc's recommendation....and was more suggesting asking questions *only if* your child has a TS diagnosis.

great points that Kim has made there, Nick's mom My son is now almost 18yo and has been dx with Tourette's since he was 10 We began the alternative treatments when he was 11yo and he has learned during this time that when it comes to maintaining a healthy diet and taking his supps, slacking inevitably means more tics and OCD and moodswings and more for him. So, nomatter how he may crave those Doritos or the blue raspberry Slurpee ........he will not touch them because he has learned for himself the hard way just how bad they are for him. and yes, I really do think antibiotics can make things worse, especially if they are not being balanced with probiotic intake. Antibiotics kill off good biotics in the GIT and so candida(yeast) overgrowth can result...and that is known to be a major tic trigger.If he does have candida, NOW products make Candida Clear, which has the added bonus of seeming to clear acne! I too am puzzled as to why he stopped the supplements when going on the antibiotic...IMHO he would then need them more than ever, unless their was some contra-indication mentioned by the doctor I dont know if you have ever read the tic triggers article but it may help your son ID those that are causing more tic waxing for him http://www.latitudes.org/articles/finding_triggers.htm

Hi Michele some of those amino acids are known to stimulate dopamine and therefore can increase tics in those with TS. I would not want to contradict your doctor but I would certainly suggest caution in giving any amino acids that could stimulate more tics. I Compounding can be very useful in that it gives specific amounts of specifically needed supplements in a single pill..........but as you have seen, it can become very costly, especially when one can obtain all of the aminos individually, in both powder and capsule form. here is some info from Bonnie Grimaldi's site that discusses a bit on good and bad amino acids for those with TS http://www.bonniegr.com/ts-PLUS%20Diet.htm

the best form of magnesium for those with TS is magnesium taurate one of the most absorbable form of magnesium is magnesium lactate but that is often hard to find Mag oxide is indeed the poorest absorbed, yet is in most stuff Mag citrate is well absorbed but is also a laxative some of the mags now come in blends I have noticed here is an *excellent* thread by mrsD on magnesium

Hi Kelly honestly I think it is a variable situation now that we know the TS link in my husband's family, and looking back, we realize that our son had tics from when he was real tiny...we just didnt know what they were. when he had eye blinking/rolling aged 5, it was dx as related to his vision problems. He was dx with ADD and SID at that time too his squeaking, tapping, etc we thought were "habits" but just after his 10th birthday he had a dramatic (literally overnight) change with deep depression, phobia, anxiety, intense OCD and severely injurious tics exploding. It was a very dramatic change. That was when he was dx with TS/OCD Even tho he had never even had strep throat, we did take him to dr Murphy at Shands, and PANDAS was ruled out so, altho we now know he had tics, and likely OCD from an earlier age, he also had an explosive full onset at age 10, not disimilar to that seen with PANDAS

hi petb yup, woulda been $40 down the drain IMHO I hope you dont mind, but I have edited out the link as I really dont want people to go there and be duped. Cheri

I have heard others say the same thing, itsme The general consensus the last time this was discussed was "waste of money" this *incorrect* statement from that website shows just where this is coming from:

I really do want to stress again here that this forum is made up of members and with *no* proffessional representation and so I really strongly urge all who are being seriously plagued by any thoughts of abusing a child to please find a good and caring psychologist who can help you with Cognitive Behavioral Therapy. If there is even the slightest chance that you could act out your "fantasies" PLEASE seek help. Here, people can discuss what they are experiencing, and it is good to be able to release the feelings and exchange views, but it doesnt compensate for proper treatment, especially if their may be *any* risk to a child. I would again like to point people to Psych Central, which is far better equipped for discussions of this kind. Here at Latitudes/ACN, the focus is far more on alternative treatments for childhood neurological disorders, rather than on psychotherapy. here again is the link to some useful websites, including Psych Central and its forums http://www.latitudes.org/forums/index.php?showtopic=1963 I hope this info will be helpful to all

yes, as Caryn has elaborated, people with celiac disease, or even just gluten intolerance, see a dramatic improvement in their overall health and wellbeing once they remove the offending foods from their diet. this would also mean better absorption of nutrients and therefore less deficiencies of vitamins, minerals etc. Instead of the gut fighting the allergen all the time, it can function optimally. However, for those who are NOT celiac or gluten intolerant....please dont think you can just cut out gluten and not need to give supplements anymore etc and that this will therefore bring tic relief It can never be stressed enough that this board represents *MANY* different types of tic disorders and there are therefore varied root causes for those tics, and equally varied methods of treatment... The unifying theme seems to be to clean up diet (and/or environment) of anything that is problematic, and supplement deficiencies *as needed* This is where specific testing plays such an important role in directing correct treatment Cheri

Inositol has been a "staple" in natural ways to treat OCD for some time as it is in the B vitamin family (aka vitB 8) it is a safer way to at least begin to help with OCD and other mood/behaviour issues. methionine (or the more expensive samE) are also helpful Dedee, I confess I didnt read thru all on that article, but they may well be onto something re the glutaminergic receptors etc however, it seems that they are suggesting another medication for treatment, which again brings the chance of unwanted side effects honestly, cognitive behavioral therapy(CBT) plus the careful diet and supplements were what finally brought my son's raging OCD to controllable levels we had him on 5HTP for a while (l-tryptophan wasnt available then as it is now, and it is a better choice IMO) and also the methionine and inositol he now only takes inositol for OCD, 500mg per day, and has maintained a stability in his OCD for which I am very thankful (and of course he has eliminated the food colors and the other yuck, including the MSG=glutamate that can trigger OCD so badly) I do however firmly believe that the CBT was the stepping stone to coping with OCD for him, and laid the foundation on which our other modifcations could work

Just FYI on Dr Robbins.....he is on the Latitudes/ACN advisory board and is and Environmental Doctor and very knowledgable (carolyn_lsc has been seeing him for a long time ) http://www.latitudes.org/brd_mem.html when it comes to PANDAS however, in Florida, there is Dr Tanya Murphy at Shands Clinic in Gainesville. She *specializes* in PANDAS, and is also knowledgable in many areas related to tics, TS and child neurology http://www.psychiatry.ufl.edu/people/bios/murphy.htm http://mdc.mbi.ufl.edu/murphy.htm

Hi airbucket yes, it sounds like it is irritated skin that has died and now flaking off bacteria and fungus love to hang out in the creases of our bodies and can cause reactions that look a lot like diaper rash. the best way to prevent is to keep areas extra cleaned, even after a shower, a wipe with witch hazel is good and a thin layer of zinc oxide cream is helpful too as it prevents further growth. I have noticed that if any of us have candida overgrowth in gut, those kind of irritated areas manifest more inside. have you done the candida yeast spit test on him yet to get an idea of whether internal candida may be a problem? http://www.1stcandidacure.com/candidatest.html so glad you got your appt with Dr Robbins...I have heard very good things about him Cheri

sorry IMO is cyberspeak for "in my opinion" and the IMHO is 'in my humble opinion" with Tourette syndrome it is IMO not always possible to find a definitive trigger for tics...waxing and waning is characteristic of the syndrome and yes, internal or external triggers may still be causing the waxing, but we have found that it just isnt as cut and dried as a definite trigger being identified all the time. Sometimes those waxings just come, with no clear reason why. Developmental pediatricians are usually referred to by one's GP or regular pediatrician.

Hi Becky, yes, finding doctors who understand what so many are seeing and sharing anecdotally on sites like this is hard. Thankfully there are some, and it seems an increasing number so I remain hopeful that soon doctors will be trained in nutritional healing and a more holistic approach to illness than is maybe happening in the conventional schools of medicine. still, this is now and so we all have to do what we can on our own and keep seeking for a good doctor. My son is now under the care of a D.O. and I must say I like the approach as well as the interest in learning of new things. Their is an open mindedness. And DOs are trained exactly the same way as conventional docs, just with that added *something* that helps them see the whole picture more easily I think, and a willingness to at least listen and consider and investigate when a patient shows marked improvements without having to take precription meds. It isnt a "one pill fits all" thing is it...whether the dx is TS, or PANDAS, or pyroluria, metals/vaccine, allergies, photosensitivity, toxins, parasites like candida etc or all of the above.....it is a much bigger situation than the way I have found most of them look at illness, as a dx followed by an rx. anyway, the l-carnitine is an amino acid and it is IMHO always good to have on and off periods with those, and always to try to work with a doctor when giving them, but I know when it was helping my son, he took it for about a year after we first started the supplement program and then we had a re-eval and tests etc and tapered down to what he now takes as his "maintenance" health program, with a few things kept here in reserve for "as needed" in those TS waxing times. A Developmental Pediatrician Specialist can give a TS dx...neuro is IMO only needed if you have a really good one who is open or if their are other neurological issues involved.....for TS and if you dont want to medicate, I would see a dev. ped if you have one. re getting a dx...honestly, we have it in the family and we dont shy away from the dx....it is worth having IMHO. Whether for school or later in life when work and all those other things come along. Sometimes having that dx can be VERY valuable in getting needed accomodations and understanding in Life!. Doesnt have to be used if not needed, but worth having. honest, being disciplined re the diet and the needed supps really has made the night and day difference in my son's overall health, including his TS. ... and pretty good for the rest of us too! We are so used to eating natural now that we couldnt imagine eating the stuff that makes us feel yuck anymore. ...and taking just a few but needed supplements seems to help us all along. My son, almost 18yo now and at this for 7 years is getting so good too at finding foods rich in what he requires, and so always reducing the level of actual capsules and pills that he has to take, and chats to his doc now himself about these. proud mommy and we are back at that point to a good doctor...dont give up searching...use google, ask about your area in case others have seen good ones, but having a qualified health proffessional really makes such a big difference to following a clear course of treatment. oh my I have rambled on.......... but hope I have been able to give some pointers through it all Cheri

I think we all benefit from digestive enzymes in our modern diet, we use the Power Herbs Digest Ease by Nature's Herbs

hi Becky if the L-carnitine was helping, I am not sure why you stopped giving it? My son gets dramatically worse if he slacks on his diet especially and on his essential supps just a thought...........House buying/moving etc may be causing you stress and so upping kids' stress= increased tics An official TS diagnosis can be helpful re school accommodations etc

Hi Becky *if* there is a *correct* diagnosis of Tourette Syndrome, then one needs to be prepared for waxing and waning of tics, although the good diet, supplements etc seem to keep those waxing periods less frequent and less intense. My son had some tics when he was younger that manifest once and have never been seen (or heard) again, whereas some of his tics have been around to a greater or lesser degree for 7 years. if the tics are being caused by something other than TS, then there is often complete remission or dramatic improvement once the root cause is found and correctly treated. (eg allergies, infection, heavy metals, candida, PANDAS, pyroluria, photosensitivity, etc) many kids have what is known as childhood transient tic disorders, which seems to resolve on its own as they get older, frequently helped by dietary modifications, detox etc Even those with genetic TS often show diminished tics as they pass the puberty years so I guess the short answer on whether tics always return is "depends" on what the root cause is.

yikes I do find it troubling that a doc would put a child on antibiotics *before* having evidence of a microbial infection and honestly, even if it does turn out to be strep, I think I would wait to get results first were it me. and yes, pharmacists are able to substitute drugs for ones without artificial coloring

I am not sure if this news has already been posted http://www.newsweek.com/id/70847

nothing some doctors do ever surprises me anymore kallik saddens me yes, but surprised....nope, as I have long since learned that most have their minds closed shut What saddens me most is that so many of them wont even bother to listen and maybe go investigate for themselves was the throat culture positive for strep? I ask cos you say they prescribed antibiotics and so I asssume it was for strep?? also, re the game.......if it is very explosive in terms of flashing lights, then there is always the chance of photosensitive triggered tics. One of the reasons we taught our son to always have a daylight lamp on when he plays games. He isnt highly photosensitive like some kids with tics can be (see Claire's many excellent posts on "screens" and "photosensitivity" ) but he definitely reacts to intensity of light flashing in darkened rooms with more tics.

Hi Patty no, not everyone who stutters has TS, just that stuttering IN someone who has TS CAN be a tic.