Chemar

Hi we dont deal with PANDAS, but son & hubby have TS and other neuro/immune stuff for probiotics we use Stoneyfield Farm plain yoghurt or plain kefir (homemade or store bought) for omegas we use the good balance of fresh ground flaxseeds and use a lot of flaxseed and coconut oil in food, plus wild alaskan salmon in diet. my son has always responded better to his probiotics and omegas from diet rather than in supplement form fishoil supps are considered the prime source of omega 3 but for inexplicable reasons some people with tics seems to tic more when on fishoil supps, even tho they can eat the fish just fine my son's gut is sensitive as he also has autoimmune Crohn's Disease, and any other form of probiotics apart from stoneyfield yoghurt and some kefir, seem to aggravate his GIT

I honestly think Doctors are far too quick to hand out a Tourette diagnosis because that is kinda what they have been taught! Very few conventional doc are aware of the many other things that can trigger tics and OCD, including PANDAS I agree with you that if your child has no tics anymore then it is likely the TS diagnosis was incorrect. As you point out, TS tics wax and wane but totally going away for any length of time is not usually characteristic of tourette tics

Hi we use primarily NOW Foods supplements and those by Jarrow. (Sometimes we also get vitamin shoppe brand locally as last resort...I am not too keen on some of their "fillers") He takes the cal, mag, zinc as separate (by NOW) but also has a Sundown/Rexall combined one that he takes when out of the individual ones. We always liked the taurine by NOW, tho he doewsnt take taurine as a supp anymore, as his tics are so mild as to seem to get all the benefit he needs from the magnesium. Remember tho this also has to do with him now being out of the teenage puberty years! which are always the worst for tics I order most of our supps from iherb.com as they are usually cheapest, even with shipping

coconut oil has the "good" balance of omega 3 to omega 6, like flaxseeds do my son finds coconut products good for him http://www.healingdaily.com/detoxification...d-liver-oil.htm omega 6 IS an essential fatty acid so one cannot avoid it completely the key is eating it in foods that have the correct balance with omega 3

Updating Feb 2010 as my son is now a few months past 20yo, 10 years since we started this TS journey..... I wanted to update on his current situation He is doing great! tics still mild, more slight facial/head movement, occasional eye blinks and "uh" vocal OCD pretty stable and more things he can handle with ease (neatnik, ordering things a certain way, some of the sensory stuff) He has a very healthy diet and basically *only takes his magnesium supplements in a variety of ways for tics. (natural Calm, a cal/mag/zinc supp, epsom salts baths, footbaths, soaked cloth application, in addition to dietary magnesium intake) He has recently gone gluten/dairy/corn free, along with still avoiding all artificial food additives and preservatives we havent noticed a dramatic reduction in the already mild tics from the gluten/dairy free diet, but he has found enormous digestive benefit from it, with his Crohn's Disease symptoms subdued! I should mention that his supplements for a day are now: for tic reduction: *Magnesium as mentioned above all purpose Omegas: fresh ground flaxseeds and flaxseed oil in diet Probiotic= Stoneyfield Farms Plain Yoghurt (he likes plain kefir as probiotic too but lately finds the yoghurt a better choice re his digestion/autoimmune stuff) multi Jarrow Multi Easy Multivitamin and Multimineral for OCD/mood related Vitamins METHYL B12, P-5-P B6, Inositol & Vit D3 plus methionine in the samE form Crohn's supps for anti inflammatory and GIT healing properties NOW Boswellin Boswellia/curcumin (Boswellin also had OCD reducing properties, curcumin is a potent anti inflammation agent derived from turmeric) White willow bark (natural salicylate) DGL liquorice (MUST be DGL for gut healing property) slippery elm coats mucous lining of stomache and prevents further inflammation) once a month he goes on about a week to 10 days of "natural" antibiotic supplements of Monolaurin, Olive Leaf Extract and Candida Clear. Crohn's is known to have symptoms of bacterial/fungal GIT issues, so these, along with the probiotic yoghurt daily, really helps. He also takes L-lysine to keep Epstein Barr virus dormant His diet is very pure and wholesome, a lot of brown rice in many forms,( including pasta, cakes, crisps), quinoa products, vegetables & salads (except corn and potato), all fruits except grapes, pineapples, watermelon) organic chicken and lamb or beef, lots of wild alaskan salmon and healthy fish, olive and flax oil for salads and cooking, lots of garlic, ginger and turmeric in cooking, rice or apple cider vinegar, plain yoghurt used instead of milk for cereals, and in sauces instead of cheese or dairy, wheat free miso /soy products, coconut milk and oil and spread, green tea, pure chai, some pure fruit juices, lots of reverse osmosis water.....that kind of stuff amazing how the kid who looked at me in horror 9 years ago when I said 'no more blue raspberry slurpees or Doritos for you!' is now the kid choosing his own healthy options and doing so well in all aspects of his life as a young man! Going "natural/alternative" was the best decision we could have made when traditional meds caused more problems than benefit for him. Latitudes and this forum were an integral part of of our "turnaround" in managing his health I hope others will be be encouraged by our story, as 10 years ago I was a mom reduced to a heap of tears and despair over what was happening to my precious boy! Here I am smiling to see where he is today

Hi good for you that you are seeking to find answers yes, this may be tourette BUT there are also other things that cause these kinds of tics and behaviors so if you dont have a family history of tics, TS or OCD you may want to especially start checking these other possible causes first is usually strep related tics & OCD. A condition known as PANDAS or any other infections? also allergies...some kids who are gluten and/or dairy intolerant have tics, also other food or environmental allergies may be responsible some kids seem to start tics after receiving vaccinations others may have tics related to TMJ (jaw/teeth) problems there are numerous other potential triggers so do start reading around our forum and keep asking questions here are some helpful threads http://www.latitudes.org/forums/index.php?showtopic=2459

hi and welcome magnesium is known to help reduce tics, especially for people with Tourette (some research at www.bonniegr.com on importance of magnesium) bathing in magnesium sulfate=epsom salts gives this benefit, while the sulfate in the salts helps to detox you can also use a footbath or cream but it isnt as effective as the full soak this is done in addition to taking oral magnesium supplement

Hi I have quite a lot of websites I have been looking at , but here are a few relevant to mito function and antibiotics http://www.mitoaction.org/blog/may-mito-me...ty-mitochondria http://americandrugdiscovery.com/ViewArtic...x?ContentID=758 http://www.autism.com/medical/research/adv...antibiotics.htm http://www.thebody.com/content/art1976.html I have lots more but that is a start the last one is related to HIV but has a really excellent description of mito function/damage potential of drugs

my son takes D3 as it helps with OCD/depression. he did not test deficient but he knows he needs this extra D, especially as he doesnt spend a large amount of time outdoors to get enough tat way most people are not getting enough D3 naturally unless they spend most of their day outside the only time one should not supplement D is if one had an excess of it. but it is hard to say for an individual without knowing their specific needs

Maybe try antimicrobials like monolaurin. The lauric acid from coconuts seems to be quite amazing in the spectrum of microbes it seems to get at. I heard that it is even being tested re HIV effectiveness? olive leaf extract is another that seems to be able to get to things that the regular antibiotics dont. at least so our naturopath told me. there are other herbs and spices that also have broader antimicrobial properties

and please do NOT click on the link in this message as it may be a bad site sorry that these got thru but sadly it is hard to know who will abuse the PM system here and we dont want to restrict new members being able to PM as that would be hard for newbies who urgently need advice/info

hi Bev yes, as posted above, please just ignore it...it is a spammer sending these PMs. it is best NOT to click on the link in the PM

seems a spammer has been sending PMs re a virus alert I have contacted the webmaster to ban this person please ignore the PM from brickey

seems a spammer has been sending PMs re a virus alert I have contacted the webmaster to ban this person please ignore the PM from brickey

I know longterm use of antibiotics is a lifesaver for most kids with PANDAS, so this is not in any way suggesting not to use them! This topic just caught my attention as I have been looking into mitochondrial stuff related to something else Is there any study being done on the effect of the antibiotics on mito function in PANDAS kids or others who have to be on regular antibiotics for their illness. I recall reading some reports a while back from the Autism community on findings of mito dysfunction in autistic kids after long term antibiotics If PANDAS children are already exhibiting mito dysfunction, is there some need for concern re this aspect of potential side effect from long term antibiotic use?

sounds to me like you hit the jackpot with your doctor abbe hope things keep getting better!

I would also be sure that he is getting all the vitamins & minerals generally needed for everyone too. We like Jarrow multi easy. my son also feels it important to have his METHYL B12 and vitamin D3 daily with the magnesium and P-5-P form of B6 that he takes. if your son has TS, Lele, sometimes there will be waxing and waning that you may not find triggers for. There are internal triggers like the hormones and other stuff too. We cant control those! and so we need to try to get rid of anything else that may be a trigger so that the whole system is so much better balanced that the waxing times are not as intense or as frequent as we found when not doing these natural treatments methods

I always think that, with young kids and how they are "at" re their having tics, one should always watch these kinds of movies oneself, then make the educated decision on whether or not to share with your child. maybe record it, watch it, and then decide and even save it for later, when older and more understanding for the record I think it is a great story

the jury is still out on this but many parents whose kids already have neuro probs try to stay away from all booster vaccines. Just as hope has said, frequently kids build sufficient immunity from the first shots and dont need those boosters. some parents on the forum have info on which forms to provide the schools for this

lele are you also doing the extra magnesium and epsom salts baths? any other supplements? we really did find it was the combination of treatments that helped most rather than just diet, or just supps, or just clearing candida, mercury and other toxins & /or infections

just wanted to also link the book "Natural treatments for Tics and Tourette's : A Patient and Family Guide" by our admin, Sheila Rogers there is some info re PANDAS in it, ...but it may also prove helpful to PANDAS parents because of all the other info on symptoms, diet and treatments that is "crossover" re Tic Disorders, Tourette and PANDAS http://www.latitudes.org/book.html to subscribe to Latitudes Online Magazine https://latitudes.org/membership-3/

it is so hard to try to guess what causes stomach ache Hope my son never got it from the 5HTP hoewever, starting 2005 (and when he was no longer taking 5HTP for about 2 years) he did begin having stomach aches and after much misdx, it was finally dx as Crohn's in 2006 after a colonoscopy/endoscopy not saying you child has Crohn's but just cautioning that sometimes stomach aches are worth investigating fully. I know that food intolerance can also trigger tummy aches, as can stress etc have you done gut candida albicans ("yeast") infection testing? that can also produce tummy aches just as an aside, my son has decided to go gluten/dairy free and has noticed tremendous benefit in his digestion, even tho he did not test intolerant to gluten or dairy products. He has also been totally corn free for some years now so many of our kids with neuro probs also seem to have GIT issues dont they!

Hi the food triggers depend very much on the individual. Altho most find artificial chemical foods a trigger, only those with sensitivities need to totally avoid certain food types...many even without tested sensitivity still benefit from avoidance of some eg sugars, gluten, casein the best way to go is to have the testing done and meanwhile an elimination diet where you cut out a foodgroup for a while and then see the effect and then slowly reintroduce it and see the effect. We were told to do at least a month off. this way you dont have the big deprivation of stopping everything and not really knowing what may or may not be a trigger. but moving away from the artificial, colored, flavored, modified, preserved additives is always a good idea! and eating as whole and organic as possible a diet helps enormously hope that helps

re MSG it is one of the biggest tic triggers and also causes flares of many other neuro conditions and other illnesses we have many threads here about its hidden names and also that it is bad stuff for tics. my son can immediately feel when he has accidentally ingested some. just wanted to link Sheila's book again and correct the title as it is called Natural treatments for Tics and Tourettes in case someone struggles to find it...no "disorders" in the title http://www.latitudes.org/book.html here again is the article on tic triggers (scroll to the bottom for the list, which isnt comprehensive , but gives some helpful pointers) http://www.latitudes.org/articles/finding_triggers.htm

fixit you have to do whatever is right for your child if this is TS then acceptance is a major part of coping, and then just doing the best you can to make it as good as possible for him and you. If that means trying meds, it is an avenue you feel you need to explore, and we all hope it would work well for him I totally disagree with the neuro saying that there isnt a pattern about kids past puberty showing improvement and that adults tend to have tics much subdued than teens. yes, some people do seem to have their tics persis into adulthood, but there is much documented to show tics often do get better after puberty! that site you linked has a lot of helpful stuff, but the person who runs it has been quite insulting about Latitudes in the past. hopefully time has mellowed that attitude. a very balanced site is www.tourettesyndrome.net