Chemar

Hi Emma he still takes Inositol for the OCD, as well as his calcium/magnesium and zinc, but as mentioned above, once we got the Crohn's dx we were advised to stop the grapeseed extract and pycnogenol along with all supplementary Omega 6&9 I must stress again that grapeseed extract (NOT grapefruit as some confuse it) and pynogenol and all those other immune boosters are excellent supplements for people with TS etc the only reason we now avoid then is that they are contraindicated in autoimmune illness

Airbucket I really feel for you all I can say is that my son has genetic TS and we were given the same story about him needing meds etc etc however, the worst his tics etc ever were was when he was on the meds.....and we tried a number of different ones over the course of a year. so I guess I am biased, but our experience was that it wasnt till we took him off the meds that we started seeing an improvement, and started seeing him respond so well to the supplements and dietary changes etc

hi Emma no, IMHO, a child with PANDAS who has tics for more than a year does not always have a TS dx. Some children with the predisposition in their genetic makeup for Tourette, may have their TS triggered or "switched on" because of the neurological effects of the strep in PANDAS, but I would be careful of accepting a TS dx in a child who has no familial history or other TS markers. I honestly feel that TS dx are too quickly given these days, when there is clear evidence that tics can be induced by a whole lot of other things and seem to resolve once those issues are dealt with eg PANDAS & PITANDS, pyroluria, heavy metal toxicity, allergies(food and environmental), photosensitivity, candida yeast infections, nutritional deficiencies etc etc very well put. Individual biochemistry, metabolism, genetics, history of illness, etc etc make a big difference in what works best emma, do remember that if your child has PANDAS, then autoimmune issues and likely inflammation are high, and therefore you want to AVOID omega 6 & 9 and ADD more omega 3. The 6&9 promote inflammation while the omega3 dampens it. That is what is wanted in autoimmune/inflammatory illnesses...to reduce inflammatory agents and not to supplement with things that assist the inflammatory response. And yes, Omega 3 from IMO a combination of flish and flaxseed is best, but we do have many reports(my own son's included) in those with TS not handling the fishoil as well as the flaxseed. My son tries to up his intake of omega3 by also eating more alaskan wild salmon (we do NOT ever use farmed fish as who knows what they are being fed...certainly the salmon at our local supermarket has a label saying "color enhanced with feed"..........hmmmmm and it is known that farmed fish have antibiotics etc in the water to prevent illness and other stuff to stop pollution sooooooo Inositol is really good for OCD but again becasue of PANDAS being an autoimmune illness, you want to be careful on upping the immune system too much as that is going to make things worse. Grapeseed extract and pycnogenol are excellent immune boosters, but we were told to stop them for my son becasue of the autoimmune problems with his Crohn's. Monolauren is a natural antimicrobial (anti bacteria, virus and fungus) and so IMO a good thing to take. We use it too. But only for a few weeks when needed. You dont want to develop a tolerance there. Cheri

so glad you have a good doc, Alison re Bonnie's vits...yes some report that they see an initial increase in tics and then the improvement follows as you know, some do not tolerate them and need to take separate supps rather than the combination in the TS-plus by Bontech if I recall correctly, Ronna's PANDAS child initially increased tics on the Bontech, but then did really well on them hoping for steady improvement for your child

I so agree with you Jeff! Brink, for my son the mood swings that follow exposure to offenfing artificial ingredients like high fructose corn syrup, artificial colors and also MSG is very dramatic. He also gets "weird" after sucralose(splenda) or aspartame(nutrasweet)

my son never has taken more than 500mg/day of inositol that was what we were told to use tho I know some have used much more. I seem to recall we had a thread on this once and mrsD gave some excellent info there. I cant search now but maybe if you try a search on Inositol will bring it up. Cheri

((((trubiano))))) hoping you can bring this under control quickly and that if there has been strep exposure, the test will be clear and the treatment effective we never dealt with PANDAS, but I know how the waxing of Tourette tics and OCD for my son would drain me and leave me feeling so very helpless too. I pray God will give you strength to get through this and give you wisdom and guidance. Also for a healing touch upon your son so that these symptoms dont manifest with such severity. dont forget the value of calminatives like Bach's Rescue Remedy and Epsom Salts tubs hope things quickly improve Cheri

Hi Emma Bonnie's supplements are not multivitamins but rather specific formulations designed to help with Tourette Syndrome. There are good reports on them from many, including PANDAS patients. However they are not a substitute for a multi, and it should also be mentioned that we have heard from some who do not react well to them, possibly due to some ingredient in the TS plus that doesnt agree with them. Also Bonnie does a fish oil supp which is excellent, but do remember that some people seem to tic more with fishoil and for them flaxseed oil is a better alternative source of Omega 3 EFAs Finding good multi's can be challenging Our family has been using liquid multis for a while now Here are some choices at iHerb http://www.iherb.com/Search.aspx?c=1&kw=liquid+multi They also do a lot of multi's in capsule and pill form the important thing is to be sure it contains all the essential vitamins and minerals and trace elements in optimal absorbable form and no nasty artificial stuff or benzoate preservatives etc

http://www.mindwriting.com/Children/junkfood.html

rushing by...sorry basically, the short version of a complex biochemical mechanism is that omega 6 stimulates the inflammatory response via the prostaglandins...great in people who have a balanced inflamation system but not good for those with autoimune illnesses where inflammation is usually a primary factor. Omega 3 dampens the inflammatory response so good for autoimmune people. Immuno modulating substances, of which zithromax appears to be one, are those that return balance to the immune system, which is hyperactive in those with autoimmunity. So one is neither boosting nor damping it with these but rather keeping it at a modulated level. Anti-inflammatory drugs (eg steroids) tend to supress or damp the immune system. Modulators keep it at an even keel.

A new one just opened, courtesy of Artisan Sweets, called Natural Candy Store at http://www.naturalcandystore.com enjoy!

Hello Mike yes, having a good resource for physicians would be good but sadly we here find that most of them regurgitate the standard and archaic info on TS and offer nothing but drugs. Here at Latitudes/ACN we follow an alternative approach We do have a sticky thread here for Finding Medical Help also, have you read Sheila's book on natural ways to treat tics and TS? Here is more info http://www.latitudes.org/book.html all the best Cheri

Emma if your child has PANDAS but not TS as well, then the supplement protocol should not be the same exactly as that for TS because PANDAS is autoimmune, for example Omega 6 should be avoided and Omega 3 upped, and immuno modulators rather than immune booster supps should be used Until the PANDAS is better controlled (which usually means prophylactic use of antibiotics) then supplements can be limited to those specifically needed rather than the broader spectrum used to treat TS. Some PANDAS kids do have TS as well, but in many there is no TS, and tics are related to the strep effect rather than the neurological/biochemical mechanisms involved in TS This is where specific testing for needed supps/dietary changes are so valuable ps azithromycin/zithromax seems to be the antibiotic being most effective for many of the PANDAS cases we hear of here.

just a reminder that some people do NOT tolerate nystatin well and that there are also other treatments for yeast including capryllic acid(caprylate) and Candida Clear by NOW as well as Threelac

Hi Patty I am not sure I understand the question?? Nomatter the root cause of the tics, it is the central nervous system that is impacted and so that is the focus of treatment, as motor and vocal tics are neurological, even tho they may be "caused" or triggered by other factors Are you referring to natural treatments in general? or to specific homeopathic/naturopathic remedies?

kallik the "chelation therapy" that is referred to sometimes here re metal detox is VERY different from the mercury chelating chlorella supplement that we used to help with my son's metal detox (he also has specific acupuncture resonance biofeedback for this) Has your docotr run any tests to see if heavy metals are a problem for your child? it would be rather strange if he were doing a chelation program with no evidence that it is actually needed???

sounds like sensory integration dysfunction (SID) aka Sensory Processing Disorder which is very prevalent in many kids, especially with neuro disorders. Sometimes it just "settles" and isnt bothersome and for others it really is helped by specific occupational therapy good book and website by Carol Kranowitz: The Out of Sync Child http://www.out-of-sync-child.com/

Alison a ((hug)) from me too and prayers lifted for your whole family It's never easy when we have to face a new hurdle, but so good to see you focussed on the strength and knowledge you have gained

hi Dedee yes, one of his meds was an SSRI, Luvox, supposedly to help with the OCD he was titrated down from it over a period of 2 weeks. an excellent book on all this, with help in weaning off correctly to avoid the awful withdrawal symptoms that come when these brain drugs are stopped, is "Your Drug May Be Your Problem" by Dr Breggin http://www.breggin.com/yourdrug.html A few days after starting the withdrawal I saw a familiar gleam return to my son's eyes that had been dull and zombie like over that awful year of us foolishly allowing ourselves to be bullied by some docs and a school, and allowing him to be drugged and harmed by it. I knew that day I was getting my son back and things just kept improving daily as scary as withdrawal is...........it will never compare with how scary things had become to have my son on those drugs

Airbucket honestly, nomatter what your son "has"...he can ONLY benefit by having a clean diet (free of artificials) and supplemenhts optimized to suit his specific needs The interaction between all the systems of our bodies is well known, medically researched and documented. sadly conventional medicine seems nowadays to operate on prescribing pills to take away symptoms rather than holistically treating the ailment(s)

Airbucket where we should all try to avoid antibiotics whenever possible and only use for illness that urgently needs them, yet for PANDAS kids, antibiotics are the first line of treatment as that is the only way to control this strep! that is why we talk so of PRObiotics needing to be taken with them (3 hours minimum apart) to restore the natural good flora that the antibiotics also kill

just an FYI for anyone dealing with H.pylori and ulcers...............mastic gum (gum mastica) is remarkable in eradicating the bacteria and DGL liquorice (MUST be DGL) heals the ulcer both are available at Vitamin Shoppe and other health stores

how very encouraging to hear that Phyl thanks for reporting back on your success with that.

there are a couple of supplements that seem to be helpful for OCD and the different ones work a little differently so it is a case of finding the best "fit" for the individual. They all help to boost serotonin levels, which seems to help with OCD, anxiety, depression etc the safest is INOSITOL, a B vitamin, best taken with combined B6, in the mornings others that can be helpful are methionine, or better yet, samE as well as 5HTP and L-Tryptophan ( these two are very effective, but a bit more potent and so should be used more carefully, especially in children, and starting at the lowest dose in the evenings, as they promote sleep too. Some people dont react well to them and so any edginess or bad reaction means best to not take it anymore. They should never ever be taken with SSRI meds like luvox,prozac,paxil,zoloft etc as that can lead to serotonin spiking which is very dangerous! St John's Wort (hypericum) is also found to be very helpful for some.

hi itsme not sure exactly what your child is describing but my son once had a tic where he repetitively tightened his abdominal muscles and got a resulting pain there