Chemar

my son had TS tics that were self injurious and some were tourettic OCD we found this stabilized once his serotonin levels were corrected (we use supplements for this but I should note that when he was put on Luvox (an SSRI drug) initially it actually made the self injurious tics worse!)

my deepest condolences to Dr Latimer and family. I cannot even begin to imagine how devastated she is. How deeply touching tho that she would honor his memory by aiding PANDAS research (ps this was posted here the day it occurred, but it was removed at the request of her office. I imagine they must have been fielding so many calls of sympathy that it became too much to deal with)

if I may make a suggestion.....when posting threads here related to the Pepsi challenge.........it would be a good idea to include PANDAS in the title as then, when the Googlebots index the threads on the Web, it doesnt look like these are just Pepsi ads lol by including PANDAS in the title you may even get more votes as then parents searching PANDAS will also find these threads

hi Deby yes, a head injury or anything that causes cervical vertebrae misalignment can cause tics. I mentioned too on the other thread that some have found that if the trans mandibular joint is misaligned, this can also cause tics if you go to the NUCCA webiste you may get info on finding a practitioner in your area http://www.nucca.org

be sure to stand your ground on this! a child does not need to have learning disabilities to get a 504! All they need is some form of HEALTH impairment which a PANDAS child has. Diagnosed Emotional liability can also qualify a child for a 504 I absolutely agree that a doctor's letter is important....if you dont have one yet, let them know you will provide it and get hold of the doctor ASAP to write it many schools will try to block specialized accommodations as it means a bit more work for them. If needs be, find an advocate to appeal if you are denied. get every bit of info you can on PANDAS to provide to them as they likely do not have a clue! info on the TSA website may help you, even tho a different criterion, yet so much overlap http://www.tsa-usa.org/educ_advoc/education_main.htm

Hi giulia I disabled the link to that eBook as it is a total rip off! we have had people here order it and realize that all the person has done is copy stuff from here and elsewhere and then charge people for the info. and last I heard, was not honoring the pledge to refund if not satisfied so I disabled the link as we do not want to advertise for them on Google when this post gets picked up bottom line, dont waste your money when you can find the info here free and if you are going to buy a book....buy the original from Sheila via the Latitudes website here Http://www.latitudes.org

I am so glad to see this study getting media attention as yes, some have long suggested that much related to mental illness might have an immune and also possibly inflammatory root we were very interested to note the positive effect that adding anti-inflamm supps and diet had for my son after his autoimmune Crohn's dx. We were looking to treat the Crohn's but also saw improvement in his OCD symptoms, especially after adding the Boswellia/curcumin mix (which I later learned has had research on being helpful for OCD as well as its known anti-inflamm properties I have such deep concern for the many kids who are dx and treated for "mental illness" when in fact there are physical issues causing their mental issues! I know what the "psych drugs" did to my son and where they may have great benefit for some people, physicians first putting a child on them without even investigating further what else may be going on is wrong! So many people are suffering awful side effects from strong drugs that are only masking their symptoms and often making them sicker. It is way past time to stop this ridiculous separation of "mental" illness from all other illness and start seeing things "holistically" without them rolling their eyes and thinking "quackery" vent over! thanks for posting the research simplygina, and for the older work too Kim

Hi Stephanie I have never used activated charcoal but from my understanding it is used primarily to absorb toxins, whereas bentonite is both anti-tox and cleansing/healing I was given bentonite when recovering from severe pesticide poisoning (doused by a malathion crop sprayer killing mosquitoes while I was on an early morning beach walk ) My instructions were to take it on an empty stomach and wait a few hours before eating or taking supps it can also interfere with absorption of some medications so a good idea to discuss with a doctor if on meds

you could try a local The Vitamin Shoppe store as they carry a large selection, tho not as many brands as iHerb does

just an FYI when using bentonite clay internally, please be sure to get calcium bentonite and not sodium bentonite (aka Fullers earth) as the latter is for external use and can have unwanted side effects if used internally from my understanding it is ok to use specially formulated blends of calcium bentonite plus sodium bentonite, but not to use the sodium form alone

Hi Deanna sorry for confusion Deby had linked a Kid's Calm MULTI http://www.iherb.com/Peter-Gillham-s-Natur...7-ml/22855?at=0 it is the one that has sodium benzoate and all the amino acids in it....it is NOT the same as the Kid's Calm/Natural Calm mag,vitC, zinc powder that you have so dont worry...yours is good

I read some of Doris Rapp's books years back and was just checking something on her website for someone when I saw this latest book by her that sure is a welcome addition http://www.dorisrappmd.com/?page_id=3

Hi Deby that product you linked is the Kids Calm multi, not the Natural Calm, which is a magnesium supplement, I see the Kid's Calm Magnesium with just vit C & zinc no longer indexed on iHerb?? which is a pity that is a good multi but some things would make be leery of it 1. people with Tourette may tic more on it as it contains some of the amino acids they should avoid because of the dopaminergic effect (eg tyrosine, phenlyalanine) 2. it contains sodium benzoate...a no-no preservative 3. I would want to know what "organic flavors" mean? as even the term "natural flavors" has been found to hide MSG and other no-nos 4. some people with TS tic more with omega derived from fishoil

Hi Deby A Tourette Syndrome diagnosis is a clinical dx...ie there are no tests per se yet for TS and rather things like family history, tic manifestations and characteristics and duration are considered Usually physicians will not give a TS dx unless BOTH motor and vocal tics have been present for at least a year, with characteristic waxing and waning the ingredients in Bonnie's supps can be helpful to many who tic, but it is formulated specifically for people with TS as per the mission statement on her site http://www.bonniegr.com as mentioned above, some people with TS have found that they may initially tic more on the Bontech supps and then show a great improvement and some just do not seem to be able to tolerate them, for whatever reason. The vast majority of people with TS do seem to have tremendous benefit from them tho that is not to say that your son will not eventually benefit from the Bontech supps...more to suggest a wait to get the test results back and have a better understanding on why he is ticcing. If, for example, he does have PANDAS/PITAND, or allergy triggered tics, then obviously the infection needs to be treated or the allergens removed. while you are in the process of testing, it may be beneficial to maintain your child on a healthy diet and a good multivitamin/multimineral with a source for Omega 3, as this helps all people with neurological symptoms in addition, extra magnesium does seem to be beneficial for most people with tics so things like epsom salts baths and a mag supplement (as in natural calm) are generally helpful to many

that is pretty severe then Patty have you looked into the TMJ/tic connection thing then? hope all works out for the best...I nknow how hard it is when one's child has more than one issue and so the balancing act of what helps the one that may trigger the other!

gotta tell ya Patty...with the way my son always reacted to dental issues.....I would take the over & underbites and crooked teeth any day over the potential fallout from braces and headgear............. in fact, after one visit to an ortho, my son said he would rather be toothless than have any of that I know for some kids it is no problem............ it is a hard call for you to make. if it is any consolation, my son's teeth seem to have developed just fine without any orthodontic intervention

Deby remember too that TS-plus and the other BonTech supps are specifically formulated to help with TS tics and you do not know if your child has TS, so perhaps this is why the reaction? he may not need what is in TS plus even a few people with TS dont handle them well, as CP mentioned it may be one or more of the ingredients some people found the tics got worse before they got better when on BonTech so it is trial and error altho we based my son's supps on Bonnie's, I have never used her products as we found my son needed some things and not others etc at this time I would honestly think that magnesium as in Natural Calm and a good multi with extra Omega 3 is the way to go until you have a more clear idea of what is causing the tics

glad you found it helpful Deby I would not suggest giving chlorella unless you know your child has high levels of mercury, and yes, this has to be tested for. the yeast overgrowth(candida infection) is also tested for, tho there is a simple home test that can give an indication of it http://www.adhdrelief.com/CandidaTest.html a positive usually means there is candida albicans "yeast" overgrowth in the GIT a negative doesnt rule it out tho, so further testing (blood/stool) may be needed you may also want to look thru our helpful threads http://www.latitudes.org/forums/index.php?showtopic=2459 grapeseed extract is an excellent immune supplement that benefits most people, except those who have autoimmune illnesses re taurine and l-carnitine, both are amino acids and so need to be used with caution as different people react very differently to them depending on unique biochemistry as you are still not sure what the root cause of your son's tics are...I would personally wait a bit before deciding to try them and then, if you do, start low, go slow and do one at a time to be sure there isnt a negative reaction

Hi Deby all kinds of tics can be transient TS is characterized by both vocal and motor tics. In TS one tic doesnt just stay but instead they come and go, with varied intensity and frequency, called waxing and waning there is an amino acid called L-carnitine that some have found helpful for vocal tics, but as with all amino acids, reactions can be variable

a lot of people that I tried to recruit felt the comments and having to vote for others to get their vote etc was just too much but once encouraged to just do their one vote a day for PANDAS, they seemed more on board

deby do try the epsom salts bath each night to see if that helps him sleep better 2 cups epsom salts(magnesium sulfate) in a tub of warmest water, soak for 15-20 min before bed you can get epsom salts at the supermarket, Target etc

Hi Deby good that you are running as many tests possible to be certain on what you are dealing with do keep an open mind at all times as there are many different things that can cause tics, as parents here have learned it is also good that you are being proactive with diet and supplements as that has often been found to help greatly no matter the root cause. I have a link in my signature documenting my son's treatment plan. He has genetic inherited Tourette Syndrome with a bunch of other stuff added, but careful diet, supplements and environmental control turned his life back rightside up after an agonizing year after he was first diagnosed at age 10. he is now 20yo and doing great with the tics/OCD very stable.

Hi Melanie the die off reaction , or herxing, Herxheimer, is when microbes are killed and release toxins. Those toxins enter the bloodstream and cause ick symptoms in some people. lots of water, epsom baths, and detoxifying supps that "mop up" the toxins are helpful in reducing the effect, and taking good probiotics helps very much my son has always benefited from acupuncture and chinese cupping for detox during any die off

those are such great pics Carolyn praying the move goes smoothly and congrats on the graduation and the new job, and Aiden's #1 birthday

it really depends on your child's needs and whether he is already taking other supps that provide his vit C, zinc & calcium the kids calm is VitaminC and zinc with the magnesium....no calcium the natural calm is *only* magnesium, which is why most of us use it, for the benefit of the extra magnesium in calming tics the natural vitality is magnesium and cacium.....no zinc