Chemar

just an FYI that PWP (people with Parkinson's Disease) have the OPPOSITE from those with TS....TS do *NOT* want elevated dopamine as it is that which triggers the tics. People with Parkinson's *DO* want extra dopamine as they are deficient in it and that is what causes their neuromuscular tremors etc so a drug helpful for Parkinson's is unlikely to be beneficial for TS tics, but I giess one would need more info on this to know for sure

The TSA has up to date research info http://www.tsa-usa.org/research/medsciR.html

Guy, if the blinking is the only tic you have and especially as it started so much later in life for you, I would really wonder if this is TS. the diagnostic criteria for TS are motor AND vocal tics for 1+ years eye blinking tics can be caused by many other things including food, environmental and pet dander allergens, candida infection, photosensitivity etc have you tried L-carnitine? my son's tics also start at variable times but are always lowest when he is most relaxed and he never tics while asleep

i just wanted to give you a PS here too Guy if you have OCD/anxiety/phobias then be careful as where the MJ is supposed to be helpful with tics, metabolism, digestion etc it can intensify paranoia, phobia, anxiety etc

Hi CSP sorry you are going thru this again altho my son's tics were definitely worst during his pubertal years, yet they have never been as bad as before we switched to natural treatments. Even at their worst waxing since then they would be on a 4-5 compared with the 10 back then as mentioned before teeth have always been a major trigger for my son.. we were advised against the braces for 2 reasons....firstly becasue of his teeth being an area that triggers tics for him and secondly because of the metal. His teeth grew out just fine without any orthodontics, but if it had been very necessary, ai would have gone with invisalign rather than the metal, which I know would have been a major tic trigger for my son, and I know others for whom it has been too hormonal changes and the growth spurts etc can be triggers CP so that could be contributing too. my son is now using a foot spa that has heating and reflexology style vibrating things in it and does the epsom that way and it really really really helps when he is in waxing mode

tnksmom I so feel for what you have been through. you know the old saying "the proof of the pudding is in the eating?" I think if more docs paid attention to the wealth of crystal clear anecdotal evidence we would be a healthier people. If I were to have written down some of the %$#@*& that we have heard from conventional docs I think it would shock even them! If I had listened to most of them my son would have been in an institution drugged into a zombie state there is MUCH still needed to be understood about PANDAS and all relevant research is valuable. But for a doctor to discount everything based on preliminary research by a single researcher...............well what can I say anyways, I hope your hear from Dr Murphy if that is your choice but I did also leave you info on the other thread you had about a group of PANDAS specialists in Chicago that we have had good reports on from other members here http://www.webpediatrics.com/practice.html here is their PANDAS/PITANDS page http://www.webpediatrics.com/pandas.html

Hello Guy I believe Marinol is only available by rx in certain areas, but it is a legitimate medication, not an illegal drug. the Tourette Syndrome Association has also sponsored some pioneering work on the benefits of cannnabis to TS sufferers. You can request info on the various studies etc from them at http://www.tsa-usa.org

bumping up for the new mom who contacted me for this info

Hi and welcome the only time pain is associated with TS tics is if the tics themselves cause it try a warm tub with 2 tubs epsom salts (magnesium sulfate) dissolved in it and soak for 20 min. that can sooth the pain and also the magnesium helps reduce the tics. Epsom creme rubbed into the achy area can also be helpful

Hi trubiano are you sure of that recommended dose???? 500mg is usually the minimum dose and some go much higher my son has also been finding Bach's Rescue Remedy (Flower Formula) helpful with OCD and anxieties.

Hi and welcome yes, I agree the B6 is high especially for under 12 yo. and also as it is likely already in the multi with other Bs it is honestly a hit and miss with supplements until you find the root cause of the tics. If it is PANDAS related (tics from strep) or candida, allergies etc then the supps, altho all good, may not have much effect until the underlying issue is first treated. may I ask if your child had any vaccinations or illness prior to the onset of the tics? new house? paint?carpet?car? woodwork? any family history of tics? any allergies?

Hi gfam its possible that many dont realize the site is back up again. Also being peak summertime, many are away I dont have any info on the specific diet questions you are asking but its good you can get the testing done

my son has been helped by having a hepa filter in his room (he did not react well to one that also inonizes!!!!) and I try to keep things as dust free as possible. He also uses the non plastic anti-dustmite covers for bedding we do not use any chemicals in the house or garden and I use special laundry detergents, toiletries etc Biofeedback and acupuncture have also helped. We never used Neat Naet or Bioset but it sounds to me like a variation of the transdermal radiogenic testing/biofeedback etc that our acupuncture therapist does for him he flushes his nostrils with a saline solution too

I spoke with Sheila today and she sends her best to everyone. she is busy working on the new edition of the book ( http://www.latitudes.org/book.html ) and would like to update the section on useful resources so if anyone has a relevant website, or another book etc that you feel would benefit others using Sheila's book,, please add it here so that Sheila can go through them to select ones for the book It will also be a good addition to our own database here thanks! Cheri

not sure if u saw I had edited in above on the Chicago area pediatric group that specialize in PANDAS, tnksmom this is a thread where other members here also give feedback on them http://www.latitudes.org/forums/index.php?...0&hl=PANDAS thanks for that other great info too Mustang Carole

I just called Shands and they were very helpful in giving me a new contact number for Dr Tanya Murphy she is now at the University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291 hope that helps The PANDAS doc in Maryland is Dr Susan Swedo not sure of one with Amy first name?? I know there was also a recent lot of posts about a group of Docs who specialize in PANDAS but not sure where that is now....will do a search later and edit it in here. found it it's a group in Chicago area http://www.latitudes.org/forums/index.php?...0&hl=PANDAS

Hi nurse PITANDAS is a condition similar to PANDAS, but where PANDAS is strep induced, PITANDS is general microbes my son also tested negative to mono but positive to epstein barr and we did see associated waxing of symptoms The monolaurin, olive leaf, garlic, honey and uno de gato(cats claw) are natural antimicrobials that help

Hi it is usually the kids with PANDAS whose tics subside with antibiotics as it kills the strep is there red dye or other coloring in the antibiotic? if so that may be the culprit. one can get dye free meds at certain pharmacies (sometimes they have to special order) or get it made up at a compounding pharmacy

phew! yes even I was getting worried there Webmaster was away and so unaware that we were down and as the main Latitudes.org site was down too, Sheila couldnt get the emails I was sending to her as well. dont know what happened, probably a server glitch or something, but I sure am pleased we are back up. hope things are going well for everyone. my son has had an unexplained OCD flare these last few days.....one of those "has to be JUST RIGHT" ones and so we are trigger hunting and upping the OCD supps.

my son gets this and he calls it "funny tastebuds" comes and goes with different things I have always considered it part of his sensory integration dysfunction, which seems to occur in so many kids with neurological issues

yes sounds like you are right on the mark with potential triggers...stress tho congrats on the biz plus allergies. airborne allergies are a major trigger for many fyi my son can eat honey and take royal jelly but cant tolerate those pollen supps etc. here again is the triggers Article on Latitudes so you can see if maybe any others there http://www.latitudes.org/articles/finding_triggers.htm are you taking epsom salts baths to help soothe tics etc at night. good way to get that extra magnesium in. re the nicotine patch, I know TSA has research on why nicotine calms tics. if no risk of addiction and only very occasional it may be a benefit

Hi Pudgeo have they dx your child with a viral infection as well? Strep is a bacteria and so needs antibiotic not antiviral?? Acyclovir, as far as I know, is antiviral in that it stops the reproductive cycle of the virus, hence preventing symptom outbreaks. It makes the virus dormant. however, with streptococcus being a bacteria not virus....how does your doc feel this will help??? Nurseg, so sorry your child is going thru a waxing phase. Are you giving extra magnesium? (at least 400mg per day) that made all the difference for my son when he had "whiplash" tics of neck. also maybe try rubbing the epsom cream into neck? also a good NUCCA chiro can help much to ease the tensions in muscles and realign the cervical vertebra which get put out with those tics, so contributing to more tics. Its a cycle I know well! doing the food allergy tests as well as maybe pyroluria, metals, candida etc is maybe worthwhile as well I sure do hope things settle as I know how scary those neck tics are.

if I can just reinforce what Carolyn has said by adding what our pastor has always told us: if you are worried that you have committed "the unpardonable sin" relax!! you havent. the fact that you care shows you are God's child I pray His peace be with you and that you will know with certainty that He fully understands your OCD and you....and LOVES you through it all! my prayers are lifted for you Cheri

http://www.medicalnewstoday.com/articles/114878.php altho the article discusses neurodegenerative disorders like PD, yet is there some clue here into susceptibility to this hyperimmune condition? could all those childhood vaccines possibly be triggering this in kids whose immune systems are still in developmental stage naturally. could the genetic link be why some kids seem to be ok after the vaccines, yet we are seeing this modern day "explosion" in neuro and immune illness related disorders in kids....possibly the genetically predisposed ones also thinking back on Kim's many posts re cytokines as well as my own observance on stress triggers so many puzzle pieces huh

yes, GABA is an inhibitory neurotransmitter from Wiki http://en.wikipedia.org/wiki/GABA