Chemar

Hi Kelly he has had some waning periods where his tics have appeared almost non existant tho never totally gone. he has likely had tics since very young even tho we only got the dx after the OCD/depression and intense tics started aged 10, Those were almost always waxing and very severe tics, so intertwined with the OCD that what he has now is so very very mild, even when waxing. He moves, or he has vocals, but nothing like it used to be back in the early days and even when he was on meds.

Hi Nan we found what I call the "excitability" tics to be less triggered when we had introduced the supplement plan magnesium is very calming, both as supplemental form and also as epsom salts baths we also use Bach's rescue remedy but you should first check possible allergies to it's flower ingredients

different people react differently to the acetyl form of L carnitine we used the regular L-carnitine with success. Others have preferred the acetyl form.

from Physician's First Watch 3/7/08 here is the Associated Press Article on this vaccine case here is the Statement by the Health Resources and Services Administration on Autism and the Vaccine Injury Program here is a PDF for Background of the Vaccine Court

Hi Michele here is the FDA warning on Abilify http://www.fda.gov/medwatch/SAFETY/2004/abilify_pi.pdf abilify is most often used in schizophrenia some people I have heard find it very helpful for tics and others have had more problems with it, beyond the usual side effects, they have had neuropsychiatric effects The old database at BT crashed in 2006 so I dont have access to all that archived info anymore):

my son really appreciates the Natural Candy Store , as they have natural gummi bears, the one thing he has really missed since going "artificial additive free" 18yo but still a gummi lover! they started the site due to the overwhelming response to the few natural things they carried on their sister site and have a varied large selection, which is why we like them too.

hi we gave 500mg per day along with the magnesium supp and had very positive results

Hi Jasminky people with OCD usually are deficient in serotonin one of the safest ways to elevate serotonin is with INOSITOL, a B vitamin, available from most health stores stronger natural ways are with either 5HTP (5 hydroxytryptophan) or pure tryptophan. Different people react differently to these and so if you do try either of them, start at lowest dose to check and do NOT use together...it is either/or methionine is excellent too for OCD (samE being a more expensive but very good form of it) melatonin, used by some for sleep, is also helpful in the serotonin system no one on SSRI should ever take additional serotonin boosters as this can lead to serotonin syndrome, which is dangerous sorry to be so brief as I dont have much time this morning, but maybe check those out with your doc

I know that Sheila also posted the FDA warning on Abilify here at one time but not too sure where it is now I have heard very mixed reports on this drug, with cons outweighing pros, especially in children

another place that has relatively "safe" candy is The Natural Candy Store http://www.naturalcandystore.com/

hello yes, die off of candida releases toxins which in turn can trigger tics etc, especially in those whose systems are already sensitive and compromised, as your dd's possibly was after the vaccine I know many have used nystatin with much success, but it was actually something our physician would not rx preferring to use the diet and capryllate over a number of months to slowly but steadily control the yeast overgrowth. Since then, NOW products have come out with CANDIDA CLEAR, which I personally feel is an excellent yeast buster because of the blend of substances in it I know that Kim and others who are very up on vaccination effects will likely have more input on that for you, as well as the PANDAS parents here. Whenever there is a very sudden onset of tics, and intense waxing, there is often an identifiable trigger. Tics can wax and wane, but the very dramatic changes are usually indicative of an illness, infection, or toxic/allergic trigger do you have any family history of tics or Tourette? also Jules, have you tried Epsom Salt baths to relax and help with the detox? I know your daughter is still very young, but if you have access to a pediatric acupuncture facility and she is willing, that can help so very much with the fallout from the die off etc I do hope your dd will stabilize again quickly. I know all too well how scary these severe waxing times can be.

thanks Carole an interesting thing today is that my husband remembered today while talking to a doctor that he had been told by his mom that as a child of around 3 yrs old, he apparently nearly died from a severe strep infection with raging fever as a child (he is in his mid 60s now) He also has TS/OCD and the other issues that come with the spectrum that my son seems to have inherited. My husband's OCD,anxiety,ADD etc has always bothered him far more than his TS tics

we had a recent discussion on this too http://www.latitudes.org/forums/index.php?showtopic=3078

Jasminky when my son's OCD was at its worst, his focus was very much on "my mind told me to" it became even worse when he was on meds (luvox) for OCD once we started him on his supplements and began to boost his serotonin levels, that aspect of his OCD stabilized, altho we still see OCD up when either illness or some other trigger (artificial food stuff!!!!) enters in and yes, altho my son was not PANDAS, there is a very clear link to these kinds of sudden intense OCDs and strep

Hi Mary IMO, the two best natural remedies for H pylori are gum mastica and dgl-liquorice root. the former eradicates the bacteria and the latter heals the ulcerated areas of the GIT lining (MUST be the DGL for tho, not the regular) both are available at The Vitamin Shoppe stores or website

bumping up for newcomers

another bump up for newbies asking about tests

thanks Kelly also that link above is to a site Consumers SEARCH reports sponsored by shopping.com and so there is vested interest in promoting some products over others. I think, based on the reply that Kelly has posted from the makers of Gummy Vites, I am going to edit the title some if you dont mind Jasminky, so this doesnt help perpetuate the rumor for this company

((((((((ilovedogs)))))))) I think we can all identify with having felt that way the only way we were able to correctly implement the dietary and supplement modifications we made was a step at a time when I first started out on the nutritional/supplemental plan, I was so eager to "fix" things that I sometimes pushed to hard and did have my son become resistant to the changes when he wasnt seeing the benefits. it wasnt till we started just gradually adding and removing and keeping the journal on what helped and what made things worse that a pattern emerged if there are still artificial sweeteners, dyes and many of the other chemical additives in your child's food, then you are likely going to see mixed results nomatter what you try ...... those triggers work against the good stuff, as does an underlying issue like candida and other GIT problems, PANDAS or other infection/autoimmune issues etc we found things began to fall into place once we had done our best to minimize the triggers. That was when we saw the marked and improvement

Hi Caryn Vanillin has been on our "list" for some time as it is also a bowel irritant, and triggers Crohn's flareups for my son

thanks for posting that Jasminky.

Hi Mom23 i am not a PANDAS mom, but my son has inherited Tourette Syndrome and OCD etc. supression is common in kids with a range of neuro issues where they seem to keep the lid on in other company but release when with family or other trusted people, with family often an explosive release. altho again not related to PANDAS, but to TS, Dr Dunc over at Life's A Twitch has done seminars etc on how extended periods of suppression really can cause a waxing. I see in my son and others with tics, that when supressing those for too long, it is almost like stoppering something that is overfilled, a new avenue to release opens, and *other* issues start to wax, like the OCD, or hyper stuff, or mood issues , sensitivities etc etc Here is Duncan McKinley's site Life's A Twitch http://www.lifesatwitch.com (small caution...my son easily "picks up" others' tics, and so never visits the tic gallery there )

Hi Caryn that link is fine here the more we can network and co-ordinate here, the more people find clues and the more kids are helped.

hi sorry no replies yet....our Tourette Forum here is very active whereas this on for LD has always been slow you may want to ask this on the TS board as well I am in Florida so cant really answer anything related to the Michigan school system here is the link to our Tourette Forum http://www.latitudes.org/forums/index.php?showforum=1

Hi Judy penicillin WOULD reduce a tic *if* the tic was being caused by a microbe such as strep (not just strep throat) THAT is what PANDAS is......Pediatric Autoimmune Neurological Disorders Associated with Streptococcus one of the clearest indications that a tic is being induced by a microbe is the improvement with an antibiotic and 80% of tics are sure *not* genetic...not sure who told you that but the people on just this forum alone can attest to that. A high % of TOURETTE tics are genetic, but a large number of kids are diagnosed with Tourette when in fact their tics are being caused by other factors, which we discuss in detail on this forum, and where a large % are linked to nutritional deficiencies and allergies and GIT problems, and many to PANDAS where penicillin can help in PANDAS, there seems to be a better response with zithromax (azithromycin)