Chemar

wonder how those "HFCS isnt bad for you" commercial makers would try to spin this one!!!! Sugar: the bitter truth excellent discussion by Dr. Robert H Lustig UCSF School of Medicine

sorry I think we are likely talking different things. I thought you were asking if there was any research showing genetics involved in TS, not whether there is proof positive for a gene being identified ...no one has claimed that they already have mapped "the" gene(s) for TS, but from all the research being done, coupled with family history (like ours) they are already identifying gene markers etc I dont know if there will ever be found to be "a gene" for TS but rather that they will find many variable mutations, possibly some unique to specific families and possibly some crossover. But I have no doubt in my mind that in many cases, especially where there is clear family history, genetics is at the root of TS, with the "environmental factors" being the "trigger" for its manifestation

P.Mom did you read the link I just posted re 23 and me?

and here is the one I meant to link initially https://www.23andme.com/health/Tourettes-Syndrome/ sorry that is what I get for posting while working...mixed up bookmarks

sorry...I was busy with work so didnt add the other links here is current info from TSA showing there is much active research on mapping TS genes http://www.googlesyndicatedsearch.com/u/To...F%2Ftsa-usa.org I will also dig up the past threads from the TS forum with additional info

Hi and welcome yes, it does seem that for some kids, dental work can trigger tics. There are some dentists who believe that misalignment of the TMJ (trans mandibular joints) can trigger tics. Not sure if that may be what happens with spacers etc. My son tics with anything related to tooth stuff, but recent xrays suggested he does not have a problem with TMJ so it could be other aspects of dental/neuro stuff triggering some re the TV, videogames etc...some kids have extreme photosensitive issues and so for them this can be a problem. I personally do not see the need to remove these if you are not noting a direct tic triggering effect from them. We did find for my son it was more the flashing that was a problem, and we found it better to keep a daylight lamp on when he is using computer/TV/game systems as that reduces the flash effect. Also it seems that LCD screens have less of a triggering effect than CRT and with stress, yes, it seems to be a big trigger for tics had your son had any vaccinations prior to the tic onset? any infections, eg strep?

I know there is more recent work published, but here is one I have bookmarked on the identification of a gene mutation in at least some cases of TS. I will add links as I find the others http://www.ninds.nih.gov/news_and_events/n...gene_121505.htm

abbe, what happens when you call the phone number on their website?

I know many members here usually only read the PANDAS forum, but the TS/tics forum is filled with anecdotal evidence that verifies that, altho the genetics are likely a big part of Tourette Syndrome, it is the environment, both internal and external and yes, what gets put into the inside from the outside, that seems to determine who manifests the TS symptoms and how they manifest We have learned such a lot since we started keeping that journal years ago to document what triggers my son's tics, OCD, Crohn's and other stuff (remember he has the whole caboodle of disorders in the TS spectrum ) there are a lot of question marks tho for me...like why did my younger son manifest all this, and older one not. Older one appears to have no neuro or health problems...younger one has a loooong list of them! The problem with the other DrT is that he has just likely never really looked into the very clear evidence that there is more to TS than just the switching on of a gene, or genes. I encountered that with so many physicians, and even other people with TS, that it doesnt even surprise me anymore personally, where I have no doubt about the infection connection in many many cases of TS, yet there are also other things that seem to flip that switch, or cause the immune system to go "wrong". It really has been an amazing thing to watch people pass thru the TS/tics forum here and see how things resolve for their kids once they get to the root of things. The diversity is astonishing. It has left me very open minded.

just before folks get upset....the OP specifically said this was a DIFFERENT DrT who commented on that article! re his comments.....all I can say is phooey to those who let their ignorance, and stubborn refusal to look beyond their prejudice, stand in the way of progress toward healing and Fixit every time a doctor tells you there is "no hope in sight" for those with a TS diagnosis...look 'em in the eye and say "meet Chemar's son!"

excellent! thanks Caryn

I havent ever heard of them Abbe how did you find them? did you have to pay a lot up front?

not sure who the "self proclaimed experts" are that you are referring to but that comment sounds a bit like the "expert" tourette syndrome doctors who told me my son would never be ok if I didnt give him the strong antipsychotic drugs and SSRIs for his TS/OCD and let's not forget that ACN/Latitudes has always been about promoting alternative and complementary treatments thank goodness for that, and that I found latitudes magazine and then these forums, or my son would likely still have been in crisis! I found the stepping stones here to help bring about meaningful change in his condition, with the help of remarkable physicians who were open minded to the incredible healing that many alternative and complementary treatments can bring about that obviously doesnt negate the essential role of antibiotics and other medications, and that we all agree they are often urgently needed in crisis situations, and save lives literally and figuratively, nor of how important they are for those dealing with PANDAS....... but still, that remark was a bit insensitive considering the purpose of ACN/Latitudes IMHO and especially too as the forums here have always been about members sharing their experiences, information and support for one another, not "experts"

Hi if there is candida "yeast" in the gut, things like diflucan and probiotics cause it to die. This results in toxins produced by the dying fungus and so often things get worse before they get better. it is known as the "die off reaction". my son has never reacted well to commercial probiotics and so we have always only used natural organic kefir or Stoneyfield farms yoghurt as our probiotics.

Hi Lorie good to see you again tho sorry it is for this reason! and yup, we learned the hard way that even a tiny slip in my son consuming the things that are bad for him can result in a BIG increase in his symptoms I really do wonder if many of our kids have Multiple Chemical Sensitivity (MCS) from all the chemicals they get exposed to from birth. We know my son has it and I think that is why he is so highly reactive to the garbage they add to processed and packaged foods hope you are doing some detoxing with the epsom salts baths to help get the yuck out of his system

I hope the treatment will work well then

madhu does your child have tics only related to the PANDAS infection(s)? or is there a chance that he has Tourette Syndrome? if he may have TS, do be careful about doing steroids as that can cause a spike in tics for people who have TS because of the effect on dopamine by the steroids just a caution I always put out as altho I know how very beneficial the steroids have been for many PANDAS kids, the TS alert does need to be mentioned just in case

Hi Fiona and welcome there is a member here Jewels who is also from the UK she has been working with a DAN doctor over there who is open minded to PANDAS I havent seen her for a few days, but maybe try messaging her directly too hope you find the answers you need to get your little one better

oh believe me I know that trying to keep videogames from a 12 yo is like punishing them! that is why we got the daylight lamps. It seemed for my son it is the flashing of the light that causes the probs, and so by keeping the daylight lamp on while he uses the screens, it seems to prevent the impact on his tics The LCD vs CRT screens really makes a difference too

Hi Michael. I have heard of this associated with antibiotic use as well as candida. White and green probably related to good bacteria death from the antibiotic? do you have kefir or yoghurt as a probiotic or even some coconut oil? maybe try swishing some of those in your mouth and see if it improves? it worked for me after I once had clindamycin and got furry tongue

Hi yes, some of my son's first notable tics were eye rolling and blinking when he was 4yo the eye doctors said it was because of his myopia/astigmatizm and things did settle some after he got prescription glasses...but then they returned when he had his dramatic onset of genetic Tourette Syndrome around 10yo TV, movies, computer screens that are not LCD and in darkened rooms, fluorescent lights and any strobe type effects set his tics off. We use daylight lamps and LCD screen TV and computers only and he knows that if he goes to the movies, tics will follow! he is 20yo now so it is his choice.we have found that the extra magnesium, a good pure multivitamin, high in the B's and epsom salts soaks in a tub, does help him whenever he has any kind of tic increase If you do a search here under the user name Claire for the word screens, you will find lots of her information on how her son being photosensitive was the main cause of his tics .

wornoutmom, also do remember when doing your research, that where PANDAS is the acronym specifically designed for strep induced autoimmune neuro issues, the term PITAND covers the other microbial infections that can bring about similar symptoms PANDAS= Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus PITAND = Paediatric Infection-triggered Autoimmune Neuropsychiatric Disorders more background info on the terminology from dr K's website http://www.webpediatrics.com/pandas.html

lele we used the NOW brand of L-carnitine at 500 mg daily but my son was 12yo and adult weight then usually it is recommended to give half the adult dose of any supplement to a child under 12 and over 6

the Tourette Syndrome Association does have some easy to understand booklets and videos to help yourng kids understand TS http://www.tsa-usa.org I dont agree with their emphasis on "medications are the only treatment" but the educational booklets, pamphlets and videos they put out to help with understanding are helpful

no Lele....IMHO that doctor is not correct in saying that. the severity of TS depends on the impact it has on normal functioning and whether the tics cause injury etc having vocals at the same time as motor tics can also occur in those who have mild TS