Chemar

welcome Nicola many children do have transient childhood tics which seem to resolve without intervention. And in most cases this is not Tourette related. the combination of illness and the tic is however something to look at more closely, especially with the growing evidence for microbe indiced tics (commonly known as PANDAS when strep induced, and PITANDS when related to other microbes) there are so many other things that can cause these tics....like reactivity to artifical dyes and sweeteners etc in foods (which most of our kids seem to have), and actual food allergies like gluten or dairy, to photosensitivity where flicker from TV or computer can trigger tics and also the growing evidence of harm from mercury and heavy metals, childhood vaccines and so much more we have a thread here on some basic info that may be helpful for you as you begin looking into all this http://www.latitudes.org/forums/index.php?showtopic=2459 on one of the posts there you will also find the link to an article on Finding Triggers for Tics hope you find answers and effective treatments. it can all seem very overwhelming at first, so do just take it a step at a time while you go thru all the info

good video! thanks Caryn and Calicat I saw what Luvox did to my son ): We were so worried about him and the haldol was causing him severely bad symptoms, both physically and in his psyche, but the neuro and the psych insisted only an SSRI would correct his need for more serotonin and he had just been in hospital after a severely injurious tic/OCD blend......... anyway, long story short. the luvox hurt him real bad. robbed him of his personality and made him a large zombie. he lost all interest in the art and the music he loves. Could no longer handle the gymnastics he loved. and his bright sharp sense of humor was dulled away. plus it didnt help the OCD problem, if anything.....the interaction between the tics and OCD got way worse! and all his docs then wanted to do was give him additional drugs to take away the symptoms of the side effects of the other drugs .....ugh...I dont even want to remember it all..... so anyway, yes, for our family SSRIs did not help son or hubby yet, I also know some people who feel SSRIs have given them a "new lease on life" so again my conclusion that one needs to be informed beyond the label on the bottle and if trying something, go slow and carefully and dont overlook side effects...investigate anything different before it becomes harmful. thanks again for making that available Caryn and Calicat

btw CP, I am not sure if you read on Judy's thread where we were talking re natural antibiotics, but I do know for sure that my son does better overall with various "natural" antibiotics, I guess "prophylactically" as we do on/off periods with various ones.... and when he keeps his immune system well *modulated* rather than just boosted, he seems to do best. (for my son, because he has an autoimmune disorder, Crohn's Disease,...as PANDAS also is....... we do *not* want to boost his immunity beyond what his autoimmune illness can handle, while at the same time needing to have a healthy immune system) He was on a series of 3 antibodies, including zithromax, for the first 3 mths after his Crohn's dx and honestly, apart from that first Z pac, all the others made him feel yuck digestively and in his opinion it made his tics wax. He was in severe pain too and fatiqued from the Crohn's at that time and so that obviously played a part. But since cycling him through monolaurin, olive leaf extract and the Candida Clear (which has as one of its ingredients, oregano oil, reputed to be a powerful herbal microbiocidal and anti-parasitic) he is really doing well These, along with the essential nutritional modifications to his diet, and using more garlic, turmeric, ginger etc in cooking seem to be a very big plus in his overall wellbeing, which in turn always seems to keep his tics at minimal level. Now whether these "natural antibiotics" are actually *directly* helping something neurologically for him too.....very probable, just as they are likely also helping his immune system somehow. He really is overall healthy, doesnt get colds/flu etc, which is always a risk with some of the standard immuno suppresive drugs used for autoimmune illnesses. he is 18yo now and very much in charge of his own supplement plan, which he has worked out from what I first put together for him for the TS/OCD/ADD and mood stuff, and now has his own plan to balance the fact that he also has Crohn's anyway, I am rambling again.......... this really is such an interesting thread! thanks for starting it CP

hi Judy when my son's tics and OCD suddenly manifested so severely, I didnt know about forums etc and I went thru agonizing days and nights alone and very afraid. Finding these self help support groups was more valuable to me than I can ever describe, and that's the whole reason I stay part of them...to pass forward what we received re the clonidine aka catapres it is mainly used to treat high blood pressure but also rx for tics. I have personally seen it make someone very psychotic, with out of control rages, brooding, paranoia, hyperactivity, impaired functioning etc etc. Those symptoms stopped after the med was withdrawn. I've heard from others about these side effects too. yet many doc's do seem to rx it for kids with tics. I also know that for some people it seems to be very helpful and they dont suffer any serious side effects beyond the common ones of fatigue, dry, burning mouth, dizziness, digestive changes etc. So I am sure not saying it is wrong to give it...rather just suggesting to be watchful if you notice side effects that are of concern, do discuss it with the doctor immediately. Also, do NOT just stop giving it to him. It is one of the drugs that has to be withdrawn slowly, being reduced in dose gradually otherwise withdraw side effects can occur I hope the Epsom bath calmed the lil guy and that he got good sleep...and you too Judy.

oh that's ok Michele...I dont mind the info being passed along. I do just obviously have to be very careful that my sharing of what we experience and discover is never interpreted as "medical advice" hence the need to add lil disclaimers every now and then I think monolaurin really is an excellent supplement, especially as research seems to indicate it is truly microbiocidal....acting against a whole range from viruses to bacteria and fungi. I see to recall it was Giselle who first mentioned it here (miss you Giselle and hope you and Hoyt are doing well ) there are other natural antibiotics too....garlic being a real easy one to incorporate in the diet, as is honey. when my son had epstein barr many years ago, we also learned of the benefits of olive leaf extract we were told to treat these with care tho, remembering not to overuse them as one doesnt want tolerance to develop. I am not sure what the protocol would be for prophylactic use, but we were told 10 days on 10 days off for my son when actively treating infection. hope everyone has a great weekend

Hi Emma mainly because of my son having such sensitivity to meds and supps a little has a large effect on him and so we always start everything at minimum dose and slowly work up if needed After introducing the Inositol at 500mg per day, we also added 50mg per day 5HTP, which also boosts serotonin, so needed extra caution not to cause serotonin spiking the combination of the two seemed to work really well for my son and so we never went higher on either he no longer takes 5HTP bit does still take his 500mg Inositol each day

found it http://neurotalk.psychcentral.com/showthread.php?t=17486 hope that helps Carole

found this one http://www.latitudes.org/forums/index.php?showtopic=2923 gonna go check on NT as well Carole as I think there was more there

Hi Carole we were advised to give no more than 500mg per day of Inositol to help my son's OCD I think we have a thread here somewhere with reply from mrsD that this can safely be given at higher doses I will do a quick search to see if I can find it for you

just wanted to post a very clear disclaimer here...I am *not* a medical doctor and so I do try to always qualify that. I post on *our* experience, not to recommend or advise what others should do I would never advise anyone to take my posting on what I have learned from helping my son to mean that they should not follow their own doctor's recommendations. Quite the opposite. I try to always urge that people work with a qualified professional. we use monolaurin as a natural antibiotic, but I am not suggesting that someone with a PANDAS dx should not take the antibiotics recommended by their physician, and rather use monolaurin! I know you werent suggesting that Michele but just need to be sure that everyone understands that:)

grandpa with TS was a writer..plays and short stories. also wrote for radio and TV hubby is a mathematical whiz...amazes me what he can do in his head! He is artistic too TS son is, if I may brag a "brilliant mind" he has an asonishing spongelike ability to accumulate info and output it so accurately. excellent debater very talented musically, and as a writer and in drawing and other art stuff..... and oh my....what a sense of humor, which he has had from a VERY young age. I have long felt that stopped him from slipping into total despair when things were so very bad for him when he was younger he would sometimes do things that terrified me..............very agile and seemingly fearless and yup, CP, he would ride his lil pedal car full speed down the pool slide and do acrobatics on his bunk beds that would make a monkey envious .....and Faith...he would been right there cheering the lil lampshade hatted one along in the wiggle dance

Hi Kelly my son's explosive burst of symptoms around 10yo was about a year before my older son got strep throat and we honestly didnt notice any waxing in younger son with that. I recall being amazed that he did not get strep too. But his tics were in such constant wax mode at the time that i likely wouldnt have noticed them kickin up any notches TS son went for his testing at Shands about 6 months after oldest had strep At the time we were at Shands, my son was still on the medications, and it was one of the associates there who helped me wean him off them and also taught us a lot re OCD/tic interactions etc. He was great and the only reason we stopped seeing him was he moved abroad. BIG loss! to answer your other question, my son's symptoms were worse when he was at Shands than they had been at the time of the explosive "onset", attributed to the fact that things had worsened due to the severe side effects of the drugs, especially related to his OCD so nope ...doesnt look like any PANDAS in my TS son tho PITANDS concept a real possibility..especially now that we know he also has Crohn's..............now my hubby, based on the memory re his childhood severe strep, may well have had what we now call PANDAS. His family are all deceased, so I dont have anyone to ask for more details, but my husband knows he had tics and OCD from very early childhood

hi lurker I noticed you had asked as far as we know, and backed by the strep antibody testing we had done at Shands, my son with TS has never had strep, and we also did not notice any waxing of younger son's symptoms when our older son had strep throat. however I have confirmed many times that any illness has always been a major tic/OCD trigger for my son, once of the reasons we have such a delicate balancing act at present with him having the Crohn's coupled with his TS...the one can set the other off very easily and so he does take extra special care to try to keep both stabilized ((((((((Kelly and Caryn)))))))))) message boards so often lead to misunderstandings. sometimes our written words just dont convey our meaning, sentiments or good intentions etc well and we are all sometimes stressed out with all we deal with and that adds to our interpretation of posts sometimes luv ya both

I think the real important thing to always recognise here is that we are very much a diverse group... some of us are families where the gentic ancestry is so clearly visible to us in our children, spouses, ourselves in many cases, and our relatives, yet we know too that other factors, from candida and strep and other microbes all the way to allergies and intolerances and deficiencies and sensitivities, and the vaccines in their concentrations and variations over the years ...all these things play a *major* role in onset or aggravation of neurological conditions like tics and Tourettes so to me there really isnt anything to "disagree" with. ... we are a very diverse group brought together by a number of common denominators, primarily tics. For some of us there is a genetic predisosition already passed along, initiated by who knows what way back when. For others , they are seeing immediate results of something causing harm, whether the vaccines or the strep or candida or gluten or whatever. For some of those, hey, there might be gene stuff involved as well, and for others, maybe initially "perfectly healthy" and then harmed by something. By discussing the genetic factors I sure am not trying to discount the many other reasons for the high numbers of kids who seem to be having neurological problems. More just drawing from what we are learning in our own familial histories, and how that may have impacted our relatives. anyway...just wanted to be sure I wasnt being misunderstood for my chatting about our strong genetic "evidence" for my family's Tourette Syndrome Spectrum of disorders. I certainly am by no means trying to suggest that it is "all in the genes"....and those who know our story, know that so many of the things that we discuss here, including vaccines, are things that I firmly believe played a huge part in my sons dramatic onset of his spectrum of disorders, even tho we have known since birth that he had developmental and neurological things going on, something not seen in his older brother. I fully agree and always have, that there is an alarming rise in kids who are exhibiting neurological problems and I do believe that food and nutritional deficiences, and vaccines and bacteria and viruses and fungi etc, and environmental toxins, and a whole heap more things are at the root of this explosion in tics, autism and other childhood disorders. I also think they are responsible for many adult illnesses.............but that is a whole new topic( and one of my pet peeves re docs who discount Candida ) ok off my soapbox

swollen lymph nodes can also be a sign of Epstein Barr infection (mononucleosis aka glandular fever)

Hi we had much success with L carnitine for vocal tics do be careful of clonidine. I have recent experience of someone becoming severely psychotic on it. sorry to be so brief but gotta run all the best Cheri

Hi friend and what a good friend you are to care this much. I would suggest giving her a link to our forum and the two of you learning more about PANDAS together and so you being able to support her from a real position of understanding honestly, altho my son is not PANDAS but does have Tourette Syndrome plus other stuff, when my son was first dx I went thru what I know now are the stages of grieving. So dont be surprised if your friend shows many different emotions as she comes to terms with the challenges of living with neurological and autoimmune illness. just you "being there" for her...just to listen and let her release...will be a real blessing to her often what we need isnt just answers or advice....it is just to be able to be honest in how we are feeling. Having a caring friend, or a support group like this, really really helps look forward to getting to know you...and hopefully your friend too

welp I just saw this on the health news headlines forum at NeuroTalk so scooted over here to link it for everyone......... deals with depression, but the overall topic is relevant to this discussion too! http://psychcentral.com/news/2008/03/13/th...rders/2038.html

hi Mary yes, my son had the lip licking tic as well sometimes "nervous habits" (for want of a better word) can also be indicative of emotional issues rather than neurological ones so yes, an evaluation by a pediatric psychologist would possibly be insightful in helping the little one

Hi Ruby I am not sure I fully understand what you are disagreeing with? In my family we are now pretty sure of 3rd generation Tourette Syndrome.....possibly more as I gather anecdotal information deeeper in ancestry....but my youngest son, husband and his father in turn all exhibit Tourette Syndrome Spectrum Disorder My oldest son had the same vaccines and was exposed to the same environment as my younger, yet oldest son does NOT have TS etc (oldest is 21yo and youngest is 18yo and hubby is mid sixties, grandpa was in his 80s when he died) it seems pretty clear to me that we are looking at genetically inherited TS in our family, albeit that the manifestation of the syndrome has no doubt been affected by many things just the difference between my two sons, both exposed to the same stuff all these years, is pretty clear evidence to me on the genetic predisposition issue. that is not discounting the effect of the heavy metals etc etc etc.......but nothing other than genetics explains our family history of Tourette Syndrome Spectrum Disorder that does not mean I feel ALL tics are genetic. But in our case, genetics is core...of that I have absolutely no doubt

Hi Michele the thing is that for many people who have a Tourette dx, *ALL* they have is tics. Maybe lotsa tics, maybe just a few. others with TS dx seem to have more of the spectrum that often accompanies it...the ADD, SID, OCD etc etc Tourette is actually medically known as Tourette's Disorder.....tho the SYNDROME part is now more used. From what I have gathered, PANDAS kids seem to exhibit more of the OCD and other aspects and not all have tics, tho many do (I think I am right on that?) again just more pieces in the puzzle..... and leaves me wondering if multiple microbes trigger different aspects depending again on the genetic prediposition coupled with the individual's immune history of illness, infection, toxin exposure, vaccines, allergies etc etc etc

Hi Kelly yes, I just kept nodding my head reading what you had written I am beginning to be very convinced on the immune/infection aspect of a lot of genetic illness, along with this revelation into my husband's possible PANDAS history. apparantly as a very young child he nearly died from the fever associated with his strep This would have been circa 1948-9 maybe, and he recalled this just the other day, how his mom told him his grandmother, so afraid the fever would kill him, had dunked him in a tub of ice! My husband has a lot of neurological problems which we see in our youngest son (our oldest does not have anything beyond the mild OCD, which I have some of too ) My husband has also had GIT probs most of his life. anyway, since my son's dx with Crohn's, which is autoimmune, I have been more and more wondering about the possible involvement of a microbe in his sudden onset of severe symptoms (tics, OCD, depression, anxiety, paranoia, phobia...they all happened literally overnight around his 10th birthday...tho he has had other neuro things since birth...we just didnt recognize the eye rolling and the noises and some behaviors as TS then.... and neither did his pediatrician nor eye doc ) but anyway, we went thru the whole testing for strep antibodies/PANDAS at Shands, but my son showed no elevations and as far as we know has never had strep, tho his older brother did have a mild strep throat once,after youngest's onset of tics etc. I have read enough now to feel that maybe my son may have had (?have) mycoplasma p. infection. We know from previous testing that he had Epstein Barr at one time, tho he never developed mononucleosis. My son is going thru a "no blood tests please" phase, OCD related re the metal/needle thing, and so I havent been able to request a mycoplasma analysis yet for him. but anyway....I am rambling on our hisotry when I wanted to say thanks to CP for posting that, as it helps add more pieces of the puzzle when we get these familial histories documented.

wow that is great news Jewels Candida eradication was a big plus in my son's overall health improvement and for the rest of our family too. Although it isnt always the root cause of the tics, yet it so often is one of the major triggers for them please do keep us updated on his continued progress blessings Cheri

hello Judy tho I am sorry you are having to deal with PANDAS, yet at least having an accurate dx means proper treatment I thought long and hard before posting this reply, but I do want to just sound a note of caution re clonidine...please be very very watchful for side effects from this drug. I hope your little one will not exhibit these, but I have personal experience of someone becoming severely psychotic on clonidine, a reaction that immediately stopped once the clonidine was withdrawn. This is not in any way suggesting that this will happen for your grandson....but I feel I would be wrong not to mention it as an FYI My own son had bad reactions to haldol/luvox/zyprexa, and I sure wish I had known before about the very real potential for these, as I would have been more watchful, and would also have recognized the side effects more clearly when the docs that were then treating him attributed them to his condition, and never once mentioned that it could be the meds themselves causing the problems. Even the documented side effects sometimes dont give an accurate warning IMHO I hope your lil guy just keeps getting better and better and that he will have only good responses to the treatment all the best Cheri

helpful info from Caryn on wheat/gluten intolerance and tics http://www.latitudes.org/forums/index.php?showtopic=2779