Chemar

just adding a PS here there are other kinds of physicians, apart from just the DAN doctors, who can be helpful in guiding one on these tests and also on treatments. We have had success with Integrative Doctors as well as D.O.s., and I know that Environmental Doctors, Naturopathic doctors etc etc can be very knowledgable in these areas. and frankly our acupuncture therapist as well as our chiropractor are more clued up on alternative/complimentary and nutritional medicine than many physicians we encountered on this journey. I have to say that at the end of it all we have really taken charge of our own healthcare as a family, and have worked to find health care professionals who will GUIDE us, and help us implement things we have learned of that they agree sound beneficial and safe, rather than to rely on doctors for the whole. just my opinion that when we try to do it alone, without some form of heathcare professional guidance, we can tend to run in a zillion directions and not get anywhere but frustrated. It sure happened to me when I first started researching ways to help my son. finding a caring and clued up physician, or other person qualified in relevant healthcare, just relieves so much of the stress and guesswork on what we hear and read of and are wanting to try but feel (correctly) cautious to give to a child without qualified guidance.

Hi loofagirl and welcome DAN stands for defeat Autism Now and refers to a group of physicians who are specialized in treatment protocols for autism many of these also treat TS/tics etc I have never been to a DAN doc and so cant comment personally. I have heard good and bad reports and, as with all physicians, I think it depends on the doctor Always a good idea to ask BEFORE making appt whether they have experience in the areas of concern to you and also ask UPFRONT about costs, as for some it can run waaaaaay high Most ( or at least many) conventional doctors dont have a clue when it comes to understanding the connections between tics and other factors like food allergy/sensitivity, environmental triggers, metals, infections etc and so they will usually act like it has no relevance........so one either has to push them to run specific tests or find a Doc who is clued up and will run the needed ones It's my personal opinion that chemical food additives are bad for everyone but are especially bad for kids with neurological issues(eg the MSG, food coloring/dyes, artificial sweeteners and flavors, high fructose corn syrup, chemical preservatives like sodium benzoate, thickening agents carageenan etc etc) specific allergy tests can show whether there is a need to avoid gluten and /or dairy products and other foods to which the person may be reactive. that is variable depending on the individual. some also try eliminating food groups one at a time to see if improvement occurs other tests are to check for heavy metals (especially mercury) as well as to test for candida albicans "yeast" overgrowth in the gut and , if suspected, to test for possible PANDAS/PITANDS from strep or other microbial infections maybe being the root cause of the tics. Pyroluria is a condition that can also lead to tic disorders and is an easy test to get done, even without a doctor's signature some of us have also had specific tests done to determine whether there are deficiencies in any vitamins, minerals, amino acids, neurotransmitters etc hope that helps I have probably forgotten some but those are the first that come to mind for me

hi Jenny the D.O stands for Doctor of Osteopathic medicine as opposed to M.D being a Doctor of Allopathic Medicine here is a bit more to explain http://www.askdrwalker.com/index/What_is_a...steopathic_.htm My son's current PCP is a D.O and he was on the insurance list, which I was soooo pleased to find They have a whole different outlook from MDs and many are really on the ball with alternative stuff

Hi we had blood tests for candida, and hair and urine testing for metals, and I seem to recall there also being a blood test they did for lead and mercury.

Jenny do you have any D.O physicians on your insurance. They are fully qualified medically yet have a more holistic view of things and think outside the textbook

Hi Michele I am by no means very knowledgable about GF as my son isnt gluten intolerant, but I would think if there is gluten reactivity or celiac then one needs to be off it permanently, and that a little can sometimes have a big reaction due to the sensitization? were you just trying GF? or due to testing? I know that with the artificial foods, which my son is reactive to, even a tiny bit can have a very dramatic negative impact so he is really rigid with what he eats and drinks

Hi Jenny she is still so young that it would be very hard IMO to clearly say it IS a tic. you could mention it to your doc, and also, if able, you could set up a cam corder to record her doing it without her being aware of it, and show that to the doc. only a professional observing could really be able to distinguish, and even then, in such a young child, it may be a difficult distinction to draw. at age 3 many kids do make a range of sounds and as Faith mentioned, may copy things that they hear on TV etc...the beep beep reminds me of the Roadrunner cartoons When my son was that young we simply didnt realise that many of the things we thought were "habits" or just kid stuff were in fact tics. So I am just giving our example, not saying your child IS ticcing I would just keep a record if you are able and wait and see how long before it passes.

Hi Carolyn I honestly cant remember whose posts were here in the past on how their child's tics so improved with anti histamines but I do recall the discussions. I am late starting work so admit I have only skimmed your post and not followed the links (so you may have already included the posts I refer to above) but good for you for doing all that research to try to add pieces to your child's specific puzzle and for sharing it. It may well be of so much help to others too. My son was initially misdiagnosed for what we now know were sniffing/throat clearing tics and was given an antihistamine inhaler. He had a BAD reaction to it, and we also were not able to give other anti-histamines as he seems reactive to them. yet he is HIGHLY sensitive to the chemical food additives, and does not tolerate some B vitamins well and especially cant take B-complex. Not sure what the biochemical answers would be to that, but just thought I would mention his situation

Hi Jenny i have the cutest mental picture of your little one "beep beeping" my son had similar vocal tics when he was younger, as well as other ritualized tics, which we were told were a combination of his TS tics and his OCD He also went thru a phase of having to report everything he did or said to me, and it was always preceeded with a very specific throat clearing tic...kinda of like an announcement. I would personally advise against asking her to stop it. IF it is a tic, that can escalate it, as she, even at this young age, tries to supress it, plus it would then become associated in her mind with something negative that displeases you, another thing to avoid if this is a tic. There is a lot of research and anecdotal evidence on tic supression and escalation of not only the tics, but of other issues like OCD, anxiety etc etc

Hi Kelly nope...no confusion bringing up something that important. I had not heard of the PANDAS/coprolalia connection, so really do appreciate you mentioning that. It is so important for us to have as much relevant info as possible. One of the reasons I pointed out the fact that TS is considered a syndrome is because the "nutshell" neurological model of a gene malfunctioning to cause a dopamine reactivity is, I sure dont think, the *only* factor involved in this disorder. Some people manifest TS as tics. period. Others have a whole group of disorders going along with it. My son (and husband, and grandpa) fall into the latter category. so I firmly believe that it isnt *just* the genetic switch on that causes TS to manifest. But I do believe the genetic predisposition *is* a major factor in it. Basically anything we "pass on" boils down to being genetically inherited, or when factors in the womb, and early neonatal period impact us...... that to me is involved primarily in much of this. But the inherited things come down to genetics in some way IMO, whether it be a specific gene or at a far deeper level in the genetic makeup we have since conception. I dont personally think it is just the hormonal and other inherent physiological makeup, that switches the gene on in susceptible individuals, but the additional "trigger" of something or group of things that in turn causes the gene to switch "on" and symptoms to manifest. These could be environmental, microbial/PANDAS/PITANDS/Candida,Mononucleosis(Epstein Barr virus),Mycoplasma pneumoniae(sp?)Lyme etc etc, stress, food and environmental allergy, chemical etc food additive reactivity, pyroluria, photosensitivity and a whole lot more. so back to the PANDAS cases displaying coprolalia and the complex tics more usually associated with TS. I know of many PANDAS cases were the child most certainly also has TS. Once again I would suggest that this is a combination of factors at work. Is it the strep bacterial infection that attacks the neurological and immune system so as to manifest with those symptoms, OR is it the predisposition genetically was in place that "switched on" the TS gene with resultant CO-existent symptoms of autoimmunity from the strep.......one can speculate so much and in all truth they havent even begin to truly scratch the surface in understanding it all the complexity of the many systems, genetic, neurological, sensory, immune, digestive, emotional etc can bring about so many variances in the symptom manifestations and response to treatments that it is way too much for even the "experts" to agree on the pieces of the puzzle......so it sure doesnt surprise me that a group like ours would see things in many different lights But, IMHO, the generational thing, the males more than the females and the commonalities found amongst TS individuals....to me that is clear genetics.....and the characteristics I see not only in my family members and those we know with TS, but also say at a TSA meeting etc.... I guess I just truly feel in our case, Tourette Syndrome is a clear dx, but i recognise it comeswith highly variable symptom manifestations, and that it is genetically inherited, again with so many variables in just *how it will manifest* ....again, with the emphasis on ALL of the above is *just my opinion* I do think this is a valuable discussion to have, and sure is in keeping with some of Calicat's original questions with (((Hugs))) all round. this really is a great group with a phenomenal accumulated knowledge and experience

Hi so sorry to hear what you are going through I would again like to recommend the forums at PsychCentral as being far better equipped to deal with psycotherapy than we are. They also have free live chat sessions with professionals who may be able to help http://forums.psychcentral.com/ hope things work out for you Chemar

welcome OCDinVA that is very interesting feedback! I am planning to have my son tested for mycoplasma when he next sees his D.O. as I strongly suspect this could be a link in his crohn's and sometimes bothersome OCD I know his OCD has always been more troubling to him that his TS tics, and if he infact has had mycoplasma infection, this could really be a key to understanding the progression to the Crohn's as well thanks again for posting and hope you will keep us updated on your child's condition and what has been prescribed for the myco bmom, I think they may be separate tests, but am not sure on that.

Hi Bowman amd welcome my son doesnt have any food allergies per se but does react very much to certain food additives. For him it is an almost instantaneous reaction with tics and OCD and a general agitated state occuring soon after the offending substance is ingested and it can last for days, depending on what it is. MSG, high fructose corn syrup and food dyes and aspartame are worst for him I am seeing more and more on reactivity to corn and even a suggestion that this may not be a corn allergy as such but rather a sensitivity to it caused by the extreme over exposure that most have to it as corn additives in some form or another seem to be in everything prepackages, canned or bottled these days stress is a very commonly reported tic trigger and we do have wealth of info compiled here by Claire (sure miss ya Claire ) on photosensitivity and tics

airbucket my son has hardly ever had any antibiotics but he tested very high for candida overgrowth before we began the more careful diet. Although over use of antibiotics is a major contributing factor in the infection with the candida "yeast" infection, yet, as Caryn mentioned, dietary allergies can be a major factor in promoting the GIT environment that this parasitic infection thrives in, as can a diet that is unbalanced or high in sugars/carbs etc and low in other nutrients. And our modern diets of fast, preserved. refined and additive overloaded foods are a feast for candida. also some people may be more susceptible to the yeast overgrowth becasue of factors in their own metabolism/digestion a really good book on the subject is "the Yeast Syndrome" by Morton Walker and John Trowbridge http://www.amazon.com/Yeast-Syndrome-Ident...s/dp/0553277510 in addition to explaining how we get candida overgrowth and what illnesses it can promote, it also has an excellent treatment protocol and recipes to make it easier to implement the diet and treatments to help bring the yeast infection under control We were advised against use of Nystatin altho I do know it is prescribed by many good docs. Instead we used capryllic acid (caprylate by solaray) with the suggested diet and with probiotics from kefir and pure natural yoghurt (homemade or stoneyfield farms) I then found Candida Clear by NOW, and feel it to be an excellent product that seems to work very quickly. I know many also feel Threelac is a very good candida buster SO glad you are seeing a good response to the inositol which by the way, we found to be the most consistently able to mute that "edge" that OCD/anxiety/etc can produce

thanks so much for posting that airbucket as it exemplifies the many PMs and emails I get I do want to say sorry for getting miffed earlier. It isnt in my nature to be that reactive, but I have been feeling for some time that sometimes voices of baffled parents are being drowned out by us all talking at the same time, and so a parent asking for basic advice for what they know to be TS waxing will sometimes leave because of the very points posted above, and are also bewildered by the sheer volume of info they are presented withhere I meant it the other day when I said this board has evolved into a knowledge base that is so up to date on so many things that I often dont have a clue about some of what is posted...and that is somthing I highly commend! so please all, understand I would never want to quench that. But in sharing and discussing I would just always urge a sensitivity to others. We share a commonality here of tics, but from that point outward it is a very wide variance of symptoms, root causes, and treatments that prove effective relevant to the *specific* individual. anyway, I hope my outburst may have at least shed some light on what many of us here representing TS patients feel about the negative vibe sometimes expressed about the "label" This is a wonderfully supportive board, and is rather unique in having very little to no discord ever. I appreciate the encouraging words to me, and would in turn like to extend them to all of you, especially to any who may have felt singled out by my previous post. My sentiments are honestly as I expressed them, but they were more a generalization of feeling rather than a personal one toward anyone, especially you Faith. Just as has been pointed out in other posts, everyone here has something to contribute, even those who only have questions rather than answers, and it is that which makes this board thrive. with appreciation to all for the understanding shown to my above posts. thanks and again an apology for the reactivity. ps Calicat, hope you have found some answers as this thread has sure rambled

Faith and Tracey if you go back and read what I said you will see i emphatically said that I would encourage all to question being given a TS dx and to do everything they could to eliminate other possible causes AS WELL AS to implement all the tests and treatments discussed here as relevant to their situation gosh, if I didnt feel the eliminations and additions etc that we have used for my son helped him, why on earth would I be freely volunteering my time here to try to help Faith, I honestly think you missed my entire point.....if my husband and his dad didnt clearly have TS then yes, of course I would have questioned my son's dx a lot more and yes, of course I feel the variables discussed here still apply to my son...again, why would I be here sharing the treatments that have helped him and advocating for these tests and treatments if they had not and yes, it does have to start somewhere.......just like familial diabetes and familial breast cancer and all the other genetically inherited diseases do But we dont tell someone who has diabetis inherited that they should throw out their "label"...........so why is it necessary for those with inherited TS to have to hide their "label" I just frankly find it somewhat insulting to those who DO have genetic TS to have it continuously referred to as this dreadful "lurking" disease and "label" that somehow should not be mentioned, as if their having that "label" is somehow making them "doomed" and so when I see the validity of the dx being negated in that way, yes, it irks me, not just for myself, but also for the many represented here who do have TS, and who PM and email me frequently because they feel they have failed because their children are still ticcing even after they have implemented much of what works for many of us here. The last thing I want to see here is that we become so obsessed with finding a trigger behind every tic and feel we have failed if the tics dont stop totally, especially for those with inherited TS, where try as we may, we sometimes do NOT have control over the waxing cycles I have said it before and will say it again for clarity....my son used to have VERY VERY VERY severe Tourette Syndrome and OCD, to the point where it caused him to suffer serious injuries from his tics, necessitating hospitalization. Implementing the treatments that I have documented here, which were inspired by Bonnie Grimaldi's plan for her child and refined with help from our physicians, helped him get his life back as it dramatically reduced the intensity and frequency of his waxing phases for both the TS and the OCD. But he still has tics and he still gets OCD flares. Sometimes we can clearly define a trigger (eg hidden MSG or other food additive, moon phases, illness etc) but other times we are doing EVERYTHING right and even implementing more to be extra careful, yet the waxing comes, albeit NEVER as badly as it was in those early days before we began the careful diet,supplements and other eliminations and treatments that have helped him *sigh* I really feel I am not being heard here for what I am saying and that my words are being picked apart out of context so maybe I will just excuse myself for a while so as not to have to mention the dreaded Tourette Syndrome label that seems to have some so upset

Hi Tracey I havent heard of that form of magnesium, but sure would be interested to hear what results you get 300-400mg of magnesium per day is an acceptable amount, but of course that depends on the age and weight too.

Hi Kylie just wanted to welcome you and encourage you to keep doing the good stuff you have already implemented. Its the steady perseverance that brings the most consistently good results. I have a friend on another board, Lara, who is from OZ and will ask her if she knows of any docs in your area. I know that with TS, tics and obsessions/compulsions can freqently overlap and so yes, the yawn/sniff tic may well be a compulsion triggered tic , or a tic triggered compulsion....something I have frequently observed in my son and that a doctor once showed me a lot of research on. Honestly, as is being discussed on another thread here, a formal diagnosis is often hard to come by, and even when given one, it can sometimes be flat wrong, as many docs tend to give a TS dx when often other factors are triggering the tics. as you have likely read here, many have found that their kids tic due to an autoimmune condition brought about by strep bacteria (PANDAS) and others have found food allergies to be the culprit, etc etc. Some have many different issues working together to cause the tics. It can be very overwhelming to implement the many things we discuss here at first, but taking it a day at a time and step by step really is the best way. I am sure you will get a lot of input from the other members who truly have a wealth of knowledge and experience. dont hesitate to keep asking questions I will let you know if Lara has any info re docs in your area

hi bmom as a classic example I would cite coprolalia, also known as "the cursing tic" as being uniquely a TS tic, along with the other -lalias (echolalia, palilaia etc) where others and one's own words are repeated along with some of the uniquely characteristic COMPLEX motor tics like walking and then stopping to spin or perform other motions almost ritualistically. yes, kids with transient tic disorders may vocalize, but again it takes observing echolalia, palilaia and coprolalia to understand that that is a whole different kind of vocal tic! I am not suggesting that people with other issues eg PANDAS do not have TS as it is believed that strep or heavy metals or whatever may TRIGGER the onset of TS, but I also think it is wrong for all kids with these tic disorders to be given the TS label after a year what I am saying is that when you have a family history of Tourette Syndrome, not just tics, it becomes very clear how the "label fits"...we have 3 generations to observe it should also be remembered that Tourette Disorder (its correct medical name) is a SYNDROME Tourettes has been recognised as a unique disorder for a long time now, but I do think that many kids today are suffering tics for OTHER reasons (vaccinations that mess up their immune systems and fill them with mercury, aluminum and other adjuvents from when they are born, food that is chemically contaminated with all the garbage that is called "additives", overuse of antibiotics in young kids that lead to candida overgrowth, plus the "superbugs" that have developed as a result, and that could well explain the rise in PANDAS. PITANDS etc, foods that have been so altered that more people are becoming allergic to them etc etc etc) again I am not saying that kids who have these other issues dont have TS, just that I personally believe they are often incorrectly dx with TS . Also, just because there are is a family history of tics, doesnt necessarily mean it is a TS history. I guess I become somewhat defensive when I hear it referred to in such fearful ways, as if having the dx means some awful life sentence, and waiting for the monster to spring out . I am not afraid of Tourette Syndrome. My son has it and has likely had it all his life, even tho we only got the clear dx when he was 10. He inherited it from his dad who in turn inherited it from his dad. We have accepted it and are just thankful to have found ways to keep it under control without those awful meds. My son is not ashamed to tell people he has TS and we have not hidden the fact from anyone. He got his drivers licence with no problem and is a brilliant A student with multiple talents and a very high intellect, who really can say "I have Tourette Syndrome but it does not have me!" I get so many PMs from parents of TS kids who are often too embarrassed to post as they feel that somehow their admission will be seen in some way as a failure, indicating that they arent doing the right stuff to "fix" things. I do my very best to encourage them to see that yes, I fully advocate taking additional measures to clean up diet, supplement correctly, eliminate toxins and allergens and get rid of heavy metals and other things that make the condition worse. BUT that they shouldnt feel despondent if these measures dont necessarily CURE the tics completely. People with TS tic and sometimes those tics wax EVEN when one is doing everything "right"........*that* in my opinion is one of the characteristics that makes TS so very different from other tic disorders anyway, I do hope that no-one thinks I am trying to negate that the TS label is used far too much by docs ...I agree! I am just pointing out that for some of us, we really dont need to dig all that deep to know that we have genetic TS and that, again in my opinion only, it is *uniquely* different from other tic disorders in that it is a spectrum of conditions that involve a whole lot more than sounds and movements! If we didnt have such a clear family history I most certainly would have questioned the dx and I sure did have a barrage of testing done to eliminate other things. And I would strongly encourage anyone who is given a TS dx to do the same, especially if there is no family history of it

I personally think the biggest problem is that many doctors are too quick to give a TS diagnosis for every tic disorder. It's my opinion that TS is an inherited disorder and that other tic issues that occur without a family history of TS shouldnt be dx TS. I know that isnt what mainstream medical diagnostic protocol says, but it wouldnt be the first time I have disagreed with what conventional medicine says . Where I sure agree that in many cases, tics are a result of specific triggers, where everything from allergies through GIT problems, infections, parasites, heavy metals and a host of other issues may be the underlying cause........nevertheless, as the mother and wife of two people who DO have genetic Tourette Syndrome, I feel I can honestly say that it IS a very real and accurate diagnosis for both my husband and my son. There are certain characteristic tics that set TS apart from other tic disorders, and I think the "one year" criterion is a very false and misleading dx .....other tic disorders can and do continue for more than a year if the triggers (eg gluten for Caryn's child or strep for those with PANDAS) But when you have lived with family members who have Tourette Syndrome, you know what it is! Period. and yes, where we know there are also triggers that can influence the waxing of TS tics, yet I honestly do feel it is a very different category from other tic disorders, and I sure dont object to "the label" one bit....if anything it brought MUCH clarity for my husband about himself and his dad when our son was dx. because it finally explained what they had been dealing with all their lives too. Having the TS "label" was also very beneficial to my son at school because it gave a clear explanation of his tics and allowed the accomodations for them that he needed I can fully understand why many dont want the TS label, but I dont think that should invalidate the very real diagnosis that those with genetically inherited TS have ps Calicat...yes, i do think the dietary stuff has likely played a major role in the tic waxing you have seen

Hi fsw anaesthetics are a complex subject and not one that a lay person can really comment on. rest assured that, especially with very young children, great care is used by anasthesiologists my son had a colonoscopy plus endoscopy when dx with Crohn's Disease and all went very well hoping you get clear answers and helpful treatment for your child Cheri

I have been researching involvement of Mycoplasma bacteria in Crohn's Disease and found this article posted on another TS forum PubMed article

Hi kallik i noticed mrsD posting (Hi mrsD! ) so hope she will respond here too as she has lots of info on ADHD my son has ADD (no H) and his focus/concentration was helped very much with borage oil and gingko biloba

Airbucket when you spoke of your child's rash a flag went up for me Scarlet Fever results from a toxin produced by strep http://www.kidshealth.org/parent/infection...rlet_fever.html I know you were recently at Shands. Did they run any strep tests?? and yes, I would get in touch with dr Robbins asap Cheri ps thanks for the kind words. I try to keep up here, but must admit soooo much new info has come out in the 8 years since my son's dx that I feel many of you are way ahead in your knowledge, especially on dietary modifications and the details of the biochemistry behind all this. When my son began getting his life back, thanks to Bonnie publishing her protocol on her old yahoo page back then, and my then finding Latitudes/ACN, I felt that the least I could do was to try to point others in the direction where we had found improvement. So it really is a blessing to me to know that it has been of help to anyone.

we noticed cumulative reactivities for my son and came to realize that the effects of "junk" food may not always show immediately, but would inevitably cause a pay back I think, as my son has genetic TS, that his reactivities were heightened when that internal trigger for waxing was "on"...simplistic way of explaining it I know but the only way I have come to understand it