Chemar

Hi sbechtel and welcome to Latitudes/ACN what you describe does sound like OCD It can be treated with medications, but these sadly bring many potential side effects. Cognitive Behavioral Therapy (CBT) is one of the most effective ways to help people with OCD and is done with the aid of qualified psychologists. There are also over the counter supplements, like Inositol, samE and 5HTP, used with vitamin B6, that can bring much relief by elevating serotonin, which is usually deficient in people with OCD. Always a good idea tho to have a physician provide guidance before giving anything to a child here are some useful websites that I have put together on OCD and its treatment http://www.latitudes.org/forums/index.php?showtopic=1963 hope that helps you find some answers

Hi Carolyn my son takes L-glutamine daily for his Crohn's Disease. It is a remearkable healing agent for the GIT I dont know the scinece behind the theories, but MONOSODIUM glutamate is a different chemical from the glutamic acid=glutamate that the body converts glutamine into anyway...whatever the theories....my son does NOT tic from L-glutamine, but he knows instantly if he has consumed MSG as he both tics more but also just begins to fee weird and his OCD also rises

hello robinjax and welcome we can all sympathise with how you are feeling as at one point or another we have all been through those emotions ourselves yet, as most of us can also testify, things can and do get better for many people with tics, whether naturally or with specific treatments that help most of our members are still away for the holidays, and so I am sure you will get more input in about a weeks time, however I did want to point out something your docotr told you that is absolutely INCORRECT you quote the doc as telling you that well....as you later remarked, that is NOT the case TS tics wax and wane characteristically and different tics emerge either along with pre-existant ones or in their place. One particular tic remaining consistently would therefore be more likely to suggest it is NOT TS The standard dx for TS is that both motor and vocal tics be present for a year, with waxing and waning I am so glad you have Sheila's book and hope it will give you much insight and inspiration. Our story is in there too. Just remember that, whether this is TS or some other tic disorder, your precious son needs for you to focus on him beyond the tics. The more we focus on the tics, the more the kids pick it up and then they sense our anxiety and sorrow and it causes stress for them which in turn causes more tics It is hard as a parent to appear nonchalant about something that we are worried about, but from experience I know that one needs to wait for them to be either out or asleep to release the feelings. Just remember too that for a vast majority of kids, whether with TS or other tic disorders, the tics naturally reduce as they get older and past the "hormonal years" In terms of school, the Tourette Syndrome Association has some excellent booklets and videos that can be used in school to educate both the teachers and the classmates about TS and so help to foster more acceptance and understanding http://www.tsa-usa.org I dont know if you have found Leslie Packer's very informative site on TS yet http://www.tourettesyndrome.net in the meantime, honestly, i would try to get away from dimetapp!! loaded with coloring and stuff that is just a no-no IMHO if he likes grape, maybe try to get the supplements in to him by getting them in powdered form and dissolve in Welch's grape juice? Also, to calm him at night, i highly recommend the Epsom Salt baths.....2 cups of epsom salts in a tub of warm water with a 20-30 min soak works wonders for relaxation, and allows the magnesium salts to be absorbed lots more to pass on to you, but i need to start working so there is hopefully some stuff for you to take in for now all the best Cheri

Hi Lizbeth and welcome Just like carolyn, my son benefits very much from the acupuncture therapy. Our therapist does Chinese cupping, massage and reflexology during the session, and, when required, also biofeedback resonance. my son goes once a month now, but whenever he has been in an intensely waxing phase, we have done once a week or twice a month. the massage he gets is a bit more specialised that what i would imagine is given in beauty parlors, as it is specifically designed to compliment the rest of the therapy and to focus on the meridiens that are in need of treatment I have bumped up a thread that I have on which treatments were most beneficial to my son. It gives a comprehensive look at the need to detox and restore balance to the system as well. Supplements (not just vitamins) have been very beneficial for my son and I credit them, along with his acupuncture etc regimin with helping his TS/OCD go from very very severe to very mild. We got a very dramatic result from the supplements....it may take a little longer for some people. Also do remember that different people have different supplement needs and so, if possible, actual testing to determine just what your child's baseline levels are, would be very beneficial here again is the thread on my son's treatments http://www.latitudes.org/forums/index.php?showtopic=687 Cheri

bumping up for Lizbeth and other newcomers

Patty a person with tics should not take ALL amino acids as supplements as SOME amino acids can increase tics , probably via stimulation of the dopaminergic system The amino acid Taurine has been found to REDUCE tics in most people (altho some, like Carolyn, do not tolerate it) In the vast majority of people with TS, taurine is beneficial, especially when taken with magnesium, to the point where Bonnie Grimaldi markets her own magnesium taurate (she also has info on her website re amino acids http://www.BonnieGr.com ) Once again, as with all supplements, one thing does not work the same for everybody....but i stress again that for the vast majority of people with TS, taurine is very beneficial

Lenny re supplements.....I do always try to stress that it is a combination of needed supplements that make the biggest differences, rather than just any one or two specific supps for my son, we know that for tic reduction it is the combination of the calcium/magnesium/zinc PLUS taurine and flaxseed oil that work best..........and we have also learned that he responds better to certain forms of these supps than to others. And, unlike many people, he cant go near B complex, but gets his RDA of B's via his multi along with some added extra separately because of his specific needs (B1,B5 & B6) So glad you recognise that you are on a learning curve and that every bit of trial and error is not a set back but a stepping stone into unravelling your child's specific issues and what will best help him If Claire had not persisted with her investigation into photosensitive triggered tics, so many people would still have been unaware of this phenomenon. I remember when she first spoke of it on another board and was blasted for even suggesting it ........but she persevered and look at the benefits that have been reaped, not only for her own child, but for so many others that is IMHO what makes this board so very special, because we have people with such a vast range of different experiences who have shared and so give insight for others to investigate and find solutions.

hi Appie yes, OCD can flare dramatically with stress and trauma, and then wane again to a less severe form

hi flower magnesium lactate, altho the most absorbable, is hard to find remember mag glycinate is also well absorbed and many companies are even making blended chelates of glycinate, taurate and citrate there is nothing wrong with mag oxide per se, but being that it is poosrly absorbed, it is a waste basically the reason that magnesium taurate is so good for people with tics is that not only does it provide a well absorbable form of magnesium, but the TAURINE with which it is compounded is an amino acid known to help with tic reduction in itself hope that helps

interesting Kim my son has a complete tic upsurge before, during and after illness (with or without fever), tooth issues etc It would be interesting I think to maybe do a poll to see what % of members see tic increase with illness and how many see the decrease (ps as I have mentioned before, and it is still the case, although I know it sounds weird, the only other consistent tic surges my son gets, apart form illness/ teeth issues, is at full moon. )

hi Appie i sure do feel for your situation as it is clear your partner is dealing with very very severe symptoms we here are really not in a position to give comprehensive advice on this, and I would like to recommend that you take a look at the forums at psychcentral.com as there are many people there who deal with intense mental health issues and they are a very helpful community also, on Friday afternoons at 2.30pm EST, there is an open free chat with the psychologists, who can maybe shed some light for you and point you in a hopeful direction for treatment for your loved one there is ALWAYS hope, Appie here is the link to the forums at psychcentral, and you will also find a wealth of info by going to their homepage http://forums.psychcentral.com/

thanks so much for looking at this mrsD:) So, it is interesting then, CP (and Sunshine) on how you have noticed the opposite to the "rule" on this! once again reinforces my belief that individuals, even with the same illnesses,dosorders, diseases, can have such very different responses to things based on their own unique biochemistry. there must be something triggered in the illness mode for your son CP and in fever for yours Sunshine, that switches off the mechanisms that usually cause tics, whether the dopaminergic pathways or something else i will certainly be looking in to this as well, to see if I can find any additional info for you

hi CP and SP i honestly dont know about illness and dopamine but will ask mrsD who is really knowledgable about such things I do agree tho that it is very unusual for tics to subside with illness as usually the exact opposite happens....people tic WAY MORE when they are ill or have infection, fever etc so this really is a very interesting observation. hope he is feeling better

agreed that it is grrrreat news about the "no screens" having such a dramatic effect Lenny! but do just want to point out that we did notice an OVERNIGHT improvement for my son, especially with his OCD and severe tics, when we began supplements and within 3 days the improvement was certainly dramatic and by the end of the first week, miraculous! I know this isnt necessarily going to be the same response for everyone, and it is likely that my son's dramatic improvement may also have been due to depletion caused by those meds he had been on for a year before I think the essence here is that it is doing what is MOST NEEDED for the individual that makes the most impact and has the most dramatic effect...eg for PANDAS kids it is the right antibiotic, for photosensitive kids it is the elimination of flicker from CRT screens and for vitamin/mineral/amino acid deficient kids it is supplying those supplements

Patty i am curious as to why you arent keen to give a magnesium supplement i agree it is good to take as much of nutritional needs via food and drink....but in the case of magnesium being so very important re tics....a good supplement is IMHO essential, in addition to the epsom salt baths, cream etc

hi Inositol helps with elevation of serotonin and so is prmarily helpful with OCD and depression etc I think tho that Bonnie Grimaldi includes it in her TS plus you could check the ingredients at www.bonniegr.com HTH

Hi Deanna as far as I understand photosensitivity can be recovered from but it is not an area I am expert in. Claire is the one who really has most knowledge on this

Patty most cases of Tourette Syndrome are genetic ie a family history of TS there are however also cases that do not have an obvious family link and there it is believed that the genetic and/or physiological mechanisms that control TS may become switched on by other internal or external triggers, many of which are discussed on this forum and in Sheila's book there are other tic disorders that exhibit both motor and vocal tics, and there are therfore many labels for these tics...just as there are many labels for all the wide variety of other disorders and diseases that people have! Because of clinical observation, the main diagnostic criterion for a TS diagnosis is one year of exhibiting both motor and vocal tics that characteristically wax and wane. That seems to be the most consistent and reliable diagnostic method. It doesnt mean it is error free, just the best they have at present one day there will likely be a way fo genetic screening to dx inherited TS When there is no genetic root, I would agree that to dx someone with Tourettes after one year of symptoms may well be erroneous, but that is how the medical profession does dx it however, when there is a family history of tics OR some of the other neurological conditions that can be co morbid with TS, then a Tourette diagnosis is usually accurate there is (as yet) no "cure" for genetically inherited Tourette Syndrome, although as my family and many others have proven, it certainly can be helped without medications to become less intense. For us, actually getting the TS diagnosis was in fact very liberating, as it not only explained what had happened to our son when he began ticcing, but also gave insight to my husband on his own intense childhood tics and explained a lot about the vocal outbursts and movements his own father had. It also helped me to understand some of my husband's existing movements and noises. And with that knowledge also came empowerment, as it gave direction in how to make life better for my guys As a mother and wife, I personally get jarred by the fear that I hear expressed by many about a TS diagnosis. I understand the concern...I felt it myself....but the fear is IMHO really blown out of proportion to the reality My husband and son are both wonderful, loving and compassionate people who have very high IQ, are top achievers, multiple talented, and most certainly live full and productive lives....they just happen to tic. I learned a number of years ago that their tics are part of them and, where I do my part to provide them both with a diet, supplements and an environment that helps to keep their tics from interfering with their lives........ yet they tic. Period. It doesnt define them, but it is a part of who they are. And I and they and our family and friends not only accept that....we barely notice it, and in fact some of their tics are endearing aspects of them! It is genetic, and maybe one day in the not to distant future their will be a cure...but at this time there is not. Only many ways to make it easier for them. And one of the best ways is my loving acceptance that for them to tic is an inherent and NECESSARY action...it brings them a release in their neurological systems. They have a TS "label" and are not ashamed or afraid of it, and neither am I and yes, the media (and most people) tend to focus on the extreme aspects of TS...but then they do that with most stuff dont they. Anyway, sorry to ramble on, but that is my perspective on being wife to a husband and mother to a son with genetic TS *************************** Cum Passus it has been found that many of the symptoms of TS and the conditions which can be (but are not always) associated with it, can manifest as puberty progresses and in general, things tend to taper off when the hormonal years are passed. The one year criterion is a clinical one and so not a hard and fast rule...as we have all discovered, people are uniquely different and manifest things according to their own biological makeup again, I would emphasize my own belief that the only truly accurate TS diagnosis is when there is a family history of tics, OR the known neurological disorders that can accompany TS, like OCD when this genetic link is absent, I tend to personally feel that the likelihood of TS is VERY MUCH diminished, and that some other mechanism is likely at work, wither internally or environmentally, to trigger the tics. ***************************** Jackie I am so glad that you have ordered Sheila's book because I feel it will give you so much insight into what the possible causes are for your son's tics just remember, whether it is TS or transient tics, or tics induced by infection, allergy or environmental factors.....the more your child is aware of your focus on the tics, the harder it is for them and the more they can be psychologically impacted,. I know it is very hard to do...but try not to let him know you are concerned about his head shaking or any other tics that may emerge. Just observe casually and keep your own records, but dont keep asking him why he does it, or how it makes him feel etc etc I say this from my own bitter experience as in the beginning I made things a whole lot worse for my son by being obsessed about his every tic and so caused him unnecessary stress and therefore more tics I will never forget the day he came to me and gave me a hug and told me how much he appreciated that i had accepted his tics and wasnt always talking about them and trying to "fix" him........... It also opened a new phase where he became a partner in being careful with diet and taking his supps etc, because he knew it helped...........but knowing that it was no longer frantic mom trying to cure him wow....I am in a rambling mood today arent I...........but I hope that all I have written here will maybe help to bring things in focus for others.

no Patty...many people have TS and have absolutely NO other neuro issues other than TS tics. and yes, vocal tics can occur with other tic disorders, but it is usually the ONE YEAR criterion that distinguishes TS (ie vocal PLUS motor tics present for at least one year) even then, I am always hesitant about the TS dx when there isnt a genetic link

hi again Jacki:) I just posted a reply to you on the other thread here that you had posted on http://www.latitudes.org/forums/index.php?showtopic=2063 ps just an addendum....you say nothing of your son having any vocal tics? Highly unlikely that he has TS if there are no vocal tics along with the motor tics

Hi lmcgill and Jackie and welcome to Latitudes/ACN Patty has given you some very good pointers there! lmcgill, gluten intolerance certainly could be causing a problem and it would be worth having testing and try elimination to see if this helps we have a number of members here who have found that by removing offending foods, tics drastically reduce ********************* for both lmcgill and Jackie there are so many things that can cause tic onset in children that, once a genetic TS diagnosis is ruled out, it is a case of much research and often trial and error until one finds just what is triggering things Our administrator, Sheila Rogers, has written a very comprehensive book detailing potential causes and possible treatments for tics http://www.latitudes.org/book.html and she also has an excellent article about tic triggers on the main ACN section for tics and tourettes http://www.latitudes.org/tics_tourettes.htm I am constrained by a very busy work schedule at present and so can post as much as usual, but would encourage you to keep reading and doing as much research as you can and most of all to find a knowledgable doctor who can work with you to get testing and guide you with treatments. sadly, most conventional doctors really are not aware of or open to many of the causes and treatments we discuss here, and so it is best to work with Integrative physicians who are up to date on all this, or who at least will take the trouble to educate themselves and then help. ALWAYS ask whether a doc has experience with tics and also if they are open to alternative testing and treatments, as many will write a prescription and tell you there is nothing that can be done beyond that! And most of the tic meds come with potentially serious side effects!! DAN doctors specialise in autism, but many are also experienced in working with patients who have transient tic disorders or TS Sheila has a sticky thread to try to help find good medical help http://www.latitudes.org/forums/index.php?showtopic=565 I will try to bump up some of the comprehensive threads here that summarize testing and treatments , but really must get back to work now Just a word of encouragment to both of you........yes, it is scary and overwhelming when this all starts, and yes, you may still have some rocky paths ahead, but as many of us here can testify, both those dealing with TS and those with other tic disorders, there are numerous ways to improve things without having to resort to neurological drugs. ((((HUGS)))) to you both and just know that you have found a really special group here who will support you and freely share knowledge and experience Cheri

Giselle, I am so happy for you and Hoyt! I pray that this is a big stepping stone for him and that God will continue to make opportunities for him to be able to use the talent he has been blessed with

Patty magnesium has been found to be the #1 supplement needed for reduction of tics..........we have many many threads here on this subject and Bonnie Grimaldi has done extensive research into this the best form is magnesium taurate (available from Bonnie Grimaldi's Bontech line or from Cardiovascular research brand at the Vitamin Shoppe stores or online magnesium is best given in a 2:1 ratio with calcium ie 2 parts calcium to every one part magnesium and our docotr feels zinc should be included avoid magnesium oxide as it is very poorly absorbed and the citrates can have laxative effects here again is the link to mrsD's excellent magnesium info thread on neurotalk http://neurotalk.psychcentral.com/showthread.php?t=1138

chinese cupping is an excellent detox method Carolyn!

here is info on Lecithin and Inositol rushing with work so cant post more now back later