Chemar

yes, that can be a tic. here is a list of tics that can occur in TS http://www.tourettesyndrome.net/Files/CommonTics.PDF the cognitive behavior therapy can be very helpful in learning to substitute socially upsetting tics. When a tic needs to "out" it is very stressful for the person to hold it back. CBT can help find ways to disguise the tic, while still releasing it. I do know how hard it is to deal with these kinds of socially embarassing tics. Another reason why I have always felt it best to be proactive to inform school, classmates etc of the TS. Simple explanations like "ticcing is like hiccups" or "like blinking/sneezing etc" so that younger kids get the idea of the involuntary action. it;s amazing how acceptiong kids are when they have something explained to them in ways they can understand The TSA has excellent booklets to help educate teachers and classmates about TS tics www.tsa-usa.org

Tessa very kindly directed Ross's mom to NeuroTalk. I dont post on BrainTalk anymore since the infamous crash of '06 when years of our posts went "poof" ): I know some of our "old- timers" here will remember cool_gadget from the BT board and that you might want to encourage his mom, as she is hurting with the realization that trusting his doctors might not have been the right thing. I am hoping Ross will maybe decide to post as well. She is very overwhelmed right now and so should anyone make contact, remember small steps are the road to success with natural/alternative treatments, and especially for someone as fragile as she is at present. People can often become totally discouraged by the sheer volume of info on all the stuff we do here. anyway, I thought to link the thread on NT for those who remember Ross and also for anyone who may want to encourage her. I am praying that things will turn around for Ross as he is so talented and a really genuinely nice guy. here's the link http://neurotalk.psychcentral.com/showthread.php?t=32085 Cheri

hello Judy one of our members Andy reported a few months back that his child may have been dx with Lyme Disease, but I havent seen him on recently

I bumped up a thread that has some important links in it take a look for Claire's Testing 101 sorry so rushed http://www.latitudes.org/forums/index.php?showtopic=2459 hope that helps C

Hi DKRESmith if you click on the link in my signature, you'll find some details on my son's treatment. His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching. In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were. Most of his tics seem to be head/neck/shoulder and vocals. My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years. Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months. hope that answers your questions Cheri

Hi again if there is delayed sensitivity to foods (which is a form of allergy) then it can, from my understanding, be just as undermining to the immune system as a full blown allergy. Just takes a while longer to manifest. And, as with all allergies, when the body is fighting the allergen it will usually be manifesting the effect in other ways, eg with increased tics, negative mood, behavior, respiratory and digestive maladies etc so I am truly not suggesting one ignore alergies or even sensitivities, just that one need to take a balanced approach and, if there arent serious food reactivities, then maybe try the enzymes and see if that helps with those that there is mild to moderate sensitivity to. we did not do many of the tests that are available now when my son first started with his alternative/natural treatments, and so I am by no means as clued up on these as most of you. just adding my 2c worth on taking a balanced approach to all this and take it a day at a time. Sometimes we just wear ourselves out by trying too much all at once, and so we sometimes need to just stick to the basics that work and slowly work on the rest, a small step at a time. hope you have a peaceful and relaxing weekend away.

here is the link for more informtion on Sheila's book http://www.latitudes.org/book.html

Hi Nick's Mom and welcome hormones can cause both acne and increased tics, although usually by 18yo the intensity of the hormonal changes is down. I am not too sure why you had to discontinue supplements while on antibiotics? was there a specific contraindication?? If not I would definitely try to at least get the magnesium in along with a good pure multi vitamin/ multi mineral and the Omega 3 (remember too that some people seem to tic more with fish oil, although it is by far the best source of Omega 3. If you suspect sensitivity there, flaxseed oil is next best) has your son ever been checked for Candida albicans overgrowth (gut yeast infection)? My son has periodically had problems with candida and one of the first signs for him is acne and increased tics. We use Candida Clear by NOW Foods with great success and find the acne clears quickly with it too. Antibiotic use can also promote candida infection if probiotics are not used to counter the flora depleting action of the anti- I do know of people who have tried habit reversal for TS tics and have not been pleased with results, in some cases finding things to be worse than before. Cognitive Behavioral Therapy is far more beneficial in helping with the co-morbid issues that often accompany TS eg OCD, depression, anxiety, rage etc, and my son also learned a lot of tic-substitution skills at CBT Hope that may give some pointers, and that you will continue to read thru discussions here in hopes of maybe finding additional ideas on how to help your son.

Hi Tom's Mom honestly, and only because my son did not show any clear food *allergies*, the only things we avoid are the artificial garbage and any foods that aggravate his Crohn's Disease. I do buy organic, and we do make most things from scratch. But like Kim, my son takes digestive enzymes (Digest-ease by Nature's Herbs) plus his assorted supps and eats a complete diet. We have only ever run specific allergy tests and so he may well be sensitive to other foodgroups, but not so that it has caused him problems with either tics or Crohns. When he was first starting out on alternatives, we did do an elimination diet at the recommendation of the radiogenics therapist, but honestly saw no additional improvement by cutting out anything, and all it was really doing was upsetting my son not to eat good healthy food he wanted, and as you have noted, running up high $$$$ I do feel strongly that if one shows allergy to a food, it should be eliminated. But I am still not too sure how I feel about the intensity that some doc's and patients seem to take this to, when there are mild sensitivities rather than allergies. And it concerns me that kids are often feeling more stress, and hence ticcing more, from unnecessary rigidity with diet. it MUST be stressed again that my son has genetic TS, and I have said many times that I have never expected the treatments we use to "cure" his tics, only to keep them mild and not interfering with his life like they used to. I do not believe we currently have any "cures" for TS, tho I am hopeful they will come, but I follow the nutritional program of healthy diet and supps because it most definitely has turned my son's TS from very severe to very mild. However, there are kids who tic directly related to food allergies, and I absolutely see that it is essential to remove offending foods from their diets. I just feel once again, as in all things, that balance and moderation is best, and that we should not allow obsession with "fixing" the tics to cause us to implement drastic changes that *may* not be necessary. JMHO

very interesting Kim, thanks for posting this. i will be watching this one carefully to see if they identify the trigger.....and yes, how encouraging that they are looking in the right directions!

that is so very well said emma Balance is key! Michele, so sorry if I sounded abrupt in my reply. It wasnt directed at you. More in memory of times thankfully past. And in a hurry. so possibly not the best wording ever....... I know there is a lot of very good information on that site, and I even used it for information for me when my son was newly diagnosed and I was floundering around with no clue as to what to do and how to stop the severe and painful tics and total tranformation that happened in his 10 year old life, almost overnight, when the genetic switch on happened I guess. So I am in no way negating any of the good help and information available there. do understand my comments were in no way directed at you or that anything was wrong in this valuable discussion. It was based on seeing a post suggesting some there may be referring to us here and mentioning that it would not surprise me. I havent read the forums there, only ever went to the web info, so have no idea what was or wasnt said or why. ok.....just felt the need to explain that I am not negating the good that site is for many, and to ensure you Michele and everyone that this is a valued discussion. I just felt background was needed in case any of you might recomend Latitudes/ACN and meet with negativity. I feel kinda protective as I know how fragile I was back in the early days. (((hugs))) to all and back to the discussion my husband and son both have TS and both have had to deal with anger issues so it is a subject I do understand. We have found consistently that Cognitive Behavioural Therapy, whether done by self or better yet by a qualified psychologist, is one of the very best ways to help with those extra things that can sometimes accompany life with Tourette Syndrome. The supplements and healthy diet they both follow goes a long way to provide complimentary healthcare. ok...rambling post over *blush*

I need to add here that the person who runs that website linked to above has been extremely critical of Latitudes/ACN and used to hound and ridicule and contradict Claire and myself and Ronna on another board and openly posted to discredit Sheila Rogers as well. They also tried to cause disruption here a few times soooooooooo everyone is entitled to their opinion and yes, obsession with a "cure" is an extreme I dont agree with, but so is having closed mindedness to alternatives and possible "outside of the box" answers, and being scathingly critical of solutions others have found simply because they dont fit one's own frame of reference is IMO not very constructive.

welcome MaryAnn so glad you are reading Sheila's book and seeking alternative answers to help your daughter. I just did want to mention re the pains and the nausea....this is not unusual in teenagers, with very real "growing pains" and hormonal changes Forgive me if you have already mentioned this but have you tested for food allergies other than just removing the artificial additives. Often nausea and pains can be related to specific food allergies, like gluten/casein. It is also often a symptom of Candida overgrowth (yeast infection) in the gut, and again we have lots of threads here discussing that It's good that you have her on Omega 3 (fish oil is best unless she is sensitive to that, in which case flaxseed oil is next best) If you can get her on a good pure multivitamin/multimineral as well and add extra magnesium that would be a really good base to start, while you try to find more pieces of her specific health puzzle. I cannot say often enough how soothing epsom salts baths can be, and, as Patty has found, the cream seems to be very helpful too C

Hi elec many kids with TS or transient tic disorders can have eye rolling tics so this *may* be a tic also, if you pop into the TS/tics forum here and do a search on photosensitivity and on screens you will find a lot of info on kids who get these eye movements whenwatching TV, playing videogames or at the movies....possibly due to photosensitive reaction

Hi Kim for some reason that keeps freezing my computer, so I am basing my comment only on what I have read here re the virus idea for TS ................ My husband, his dad, and my youngest son ALL mamnifest TS. Three generations of males in a row. My oldest son has no TS symptoms. Neither do I. Nor did my husband's mom. How would a virus explain this clearly hereditary occurrance? And what of the genetic work already documented for TS Why would males have such a higher incidence of TS if it is viral?? as I did not actually watch this lecture, I obviously may have totally missed the points being made, so apologize up front if I am misunderstanding the premise. Now the immuno issues I can understand as it does seem that is a major factor in TS. and yes, the comments on the most being achieved when parents get active....absolutely agreed....in my own reference frame....if Bonnie Grimaldi hadnt done research to help her own child, and if she hadnt freely shared her plan on the web all those years ago......I would not have found the help I so desperately needed for my son!

passing by quickly so do forgive my nrief post anger/rage/frustration etc are not necessarily part of TS but very often can occur as co-morbid conditions or as a result of unresolved issues related to the ts ie may not be co-morbid but rather resultant. We were recommended that my son use lavender oil as a calminative. smelling one drop on a tissue or on wrist has always been very calming for him also Bach's Rescue Remedy under the tongue if things are really bad, and a relaxing epsom salts bath Leslie Packer's excellent website on Tourette Syndrome deals with behaviour issues and also a whole section on Rage attacks here is the site map so you can easily find your way around there: http://www.tourettesyndrome.net/sitemap.htm

hello justme07 i am so sorry for all you have suffered here at ACN/Latitudes, the focus really is on alternative methods to treat certain neurological conditions and we are not equipped to provide actual medical or psychiatric help, other than the self help support on these boards PsychCentral has a community that may truly be helpful to you. here is the link http://forums.psychcentral.com/

hello we have found that for both my son and my husband, chiropractic is beneficial to them and has never made their TS tics worse. I stress TS as that is all I can speak for...other tics have different causes and so I dont know the effect of chiropractic on them

Hi sorry I am dealing with a high workload preparing my online stores for the holidays and so am posting real quickly if you do some searches under my user name you will find quite a few posts on this it was actually an associate of Dr Murphy at Shands Clinic who educated me on this. He was my son's doctor for a while when we were transitioning from meds to the natural way of treating his then severe TS and OCD. He is now in New Zealand I believe, but he gave me some excellent info, research papers etc on the very definite overlap of tics and OCD behaviour in Tourette Syndrome. My son would often have tics become OCD stuff and OCD stuff become tics, and even now with both his TS and OCD really mild for some years now, yet waxing of one seems to come with waxing of the other and they still blend into each other. The supplements that we have used for OCD really stopped this from being a very troublesome issue for my son.

hi Sunflower you may want to ask carolyn_lsc on the TS/tics board here as she has had to be very careful with toiletries due to allergies

hi kallik yes, spitting tics are a common one for people with TS and yes, there is no specific way to stop them other than to just maintain the healthy diet and the needed supps my son carried tissues i his pocket and "released" the tic by spitting into them. He has always been pretty good at covering over the socially negative tics and finding ways to substitute them whenever any of my son's tics increase, we also tend to up the epsom salts baths to help the calming. When he is in waxing mode, he has the tub, with chamomille tea, every night before bed. as with most tics tho remember...this too shall pass.

welcome brskac I have not dealt with pyroluria as my son was negative, but others have and I am sure they will comment as soon as they see your post. and yes, finding a good doctor who knows about pyroluria would be of great benefit. good to see that you have been so proactive in helping yourself and your child on this.

hello Vanessa both are excellent and can be taken together. Inositol is in the B group of vitamins . Here is some more about it: Inositol Information Omega 3 essential fatty acids, as found in fish oil and flaxseed oils etc, are good for a number of processes in our bodies and can be taken with the Inositol. there is a lot of evidence that omega 3 EFAs are vital for optimum neurological functioning. usually, in OCD, serotonin neurotransmittor levels are deficient. supplements can help to increase serotonin levels and also to optimize its actions, and so help reduce OCD symptoms hope that helps a bit Cheri

Sunflower there does NOT have to be any history of "movement disorders" to develop PANDAS from strep many kids with PANDAS do NOT tic...they have OCD and other symptoms, so strep induced tics are but ONE symptom of PANDAS .....BUT not the defining one

Patty Taurine is the free form amino acid and taurate is the form it is in when combined with say magnesium perhaps this article explains it best Magnesium Taurate