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Found 21 results
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5 Key Advancements in Tourette’s Syndrome Research This is an interesting summary article from Princeton Medical Institute. I find it encouraging that there is more exploration beyond pharmaceuticals, and always remain hopeful for more advances that explore understanding the causes to better facilitate treatment and perhaps cures. We also need so much more research on the many other ways that clearly help (as discussed here at ACN Latitudes) https://princetonmedicalinstitute.com/2024/05/15/5-key-advancements-in-tourettes-syndrome-research/-
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If anyone has read my long thread on what helped my son all those years ago, you know Magnesium was key in calming his then very severe tics. (thread is linked on my profile page) Fast forward 23 years and a senior relative who also has TS tried the Natural Calm powder (ionic chelated magnesium citrate) more for digestive/laxative purpose- and had an immediate calming of some tics that had resurfaced! It just reminded me again of how dramatic an effect there was on reducing my son's TS tics after adding a good magnesium supplement. I understand not everyone responds the same way, but sure is worth a try if you are looking for something that may just help
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I just saw this article which might be of interest to others here. Five latest advancements in Tourette’s Syndrome research
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I had not seen this Yale School Of Medicine article before today 3D Organoid Models Show Brain Mechanisms Of Tourette Syndrome
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I came across this scholarly article via PubMed while researching something, and was pleased to see it. There are many studies and articles on this topic, but often conventional research & medicine see it more as a "fringe" idea, and also often overlook the volume of anecdotal evidence there is now so freely available that supports this premise. My own family is a proof positive "anecdotal" story of the vital role of correct dietary nutrition (with nutritional supplementation where needed) in helping to treat neurology without, or with less, pharma drugs and their potential negative side effects. Because there is Crohn's Disease as well as TS spectrum for my son, we are also able to see that Brain-Gut connection so clearly too. I continue to be amazed at how simple changes in diet and supplements can often have such profound impact on all those disorders, and how connected they are. My advice from our experience has always been - Do your own research and keep that journal on what aids waning, or triggers waxing of tics, or other symptoms. You will be amazed at how what goes into our mouths can either really benefit, or really mess with our Neurology, as well as our GIT. And for those already dealing with a neurological issue - the impact seems magnified. Here is the 2021 article I read today that gives a summary & some references. Dietary nutrition for neurological disease therapy 🙂
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I just became aware of this from May 2022, so posting the link below for anyone who may be interested: Largest worldwide Tourette syndrome genetics and neuroimaging study also promises insight into related disorders
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Stimulating research gives new treatment hope for Tourette Syndrome This interesting research reminded me of how my son's CBT therapist suggested an elastic band on the wrist and gently snapping it when tics (especially Tourettic OCD) became invasive. I recall my son finding it very calming, even though I found it strange at the time. The rationale in this research seems to offer an explanation for the effect. Anything that can relieve tics without medications is always worth investigating further!
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Just an FYI reminder that, in addition to the main Latitudes/ACN website that is full of valuable info, Stop Tics Today is an excellent resource administered by Sheila Rogers, with a stellar advisory board.
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So many people ask this question, and our admin Sheila Rogers has a really good article on the main section that covers a lot about TS & Tics. What is Tourette Syndrome? – A Comprehensive Overview If you have more questions, or comments, here is a thread for open discussion on this topic.
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Hi 🙂 I get PMs from so many members who are desperately looking for guidance on this challenging journey to help their children. Apart from being able to share some of my personal experience, and to suggest searching the many helpful threads members have posted here over the years..... I cannot think of a better #1 resource than everything that is on the ACN/Latitudes homepage at https://latitudes.org/ I found the original Latitudes magazine many years ago as a desperate mom seeking answers to help my then 10 yo son, who was diagnosed with genetic Tourette Syndrome with very severe tics & OCD, and was negatively reactive to medications. It was a turning point in our lives, and I will forever be so thankful to Sheila Rogers De Mare for providing a portal to research alternative ways of treating tics & TS, and learning about the many factors involved in why children may tic, that go beyond just "genetic" TS. Fast forward all these years and my 30yo son is doing so well, with a full life and good job, while also using his artistic talents as a singer/songwriter, and enjoying a thriving social circle (outside of the current Covid restrictions). These are things that I confess I despaired he may never achieve during those early years on the TS journey, and I honestly attribute so much of this to the insights and resources I discovered here at Latitudes. He is testimony to the fact that there is healing hope for even very severe TS & tics beyond pharmaceuticals! These days there is so very much more available at ACN/Latitudes to help parents looking for solid foundations to base their quest to help their child(ren) heal naturally. Sheila's carefully researched books on are an invaluable resource https://latitudes.org/store/ while the comprehensive menu of conditions, and therapies,as well as articles by many acknowledged experts in this field, contain a wealth of information. I am writing this post as a testimonial, as I hope that the many visitors seeking guidance on these forums will also explore the main website, and discover answers to help their children heal more naturally. I am still here after all these years to "pay it forward" for the invaluable help I found at ACN/Latitudes. My prayer is always that others will find that same hope and encouragement here.
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I know a number of folks with TS also struggle with OCD intrusive thought patterns, so am sharing this helpful video here as well:
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Hello! My son is 8 years old and has been experiencing a vocal (dry cough) tic for about a year now. We have been (like most I'm sure), just hoping it would pass. Over the past 3-4 months several other tics have come and gone, including a neck stretch and just recently an almost constant "f" sound...which sometimes he ends under his breath with the four-letter word. This has since passed and he says that he can now control that one. For me, this is was the most worrisome in terms of social situations and school. Anyhow, we have taken him to an allergist who did an entire blood panel on him and found an allergy to dust mites. We took all the necessary steps to making sure our house was mite free (mattress covers, removal of carpet, air filter, etc...) and the dr. prescribed an inhaler. After about 1 month of the inhaler treatment, we realized the tics were still there, so we then turned to a nutritionist who did an MRT food sensitivity test on him and we removed soy, egg, dairy, and gluten from his diet for about 3 weeks. Again, we didn't see much improvement...during this time, the cough tic went away, but the neck stretch tic emerged. I just took him to his pediatric doctor who mentioned Hazidol as a treatment and referred us to a neurologist. We are hoping to not go that route. I have the Natural Treatment for Tics book and have read it cover to cover. I would LOVE to take my son to a doctor like some of the other families have described, but I am just unsure about how to find one that is inline and has experience with the type of holistic approach we would like to continue to take. We live in Michigan and I'm wondering if someone has a recommendation for a naturopath or environmental doctor that might specialize in Tourettes and Tic Disorders. We are willing to travel and also live about 1.5 hrs from the Chicago area. Can anyone recommend someone that could help us? Thank you! This forum has really been a lifesaver on the many sleepless nights I have spent scouring the internet for answers to help my son.
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Anybody else's kid start with a dx of PANDAS at a young age and now meets criteria for TS? My son was dx with PANDAS at 2-3, after a months-long strep infection that refused to die until we had done 3 different oral abx, abx shots, and a tonsillectomy. Classic sudden-onset tics, OCD, anorexia, crazy behavior. We thought he was growing out of it (less frequent episodes, with less extreme behavior.) But now he's 8, and his (mild) tics have been present on and off for about a year, and in hindsight I've realized that what is likely AD/HD started creeping in last fall (yet to get an official dx). So far, I have yet to find a peds neuro who 1. accepts PANDAS as a legitimate diagnosis; 2. knows anything about PANDAS; and 3. is interested in figuring out the underlying cause of my son's non-stop tics rather than throwing him onto the neuropsych medication carnival ride. I just set up an appt with his ENT to culture his sinuses, since he has had recurrent sinusitis for years and I want to rule out an occult strep infection. It infuriates me that the PANDAS people are working independently of the TS people, when there's clearly similarities in presentation (albeit the etiology might be slightly different), and a growing body of research that shows that comorbid conditions are typical and not atypical of this population (OCD, AD/HD, anxiety, etc.). I've been told that TS kids' tics "wax and wane" (yes, I know that! but WHY????), that PANDAS and TS is treated the same way (NO, THEY'RE NOT!), and that there is no "cure" for TS (maybe not, but MY SON HAS PANDAS!). Grrrr... my mommy instincts tell me these MDs are full of sh** and my son's PANDAS is at the root of all this. OK, rant over. Anybody have similar experience and/or can offer any guidance?
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I am so glad I found this forum. I hope someone can help me with my quiestions. My 7 yrs old son has tics. They started as blinking when he was in kindergarden. Then they stoped for a while and came back when he started school. We hoped they would go away again, but the opposite happened. He now has other tics. He opens his mouth a lot, nearly all of the time. He rises his eye-brown, does someting with his head/neck and he makes an r-sound. We are trying to be gluten and milk-free, not using artificial colouring etc. He takes vitamines, specially magnesium etc. It doesen`t seem to help. Not so far. We are waiting for appointment with a doctor. But these last weeks he has been complaining about pain in his mouth, neck and upper back. This pain is really troubling him. I ask him if it`s real pain or if it`s just that he feels uncomfortable. He says it`s pain. It makes him angry and easily irritated. We have almost stopped doing homework because it`s to hard for him. It may be he find it hard to explain exactly what he is feeling. But is it normal to have pain because of tics? Is pain normal for people with Tourette? I wil be thankfull for any advice and answere to my question. Anne Linn
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Hello, I am new so first let me give some background. My seven year old granddaughter who I am raising has exhibited both motor and vocal tics since she was around three and a half. They were very mild for the most part and didn't become more intense until this past spring. This was not surprising since she has been diagnosed with severe pollen, dust and mold allergies and has been receiving neutralization therapy for the past three years. The allergy treatment has helped, but early spring is still a nightmare for her. The most difficult time for her when her tics are waxing is when she is reading. She is an active reader and is even well above grade level in her reading abilities. Sometimes her tics become so bad while she is reading that it is hard for her to continue. Once she is finished reading, her tics will return to their pre reading intensity. Obviously I am concerned that this will begin to affect her school work, as well as her love of reading. I have not yet scheduled an eye exam and she does not appear to struggle with vision problems. Has anyone else experienced this, and if so I would appreciate any guidance you could provide me. Thank you
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Does anyone have a good referral for a Dr. or Therapist in the Orange County or LA area? I am an adult who is 36 years old and have suffered from TS that has gotten progressively worse since I was about 11. I have read Natural Treatment for Tics and Tourette's by Sheila Rogers and consulted the resources for Doctors and therapists listed in that book and on this website. Unfortunately, I have not had any luck at all. In fact, many of the Doctors listed in those resources said they don't even treat people with TS, and some of them seem to be no longer practicing or I couldn't find a working number for them. It is starting to get pretty frustrating. Is anyone out there currently seeing a Dr. or Therapist for TS that they can refer me to? I am in Long Beach but I can probably travel anywhere within Southern California, preferable in the LA or OC areas. Any help would be GREATLY appreciated. Thank you all, I am glad I found this forum. CMonfort
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Eye rolling tic - advice please - desperate mom
JaneFBH posted a topic in Tourette Syndrome and Tics
Hello - I've posted here several times and got great advice with good results - for the past two weeks my DD's TS has reduced by about 80% and she went to school a full day for 4 days - a first since early January. Thank you! But now she has a new tic - the awful eye roll. She is so uncomfortable - headaches constantly, out of school 2nd day now, can't possibly concentrate on schoolwork. I read that eliminating dairy can help, as well as magnesium. She was dairy free but we had her on a Kefir probiotic drink and were getting lazy with dairy - having cheese, etc. So I cut that all 100% yesterday. Also started her on 1 tsp Calm magnesium. She had not tolerated this well before but trying again. Also has seasonal allergies that affect her eyes - the tic kicked in right when the pollen started. I saw lots of posts about dairy and magnesium helping - can anyone please tell me their long-term results with the eye rolling tic? How long after eliminating dairy did you see results? Did it come back? Please, any thoughts would be so helpful to me! Thank you! -
Hi there - would love to hear what people are doing regarding school. My DD is in middle school, so she switches classes all day long. She has a very hard time making it through the day. All the teachers and most kids knows she has TS, but she still is embarrassed and holds back louder tics then ends up doing softer, smaller ones more frequently, and then can't concentrate. She has a 504 and a modified plan where she can leave the classroom at any time and even does some half days to take the edge off. But it's still so tough. Thinking about home school/online learning but hate to take her out of the regular school setting. What do you all do? Does anyone home school? Special/private school? Would really love to know your experiences and what works/doesn't. Thank you!
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All the success stories and info about magnesium and diet changes are so incredibly helpful. Would you please let us newbies know approximately how long before you saw results with these regimens? Understanding every child is different, it would be so helpful to have a gauge of some kind. Also, did tics decrease then increase at times? I would expect that is to be expected. Thank you.
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I am really needing some advice specific to my DD situation. 12-year old about 85 pounds. TS with eye blinking, facial grimaces and vocal tongue-clicking tics. Started about a week ago on Kids Calm and Elderberry as a result of success stories seen on this forum. Also bought Natural Calm because KidsCalm is only 240 mg of Magnesium and Natural Calm (for adults) is 325. My thinking is that she is almost adult sized I would add 1 tsp of Natural Calm to Kids Calm to up the magnesium. Also bought Taurine which I am planning to add to the mix today. After almost a week I do see a slight improvement. Here's my questions - Do you think my plan is a good one for her weight and age? Can I give her more in a day? Have seen that it's OK to give more per day until you see that the stools are getting too loose. I am totally willing to try that but not sure if it is safe. Does anyone else have experience with Elderberry? Wondering if this is helping. Started both Kids Calm and Elderberry at same time. We have autoimmune issues so I thought it would help. Any thoughts on the Taurine? Does not seem to be included in KC or NC, yet I read it is important to properly absorb the Magnesium. Also had her on Nordic Naturals Omega 3 but stopped because Omega 3 is in the Kids Calm. Seeing a nutritionist this week, but wanted to get perspective from this forum too. Any advice would be greatly appreciated! Thank you all and thank you for this excellent, life-saving forum.
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Hello - does anyone know of any tic/TS support groups for kids in the northern NJ area? My DD is 12 and I think a support group could really help her. Anyone have a child around that age who would be interested in emailing with her? She is really into theater and singing, which strangely enough seems to calm her tics signifcantly.