Chemar

Hi Sunflower78 So sorry to hear of what you are going through. As a mom who was in that same state of anguish almost 20 years ago, I absolutely understand. But I so agree with Sheila that you should not blame yourself. There are so many possible causative factors that can trigger tics. We can beat ourselves up, or we can focus on trying to find the best ways to make things better. It was thanks to Sheila and this forum that I was able to follow the latter course, and thankfully things started to improve for my son. In our case, my son does have a genetic TS component, but even so, many things we learned here made such a difference in helping to manage his tics. I do think your pediatrician may be way too quick to say Tourettes! Unfortunately many mainstream physicians really are not keeping up with so much info that is around about other possible tic triggers. I am at work so I can only do a quick reply now, but I would greatly encourage you to just start reading up on as much info here as possible and also on the main ACN/Latitudes website https://latitudes.org/ Sheila's books and articles have been a tremendous help to so many as well!

We found the best B6 to use was the activated P-5-P form. European Union countries outlawed the food dyes and other dangerous additives a while back! Shocks me that this country hasn't especially as natural food dyes do the job well without the danger! (eg beets, blueberries etc.) M&Ms in England have these natural colourings so there is no real reason imo that they can;t use them here too!

Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including chemical perfumed/fragranced items etc I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other artificial food additives.

Hi So sorry you are dealing with all this concern and uncertainty! I have always felt the so called criteria given may be far too rigid, especially as it seems there are many possible reasons for tics apart from TS, or transient & chronic tics. Here's an informative article on our website that helps to give a better overview: What Is Tourette Syndrome Many parents here have found that often some form of allergic reaction is causing their child to tic...either food or environmental, so it certainly is worth exploring if there are any allergies or sensitivities. There are also numerous known "triggers" for tics that parents have been noting for years. Our admin, Sheila Rogers, has written a very informative book on this https://latitudes.org/store/tourette-syndrome-triggers-book/ and also a more general one on Tics & Tourette https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ I am doing a quick reply to you from work so hope you will get more responses soon.

Hi Martin It does sound like something is triggering these reactions you are having. The fact that your Dad has had tics since childhood means you may have a genetic predisposition. Can you recall possibly having any form of illness or infection before all this started so suddenly? I know you mentioned moving to the UK, so obviously there would have been many changes in environment, diet etc...all of which can be triggers. Sheila has written a very helpful book on tic triggers https://latitudes.org/store/tourette-syndrome-triggers-book/

Hi Martin My son found it was much improved when he used a daylight lamp to watch TV, play video games etc. rather than a darkened room. The degree of "flash" coming from the screen seemed to impact.his tics most. Going to the cinema was worst in triggering his tics. Most modern TVs and computer monitors seem improved, being digital rather than analog Blue light blocking glasses can also be helpful for mobile devices and computer screens If you do a search here for "screens and tics" it should bring up a lot of info that others have experienced.

Hi mlee The yeast imbalance referred to is an overgrowth of Candida albicans ie candidiasis There are various ways of testing for candidiasis, from the non-scientific but interesting home "spit" test I see other "home tests" advertised on Amazon etc as well Blood, stool & urine testing can be ordered by a physician for the greatest accuracy. There are many websites with information & recommendations regarding Candidiasis. Just be aware, many are touting products as well which may or may not be effective! Here's one with good info (again check with your physician before just buying products that claim to "cure" ) How to Test for and Treat Candida Naturally

Here is the archived webinar for anyone interested who could not attend https://njcts.org/tourette-syndrome-help-control-your-tics-by-learning-what-triggers-them/

Just a reminder of the FREE Webinar tomorrow (April 17th 2019) 7:30-8:30PM USA Eastern time, with our own Sheila Rogers discussing: Tourette Syndrome: Help Control Your Tics by Learning What Triggers Them Hosted by the New Jersey Center for Tourette Syndrome Here's the link to register for the webinar https://register.gotowebinar.com/register/2536890380098133249

Hi Ashly Sorry no replies yet. My son's multi has always had some coQ10 in it, both when he was a child and now as an adult. But as he didn't take it as a separate supplement for anything specific, I can't answer your question directly, other than to say I know it is a very helpful supplement in general. How is it going on the CoQ10 for son?

Hi there I just wanted to welcome you to the forum tho sorry for your child's struggles. Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS

Hi starfish Sorry to hear of the setback, and do hope you find more answers, as well as that your son's system will stabilize again soon. I remember only too well how awful it was when the tics flared for my son after exposure to the yuck stuff! Once we learned that he had MCS (Multiple Chemical Sensitivity, diagnosed by an Allergist who ran excellent tests) he really understood why I was being so strict about the artificial stuff in food, as well as environment (one of his biggest triggers is perfume and regular household chemicals etc) Best to you

My son was never on clonidine but my husband, who also has TS, was given it for high blood pressure and it not only made his OCD much much worse, it made him a bit psychotic! Coming off it stopped those alarming symptoms. I know some people seem to tolerate it, but not my 2 TS family members

Hi there. Yes, I do think it would be a good idea to discuss this with your therapist as it may give insight and also be helpful for future therapy. And yes, having a major tic release after suppressing them at school or work etc is well known. It's important to have that release. Please don't think you are dumb and annoying! In fact, most people who have Tourette Syndrome are actually very bright and talented, they just often learn differently and need to find ways to cope with the symptoms. Here is some helpful info for you on our main website. https://latitudes.org/conditions/what-is-tourette-syndrome/ Do ask questions here and we can try to help as best possible. To encourage you, my son is almost 30 now and was diagnosed with TS when 10, and he has a great job, also loves playing guitar and writing songs and other good stuff. Explore your talents and things you enjoy! It really makes a difference in how you feel about yourself and life.

Hi mlee Just FYI that this thread is from 11 years ago, in case you don't hear back.

Hi joe_doc If you do a search on the forum you get assorted posts on Clerodendrum inerme, including more on where to find it https://latitudes.org/forums/search/?q=Clerodendrum

Hello Ashly Sorry you have not yet had any responses, and for the struggles your son is going through. I know you mentioned you had strep titres done, but other microbes can also be implicated in PANS, so it's beneficial that you have also posted on the PANS/PANDAS board There is also a lot of info on our pinned threads both here on the TS/tics forum and on the PANS forum as well as the OCD forum, and lots more articles on the website https://latitudes.org/ We found magnesium very helpful for tics Oral supplements plus transdermal by Epsom Salts baths.I have a thread from years back on what helped my son, but do remember each situation is unique so there may be issues mine had that are different from your son's https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I will try to check back later to post more or answer any questions you may have. My best to you.

Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS

Hi samz Sorry to hear of your son's struggles. I know nothing about sertraline so can't really comment re that effect, but thankful you have Sheila's book as a resource. Hopefully she or someone with more info will be able to post to you soon, but I just wanted to let you know you are not alone and that there is always hope in finding solutions.

Just a quick FYI to anyone reading here that Sirena & vvny have children dealing with PANS so responses may be different in kids that have tics for different reasons.

Hi shobo This might be a form of OCD (Obsessive Compulsive Disorder) manifestation? If so, CBT (Cognitive Behavioral Therapy) can be very helpful Whether these are tics or OCD symptoms, do remember that the more attention you draw to either can actually intensify them. I know it can be hard to "ignore" when something is drawing our attention in a negative way, but your wife is being honest when she says she can't stop doing those actions. Tics and OCD are involuntary. So my advice is to try to be understanding and supportive as that will make it a lot better for both of you.

Hi mlee I agree with Sheila's comment, and can add that my son had tremendous benefits from his nightly Epsom Salts baths. and when a full bath wasn't convenient, he would do the Epsom footbaths We always ensured he drank plenty of water, and never noticed any laxative effect from the transdermal uptake, just soothing of tics and muscles, and sound sleep following. Good to hear your child is also responding well to this.

Yes, there are numerous posts here related to screens and tics. Try setting your devices on the night light setting and even using computer glasses (you can get those unmagnified if you don't need glasses) It helps with the glare and flash that can sometimes trigger tics. Also search info on Irlen here. Daylight lamps used at night can also help. We focus mostly on natural treatments for tics and Tourette's here. Do take a look at out "Useful Thread" pinned to the top of this forum as you may get some extra tips to help in general https://latitudes.org/forums/topic/2459-useful-threads-info-for-tourette-syndrome-tics/ Our admin Sheila Rogers also has 2 excellent books that may be of help https://latitudes.org/store/tourette-syndrome-triggers-book and https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/

Just an FYI that if you search under chiropractor or chiropractic here on the forum you will find many threads with positive results. I have not heard chiros called functional "neurologists" but perhaps that requires different training? We have always used NUCCA chiros, and later also discovered how good Atlas Orthagonal is. It was not a "cure" for my son, but gave tremendous benefit in conjunction with the other treatment modalities we followed. It was also helpful in that my son's head/neck tics would frequently put him "out" and cause discomfort.

Hi mudhoney Sorry your post has not had any answers yet. I am bumping it up in case any other members from Australia may be able to help. Based on your descriptions of the separation anxiety and feeling ill, headaches, it honestly would be wise to investigate further to check if any infection connection (ie PANS/PANDAS) as well as allergies (food & environmental) etc If your child has had strep or possible other infections, you may also want to check ou PANS forum https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/ We found using Integrative physicians best as they have a more holistic approach (They are fully qualified conventional MDs who also have training in complementary/alternative/naturopathic medicine. Do also take a look at our pinned post with potential helpful info I hope this gives you some avenues to follow.