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Chemar

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Everything posted by Chemar

  1. 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/
  2. 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
  3. 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?
  4. 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
  5. 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
  6. 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
  7. 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.
  8. Hi mlee Just FYI that this thread is from 11 years ago, in case you don't hear back.
  9. 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
  10. 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.
  11. 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
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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/
  17. 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.
  18. 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.
  19. Hi LW My son was reactive with increased tics to both dental work and anaesthesia (local, as well s general). That doesn't mean yours will be though, but that was our experience. It's tough because sometimes procedures are necessary and so we just have to cope the best we can.
  20. Hi Yes, Tourettic OCD was always one of the most problematic aspects for my son. The way it was explained by our physician was tics morphing into OCD and vice versa. My son did benefit from Cognitive Behavioral Therapy for this, along with his overall supplemental/nutritional/environmental protocol. Specific acupuncture and resonance biofeedback really helped as well
  21. Hello Our Integrative doctor recommended very low dose melatonin 300 MICROgrams after dinner. It really helped and we only needed short term use as my son's sleep pattern improved. But he was already 10yo so I am really not sure for a child of 5. If you used a higher dose, that may have been the problem? Our doctor warned us against Valerian for a young child although said ok for adults. Passiflora (from Passion Flower plant) is also used by some people, but again I have no idea re a very young child like yours. There are also soothing essential oils that can be diffused or in some cases applied (check first re application as not all essential oils can be used topically, some should only be diffused or inhaled. They can sometimes have a very soothing effect and promote good sleep. My son has always found an Epsom Salts warm bath very helpful for sleeping soundly. Chamomille tea is great for relaxing and sleep, and can even be used in infants from what we were told. I'm sure there are a lot of other natural sleep remedies, but those are some we found helpful. PS When there was agitation etc resulting from not being able to sleep, we used a few drops of Bach's Rescue Remedy (Flower Remedy) under the tongue, which is an instant calming agent, but again do check re age before use.
  22. Hi Chris and welcome. I am sure Sheila will respond as soon as she is available, but just wanted to mention that my son (now in his late 20s) did find tremendous relief for his OCD and related Tourettic tics from Jasmine Oil. My son was diagnosed 20 years ago with severe TS, had horrid reactions to assorted medications, but was greatly helped by nutritional supplements and dietary/environmental modifications along with acupuncture etc. Very interesting that you are seeing positive results with Essential Oils! I look forward to your future updates and hope things continue to improve
  23. Hi I found another that may be of help If you use the search function top right of the main page, you will find more threads as well
  24. Hi Pug There are also some threads on our TS/Tics forum that discuss this: Here is one of the more recent ones that may be of help to you.
  25. Hi wonderfulmom I am on my way out so can't post much, but did want to welcome you to the forum, tho sorry to hear of the reason that brings you here. If I can encourage you....persevere! If you find things that are helping, follow the clues. Same for things making tics worse. Keeping a journal, and noting these potential tic triggers was very beneficial for us. Do take a look at the pinned posts at the top of the forum as lots of helpful info there to.
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