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Everything posted by Chemar

  1. 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.
  2. Chemar

    Incense & Incense Smoke

    Hi Martin I don't know if it was the smoke or the fragrance in it, but my son has never been able to tolerate incense He is very sensitive to perfumes etc and has a MCS (Multiple Chemical Sensitivity) diagnosis
  3. Chemar

    Looking for Insight

    You are very welcome Sarah. I know it doesn't solve the very real issues you are dealing with, but it certainly helped me have support from other parents who understood. I also wanted to point you to our "Useful Threads" pinned at the top of the forum, as you had mentioned wanting to gather some info when you see the neurologist. You may find some helpful ideas there. Our personal experience with conventional docs was sadly only prescriptions, and that really didn't benefit my son in the long run. It wasn't till I found ACN/Latitudes and started a different type of approach that we saw relief and improvement. Also do be sure to check the excellent resources on the main website here http://www.latitudes.org
  4. There are also numerous other resources on the Main ACN Latitudes website https://latitudes.org/
  5. Hi to all of our members this thread will remain dedicated to *only* posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL) Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion thanks for your help in putting this valuable resource together:) **Editing In: Editing In! Sheila Rogers has written some excellent resource books: >>> Natural Treatments for Tics & Tourette's: A Patient & Family Guide by Sheila Rogers http://www.latitudes.org/book.html >>> Tourette Syndrome: Stop Your Tics by Learning What Triggers Them https://latitudes.org/store/tourette-syndrome-triggers-book/ **Editing in that this thread is specific to tics and Tourette Syndrome and their related disorders We have a dedicated PANDAS/PANS etc forum here and all PANDAS related threads are now being moved there. That forum will also cover what was known as PITANDs, Lyme Disease and other infection related neurological conditions that fall under PANS http://www.latitudes.org/forums/index.php?showforum=17
  6. Sheila Rogers has written another excellent resource book: Tourette Syndrome: Stop Your Tics by Learning What Triggers Them https://latitudes.org/store/tourette-syndrome-triggers-book/
  7. Chemar

    Looking for Insight

    Hi Sarotchka I just wanted to let you know I doubt there is a parent here who has not experienced the heart wrenching you are experiencing. It is one of the hardest things to feel helpless when we see something is wrong with our child. If I can encourage you...my son was just 10 when his tics, OCD etc exploded with such severity that it was causing him injury, followed by him being put on a medication that made things so much worse that he ended up in hospital. However, things did improve even though yes, it was a long and hard road to walk with him, especially to control my own fears and stresses and just let him BE. But he is almost 30 now, and a wonderful young man who faces life head on, filled with great compassion for others who struggle in any way. To try to answer your questions It's always possible that there might be a PANS connection, but if his bloodwork and symptoms don't match, likely not. However you might also want to ask on the PANS forum to see what the more experienced parents suggest. Yes, low magnesium can play a part in tics. We noticed a remarkable improvement when we began supplementing my son's magnesium, along with the Epsom baths. Do note that magnesium oxide (found most frequently in supplements) is near to useless as it is very poorly absorbed. As far as your own stress goes....phew! As In mentioned above, we all know how hard that is to control. But we also know it is very important for a child with tics not to feel like they are constantly under a microscope as it definitely makes it worse for them when we are focused on their tics. It takes a lot of self control, and sometimes you just need to go for a walk or do something just for you to be able to decompress. I am a person who believes in the power of prayer, so for me that was a major "go to"! Also being able to talk to others who understood, even though their situations might not have been exactly the same. I was part of a Mom's group for kids with special needs and that really helped me a lot. Here is something written by my friend Lara that helped me put things into perspective. I hope it helps a bit for you too. ♥
  8. I am so thankful to see this policy statement from the AAP on the dangers of not only Food Additives, but the plastics etc that food comes in contact with! http://pediatrics.aappublications.org/content/early/2018/07/19/peds.2018-1408
  9. Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available. Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo
  10. Chemar

    L-Glutamine for Children

    Just a quick reminder that antibiotics are not considered a standard treatment for all kids who have tics. They are specifically used for kids who have tics related to PANS/PANDAS
  11. I am sorry I don't understand the question re "combinations"? Although the areas of expertise may vary, the essence of Integrative medical practice is the same ie to adopt a more holistic method than conventional medicine does, and to consider allopathic & naturopathic approaches to treatment. Some are also trained in homeopathic medicine, or other "complimentary" treatments. Often Integrative doctors will have different members in the practice that specialize in these. As with all physicians, there are some that are better than others, and so making sure they have experience in treating what you need is important. I have always asked a lot of questions when first contacting a physician's office to be sure they are what I am looking for. Hope that helps
  12. Hi mlee We have always tried to use Integrative doctors ie those fully qualified as MD or DO, but also with training in naturopathic/complimentary medicine. They just seem to have a more balanced view and that imo translates to a better form of healthcare. Thankfully there are growing numbers of Integrative physicians.
  13. Chemar

    Bad tics

    Hi Shelly I noticed you mentioned the underbite issue and wonder if you have looked into the tics that some kids have caused by TMJ problems. There are some threads on the forum related to a mouthpiece that seems to help some kids who have TMJ related tics. Try doing a forum search for keywords like TMJ mouthpiece tics or transmandibular joint and see if some of those posts sound like what you might be seeing with your child,
  14. Chemar

    Tic disorder with outbursts

    Hi Have you taken him to a doctor to see if there is any physical ailment that could be causing this? eg appendicitis or a possible digestive disorder? Even a food allergy eg to dairy or gluten intolerance or sensitivity reaction to something else could be causing it (environmental allergy?) I would definitely have his doctor check him out as this may be unrelated to the tic disorder and something that may need medical attention If you suspect PANS, here's the forum https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/
  15. Hi If you may be dealing with PANS where autoimmune issues can be underlying, then things that "boost" the immune system could possibly be causing that reaction? The fact that antimicrobials are reducing your tics might be indicative of an underlying PANS situation. Also, there are the flare ups associated with herxing/die off reactions. You may want to also ask on the PANS forum. https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/
  16. Hi Patty, Sorry to hear this reaction. I have no personal knowledge on TB skin test triggering something like this. I'll alert Sheila to your post as she may have info for you. It's good to see you again, tho sorry it is under this situation.
  17. Chemar

    New motor tics every year

    Hi there If the tic increase is linked to this time of year, could it possibly be seasonal allergies? Those don't always necessarily have a "stuffy nose" as symptomatic Has he had any allergy testing done?
  18. Supplements can impact different people so very differently (just like meds) so it's always hard to say. Our physician did say not to use it long term. My son was on it a few months. It really did help the vocal tics for him. It's an amino acid
  19. Hi The only thing that helped when my son was dealing with very loud vocal tics was L-Carnitine, as suggested by our physician.
  20. bumping up a new member post in case anyone can help
  21. Hi We had the same problem as my son has MCS (Multiple Chemical Sensitivity) CVS pharmacy has their own brand ibuprofen in a dye free version. We have always used primarily natural treatments of which some have antimicrobial properties and can help pain relief (eg Oil of Oregano capsules) Also white willow bark instead of aspirin, but be cautious if salicylate sensitive.
  22. Hi I moved it to PANS forum for you.
  23. Chemar

    Magnesium lotion

    Hi We used to rub it into the areas where tics were prominent. He especially benefitted from having it rubbed into back of neck and between shoulders. We used it when there wasn't time or opportunity for an Epsom Salts bath
  24. Chemar

    Magnesium lotion

    Yes, and yes We used Epsom lotion (magnesium sulfate) I think only Kirkman's makes it now. We used to make our own, then used Mortons! So sad they discontinued it.
  25. Hi I am sure Sheila will respond as soon as she gets a chance but did just want to say that the infectious disease specialist didn't give you accurate information. I am by no means clued up on it, and don't know what studies they were referring to, but I do know that kids with PANDAS/PANS can and do frequently have tic disorders as part of their symptoms, or as an additional co-morbid condition. That said, not every kid who exhibits tics has PANDAS/PANS. There are many varied things that can be underlying tic disorders, and they are not all mutually exclusive. That's why keeping a journal/log is so valuable in trying to find what sets the tics off, and what calms them. It may really be best, if you feel there might be a chance of PANDAS, or PANS, or at least want to rule it out, to see a specialist who actually knows about this and will run the kinds of tests that are documented. The parents on the PANDAS/PANS forum here might be able to give more info? I hope that helps a bit till you hear back from Sheila.