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Everything posted by Sheila

  1. It is good to read that your son is so well rounded and socially is doing fine. Glad you can get a second opinion, even though you have to wait a few months. I have passed the video to a neurologist to see if I can get any feedback. Will let you know if I hear anything. In the meantime, it would be good to have your boy on as healthy a diet as possible (no artificial flavors, colors, preservatives--and low sugar--for starters) and in a "green" (natural--no scented products or standard chemicals in cleaning products, etc) setting at home if you have not yet done so. That's just some
  2. Hi blackwater and welcome to the forums. I will let others answer about approaches they have found helpful for the symptoms you describe. I just wanted to give you a link for all the effects that sertraline (Zoloft) can cause. Many people have negative reactions to it. Please see here. Also you may wish to look into an allergy connection to your movements since you mentioned sinuses. This book addresses that along with other issues. Read about the book here (it is on Amazon). I hope you find the help you need! Sheila
  3. Hi Suzanne, I know I replied this morning to the Shake 'n Vac post. You mention that your boy has horrendous tics "again" --he is now 9, When did they start and what happened? What is the date of the neurologist appointment? Is it coming up soon in December? Hopefully the doctor will do some blood tests and you could get a referral to an allergist or however things work there to obtain allergy testing. Also request if you he could be tested for a bacterial or vital infection. Generally neurologists do not look at immune issues but because of the PANDAS/PANS connection to tics, they are
  4. HI Charlton, Welcome to the forums. I'm sorry to read about your concerns with your daughter. Your detailed description of her issues is very interesting. It does seem that allergies are a significant key to her difficulties. This is a common link in kids with tics. When did you start all the interventions you mentioned in your note (nasal spray, changing diet, etc)? Have you seen any improvement from those yet? Did the pediatrician have any advice? You might want to contact this clinic to see if they have any recommendations closer to you. https://invitationtohealth.
  5. Hi lbass, I apologize that I just noticed your post. Welcome to the Forums. I think it is very good that you planned to see a pediatric neurologist. Can you please tell us how that appointment turned out? What was the advice? The motions in the video are not typical tics but we are not qualified to judge what type of issue it may be caused by. Sometimes kids do an exaggerated motion to cover up a tic. Again, it is hard to know what is going on from the video. We are interested in learning more and knowing how your son is doing. Please do let us know.
  6. Hi gladiator16, I hope your son is doing better today. You mention Shake 'n Vac, which I was not familiar with. To answer your question, yes it could be the culprit for your son's tics getting worse. It sounds like another dreadful product from Glade and marketed in the UK. Glade makes a range of scented products with ingredients that are considered toxic. The intent is to sprinkle it on carpets to "freshen" them up, and then vacuum the powder up. This is the description: "Keep your floors at their most lovable with Glade® Shake n' Vac. Eliminate deep-down odours on carpets an
  7. Hi EmilyGirl, welcome to the forums, and I'm glad you wrote. You have been through so much. It says a lot that you are willing to reach out. You have classic OCD symptoms and then on top of that, such traumatic incidents to deal wtih. No wonder you are exhausted. We would love to hear more about where you live, and what options you have for getting help so you don't have to continue to struggle with all of this. We are glad you do not intend to give up! Hang in there. It could be that a medical problem causes some of your fatigue and there is help for that. Please write back and tell us
  8. Hi and welcome to the forums. I'm sorry to read that your young child is having difficulties. We know that feeling of having no direction to turn to in how to help your child after a visit to the doctor, and hope you find answers soon. You have asked such an important question. There is not one perfect answer, as cases differ. But the Great Plains Laboratory has come up with a set of tests that you could consider. The lab can consult with the doctor/nurse if there are questions. You could review this list and see what seems to make a connection for you.Generally, insurance will cover some
  9. Hi -- TicHelper is an online program that focuses on behavioral training to reduce tics. This is their FAQ link below -- you will see that it costs about $150, and other questions are answered. I'm not sure if any of our forum members have tried it. Hopefully we will find out. tichelper.com/faq/
  10. Hi Matthew, Thanks for posting. it sounds like you have been able to figure out some of your migraine triggers. There seems to be a big overlap between things that trigger migraine and that trigger tics. Can you tell us what has happened with Cozy Shack puddings? I am not familiar with them, but when I went online to check their site there were several versions and I'm curious what is now a problem for you. What are the ingredients and for which ones? It might be helpful to others. Thanks!
  11. Hi Tayna, I heard back from the doctor who was monitoring results for LDA and Tourette's or tics. The answer was not very definitive. He said it helps some, and that people just have to try it to find out. So, I know that is not much help to you. Maybe someone who has used it will add to this.
  12. Good luck with finding what you need, argentanya.
  13. Hi argentanya, From what we understand the amount of msg in capsules is quite small. But that doesn't mean it could not cause a reaction. Do you always see the increase shortly after she takes them? What nutrients is she taking? You might want to experiment with finding supplements with vegetarian capsules. They are quite common now. Even some gel caps are now in a vegetarian capsule though they are not as easy to find. When supplements are in a powdered form, they can often be opened and put into vegetarian capsules like these on Amazon. Please let us know if any of this
  14. Hi tayna2001 -- I know this is a late response. Several years ago it was suggested by a doctor who had been monitoring results from LDA, which is short for low dose enzyme activated immunotherapy, that it was not as successful for Tourette's as for some other conditions. However, there is such a range of reasons that people have tics (as well as Tourette's) that I can't give an answer for this. Let me get in touch with a doctor who is very familiar with LDA and see what his answer on this is. I hope to get back to you soon.
  15. Hi mkwgbennett and welcome to the forums. I was waiting to see if any members had this experience with Zoloft before responding. But it did not surprise me when I saw your note. Zoloft is a drug that has helped many people but can also cause a range of unwanted neurological responses (among other types of potential side effects). It can also require care when weaning off of it. Take a look at this list of side effects linked below. It includes convulsions and "muscle spasm or jerking of all extremities." The incidence of convulsions is considered uncommon and the incidence of the jerkin
  16. Posting in case this hasn't been shared before: The Ruggiero-Klinghardt (RK) Protocol for the Diagnosis and Treatment of Chronic Conditions with Particular Focus on Lyme Disease Full online publication here.
  17. Key Takeaways: What can we do to step up our EMF mitigation efforts? What works better for parasites; natural options or pharmaceutical ones? How can we detoxify aluminum and glyphosate? What role do viruses play in chronic illness? What is Dr. Klinghardt's approach to treating Lyme? What are SIBO and MCAS and how to approach treatment? What probiotic may help with SIBO? How do we get more energy and a better functioning brain? Is copper toxicity a common concern? What diet is best for people with Lyme? Is alkaline water a useful tool? What type of bee venom is best?
  18. I'm glad there has been some relief at least. That's progress. Seems like it could be a good idea to see an ENT to let them rule out anything special going on. It would seem he/she could also make sure all the dirt is out and nothing else is aggravating things.
  19. Martin -- I'm so behind on these threads, I apologize! I'm trying to wind up a book on tic triggers and it has me very tied up. I keep thinking I am done and then something else comes up to delay it. I would not try to do an entire fast.The point of mentioning that was mostly because it was of clinical interest--it proved that diet made a difference. Dairy and wheat would be a good place to start. But also keep a log everyday. Someone wrote how corn was the worst thing for them. . . it is hard to know what the biggest issues are. But wheat and dairy are two of the most common, in ge
  20. Hi Ssonheim, I'm wondering how things are now--did they settle down as the cold hopefully went away? Or have the tics remained the same? Does the doctor think the nose/nasal yeast infection could be related to the steroid spray? Can you get her checked for a systemic candida infection? Maybe an antifungal medication will be called for -- a doctor could tell you. What is her diet like--that of a typical kid, or is she on a restricted diet of any type? For sure you can have hope that it will go away! Your instinct that it is not normal is correct. Just because it is common f
  21. Hi Moose_man22 -- I was waiting to see if anyone responded to this. I know some people have tried it and found it helpful. NORML is one of the best sites for marijuana information. This link talks about its uses for TS http://norml.org/library/item/tourettes-syndrome Of course the researchers only suggest it for "treatment resistant" TS, even though it tends to be safer than the conventional drugs used for TS and some would recommend that it should be a first line therapy, not after everything else fails. (Not that marijuana or CBD oil is without some potential side effects.)
  22. Hi NYDad, I hope the appointment is useful. With an environmental physician, they are often allergists and will probably lead you in the direction of what should be tested. (However, I don't know if this person is an allergist or not.) That said, many doctors now prefer ImmunoCAP testing or the ELISA test to RAST testing, even though they can result in false positives. Your doctor may have a particular preference. Some environmental physicians will rely on skin testing (different from the typical skin prick test) and that can often be very helpful. Approaches by functional med
  23. A parent sent a private message to me saying that her teenage son does not tic much when lying flat, "but the moment he starts to walk he will tic very frequently. Not sure whether it is body structure issue - spinal related or something of that sort. He has grown very much taller over the year." The tics in this case are vocal tics and shoulder shrugging. I've written to her to check this thread for a response. In case it may help, this is an excerpt from my book Natural Treatments for Tics and Tourette's: A Patient and Family Guide Gerald Erenberg, MD, advised ACN that when t
  24. Hi Sutjipto, I will try to get in touch with the Repreeve folks. They could just be out of town. So sorry your son is dealing with serious vocal tics. I will let you know what I find out.
  25. I'm glad you have areas to focus on--tinkering. I know it can seem like a full-time job. Camp cabins are often also musty and moldy, just throwing that out--though they may have been new, or treated for mold and hence toxic in that way. It's great you have preventive measures--and that he can go to camp. Please let us know what you discover, Tracy.
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