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  1. I just want to know if anyone else's child has these weird triggers. Please note my son has Lyme and PANS, and pretty much his only symptoms are severe motor/vocal tics. My son's tics are triggered sometimes by certain words/ideas (feet related, insect related, bodily functions, 'gross' things), the sounds of people coughing/sneezing/blowing nose, the sight of the above mentioned things (can't look at feet, bugs, etc). They *might* make him feel anxious, but what happens is that he has a big tic or a series of tics. For example, yesterday I asked him not to "get underfoot" when he was i
  2. Our 13 yr.old son has demonstrated various tics since he was 3. It is getting worse and worse with each year despite our efforts of going all organic in terms of food and the living environment.We urgently seek help from an experienced practitioner so if anyone could recommend a doctor-Environmental or Integrative one, we would greatly appreciate it! Many thanks in advance for your help.
  3. Hi, I'm new to this site and am hoping someone can help me. My son has just turned 10 but has suffered from what I now realise are motor tics since the age of 4-5. It took a while to get to this realisation as it started with his eyes burning and itching following a nasty pseudomonas eye infection to which he would then respond by eye rolling and excessive hard blinks. He was checked out by ophthalmology and they could find nothing else wrong once the infection was cleared. This went on for a few years and then some other tics appeared. He also has been under ENT as he had sinus issues and had
  4. Hi there, I am a 23 year old female. I've been doing quite a bit of reasearch on PANDAS lately, and everything is just pointing to it. I developed a sudden onset of severe OCD at the age of 10, followed by a sudden onset of Anorexia at age 15. I also had PLMD at age 16. And at age 21, I started getting tic like sypmtoms and body movements (I'm not really sure if they were present when I was younger as well). As a child, I was in the doctor's office almost every month getting a throat culture for strep or had some sort of ear infection. I was sick quite often as a child. I even remember having
  5. My daughter is 8 and started blinking quite a bit last January. I'm not sure how it lasted but I'm thinking less than a month. This happened again a few months later. Each time we thought it was something with her glasses. About a month and a half ago (I think) she started scrunching up her nose. Sometimes it would happen at the same time as the blinking. It started to get constant and I was freaked out. My pediatrician didn't seem to know tons on the topic and said it was probably just transient tic disorder, don't worry, etc. Well, we ended up seeing a highly-regarded pediatric neuro
  6. Copied from another forum: "I was listening to Dr David Perlmutter's amazing talk on the Autoimmune Summit today. (His talk is available for free until Mon 11/17 at 10 am eastern time...here is the link: http://autoimmunesummit.com/david-perlmutter/ He shared about a 13 year old male patient he had from Canada with a serious tic/movement disorder. Dr P took a good history and noted that this boy had lots of infections and antibiotics at a young age. His mother was already giving him probiotics, but Dr P wondered just how much of the probiotics were actually making it past the stomach
  7. My son started eye blink and head jerking tic in March this year. It started following an ear infection in Feb, followed by chicken pox, followed by another ear infection treated with antibiotics. Since then he has had many tics including scratching, picking nose, nail biting, sniffing, facial grimacing, burping. I live in the UK, and getting any help has been difficult. I tried to investigate PANDAS and saw a paediatrician privately who did a blood test (aso titresi think) which came back negative and he basically discharged us. I have cut out tv/vdu which initially helped with the eye blink
  8. Hello, I am new to these boards, though I have been a fan of Sheila Rogers for many years after reading her book Natural Remedies for Tics and Tourette's. I have yet to post our full story and will do so soon (it's a long one!), but I have a quick question for anyone who can help. My daughter, 11 yrs old, has had tics on and off for years, but over the past year or so they have exacerbated, becoming more frequent and more extreme. I know for sure that she has some environmental triggers (colouring, fragrance, chlorine just to name a few). We have been avoiding all known triggers, but w
  9. My 5 year old son with tics always wake up from his bed sniffing, saying his nose is dry the past few years, despite what season it is in NJ. I was very ignorant not thinking there is anything wrong with the environment until now we knows he has tics disorder. He also often tell me his nose is stuffy when he lie down before falling asleep. Now I suspect he may be allergic to the air inside the bedroom, maybe dust mite, dust, anything in the air... We have carpet that haven't been cleaned for 5 years-- I know it is terrible!!! My husband has scheduled someone to use organic green product
  10. 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 wor
  11. Ugh. Need to vent. DS' new tic these past three days is screaming at the top of his lungs. Makes driving with him a rather harrowing experience. I'm hoping this doesn't last long. I thought the loud whistling was bad but I'll take whistling any day over this.
  12. Hello everyone, I will be brief so you can read me without get bored. I am 22 years old, had been with OCD and motor tics from 8 years old approximately, this tics are all about crushing joints and jaw clenching (my social hidden tic) I live in a shitty comunist country, I am sure I know more about tics that doctors here I don't want to get drugs, I am convinced to fight this from a comprehensive way Supplements will be one of this ¿could you people help me with main and basics must I take? ( I will buy each one for separately because my country condition ) Thanks for all,
  13. Hello - My DD age 12 has TS, including a screaming tic. Confirmed malabsorption and gut issues. We seem to be having some success with a regimen of 100% Gluten-free, 90% dairy free, moving toward GAPS diet, non-GMO, Young Living essential oils (massage and diffuser), 500 mg of Taurine, Therbiotic Probiotic and digestive enzymes with some meals. My problem is she dislikes taking any supplements - even chewables. The probiotic and enzymes are chewables that she will only take mixed with yogurt - which is dairy and sugar! She will not swallow pills. Does anyone have a probiotic and
  14. I am a new member to the forum. My daughter is 22 and has a diagnoses of facial tics since toddler age. Her medication she is on is not working for her and looking for something to help control them. I was wondering what others take for their tics? She is currently on tenex. I am happy to find this forum so I can educate both of us. We kind of just accepted it because her dad suffers with them.
  15. Ill try to be brief.... DD8 referred by regular MD to CAMHS at age 7.5 for anxiety and other behaviours- fears, auditory hallucination About 3 times in 3 years), separation anxiety - mild. emotional lability {sp?} Most of the time seemed sad- worries of the = world. Behav = need to be bearhugged, skin itchiness ( no excema), hanging upside down off the sofa / bed. climbing the kitchen cupboards looking for treats- a need to be ' up' high - hence the climbing. fear of someone outside at night, fear of the house alarm being set off by younger siblings wandering to toilet in middle of nig
  16. So after reading llm's post about the antibiotic that can remove excess glutamate, I am even more confused about the whole glutamate/GABA thing. I had been thinking about GABA supplements for DS because GABA is calming and his PANDAS symptoms are fairly large/prolonged motor tics and vocal tics. But now I have read that GABA and glutamate and glutamine all get converted to one another, so giving a GABA supplement wouldn't do much if it just gets converted into glutamate anyway?? Is it better to try l-theanine instead? I have read that it gets converted into calming substances such as GA
  17. 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.
  18. I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving. Isn't low zinc implicated in Anorexia and OCD? What are your thoughts? Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.
  19. 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 impr
  20. 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.
  21. Hello Friends, There is no time or energy to revisit our 4 year history on all the things we have done up to this point. We do know that we have moved from plain ol' PANDAS to PANS for the last year. Our DS14 is doing very well compared to the overnight dysfunction 4 years ago. I was thinking about ordering 23 and me as our next step. DS14 still has OCD, ADD, and also added vocal tics last year with the lovely Coxsackie Virus. His OCD and ADD used to be a 10 on a scale of 1-10, but seems to be manageable at a 2 or 3. So, life is manageable for him and no longer torturous. The tics seem
  22. Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet a
  23. Hi Everyone. So glad I found this forum. My son's first tic started when he was around 5 - he is 9 now. There are many contributing factors that could have triggered the onset. We suffered from longterm exposure to carbon monoxide and after 7 mos. of the exposure - right before we found out we were being poisoned - his tic started. He also had swine flu and tamiflu months before...so who knows..it was all too much on him. We've both suffered lifelong damages from the exposure - but it's too much to explain here. His tics used to happen every 6 mos. in the beginning after the first one - last a
  24. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mo
  25. My 9 year old son woke up complaining of serious neck pain. Within a few hours he developed a neck tick followed by eye roll.. He has suffered from various tics for years. Has had neck tics in the past. I'm wondering if the neck pain triggered the recent neck tic or the tics triggered the neck pain. I'm hoping when pain subsides the tics will wane.
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