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  1. I am wondering if anyone has noticed an increase in eye/facial tics when their child is wearing glasses. My 10 year daughter has mild tics on a daily basis but when she puts on her glasses which she needs for distance although she likes to wear them more and more often because of the clarity - she has very strong facial tics. If she is watching a screen they become even stronger and include head and neck movements. She obviously needs her glasses (they have an anti-glare coating) more often than not and I don't know if maybe a tinted lens would be better. I would appreciate hearing your experiences and/or suggestions.
  2. Hi everyone. I've had TS + since I was 6 and I am now 43. I've tried every medication under the sun and now my tics are worse than ever. My OCD incorporates itself into my TS where I don't do the counting thing, but instead the 'how it feels/pain' thing. I am suffering from tremendous pain as well as so frustrated that I can't stop that I'm beside myself. I've just recently discovered that food as well as other things like chemicals, etc could be make tics worse. My allergist has tested me for trees, wasps and bee's. The only food testing that was done was on crab and lobster, though. So, because of what I have been reading I want to be able to tell my allergist what I would like to be tested for to further rule out things....Any suggestions would be greatly appreciate at this point as I am at a loss for what to do about my ticcing. (I have also tried the Magnesium Taurate, but it made me sick) Thank you a head of time for any responses and I'll apologize now for all the reading. <3 *J*
  3. This may or may not help anyone else but it certainly worked for our 10 yr old son, who developed facial tics around the eyes about 6 weeks ago during summer travel. No idea what caused it but here is what we did to address them. This regimen started in Week 2 when he got home. Improvement started showing in Week 3 and his tics completely stopped in Week 5. Reflexology everyday Back and head massages right before bedtime everyday Acupuncture once a week for two weeks Open air sports activities everyday 2 times a day- fruit juices mixed with multivitamin powder (for B complex) and magnesium citrate powder. Best to research appropriate dosages Hope this helps.
  4. I gave my son first dose of candex mixed in yogurt this evening as oat test showed high yeast. He has woken up in the night crying with a new sniffing and coughing tic. He has never done this before and is crying as he cant sleep. Have I made him worse forever? Is there anything I can do?
  5. Gave my son first dose of candex mixed in yogurt this evening as oat test revealed high yeast. He has woken up in the night with sniffing and coughing tics that he has never had before and definitely never woken in the night from.have I made him worse forever, I don't know what to do to help him. He cant sleep and is crying from feeling so uncomfortable. I wish I had never given him the candex.
  6. Hi all. Thank you for this valuable and comforting resource. I've read many of the articles and discussions on the board - along with the book - but couldn't quite recall a certain type of information. Quick background: my 6-yr old son has developed a series of increasing complex and disturbing tics. From sniffing to throat clearing to blinking to head/neck jerks. Sounds very familiar to many postings on this site. We're testing blood and urine through a local environmental physician, are supplementing fish oil (1300 mg) and calcium/magnesium (just low level supplementation at this time), and have removed gluten and dairy from diet as an initial experiment. My son seems to awake with a fair amount of blinking and head/neck jerks ... by the time we're ready to leave for school he's 80% better ... he'll start to get worse just before dinner time and is quite bad by bed time. The house is relatively low stress, minimal tv, no rugs, very clean, unscented everything. Questions for the community: I'm sure our experiences will be quite ranging, but I'm curious as to how quickly you're seeing increased tic levels once exposed to a trigger and how long increased tic-ing usually lasts? Do you see immediate reactions to a trigger? Or does it build over a period of time? If over a period, how long a period have you noticed? hour ... few hours ... days.... ? Is your experience different for environmental triggers as compared to food-related triggers? Once the trigger is removed, do you believe trigger-induced tics decrease over the course of an hour, a few hours, a few days? We're trying to think through potential triggers and all feedback would be most welcome. Thanks. Mark
  7. 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 in the kitchen. B/c of the word 'foot', he had of series of tics - a couple of kicks, swearing, yelping. This happens EVERY time he sees something he "doesn't like". Driving by a billboard advertising a pedicure - tics. Blowing my nose - tics. Joking around and he drools while laughing - tics. A fly on the porch - tics. Learning the digestive system at school - lots of tics. The neuro that we see says it's like a psychological thing. The psychiatrist who assessed him couldn't categorize it into anything; she said 'unspecified anxiety disorder'. Almost a phobia, but not really a full on phobia b/c he can control the tics better when he's at school. Is there something he is lacking? a supplement he should be taking? He's on abx (azith and herbal) and he takes magnesium. I was thinking about trying niacinamide as I've been reading about how it's calming and can also help tics. Any suggestions? Thanks for reading.
  8. 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.
  9. 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 pus aspirated from one of his maxillary sinuses. We thought some of the eye irritation was due to that. In hindsight I think most of these were tics all along with the sensory feelings of itching and burning being part of it. He now has a nose twitching tic and opens his mouth wide as well as still odd eye tics. He says his nose itches (he has no allergys) and his jaw feels 'funny' so he has to move it to make it feel right again! I do try not to mention them but he does talk to me about them sometimes especially when a new or particularly bothersome one appears. I just reassure him it's ok and he's perfectly normal whilst inside I feel so sad about it all. In every other way he is fine, no OCD or anything like that and is doing well at school although other kids are starting to notice it. My biggest fear is he will be bullied for it - you know how cruel kids are. Apparently his dad had some tics growing up as his mum remembers him touching his nose all the time. I am in the UK and just wondered if anyone has any advice? He sees a neurologist next Friday just to rule out any underlying reason for the tics and to hopefully confirm what we think is happening. I am so worried he will always be like this as it's been going on so long with no respite from them, they never go away not even for a few days. They do wax and wane though and he is bad at the moment. I haven't known him to have any obvious vocal tics so am hoping he may not get those as they will be even harder for him to live with. I guess I just want someone to say it'll be ok and he will grow out of them! Any advice will be much appreciated 😊
  10. 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 a fever of 107 at the age of 2. My question is, does anyone know if antibiotics could help an adult who possibly has PANDAS untreated? I have tried countless treatments and therapies and medications for my OCD and anorexia and nothing has helped. I feel like things just keep getting worse, and I just want some relief. I remember being totally fine as a child, and the one day waking up and feeling like my world turned upside down and had no idea why I was doing the things I was doing. This happened with the OCD and Anorexia. No previous implications of it, just literally overnight. Does anyone know (or suffer themselves) and are older? Is there anyway to know if it's PANDAS even though I am older now - symptoms never got better over the years, only worse. And of course al ldoctors do is just push this SSRI or that SSRI. I'm worried it's too late in the game to test for anything or possibly treat it. It wasn't ever a known thing when I was younger, and I've even tried to bring it up to doctors now, but I'm just looked at like I have 10 heads. I just want to be okay and recover from these horrible symptoms that didn't plague me for years. If anyone has any words of support or anything they could offer/advice/anything at all - it would be greatly appreciated. I feel like I am trapped in my own body and have been for years. Thanks everyone.
  11. 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 neurologist two weeks ago and he said 20-30% chance of mild Tourette's. Our world has been turned upside down. This has been the hardest thing we've even been through. The doctor recommended the Paleo diet, no gluten, no dairy, no eggs, no artificial flavors, no sugar. We've been following this about 90%. My daughter ate normally yesterday (Thanksgiving) and has had two birthday parties with cake. She does have milk with cereal (we are trying to get her to like almond milk). I am also giving her B complex vitamin, Magnesium Taurate (250 mg) and Tic Tamer. Epson salt baths occasionally too. These modifications have been going on for two weeks (some are newer like the Tic Tamer and Mag). We've seen some improvement. I'm wondering how long it takes to see more improvement? Can someone recommend other things we should do? It's so tough. I try to take it one day at a time and not worry too much. We have no family history and she doesn't have any other things going on. Please tell me that time will help all of us. Oh, and to end on a positive note...my daughter has not been bothered by any of this at all except for the diet changes. She's perfectly happy and I'm praying it stays that way.
  12. 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 and into the bowel? It was possible that very little was making it into the bowel. At the end of their appt, Dr P told the mother to go to the pharmacy that day (they were scheduled to return to Canada the following day) and get an enema. He instructed her to add 6 caps of probiotics to the enema and administer it. Fortunately, the 13 yr old was open to this since he was not finding help elsewhere, and was grateful that Dr P was thinking outside the box. Dr P said conventional medicine's answer to a tic disorder would be to prescribe Haldol or another antipsychotic drug. The next morning, the mother called Dr P at his office and told him that after administering the probiotic enema the night before, her son's tic disorder had stopped! The 13 yr old continues to administer daily probiotic enemas to himself with up to 12 caps of broad spectrum probiotics per enema. That is quite an amazing testament to the power of our immune system in our gut! Dr P said that when recovering from any disease/illness,especially inflammatory conditions and autoimmune conditions, we should focus on restoration of gut bacteria." "Dr P also told about an MS patient who had a gait disorder and also had one pupil that was larger than the other. This person had a history of Lyme disease and had taken lots of antibiotics. The patient had 6 fecal transplants. After the fecal transplants, the patient's gait and pupil became normal! Dr P said the gut wall lining is only one cell thick and mediates what gets in and out (intestinal permeability or leaky gut)."
  13. 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 and head jerk tic. This tic is now back with a vengeance, the head herking can be quite vicious. I have no idea why this has returned. His diet is good, no junk, he has had acupuncture with little effect. Normal EEG. Am desperate. My son only turned 5 in August and this is breaking my heart. I currently give him Saludynam (mag/zinc/cslcium/vit D) and Kindervital multivitamin. Any help in how to alleviate these tics would be much appreciated.
  14. 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 where avoidance used to work before, we now are at a standstill. I am in the midst of trying a gluten-free and casein free diet, but am not sure it is helping, and am not sure how long to keep going with it. With the understanding of the effects of pesticides on tics, does anyone have any knowledge on the effects of going on a purely organic diet? Successful? Not? Thank you so much in advance! Sandra
  15. 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 products to clean the carpets while we are traveling outside the country. I am researching to buy allergy proof products to better the environment at the bedroom. 1) What brand of air purifier do you recommend that is HEPA filtered and free of ozone (ion generators)? I read someone use rabbit air. I hope to use sth that is easy to move around from room to room and effective to cut down mold and dust and dust mite in the air... 2) Which website do you order allergy proof pillow and bedding etc from? Should they be cotton? My son will see a allergist, hopefully he will test him for allergy to dust, dust mite and mold and food in Sept. Thanks. Barb
  16. 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 working number for them. It is starting to get pretty frustrating. Is anyone out there currently seeing a Dr. or Therapist for TS that they can refer me to? I am in Long Beach but I can probably travel anywhere within Southern California, preferable in the LA or OC areas. Any help would be GREATLY appreciated. Thank you all, I am glad I found this forum. CMonfort
  17. 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.
  18. 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, this website and you people that are sharing expriencies here are tremendous helpful
  19. 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/or digestive enzyme that they recommend that is either a liquid or some other form? Also I have not explored taking something to combat candida/yeast which she does have. Any recommendations? I have been adding one thing at a time because her anxiety increases with each additional "thing" she must take. Thank you ALL - this forum has been a lifesaver.
  20. 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.
  21. 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 night. fear of getting locked into a toilet -never has done- fear of going anywhere in an aeroplane - last trip was 3 years ago. nightmare - sore ears. silly goofy behaviour at times. social anxiety . cannot enjoy parties where there may be dancing- self conscious. fear of Santa and def fear of the tooth fairy. Writing lists - Names, car registrations - all the names of moshi monsters Xmas 2013. I always reckoned these issues were worse when she was sick - on an antibiotic or fever med - actually i put it down to colours in the antibiotic - yellow - amocicillin usual one .She has had tonsillitis frequently as a young child - def around the time of our first family holoday - she was about 3 year old. Def worse behaviour during breaks from school - much more anxiety, so much so I could not wait for school to return - ( DD8 had antibio at 3 weeks for excema on face) Enough said. DD6 is showing similar symptoms- JAn 13 - cough sniff tic - lasted about 3 weeks - i think - I forgot about it. wasnt overly concerned. Gran was dying during this time and i think I attributed it to stress in the family. I think at some point during that year OCT ?? I saw an increase in adhd type behaviours- - aggressive to younger dd3- out of character and my immmediate reaction was - someone must be bullying you - sure enough - a little boy was doing some minor things - making faces etc. spoke to teacher - moved the little boy and i thought things resolved. ( by the way dd6 had excema - 90% clear since last NOV. However has had a chronic cough since then and always gets same between NOV and April on and off. has been on steroids once and anti bio once but didnt really help - Ps DD6 had antibiotic at2 weeks for cough. Roll on Feb 12th - I was off with tonsillitis - DD6 began tic around week later? sniff cough comes back - a full year later - with hyper behaviour- and a constant looking for sweet stuff, biscuits, anything with sugar- Im thinking she has diabetes ?? While watching her one day recently I noticed - lots of twirling, shoulder shrugging, fiddling with her hair - knotting it ( fear of getting nits- big campaign recently in school re nits) writing a list of what way she would tie up her hair on a daily basis- constant need to hug me when im leaving or she's leaving. hoarding - lots of stuff under her pillow - which she refuses to remove - she lost a tooth on dec 24th 2013 and another beginning FEB- She has had about a full month of having trouble passing faeces -constipated ON DEC 31st spent one hour in the toilet , crying and trying to go - eventually did - but the fear has not gone - and had many accidents during JAnuary as a result of leaving it too late. Now she goes but requires me to be present in case she has trouble - dont know about her having infections - or strep - was called to school in Dec as she had a high temp but nothing materialised. DD3 had tonsillitis of very bad throat on DEc 7th - My DH had history of tonsillitis as a child - I never got tonsillitis until I was 21 - my twin did tho- But I was always a worrier - unlike my sister - so I UP UNTIL NOW JUST THOUGHT I AM REARING DIFFICULT ANXIOUS KIDS _ am I though? I am a teacher and pretty au fait with kids behaviours but feel I am failing with my own - sometimes I dread the thought of going home - what behaviours dd8 would be displaying- on sat night she said - I wish i wasnt in this world - now she did not really understand the concept of what she said - but it was a reaction she had to a hard day she had had at a a friends party - she cannot deal with rejection - even minor falling out with friends - takes it so much to heart - Im never going to speak to her again - shes so mean". Please advise - should I be looking for help ? I know others have more difficult cases- I feel I am just about managing these behaviours - but should I be - just about managing - My close family reckon - they are attention seeking kids- they have me wrapped around their little fingers- and manipulate situations to get what they want. There is probably an element of truth there.. Any advice appreciated - PS I am in UK/ IRELAND
  22. 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 GABA. I'm interested to hear if anyone has tried these, with success or not. Thanks!
  23. 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.
  24. 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.
  25. 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 improvement. Here's my questions - Do you think my plan is a good one for her weight and age? Can I give her more in a day? Have seen that it's OK to give more per day until you see that the stools are getting too loose. I am totally willing to try that but not sure if it is safe. Does anyone else have experience with Elderberry? Wondering if this is helping. Started both Kids Calm and Elderberry at same time. We have autoimmune issues so I thought it would help. Any thoughts on the Taurine? Does not seem to be included in KC or NC, yet I read it is important to properly absorb the Magnesium. Also had her on Nordic Naturals Omega 3 but stopped because Omega 3 is in the Kids Calm. Seeing a nutritionist this week, but wanted to get perspective from this forum too. Any advice would be greatly appreciated! Thank you all and thank you for this excellent, life-saving forum.
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