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  1. Hi everyone and anyone My 5 year old son has been experiencing both verbal and motor tics on and off for 1.5 years. Each time, just as they peaked, they quickly went away. However a new "episode" started 1 month ago and the tics have been more frequent and more aggressive. We have seen neurologists and had basic allergies tested (he has anaphylactic allergies to ALL nuts and seeds). We are desperate to find an environmental physician or any expert who can help us find possible causes and triggers, anyone more learned than me. I have spent days and weeks reading everything i can find on th
  2. Hey all, Just a quick question regarding the nature and scope of tic behaviours, and their necessity to making a diagnosis of PANS/PANDAS. With regards to possible movement disorder, over the years I've exhibited a few embarrassing behaviours (mostly self injurious) such as hand biting and clenching the muscles in the throat. I've heard that the distinction between stereotype behaviours and tics are that the former are more habit forming and suppressible, and the latter have the quality of a preminotory urge and are only temporarily suppressible. Another troubling episodic sympt
  3. Hello. I recently took my 11-year-old son to the pediatrician for OCD symptoms. The doctor put him on 25mg of Zoloft and three days later he is experiencing severe abdominal tics. Has anyone else experienced this? Wondering if it is caused by the Zoloft or is secondary to the OCD. I tried calling the Dr 3 times yesterday and my calls were never returned. I will be changing pediatricians after this experience, but I have no idea whether to leave him on the meds or not. We've never dealt with tics before....
  4. I have been lurking around these forums for about 10 months now. I just signed up now because I wanted to report our experience using Repreeve. I guess my story is no different from anybody else's here. To summarize it is a story of misery, desperation, helplessness, worry, but also determination and perseverance, driven by the deepest love for my DD (who just turned 10). She started having very mild tics when she was in kindergarten. I was sent home multiple times by many, many doctors. She started getting worse in April (2015) when she was 9. She had different tics that continually changed
  5. HI all, I have a fifteen-year-old daughter who has periodically suffered from an eye rolling tic since she was about 6-7. I learned early on that l-carnitine will stop it within a couple of days so it has never been a big issue for us. Every few years it comes back, we give her l-carnitine and that's it for another few years. This last time it came back, however, the l-carnitine hasn't helped. I suspect it's because she needs a much higher dose than before because she has grown so much, but I'm struggling to find the correct dose. She's already up to 4000 mg per day and I'm kind of ne
  6. Hi, I posted in the Tourette Forum but haven't heard anything. DS17 has PANS and an underlying TS dx (we think). Tics more or less controlled w/PANS treatment and 2 IViGs, but has remaining loud yelling tic (screaming one or two words, sometimes coprolalia). We are wearing earplugs. Do we just live with this, or is there something else to try?? He's already been on almost every psych. med, still on some, also on Functional Medicine regime for PANS with enough supplemnts to choke a horse. Has CBT therapist. -Has not tried L-carnitine or taurine, which I saw mentio
  7. I'm 20 years old and I've had OCD accompanied by tics since I was a little kid. The OCD symptoms have subsided over the years and now almost entirely consist of tics. The main two tics are jaw popping and blinking. The jaw popping can be really bad to the point where I either clench my teeth, bite my cheeks, or simply don't open my mouth for fear of popping my jaws. The blinking is almost constant and is mainly in one eye, but either ways it makes it hard to drive and I've recently noticed my vision becoming blurry which I can only imagine is from the constant blinking. The two tics alternate
  8. My six-year-old has been blinking his eyes on and off since he was two. Of late, he started stretching his neck, blinking from what was once in a while to every two seconds, and grimacing with his right eye and cheek. Except from this strange throat clearing thing he only does as he wakes up and goes to sleep, he doesn't have any verbal tics. We have him off gluten, artificial sweeteners/colors, and have drastically reduced his TV-watching time for one week so far. We've noticed a bit of improvement but his tics seemed to have spiked up as of yesterday. We want to run the tests that Natural Tr
  9. 7 year old began showing tics of licking hands the same day he was positive for strep on 12/3. Prior to this he had no problems and was functioning well. He was treated with antibiotics for 10 days and it didn't improve his tics, his rages, over activity, sleep problems, difficulty with school work. He saw a neurologist and began a 5 day steroid burst and was started on 30 days of antibiotics. He is now on day 10 of the antibiotics. He seems to be better with his mood and rages are almost gone, but his activity level is still up and most disturbing is that his tics seem to be increasing n
  10. This is my first post and i rly need help so plz answer if you can:) I apologize for the sexual content... I have a tic syndrome characterized by a bunch of complex motor tics. These usually get worse at night or when i am alone. I am currently taking no treatment or medication for this because i believe i can manage to live with it (I also have ocd, add and posibly ptsd) However there is one thing that really bothers me and I'm not sure if its a tic or some sort of sexual dysfunction. What happens is this: countless times a day at home, outside, at night, in the day i feel an urge to
  11. Hi there everyone! I'm so happy to have found this forum. I have an 8 year old son who has had tics on and off since about 3 years old. He doesn't fit into the Tourette's diagnosis and I was always told by his Drs. that he'd grow out of his tics, but they're still here! He's had strep a few times and I'm taking him to the dr. soon to talk more about PANDAS. My question is: He has taken antibiotics a couple of times since the tics started, could it still be PANDAS? I don't know if some antibiotics only target certain areas or if any antibiotics that he's taken should have wiped out th
  12. Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay: Posted Yesterday, 08:48 PM First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still
  13. I just wanted to share what we've discovered with our 8yr old son. My son has had these type symptom during allergy season but not as intense as this year. WELL this year we started giving him Allergy Immunotherapy drops and his symptoms increased majorly. I've referred to it as OCD but honestly its a mixed bag of OCD, vocal tics, stimming/sensory stimulation. I connected the dots and had his histamine tested. Mind you, he had barely any noticeable symptoms. Occasional sneezing or cough. His histamine levels were 4x the high normal. Histamine is actually a neurotransmitter and can cau
  14. I am so glad I found this forum. I hope someone can help me with my quiestions. My 7 yrs old son has tics. They started as blinking when he was in kindergarden. Then they stoped for a while and came back when he started school. We hoped they would go away again, but the opposite happened. He now has other tics. He opens his mouth a lot, nearly all of the time. He rises his eye-brown, does someting with his head/neck and he makes an r-sound. We are trying to be gluten and milk-free, not using artificial colouring etc. He takes vitamines, specially magnesium etc. It doesen`t seem to he
  15. Hi everyone, I have had tourettes since i was very little, and I'm now 23. I have been relying on meds mostly since thats only what doctors suggest. However, I recently found out tics are heavily related to food and also magnesium as well. I had been eating quite a lot of junk food recently, and a lot of stress from graduating in the toughest engineering school in the country, as well as looking for jobs, having interviews, my tics have been crazy. My tics has always been pretty bad, but there were some times that it was better. I have a variety of tics i do in the same period, and they ke
  16. My son who is 11 has had Tourette's since he was 4. Both vocal and motor tics and typical waxing and waning symptoms. So far it's been mostly mild at times with only a few severe spells. We're in the worst period ever since he now has a screaming tic for the last several weeks. It's not going away and he can't go to school or be in public right now until it gets better. I am very well-informed (in addition to a mom I happen to also be a physician) and have tried nearly everything out there over the years as far as supplements, diet changes, nutrition, neurofeedback and environmental thera
  17. Hi everyone. I need help ASAP please. I saw an ad or post on here yesterday regarding a new treatment called Repreeve. I thought I had bookmarked the website, but can't find it anywhere. I'm trying to do research before they send me their product, but need to find their ad, post or website. If anyone knows any of this, please let me know ASAP. Thank you a head of time! *J*
  18. Thank you so much to everyone who participates in these forums. I have already found so much comfort and support in reading your words over the past year when our son started having vocal tics out of the blue. I am sharing our story for the first time now because of some recent developments that are causing us great concern. I have tried to provide as much information as possible and apologize for the very long post. I am posting this in the PANDAS forum but am not sure if the Tourette forum fits our son's profile better. Mid-February (2015): Our just-turned-four year old son, “A,” start
  19. Hello. Can anyone please recommend a good environmental / naturopathic doctor who treats TS in NYC area? After experiencing a number of vocal and motor tics of various severity that have been present on and off for about 2 years, my 6yo son was recently diagnosed with Tourette Syndrome and prescribed Clonidine. The medicine made him very weak and sleepy and disinterested in his surroundings. I could not endure seeing my little boy so sick, and took him off Clonidine after couple of days. It's interesting how the medical community does not have answers to two crucial questions that I
  20. 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 yo
  21. 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.
  22. 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 magnesi
  23. 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?
  24. 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.
  25. 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
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