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  1. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  2. I should start by saying that is an amazing site. I always feel that I am alone on my anti-pharmaceutical island. My 6 year old was recently diagnosed with Tourettes. I feel like I was left dangling by the pediatrician without any directions on how to proceed. I have an appointment with our nurse practitioner as I want to do blood work to see if there any nutritional deficiencies. Without guidance from a doctor (we dont have a doctor as I didnt vaccinate my children), I need help. What type of nutritional deficiencies should I make sure to test for? Are there any other tests I should request? Bacteria? Can you test for Panada? Allergy testing obviously but anything specific...? Thanks!!!!
  3. I've been dealing with tics since my childhood. I am 24 years old. I've tried tons of methods. I've found 2 good ways by myself to reduce tics. I have Neck moving right and left, breath out many times loudly and tighten my legs etc. So I've tried to push tics away, not responding any pressure any tics but made worse and then I've tried to direct my tics. Let me explain with my poor english. First tip; My goal is reducing "visibility". Because i'm tired stopping tics completely. When I feel the pressure to "breath out or neck moving"(more visible tics) i tighten my legs(less visible side). It's like guied the tics over my legs. I feel like the energy want to comes out so i let the legs do the job until feel relaxed. When I tighten my legs 2 or 3 second the pressure was gone and in public that would be less visible. Second tip; I've directed myself to do all tics "only" at home. I've worked on this about months. I've hold my tics in public or school. If I can't hold the tics anymore. I go to toilet or some place that I can be alone I release my tics and when i feel relaxed i move on. So when I get home I don't do over thinking about tics , I do tics so hard I've never stop any pressure, I do all tics and realesed myself. I am 24 , it took almost 18 years I've reduced %60 percent of my tics. Last of all being overweight and drinking too much coffee increase my tics so i walk 20 minutes everyday and drink coffee once a week.
  4. Hi all, my 10 year old daughter started having facial ticks a few weeks ago in the summer holidays apparently triggered by screentime. She moves her eyes to one side, opening them wide and head moves in the opposite direction to eyes - says her eyes feel like they need to stretch. We had a screen detox and the tic went away but has now come back apparently triggered by anxiety and an panic attack (first one ever). The eye thing started again and so arrived some facial twitching and excessive eye blinking. I've now found she also has an abdominal one where she moves her legs towards her and back when sitting/lying (looks like she needs the toilet or something). She also for about a year has this breathing thing where she takes very deep breaths saying she can't get enough air. I took her to docs who said this may also be a tic - just ignore and will probably go away. That's it. My daughter has suffered with an anxiety disorder since she was very young but it seemed to have mostly resolved until this. Just really worried that my daughter will not outgrow this and she has yet another obstical to overcome. I read that with transient tics that disappear it's only one tic at a time which has worried me. I'm concerned about other children bullying her because of it. She starts secondary school next year. I haven't been drawing attention to them and trying my best not to show my own worry about them. Advice and/or reassurance anyone? Thanks in advance
  5. Hello to all of the incredible parents and caregivers on this forum. I am new here and found this forum through extensive google searches, which always brought me back here and to several of you who have posted extremely helpful information. I cannot than you enough for sharing your stories. My 5.5 YO son has TS, vocal and motor tics for a year. We have followed similar diets (GF/DF/Nut Free) to many of you here and he also has severe tree nut allergies with anaphylaxis, which seems to be a common thread with TS kids (allergies/OCD/ADHD). We've been on a quest for the past year to find the right cocktail of supplements + diet to help jumpstart his gut biome to function more efficiently. We have a Neurologist, a Pediatrician and the most helpful, a Naturopath who has been with us every step of the way. The non-western path is certainly the one for us, and we've recently noticed a few changes with the introduction of PharmaGaba supplements (2 chewable per day) which have significantly reduced the motor and verbal tics. He's only been on this supplement two days and I notice a difference. Wishful thinking? Or a strong connection? There is a Mt Sinai clinical trial looking at GABA's role in TS with Dr. Vilma Gabbay which many believe to be greatly reduced, up to 50% in TS children. We just sent in our 23andme genetic test for our son, which I'm hoping will also lead us down a more focused path. Not as easy to get a kid to spit in a tube as I would have thought, but we collected enough to process. So much new research out there about the role of GABA and Histamines in TS - sometimes overwhelming. In some cases, kids are not producing enough Histamine and in others, and over-production of histamine and it's not going to the "right" places which from what I can gather is why DAO can be helpful. We see a lot of allergies, food allergies, environmental allergies in our son. I'm convinced my son is allergic to carpet backing and any plastic products that off-gas. Looking at chlorine and pools as another possible trigger, as he has swim class weekly (inside) which we're worried is compounding his symptoms. Anyone else see major environmental effects on triggers tics - specifically plastics or chlorine? He had a NutraEval test where his MTBE levels were extremely high, which was why we started to look at the carpeting and carpet backing in his room and in the house. My main reason for posting today is about genetic testing. Has genetic testing helped to guide your treatment decisions for how you supplement and/or approach detox, chelation or natural and herbal healing for your TS kids? If so - which genetic mutations or markers were the most common or important markers in TS and how did this impact your treatment path? We get our results back in a few weeks so plenty of time to mine for more information. I'm so eternally grateful to have found this forum. We are warriors, super sleuths, CSI investigators trying to solve this neurological mystery to make life a bit easier for our children and loved ones. I am sending you all a gigantic hug from cyberspace. Your words and wisdom have helped me get through many rough patches. Thank you! Erin
  6. My 16 year old ds has had tics for many years. Most tics include bending his neck sometimes just a quick bend forward but other times he uses his hand to really push his neck down and when standing he sometimes has to bend over. He also stretches his feet. I believe he has some ADHD, too. He had started driving and has been ticcing. My concern is the safety part. While the tic is brief, he is taking his eyes off the road. Any advice from those out there who have gone through this would be greatly appreciated. I know I can't stop the tics but what can I do? San
  7. 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 symptom I've experienced (and quite frightening) particularly in stressful times, is that I will feel this wavy sensation behind my eyes (in my head) which will result in an unfocused staring spell (trance) lasting several seconds. I am conscious whilst this occurs, although inattentive, with the exclusion of sight from immediate awareness and it's not suppressible. Could this constitute a tic by definition? Is this inclusive to PANS and has anyone else experienced similar? Apart from this I can't remember ever displaying conventional motor or phonic tics, I just wondered if they were absolutely necessary in diagnosis? Hopefully pursuing treatment soon
  8. 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....
  9. 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 mentioned in past threads - PANS NP just said it'd be too much glutathione with these -CBD oil 25mg./2x day works so-so -Considering deep brain stimulation or tDCS is we can find a place Thanks! ~TJ ds17 (b. 1999): ID, DD, TS, ADHD, OCD, Anxiety; PANS diagnosis March 2014 and treatment started, about five years late. dd22 (b. 1995): neurotypical, IBS, Celiac mom (me): Post-babesia
  10. 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 back and fourth, so when I'm not doing one I do the other. When I'm on the correct dose of meds, the tics subside but still persist and I'm looking for some methods outside of OCD meds for treating my tics. I'm going to the doctor in a few days to increase my meds dosage which will help but I'm interested in hearing some other methods as well. I recall reading something about magnesium and calcium? I already take calcium and am willing to try almost anything to bring these tics down to a manageable level. Right now, they are worse than they have ever been. Any help would be appreciated. Thank you.
  11. My son was diagnosed with transient tic disorder around his 4 yo birthday. He repetitively clears his throat, sniffs, and blinks his eyes funny. I have had him allergy tested and found no environmental allergies and just a few food intolerances - none of which were severe. He is moderately allergic to nuts and wheat. He does not eat nuts and we are working on getting wheat out of his diet which is very difficult! He has a short list of foods that he is mildly allergic to and I have not even begun to eliminate those from his diet yet. I treated his first bout of tics (he's had two now) with Natural Calm. It took 3 months, but the tics did finally disappear only to return 3 months later. My question is - are we just treating the symptoms of tics with eliminating allergens and providing magnesium supplementation? What is the root cause of the tics? Could the root cause be that our kids are deficient in magnesium because there is something going on in their bodies that prevent them from absorbing magnesium correctly?
  12. 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 not going away. He developed a new tic yesterday, where he is now not only licking his hands, but licking objects around him or his legs or feet. I can't see sending him to school if he is licking everything. Anyone have any similar experience? I thought I read somewhere that sometimes tics increase before dying out? I am hoping this is true. I am so stressed about this.
  13. 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 Treatments for Tics and Tourette's calls for but also need proper guidance. Without it, we feel we're shooting darts in the dark trying to figure out his triggers. Can any one recommend a doctor/health practitioner in/near the Tampa Bay area that has dealt with treating tics? Any help would be much appreciated.
  14. 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 the strep infection if that's what is causing his tics. Thank you so much for any information!
  15. 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 cause neurological symptoms. Do some research on Histadelia kids. Describes my son to a T. Work with a Functional MD or ND who understands the methylation cycle and other contributing SNPs. I would suggest getting a Blood Histamine test. We just had one for our son by Dunwoody labs. It included histamine, DAO and Zonulin (zonulin was optimal so not a Leaky Gut problem). We ran genes through 23andme a couple years ago which is helpful information (still requires research, trial and error). Dr. Amy Yasko (google her name) has an online forum and free online books which are very helpful regarding gene errors and the methylation cycle. If our histamines are too high there are some reasons behind that which can be supported by understanding your methylation cycle. You can read up on Histamines and how they effect us. Some people have issues because of low histamines and others because too high. Here are two good links. http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm http://www.drkaslow.com/html/histadelia.html
  16. 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 clench or move my vaginal muscles. It is a little similar to having a split second orgasm but it is NOT VOLUNTARY AND NOT CAUSED BY ACTUAL AROUSAL it's just sort of like I have to do it and I hate it. It's like having zero control over my body and worse over my sexual experience. Usually it follows or is followed by a lot of my other motor tics, especially those in my legs and feet. It feels exactly like a tic does--the urge and the helplessness to stop. Does anyone know anything about this???? When I actually am sexually active in a normal voluntary way it calms the tics down for a little, but it always comes back after some time. I end up twitching in my seat, which looks like the tic is in my whole body but its only because of the movement down there.... Please please someone help me !!! Thank you
  17. Tics and pain

    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 help. Not so far. We are waiting for appointment with a doctor. But these last weeks he has been complaining about pain in his mouth, neck and upper back. This pain is really troubling him. I ask him if it`s real pain or if it`s just that he feels uncomfortable. He says it`s pain. It makes him angry and easily irritated. We have almost stopped doing homework because it`s to hard for him. It may be he find it hard to explain exactly what he is feeling. But is it normal to have pain because of tics? Is pain normal for people with Tourette? I wil be thankfull for any advice and answere to my question. Anne Linn
  18. 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 therapy. Mostly his tics seem to "wane" when they choose to no matter what so it's hard to determine if treatments are working or if it's the natural cycle of improvement. This spell is severe and has lasted much longer than any others and I am looking to more advanced/serious treatments. I specifically would like to know if anyone has experience with Dr. Jeff Lazarus in California? Everything I've read about his treatment is positive on this site and on other reviews. I've talked with him already and he seems to really believe he can help. If he could it would be amazing right now and for the future for my son. The problem is we live in Louisiana and will have to travel there for a minimum of a week. This is expensive. Not to mention his therapy costs THOUSANDS of dollars for just the one week. Based on his estimate it would be over $5,000 up front and that doesn't even include any travel expenses. Also he requires both parents to be present initially which adds to cost and to stress for my son since we're divorced. AND travel would be a nightmare - I can't imagine the plane rides with him screaming every 20-30 seconds. Bottom line - I need to decide if it's worth the stress and the time and the cost. I'm willing to do anything but I don't want to invest this much foolishly either. Thoughts from someone who has specific experience with this doctor or hypnosis in general and might have advice for me to help me decide to take the plunge? Thank you very much in advance. AprilP
  19. 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 keep changing. Anyway, i recently read on this forum about Natural Calm magensium supplement, and i started taking it last night. I also took it this morning. I'm wondering how long would it take to have positive impact on my tics. Of course it might not work for everyone, but assuming it does for me. Btw, I'm taking 3mg resperidone and some amount of clonidine that i don't remember the dose, at night. And i also take smaller dose of clonidine in the morning. I also would love to know if it is possible for a person like me to gradually stop taking meds and control tics with good food and supplements. Ive been on meds since around 10 and I'm definitely worried about myself in a long term if i will have to take them until I'm 80 something. But as i said my tics are worse than average a lot of times, so I'm not sure if i can manage it without meds. I would appreciate your input! Any opinion is welcome. Thanks!
  20. 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 the topic ...so i know the tests that i think need to be done but i also know this is'nt my specialty... my son deserves someone who has experience with this.. not just me piecing together various bits of data .He is a very sensitive and gentle boy who is getting progressively more anxious as he struggles to deal with his body jerking hundreds of times per day. would anyone have a recommendation for a doctor or functional clinic in London, UK who can help us? a million thank yous in advance
  21. 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,” started making a repetitive vocalization that sounded like a faint, high-pitched tone. Over the course of a week or so, it morphed into a very loud involuntary squeaking noise that, at it’s worst, could occur multiple times in a minute. We went to see our family doctor, who examined “A” and reassured us that childhood tics were a somewhat normal occurrence and that “A” would probably grow out of them. We went to see a pediatric neurologist who talked to us about transient tic disorders (and the long-term possibility of Tourette Syndrome) and sent us on our way. Over the past year since the first tic appeared, there have been several cycles of tics being more and then less prevalent. They always appeared to be vocal in nature and included sounds such as humming, coughing, sniffing, and exhaling loudly. Sometimes they were confined to a specific time of day, like at meals, or at bedtime when we were reading books. Other times they waxed and waned throughout the day with no predictable pattern. We did our best to not call attention to them and to try to reduce “A”s anxiety when they occurred. In October we introduced an air filter in his room and observed a (perhaps coincidental?) reduction in the frequency of his vocal tics. In fact, for a period of time from about Thanksgiving until mid-January, we did not observe any tics and began to wonder if perhaps he had “outgrown” the tics as his doctor had suggested could happen sometimes. Then, on January 20 (2016) he peed his pants at school during an engrossing activity. This had never happened before. Over the course of the next several days, “A” continued to pee in his pants, often several times a day. We took him to the doctor to test for a UTI, which came back negative. We have since deduced that the peeing happens when he involuntarily tightens his abdomen - perhaps a new motor tic. Around this same time, “A” started having trouble sleeping again. He asked for Mom or Dad to lie next to him as he was falling asleep, and on multiple occasions he has awoken in the middle of the night and asked for one of us to sleep in his bed with him. Once, when I (Mom) was lying next to him in bed as he was falling asleep, he mentioned that he saw “red Santa Clauses” and “red buses” all over his wall. He asked if I could see them, too, and then (possibly covering up) said that he was “only joking.” He has started avoiding certain foods again, saying that they “taste funny” or that they’re “too sweet.” This includes foods that he normally consumes with great pleasure, such as granola bars, juice, peanut butter and jelly sandwich, and toast with honey. He started making funny twisting movements with his body, often having to stop in the middle of doing something to bend over and hold a counter or something for balance. He juts his hip out to the side or wiggles his torso. When reading books to him, he twists his head and torso to the side or sometimes puts his ear to his shoulder in a rapid fashion as if a fly flew into his ear. He fidgets his fingers as though he’s typing something. New vocal tics appeared, including a shouting tic (makes a brief shouting noise at random times throughout the day), and a change in volume mid-sentence. He also has been grimacing and putting his chin to his chest or tipping his head backwards, which can make his voice sound funny or distorted if he’s mid-sentence when it happens. He also talks occasionally in “baby talk” or gibberish, and sometimes loses his train of thought or appears to stutter slightly. His teachers have expressed concern that he is “losing his ability to speak” because they can only understand him part of the time. He received early intervention speech therapy from ages 2-4, but made such great progress that they stopped services around his 4th birthday (just before the first vocal tic appeared). His teachers recently asked if we should consider contacting the speech therapist for some “refresher” services, given the regressions they have observed in his speech. He has been very tired and has dark circles under his eyes. His teachers note that he seems very tired at school, too. He is sometimes listless at home and asks over and over again “what can I do?” When I give suggestions for activities that he usually likes to do, he rejects them. He has been choosing activities that seem odd or destructive, such as sharpening crayons or pencils over and over again until they are little nubbins, mushing things into crumbs (e.g., food), scribbling roughly on a piece of paper instead of making a careful drawing (which he usually likes to do), and racing a truck back and forth across the floor and occasionally bashing it into other toys. These types of activities are occasionally part of his normal play, but right now they seem to be the only things he wants to do. Perhaps most concerning of all are the changes in his mood. It feels like a different child has come and replaced our normally inquisitive, focused, and generally good-natured boy. He has had about 4-5 huge tantrums over the past several weeks that have usually resulted in Mom or Dad gently restraining him because he tries to hit or bite. He fights and claws until he wears himself out (sometimes lasting 30-45 minutes), and the tantrums often result in lots of crying. We try to talk to him about what’s going on, to reassure him that we want to help him, to ask him if his tics are hurting his body, to validate how he has a lot of “big feelings” right now and that’s okay. He doesn’t like to talk about any of this, but sometimes validating his feelings makes him cry harder. It’s hard to imagine how scared he must feel about all of these things happening to his body. We went back to the pediatric neurologist last week and he listened to our concerns and watched the video clips we had taken. He did a basic neurological exam (reflexes, balance, etc.) and then proceeded to talk with us about Tourette Syndrome and OCD. It wasn’t a particularly helpful or illuminating visit except for the reassurance that there doesn’t appear to be an underlying life-threatening cause for these developments. We mentioned the possibility of PANDAS with the neurologist and received some pushback. Nonetheless, he made a note to our family doctor to do a strep culture but didn’t think a blood test was necessary. The rapid strep test was yesterday and came back negative. If the longer-term results of the culture come back negative, our next plan is to get a blood test. We are also planning to test for Lyme. We have an appointment in March (earliest available) with a local naturopath who comes highly recommended by our local Lyme Disease support group (even if it’s not Lyme, we think she will be helpful for exploring other issues). Prior to this recent onset of tics, he had two bad colds, which we just assumed were your normal, run-of-the-mill winter colds with a runny nose, coughing, etc. so we didn’t go to the doctor and they seemingly cleared up on their own. One last possibly relevant detail - when he was three, A’s doctor has noted that A’s tonsils are larger than average and we saw an ear/nose/throat specialist at the time. The specialist said that a tonsillectomy might be something to consider in later years so maybe it’s time to revisit that conversation? Questions: How can we help our son? What are the next steps that we should take in trying to get to the bottom of what’s going on? And what types of low-invasive efforts we can try at home (e.g., epsom salt baths) to try to bring him some relief in the short-term? How do you help your young child feel reassured when something like this is happening? What language do you use to talk to him/her about what’s going on? Any other feedback or ideas are welcome. We are distressed and discouraged and looking for any help we can get. ***Thank you for taking the time to read this.***
  22. 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 mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  23. 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 from one to another (head bobbing, abdominal contractions, eye blinking and rolling, neck stretching, and seizure-like tics that were very scary, etc.). We tried diet intervention according to what she tested sensitive to, heavy supplementation, and almost everything else in between, which could be material for a whole book! In November, her tics had changed from motor to vocal ones. She could no longer be under the radar at school. They were constant and SUPER loud. We were so desperate. She had to be kept home from school for an entire month, and she was starting to feel very sad and isolated. Since I have been on "research mode" for the past 10 months, I came across Sheila Rogers' post on those new patches (thank you so, so much Sheila!), and out of desperation I decided to order a sample (which by the way was free). I am very happy to report that even though my daughter's tics are not 100% gone, she is finally doing much better, and has been able to return to school. I am sharing this story to encourage you guys to ask for, and use their sample. Who knows? It might bring some relief for your child, and you have absolutely nothing to lose.I really didn't expect the patches to work for my daughter because she is a PANDAS/PANS child (by the way 9 mos. on antibiotics never made the tics go away either). I also started DD on the Feingold diet on Dec 31 which I know is also helping, but the tics started to diminish while wearing the sample of the patches (5 days before starting the diet). Since she is a PANDAS/PANS kid, the patches are not obviously the only thing we are using around here. So, I do not know if the tics were meant to diminish on their own, but for me, it is too much of a coincidence the almost immediate relief my daughter enjoyed after 9 months of being completely annoyed by her tics. She says the patches are diminishing her urges to tic. I just hope this post can at least help one child and his/her family out there. Good luck everyone!
  24. Hi everyone, I just wanted to check in after getting rid of my son's tics. To sum up, my 8 year old had SEVERE disabling tics for several years. At their worst, they would stop him from doing homework and eating because he couldn't control his hands. Sometimes he couldn't speak because he had to go through a fifteen second routine. He was often on the verge of tears and it was absolutely gut wrenching for all of us. The tics ran from sucking in his stomach, to mouth stretching, to hand stretching, neck stretching, vocal, swallowing...on and on... also the ADHD that went with it. I have been through health issues of my own and had helped myself a lot by seeing a local wonderful dietician and getting a food intolerance test. Since my son also seemed to have frequent stomach pain and nausea, and there definitely seemed to be a food connection (we already realized food coloring was causing issues, and he was worse after eating - constantly being sent home after lunch at school for tics), I decided to get him tested for BOTH allergies AND food intolerance. (allergy with a traditional allergist, and LEAP testing with the dietitian). Long story short, he had some nut allergies (which he barely ate anyway) but also had very severe food intolerance reactions to both WHEAT and SUGAR, as well as a usual list of random foods. Let me tell you, in case you haven't been through a wheat-free sugar-free diet, sugar and wheat are EVERYWHERE! and in EVERYTHING! Anyway, we took out all of the foods on the list that weren't green (safe foods) and within four days the tics started going away. Three weeks later, they were down to 5%. A month after that, they were gone completely. We have since reintroduced almost all of the foods except his two severe foods (with no tics), and everything he eats is organic. The food coloring didn't show strongly on either test, but we know they were a factor so we have kept that out. I am not suggesting that wheat and sugar are your same problems since everyone will have there own list. I am, however, suggesting that if you have tried everything and seem to be going nowhere that you consider getting both tests done. They were PRICELESS to all of us. I also don't want to suggest this was easy at first. We were literally feeding him Lay's potato chips, hot dogs, and tater tots for a week while we sorted our way around healthy foods that he was allowed. The day you get that list in your hands will be, "What on earth am i supposed to eat?!?" But day after day you will find new stuff and in a couple of weeks you will be in a routine and feeling like you have tons of choices. Also, you have to give it a few days to see results. Things need to work their way out of your system. Once you start making progress, the motivation will be there, trust me! Your dietitian will guide you with all of this. (It was much easier to start with the green foods, than to think of what you can't have.) And we did introduce food back slightly faster than protocol. I want to cry when I think that I was sending my son to bed every night with a jam sandwich on wheat. But elated that we can move on and that his future looks bright and clear and even if we do have some tics, they will never be like they were. The ADHD is MUCH better. Obsessions are gone. Grades have skyrocketed to A's and A+'s. My son is happy and calm!!! Please give this a shot, and if its not this, keep looking! Don't accept that your tics can't be cured!!! My best to all of you!!! Hugs and good luck! -Skylar PS Sidenote: I feel very sad for everyone who searches online for health help and is met with even more stories of desperation and lists of symptoms by those who are still suffering with ailments. People seem to disappear when they have found answers and health instead of coming back to the forums to report on what worked for them. PLEASE pay it forward when you have gotten better and let everyone know what worked for you (and put a note like this at the bottom of your posts )
  25. 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 am sure every person who has been exposed to TS has been asking: 1. what are the causes? 2. what is the cure? My son's neurologist admitted that giving any type of medicine to treat his TS is like putting a Band-Aid on a wound. The medicine just helps alleviate the severity of tics, but does not really cure the underlying cause of the condition. Is the cover up of symptoms through medicine really worth it, giving the endless list of side effects that cause critical harm to a human body? Looks like the only way to start approaching any type of treatment of this disorder is through the natural therapies. Could someone please direct me to a good medical professional in NYC who is able to treat TS naturally? Any leads would be highly appreciated. Thank you so much in advance!
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