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  1. Hi KSandy It certainly sounds like you are following a good track! I don't have enough personal knowledge to comment on specifics for you, but I do know my son (dx TS with likely PANS component) showed tremendous improvement with cleaning out Candida albicans! We used capsules by NOW called Candida Support (used to be called Candida Clear) and had good results. As Candida is fungal (also sometimes called "Yeast overgrowth") I know some of the prescribed antifungal liquids have had mixed reviews. My son's OCD always ramped up when his GIT wasn't happy. He still uses plain natural organic kefir as his probiotic, as he did not respond well to those probiotic supplements. He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues. The Integrative doctor started him on NOW Boswellia + Curcumin which he still takes and finds beneficial to both GIT as well as neurological impacts. We know the brain-gut connection all too well, so always advocate for the treatments that aim toward healing both. We found regular medicine just doesn't address that, and frequently prescribed treatments just upset the balance and result in new issues - at least that was our experience. So kudos to you for following a holistic approach. I do hope your daughter will heal well.
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  2. Not to make the rabbit hole any deeper, but pesticide use is a biggie as well. I was reminded yesterday when I bought a pair of shoes and the box contained micro-pak..... Micro-pak is in a lot of consumer products. Home - Micro-Pak (micropakltd.com) It may be better than what they had been spraying down boxes with, but I still wouldn't want it lingering in the house.
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  3. Bon Ami - been around forever! Eve
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  4. We are partial to Dr Bronners as they are one of the most transparent ones out there, and we buy Sals and Castille soaps in gallon form which last quite a while. Dishwasher tabs: Seventh Generation tabs and dishwashing rinse agent Laundry detergent: Dr Bronners Sals suds, about 2 tbsp in a full load in our HE washer Laundry Drying: wool balls General Cleaning: Dr Bronners Sals suds diluted to about 1tsp:32oz water General Cleaning for Hard water stains: Dr Bronner Sals suds diluted to 1tsp:32oz vinegar Toilet disinfecting: Hydrogen peroxide (yes the standard stuff you can pick up for under a buck per bottle) Hand washing: Dr Bronners Baby Mild Castille soap diluted with water in foaming hand pumps For hard floors, we have a steam mopper which works well without any soaps/surfactants. When they do need a wash, it's literally 1tsp sals in a bucket of warm water.
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  5. Dear Chemar, Thanks a ton! I am figuring out many things but very slowly! Your responses and your inputs have been very helpful so far. I am grateful. Also thanks for putting things into perspective for me! Swetha
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  6. Hi Swetha, Our experience was that sometimes relaxation or concentration can also bring a tic release. Honestly, if your son is not bothered by the tics while he reads, I would not draw attention to them, and certainly would not stop him reading. I realized early on our journey that frequently I was way more aware of tics than my son was, and drawing attention or trying to get him to stop often just ramped them up! We found using "daylight" light bulbs very helpful indoors, if that may help? Also diffusing a calming essential oil like lavender or jasmine, if he tolerates those. Also, my son needed corrective eyeglasses, and getting those helped a lot with both eye tics and overall. Just some thoughts that may be helpful to you?
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  7. Thank you @mertand @madimifor your kind replies. I know its not going to be a simple and an easy route. But yes one day at a time and I am trying to be positive! Wishing only the best to you guys!
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  8. Hi Been reading these forums for over a year which has been so helpful. My son has had on and off tics for three years, not ever really bad. He has had mild anxiety, but this fall, after being sick, his tics became very pronounced and then his anxiety skyrocketed and he developed panic and OCD-like behaviors. He was then diagnosed by a naturopath with PANS due to several tick-borne infections. He is currently on Bactrim, Arithromycin and Atovaquone. I have so many questions, but right now I can't reach my naturopath and have a more urgent question. We are on day 8 of meds and overnight my son developed what looks like chicken pox all over his body after being very itchy. Benadryl calmed it down but it has actually worsened over the day. Is this a die-off reaction or a reaction to meds? I know noone can say for sure but I am wondering if anyone else has dealt with this. As an aside, after the 1st dose of the atovaquone he developed itchiness and small bumps on his chin but those went away without any medications. No rash/bumps since then but he is itchy before bed. Itchiness was one of his symptoms right before bed even before starting treatment.
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  9. Is this happening basically all the time, Swetha? (Yes, we have heard of all these types of tics.) I'm sure it must be very distressing for you. I'm so sorry to read about it. Are you in India? I'm sending an email note to you. Also, to jump back -- no, meat is not required to heal a tic disorder. As a general concept, a balanced vegetarian diet is fine.
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  10. If you have any specific questions or suspicions about interior air quality, I am in building sciences and can probably point you in the right direction. Living in Europe is certainly beneficial over the US, but there are a host of things to consider.
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  11. Swetha, I'm sorry to be so late in replying. I went out of town for several days and am still catching up! I agree with Chemar, that you have done an amazing number of interventions. You are observant and have what it takes to make real progress. In fact, it sounds like you already have. It's great you are cutting out sugars and reducing dairy. It can be hard to know what foods might be involved without trial and error--unless something becomes obvious. Maybe the naturopath could help you with that, if you see one. You mentioned you were starting the waring of eyeglasses back up, thinking it might have had something to do with the symptoms. Have you seen a change? There could be visual component, especially since he had tics when reading and watching TV (this is not uncommon.) You mentioned dust allergy -- have you had a chance to make the bedroom dust-free? (article) A good air purifier in the bedroom can often make a difference. Could it be possible he also has other sensitivities that you are not aware of.--like to mold? What is his current "baseline" of tics -- how would you describe the current level to the pre-trip level of tics, before the explosion? A lot of us can totally relate to him letting the tics out after school! It can be distressing to watch, as a parent. Hopefully as tics keep settling down, he won't have to focus on holding them in. You asked about stool testing, that can be helpful for identifying candida as well as bacteria, viruses, or parasites. Does he have digestive problems? Please think about chemical exposures in the home or at school, Swetha. Do you have any scented products at home? Air fresheners or incense? And what about scented laundry and cleaning products? You may have seen enough on the site to have already made changes there. This is an area that is often overlooked as it is natural to focus on food and supplements. Similarly, there could be something at school that he is reacting to. We hope you will keep filling us in on progress. I'm not planning to travel again for a while and will keep an eye on this!
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  12. Hi again @Swetha I just wanted to also comment on what you said re excitement being a tic trigger This is also something many people with TS seem to experience - whether it is great excitement or big stress - that seems to often cause tics to wax. Someone once suggested this could be linked to the adrenaline reaction in both, and how all that can impact dopamine levels (elevated dopamine may be a tic trigger?) Try keeping a journal of when you notice tics up or down and what you remember could be associated (food, environment, emotions etc) It is really amazing how one can begin to see patterns and then be able to implement whatever needed to help.
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  13. Sheila

    GABA and vocal tics

    That all sounds so good, Jules. I hope you will please let us know how everything works out. We sure hope you see improvement! Sheila
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  14. Sheila, thank you so much for your suggestions and the resources you have provided. We removed eggs from her diet for two months over the summer, it did not change anything, we also went gluten free a few years ago and it did not have any effect either. I will provide an update in a few weeks if there are any changes for the better, hopefully.
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  15. Sheila

    Tic Trigger Diary

    Hi Atex, We have some additional resources that are associated with our book Stop Your Tics by Learning What Triggers Them. See here Depending on what you are looking for, I think you could find some helpful approaches. Please take a look and see what you think. I'd love to know what you think. If you have something else in mind, maybe we could develop it for you and it would no doubt be useful to others. I'll look forward to hearing back if you get a chance. Thank you! Sheila
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  16. Hi Irene123, I'm so sorry you and your daughter have been dealing with this for five+ years. I agree it would make sense to consult an experienced naturopath. I'll share just a couple of thoughts. I saw your post on PANS (where you said you posted in error and switched to this forum). You mentioned "We don't really use any scented things except for her deodorant that has some lavender smell and Dove shampoo/bodywash. . . . When we notice something triggers tics, we try to avoid like hairspray and pool chlorine." It's really good that you have been able to observe that some chemicals are triggering tics and you avoid them. Usually when someone is chemically sensitive, the more you can avoid potentially troublesome items, the better. Also, when something is used frequently, like a body wash or shampoo, it can be hard to know if it is having a negative effect. That's in contrast to getting in a swimming pool and seeing that the pool chemical increased ticcing. I would suggest you try to go unscented with everything in the home, from laundry detergent to dishwasher soap, to personal products. And also use natural cleaning products, like those from 7th Generation. And avoid plug-ins, fabric softener liquid or sheets, etc. Also, when it comes to diet, it is possible that she is eating something every day that she is sensitive to. You mentioned eggs and whole wheat, which are common culprits for people with food sensitivities. A naturopath should be able to help identify them or advise you. One test that is often recommended is from Great Plains Laboratory, which has just recently changed it's name to Mosaic Diagnostics. https://mosaicdx.com/resource/great-plains-lab-is-now-mosaic-diagnostics/ This test might be very helpful, but needs to be ordered through a practitioner, like a naturopath or a doctor. https://mosaicdx.com/test/ige-food-allergy-test/ (If you already looked into food reactions like that, sorry, I missed it.!) I did see that your daughter has a limited diet because she likes it that way. I know change is difficult, but if she is eating something that is causing a reaction, it's important to address that. I hope you will let us know how things are going, especially with the start of the school year. Wishing you the best!!
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  17. Thank you so much for the response. I called the office and got some suggestions.
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  18. I have to agree with Madimi that tics, especially at early ages effect the parents far more than then the child. A long as it's not because of extra stress or anxiety, I don't very actively try to remove triggers anymore. ( I still sometime do selectively) i.e. My doughtier had a very certain tic when we were playing volleyball but I kept on practicing with her (she eventually got to a point she is better than me now) and that particular tic went away quickly. Btw, after a very steady decline we have seen an increase starting one week ago (we are at vacation , traveling new places ) not as bad as our 'worst' times, but still far worse than our average for the last two years. I hope that this temporary but I also know puberty may increase the symptoms. I really wish I could stop worrying.
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  19. Hi Atex. My son is 9 and his tics are also slowly progressing every year, but after obsessing for many years for finding triggers and going from one doctor to another, I recently decided to take a step back and just enjoy life. Every kid with tics is unique with his own triggers. Personally for me i don't believe change of diet, gut health etc.. made any difference for my son. Cbit didn't help my son either, he even told his therapist; why i have to change my tics they dont bother me i just want to be free. This changed my view a lot my son isn't suffering from his tics only i was sadly. Do i see triggers yes, screentime is a big trigger for my son, but i still let him, why take away something he enjoys just because he tics more while doing so! I see in the mornings he almost doesn't tic and towards the evening they tend to get more. Exitment is also a trigger for my son we went to a Water park and he ticced more. But there are also many times he doesn't tic at all. Like on the beach i rarely see him tic, where we spend many days cause we are living on a island. Or while eating dinner my son doesn't tic or when playing with his pet hamsters. So what im trying to say we can help a little, but cannot control the tics entirely. And maybe in a few years they be gone or maybe not. But me being more relaxed helped my son for the better for sure. Greetings
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  20. I also wanted to also add some good news to this thread. I joined this forum in 2013 back when my son was 5. He is 16 now with no remaining symptoms or flares ups and has been this way for about 5 years. What worked for us was getting a proper diagnosis early (within 2 days of first episode) and fighting like heck to get a doctor to prescribe long term antibiotics. At first he was just given the standard course of antibiotics to fight the strep or ear infections he had. Symptoms would improve, but then come right back. After about 6 months of constant flare ups we ended up getting him on daily antibiotics for 2 years. To do this it took traveling out of state to a Pandas friendly doctor. After that, he went down to just a preventative does of antibiotics a couple times a week for a year or so. After that, we went down to just antibiotics in the winter months, then down to just when he had any illness or symptoms or a dental visit. Now he’s been completely off antibiotics and flare free for about 5 years. Puberty really seemed to shut things down for him Pandas wise. I strongly believe we would’ve had a different outcome if we didn’t catch it early and get him protected with long term antibiotics. His original symptoms were awful OCD and tics. He had to do weird things like tap his leg with his fist 3 times after doing anything like throwing a ball or spelling a word. His tics ranged from mild blinking to full upper body contortions. It was hard to watch and heartbreaking at times and we truly wondered if he’d ever return to normal. The reason I came here today (first log on in 5 years) was because my son opened up to us on vacation about his Pandas for the first time. It was hard to get him to talk about it when he was young. Last weekend he explained the OCD urges he used to have. Some he hid, like when he played basketball he had to dribble down the court an exact number of times during drills…. Other things he couldn’t hide, but the OCD was worse for him than even we could even notice. Anyway, every case is very different and I know how it feels to be in the midst of it all. Just wanted to give everyone here some hope that there is light at the end of the tunnel and the outcome can be a successful and well adjusted child. My son has a 3.8 GPA in High School and has several offers to play college baseball. He is a 3 sport athlete, class Vice President, and has a great friend group. Everything you could hope for a child. All I wanted 10 years ago was to be able to write the post I am writing right now. Wishing you all strength in your battles and the best of outcomes for your children!
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  21. Finally, after years and years of despair, powerlessness, and just thinking and grinding in my head, I think I've found triggers that cause my son's tics. What has helped me enormously (really HUGE) is this platform, in which I have never shared anything myself but have been reading for months). It makes you aware of the fact that you are not crazy, because sometimes your environment thinks that 'it's not too bad' or they think I make it worse than it is. While as a mother I feel that something is not right, that there are causes, and that you want to solve them for your child. It really seems like some kind of primal instinct. While at the same time trying to find the balance so as not to overdo it, which I found extremely difficult. This site also helped me in that, I've read messages from people who said that you don't get the years back and you have to enjoy your child, that he is not just the tics but has so many talents. And that you don't help him by going too far... I think this was and still is the hardest for me. Our story and my quest in short: Our son has had problems with his throat and breathing from an early age, a lot of coughing, a lot of throat infections and was sick with a fever every two weeks. From the age of three there were frequent sniffing noises, throat clearing, etc. They were not really 'tics' yet. Later we had his throat and nose tonsils removed, despite the fact that I felt I had tried everything first. This helped a lot with the fever/being sick etc. But those slight tics kept coming and going. After an intense period of moving / new school / corona / death of grandma (all at the same time) the tics exploded. They alternated but were almost always with throat / nose and later with eyes (that's something from the past few months). We've known for a long time that dairy makes it worse, so we hardly give that to our son (we know what can and can't). I am also aware of PANDAS, but I do not feel that this is the cause for him. Now I recently discovered by paying very close attention / writing down that MSG (glutamate) plays an enormous role and he gets a very bad tic with throat clearing because of it. Also from glucose fructose. As soon as he gets an abundance at once (such as a lot of spring rolls last weekend) it was immediately extreme. And he also suffers from pollen / seasonal allergies / dry air due to the air conditioning. Now that I finally have more insight into the triggers, my thoughts turn to the cause. Why are these triggers a problem to him? And doesn't my other son suffer from it? I now suspect it all comes from the gut. He also regularly suffers from worms in his stool and from candida in his toes. Finally, I think he has a magnesium deficiency, it also seems to be the only thing that REALLY has a positive effect (I give magnesium citrate). Now I have discovered after a search that these things are also related to each other. Would he suffer from parasites? Which in turn cause a magnesium deficiency? A magnesium deficiency can also affect the candida infection. And then I read again that a magnesium deficiency causes more complaints when consuming glutamate: If there is too little magnesium in the brain and too much glutamate, which is often added to processed foods as a flavor enhancer, the risk of neurological disorders seems more plausible: this is a negative combination of an excess of stimulant and a deficiency of inhibitory substances. It's a long story, I had to get it out. And I will now continue with a magnesium test (not a blood test as it doesn't measure it well enough) and a parasite test. I hope this post might help you in your search or read something that will help me in my search. I also read here several times that people said 'don't stop looking for triggers' and Chemar has it on her profile: Never stop exploring, seeking and investigating information....your light at the end of the tunnel may be just around the corner ! And that sentence really stuck with me. Thank you for all your time to share your experience.
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  22. Chemar

    Post vacation tic

    This is a lesson we also learned the hard way! My son's reactions and length of waxing varied depending on what he was exposed to. Thankfully he was able to recognize how dramatically things could deteriorate by eating stuff that he knew triggered tics before. We did find detoxing with Epsom Baths very helpful, as well as some other things that benefited (eg acupuncture, amongst others) I hope things settle soon for your child @MLee
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  23. Chemar

    Vocal tics

    @MLee @JulesLou I think you have both added B6 (P-5-P)? But not sure if you tried NAC yet? (N-Acetyl L-Cysteine) My son did not respond well to it-but I know many others have had good results. The recent ACN/Latitudes newsletter also had this testimonial about it with B6 https://latitudes.org/these-nutrients-helped-our-son-with-his-tics/
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  24. Thank you for sharing this, Chemar. What a great reminder for readers to revisit the role of magnesium, which we talk a lot about on this forum. For some it could mean going back and giving it another try. Or, it could be giving magnesium for the first time. It's great that in the case you mention, there was an immediate calming effect on tics so it was clear it was working. If giving it a try, give it each day, as it does not stay in the system long. And, start slow in case it could cause more of a laxative effect than you want.
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  25. @Chemarthis is very interesting reading and hopefully a bit of a break through for people in the future.
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  26. I have not heard of that doctor @JulesLou
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  27. I totally agree. It takes a lot of work and certain products may cost more but we have found it's worth it. One big hurdle is understanding exactly what you're eating. For example, MSG is hidden by giving it so many different names.
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  28. I fail to understand why people are allowing themselves to be bullied into taking this thing! (sorry...) My entire family had Covid; I myself had it twice (once during a pregnancy) and fared well. There is really nothing to worry about. For people who already took the Covid Vax and are not doing OK, dandelion supplements really help calm the inflammation. Ivermectin daily also helps for calming any reactions to spike protein exposure.
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  29. Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks. For me, when I got my Covid booster in November 2021, an old lumbar spine L4 nerve compression issue that I had (and had not acted up in the previous 8 months) flared within about the same timeframe (8hours) of receiving the booster. Not saying not to get the vaccines, but there is definitely an inflammation thing going on.
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  30. @madimi I have been reading your comments over the last couple of days and I can totally relate to your feelings. I am sharing my story and hoping it will give you some comfort. During 2020 pandemic, my daughter was around 8 years, she had a really tough teacher. She struggled a lot with online classes and having a strict teacher wasn't helping. One day my daughter had a bad day since her teacher confronted her in front of the entire class for not submitting homework. Few days later, I noticed that she started making a 'hhmm' noise every few seconds. I felt something was wrong and immediately emailed the pediatrician who said they are tics and will go away. I started the 'hhmmm' turned into new tics every few weeks, we saw hand pulling backwards, cough, throat clearing, heavy breath out, leg lifting, waist stretch to the sides or back, eye blinking, head nodding, neck tightening, standing on toes, eyebrow frowning, shoulder shrugging, touch chin to neck, shifting upper body to one side etc. I took her to two different neurologists and both of them confirmed that they are tics and they will go away. Since she was having tough time with her teacher, her anxiety levels were really high and we went to pediatric psychologist to received progressive muscle relaxation techniques. With advise from @mert, I started tracking tics, frequency and intensity on a spreadsheet. It gave me a lot of relief as I saw a pattern, approximately every 6 weeks i saw tics going away replaced by new ones. The trend continued for almost a year. After almost 9 moths of tics, my daughter started getting CBIT therapy for tics. It helped her a lot to be able to suppress some problematic tics in social situations. December, 2021, by the time we reached one year mark, tics were almost gone, one or two remaining with very less frequency and intensity. I was so happy and started sleeping peacefully after many sleepless months. For 2022 new year celebrations, we decided that the whole family have been thru a lot and need a vacation. We went to Mexico for a 7 days trip and few days into the trip, I noticed that she started with some neck and mouth tics. I was heartbroken and was full of guilt for going on a trip. Currently, 3 moths after vacation she still have tics that started during vacation and are slowly lessening frequency. I am sharing my story to tell you that it is not easy and needs lots of patience. I struggled a lot and went into depression and lost interest in life. I realized that my daughter needed me the most and need to stay strong. ITs not easy, I used to pretend normal in front of her and used to cry my heart out at nights. Here is a list of things that helped me and my daughter: Things that helped Me: Read studies on tics and believe that some of these children will outgrow them Take help, talk to your doctor and get therapy to manage your anxiety Keep life simple, don't overwork and burn out yourself. We ate PBJ sandwiches many times since I had no energy to make something good and its ok. Take a nice walk in the sun, hike, bike etc whenever weather permits. I kept the social gatherings to as minimal as possible as meeting people worsened my anxiety as they gave my daughter looks. Have someone who will listen to you, for me it was @mert . He listened to my concerns and patiently replied whenever i wrote to him. It helped me tremendously. Think of your child, how hard it must be for them to deal with tics, try to make them feel as special as you can, hugs, kisses, play time with them, appreciation, new toys etc. Things that helped my daughter: Limit screen time to as low as possible including laptop, TV, phone and tablet Make up silly games to play with them to deviate and take away stress, I used to play badminton with a balloon, skipping, charades etc. Lower gluten, sugar, processed and deep fried foods and artificial colors to as little as possible. It is believed that inflammation in the body and gut health is directly connected to brain functioning. Started music classes to keep her occupied Hope my post was helpful. Trust me its not easy. No matter what, it is just a medical condition and there are many worse conditions that this, so we should be glad. Give your kid all the love and care you can, I am sure he will outgrow of the tics and this may not even be a problem few years from now.
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  31. Get any help you can. I understand you fully and we've been in the exact situation multiple times. I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us. I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) Back to my first sentence, get any help you can, if you are not well, you can not help.
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  32. I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know.
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  33. The half life of IVIG antibodies is roughly 3 weeks. By now, most would be out of your system. Two things come to mind - First, has your doctor reviewed your symptoms to make sure this isn't some sort of meningitis or encephalitic response? Second, if the IVIG made your immune system stronger and you have a chronic infection (e.g. Lyme) then you could be experiencing a continued response to your body finally being able to attack the infection. When Lyme bacteria are killed, they release toxins as a last-ditch attempt at chemical warfare. This is known as a die-off, or herxheimer reaction (called a herx in the lyme community). When my son had IVIG, he experienced a 10-week long herx that was just horrible in so many ways. Because his body didn't "follow the script" and respond the way it should have for Pandas, we tested for Lyme through Igenex labs (waited 10 weeks to make sure all donor antibodies were out of the picture). His Lyme test was negative prior to IVIG but positive afterward, because the IVIG strengthened his immune system to a point where it could finally start fighting the Lyme and producing its own antibodies - which resulted in the test finally turning positive for Lyme.
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  34. The arrival of tics is the most difficult time and everything you read is likely to lead you to worse case scenario. I have a 9 year old who has had TS since he was 7, and just recently his 8 year old brother has developed a vocal tic. Make sure you grab a copy of Sheila Rogers book, I think everyone should start there. From my experience, my son's tics are caused from environmental factors. Heavy metal toxicity was definitely a factor and once the aluminium was completely removed from his system he has improved significantly. We made sure his nutrients were balanced and then started investigating further. For us chemical sensitivity is the key for him. We cleaned up his diet, removed all chemicals from the house (definitely research toxicity in your home), bought a high quality air filters for his room and one for the main living areas. My son still tics, but they are so minor no one even knows he has TS and we have longer periods of no tics at all. Now I'm starting again with my second son because every child is different and their triggers can be completely different. Learn as much as you can and read all that is available. ACN are amazing in what information they provide, so your in the right place and on the right path.
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  35. mar

    Gluten Free and Tics

    Yes sugar is the hardest! It is in everything and there is no way to eliminate 100 percent . With ds he had so many allergens at the point of being 7 . You are doing a great job and don't stop bc it does not happen overnight or in a month this was a long process that is still continuing 4 years later. Sugar is just bad but always remember one does not expect miracles. We did a whole allimination of eggs,gluten, yeast, peanuts , peas, milk, and pretty much 20 more things he was sensitive to bc of skin pricks and igg results. I know he had candida. The tics came and gone throughout the years but defiantly don't last as long, he had eye blinking which I haven't seen in three years and eye rolling which is once again could never complain of and shoulder shrugging which is after several years of diet that comes at times of stress but goes away within weeks . He is in baseball and basketball and I think it is totally stress related. Also let me say during that time he tested for all outdoor allergens. Mold, grass, ragweed,pollen all were real high and told at seven that he is ashma prone. I had doctors telling me he will have ashma and others trying to have me put him him on singular for 3 months and I was not okay with it. I just felt like this is not okay. We started total diet allimination with was very hard!!!! But ds is now 11 and no ashma which freaked me out and tics and overall health is so much better. Ds does not as has not taken any allergy pills in4 years .we tried it for several weeks with Claritin for his congestion in the beginning and it didn't work. We tried zantrace and no help. Diet helped him tremendously! Ds did loss weight and has a hard time gaining weight bc of his chance with eating! I learned to not worry he is 11 now and 5 foot 4 and weights 91 pounds . It took him a long time to gain weight but I know it's due to what he eats. He lost like 4 pounds due to his restrictions and had to gain that back and then some. To answer your question about giving in at a party. Yes in the beginning I let him have a plush horse cake slice at a party bc I was thinking really he always had this but did see the side effects . When you have been doing this for a while even a month you will see if it affects him and then you go from there. Back in the days it did set him off and made a difference but today he has cheese products and soy products and as long as he limits it he is good. I think with the whole plush horse cake he was just truly messed up with yeast bc I remember him looking At me and saying he does not remember anything and he seamed really confused and to the verge of crying. Since ds does not get the true life threating episodes it is amazing how things show up with behavior or congestion in his case or tics. Weeks or months will not give you the results for a quick fix. Four years later if he over does a certain food it will cause congestion which can lead to tics but he is doing awesome and he knows and listens to me with things that could set him off. He is in 6th grade and is doing great! I have learned that tics will not distroy my child! He does have symptoms off add and went throughout so much with diet and I actually know that he is stronger then me!!!! Don't give up bc you will eventually see a difference . Trier and error will teach you many things. Every child is different and you will learn if you continue.
    1 point
  36. I have been on the site only once before as a poster. About 2 years ago. My son dx TS 3 years ago. There is sooo much literature out there to sift through and stories to read about. I'm curious how many of you have seen TS proceed in the way most of the medical sites say it should (fully recognizing that this is very much a case-by-case condition). But most of the peer-reviewed studies say that the time of highest symptomology is between ages 8-12 or 9-13. Followed by a reduction in intensity as adolescence continues. For those of you who have travelled through this time period with your children - can your verify this statement/contention? With those who have older children....mid to late teens - what have you observed? The data says that about half of all TS patients are essentially tic free by 18 and another 25-35% are substantially reduced by that age as weel. I am hopeful that my son, as well as the vast majority of children will "grow out of" the days of high symptomology. It's just nice sometimes to get reinforcement of that hope by those who have travelled that road already. Any and all responses are appreciated
    1 point
  37. I admit, I was obsessed with this forum while we experienced what probably the majority who visit this site do.....panic! We did lots of tests, took many supplements, did NAET treatments, every time hoping for a miracle to stop his tics. Looking back now, when he was about 8 was when they started. He had the arm jerks, shoulder shrug, eye rolling/blinking. He just turned 14 a couple months ago and he has not had body movements since he was about 10, and about the only thing he has now is the odd eye roll or blinking. For us, I think it was and still do think it was wheat or gluten issues. Ever since we took that out of his diet, he has been great. I suppose it doesn't matter to me if he just grew out of it or if the diet changes helped, but the story I want to tell is it gets better but as most people will say, it is a journey. I would like to thank all those that gave me hope, it was appreciated and now I feel qualified to pass that hope along. You can search my old posts and see my journey, when the posts started getting less was a direct time line to my sons tics. I shed a lot of tears and felt helpless and hopeless many times but it does get better, and you will be a stronger more loving parent because of this "journey".
    1 point
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