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Hi there, just thought I'd post an experience for anyone searching. My daughter was on the usual path of motor/vocal tics for a few years starting at around age 5/6 till we really explored diet/environmental triggers and completely eliminated tics right around the age 10 mark, and she has been completely tic free for about 14 months. That includes many times of high anxiety, sickness, pressure, etc that can come with being a 10 yr old. In the past 6 months, we have tried challenge tests on a few foods. Eggs went well, and boy that made life easier. Dairy on the other hand was different. We tried challenging her with Fairlife for 2 days (lactose free milk, but it's still cow milk), and sure enough, mild tics showed right up and lasted approximately 12 days, then back to nothing. I only mention this because if you imagine a child who's system is being offended by multiple things, for a longer period of time, you can see how difficult it can be to isolate what is or isn't the offender.

5 Key Advancements in Tourette’s Syndrome Research This is an interesting summary article from Princeton Medical Institute. I find it encouraging that there is more exploration beyond pharmaceuticals, and always remain hopeful for more advances that explore understanding the causes to better facilitate treatment and perhaps cures. We also need so much more research on the many other ways that clearly help (as discussed here at ACN Latitudes) https://princetonmedicalinstitute.com/2024/05/15/5-key-advancements-in-tourettes-syndrome-research/

That's exactly how we got into this. No signs of sickness 1 year before the big onset. But that's what is happening, the dysregulated immune system- instead of sickness is showing signs of tics/ocds/behaviours. I am sure you will figure things out. Just hold on to the faith in the bodies - which can heal themselves and keep doing what you can.

Hi Tiara, Those little bodies need time to recover from whatever they are struggling. Healing is not linear and it 2 steps forward and 1 step back. Sometimes more steps back (imho). This is going to be a long haul process for many, but I do hope that you see quick results. But unfortunately there are way too many causes which might be causing our children to flare up. For us it's infections - if he gets a slight cold/cough/swollen adenoids/swollen tonsills then his Tics increase. Even after doing everything what you are doing, we are also seeing setbacks and very rarely 100% free from tics. It's hard but just keep at it, I am sure you will figure out more things and become better at helping him. May be get his blood work done and work with a functional medicine doctor. Read this book "A light in the dark - Jill Crista" on Pans/Pandas. Whether he really is P/P or not, you can help him with the recommendations in that book. Take care, Swetha

@tiaratoledo I have stopped buying any packaged food with more than 3-4 ingredients in it. Also, has to be easy to understand and easy to read ingredients in it. We are also vegetarians, seems like vegetarians have problems with getting enough vit B12. May be you can try adding that. I have also read many studies about 'Keto diets help kids with tics'. I am still finding it very hard to bring meat into his diet due to my own (moral) reasons. I have started adding eggs, initially he had issues with eggs as well, but slowly he is able to take it. In my opinion, any artificial colours are bad. I was giving my son certain fish oil capsules which were made of gelatin and has some yellow in it, which increased his vocal tics. As we removed it, the vocal tics kind of calmed down. Colours are the worst enemies for our children. You got to get rid of any/all products with colours in it - handwash, soap, dishwashing tabs, clothes washing liquid, perfumes, air fresheners at home/car and last bit not the least food colours! You got to become a detective now! 🙃 Good luck with that! Swetha

It sounds like you're already in a good mindset; it is a rabbit hole mind you . My wife is a dietician and we were organic as well back when my daughter started ticcing. You may be surprised by how many foods labeled organic contain MSG or glutamates (like yeast extract or "natural flavors"). Our naturopath did really help us figure out what to eliminate. Any correlation to red tide?

You can remove one thing at a time and see if it has any affect, but unfortunately it often takes on the order of weeks to months for the system to calm down from any one offender, and sometimes there are multiple offenders so you could still be doing good, but just not enough. What we did is more of a shotgun approach, eliminated a lot, and then reintroduced things. It helped to worth with a naturopath who knew a lot about options. Yes, this can be more traumatic, but the tics were bad enough for us that it was worth it. We are to the point with my 11 yr old who is now normally tic free, and that we can give her dairy or anything with MSG (and all of the various sneaky names with glutamate) for one day, and she will flare for about a week or two. We have an artesian RO system from the Perfect Water and really like it. We are completely scent free, no dryer sheets, no perfumes, no incense, no bleach, and certainly no febreeze.

Hi Tiara, Have just read your posts on your son's situation and I can clearly understand what you're going through. There is definitely something going under the hood for your son and once you find the root cause, this will all go away. Pediatricians/Neurologists are HOPELESS and I would suggest you read Sheila Demare's books on Tics/Tourettes as the starting point, that would give you all the strength you need to get started. Diet is the biggest trigger for my kid and there is a lot of improvement once we got rid of dairy/gluten/sugar.Food intolerance and allergies can cause triggers too. Functional Medicine/Environmental Medicine are the one's you can start talking to who can diagnose your son and let you know the root cause. Stay strong and you WILL see light at the end of the tunnel

@tiaratoledo you have some very helpful info being shared with you! My own son had a similar journey to yours-starting some tics around 4yo I can't post much now due to some work constraints, but just wanted to encourage you that you have much reason to be hopeful! My son is now in his mid 30s and living a full life. When I think back to the desperation I felt back when all this started, I can only be thankful that the natural pathway to helping him was fruitful! Here's just one of many threads here where good reports are shared

If anyone is following the recent end of 2023 news about lead contamination in cinnamon that was discovered in kids fruit pouches, it led me down a rabbit hole of looking into heavy metal contamination of spices. Who knew that certain producers add lead to spices to increase their weight. That said, I found an interesting article about a family who dealt with lead contamination from paint in which the kids were diagnosed with Tourette's Mom with lead-poisoned children says Flint crisis 'hits close to home' - mlive.com This begs the question why wouldn't a neurologist run blood tests for this out of normal practice? Our neurologist didn't even consider blood testing for heavy metals.

Hello! I wanted to share some things that I think may be helpful to understanding a part of the puzzle, for some, with Tourettes and also OCD. Many years ago I was an active member on this forum. My son, Daniel, has Tourettes and I have OCD. The very good news is my son is now 19 years old and honestly you would never know he has Tourettes. He is doing amazing. Once in a while I see a little eye tic but that is it (but barely only when he gets nervous. What a difference from when he was 7 to 10 years old). But I want to share with you some insight that may help some of you that I have learned. I know there is so much information out there and our bodies are so complicated that it is not a one size fits all issue. I have found out that there is something in our family that is definitely an issue that was influencing my son's tics and also my OCD. It is histamine intolerance. Meaning that in my family our bodies are getting too much histamine in our bodies and it is affecting our neurotransmitters ultimately in my son's tics and for me obsessive thoughts. There are many, many articles out there about histamine intolerance and what to do but this is a tiny synopses. Histamine occurs naturally in many foods. Also, some people just do not have the right enzyme base to break it down or their bodies are just poor at processing it and what happens is your get this build up of histamine that ultimately changes the way your neurotransmitters are working. Histamine actually has multiple functions in the body not just affecting the neurotransmitters. Just do a Google search on "Histamine Intolerance or Mass Cell Activation Disorder" and you will get lots of info. When I was doing my research many years back for Daniel I kept coming back to histamine being a problem and how it affects the neurotransmitters (especially how it affect dopamine which drives the tics). So I have known about this histamine issue for some time but now it has become even clearer for me. When Daniel was younger I would give him supplements him B6, magnesium taurate, glycine (which helps with the neurotransmitters), zinc (do not take on empty stomach), vitamin c. These things all really helped him but I really did not understand why back then. So to take this a step further about 3 years ago my OCD was getting bad enough I spent the money and went to the Mensah Medical (I live in Arizona but they come here periodically but they also do phone consultations. They are based in Illinois) and it was verified that I indeed have this histamine intolerance along with a copper overload. I have been on a compound the Mensah Medical had formulated for me to lower this histamine response and deal with the copper overload and I feel soooo much better I cannot tell you. It really made a difference. The Mensah, unfortunately is pretty expensive, but I learned a lot and I learned that these obsessive thoughts (that I would take to personally that it was a reflection of who I was as a person) is something I could now separate myself from and realize this is part of a situation where my body is processing things biologically incorrectly due to this histamine issue/copper issue and it was not a reflection of who I was as a person ( OCD obsessive thoughts always goes after what you value most in life which is the most frustrating part of OCD). I was at the point back, when I decided to go to the Mensah medical, where I was obsessing about obsessing if that makes sense. I am Christian and I had prayed for an answer for my OCD and through a series of events I got my answer and it was the Mensah medical. So fast forward to now and my daughter who is 15 has been getting depressed, has bad migraines, and complaining that her stomach hurts all the time. It dawned on me the other day about this histamine issue and I thought I wonder if this could be going on in her but in a different way (when I started researching all her symptoms are symptoms of histamine intolerance). So the last few days I started giving her supplements to control the histamine more in her body B6, Magnesium Taurate, Quercetin, B2, Zinc, and NAC and also stopped giving her foods that are high in histamine and guess what her stomach is feeling better, her mood has changed, and her headaches are better! That is just after a few days. My other son, Zach, he is 18 and he has pretty bad digestive issues and I think this is what is going on with him too. That is the interesting thing with this histamine intolerance is it can affect people in different ways. So to tie this together even more, this past year 4 of our family members, one being Daniel, decided to do " 23 and me" genetic testing. Well if you purchase the 23 and me kit that shows your health traits you can see a lot of genetic things that could influence your health. When you pull up the "23 and me results" they show you all kinds of DNA health traits. But there are some DNA things they do not show and I found a website called Genetic Lifehacks. The lady who started this Genetic Lifehacks has an article that is called "Histamine Intolerance and genetics check your 23andme raw data". What I did is I opened up Daniel's 23 and me results (again you had to have the health traits ordered not just the ancestry results to do this") and also had this webpage up at the same time (I toggled between the two). The lady who created this has a list of links you can click on, in this article related to how histamine can be genetically influencing you, and you can click back and forth and see what your genetics can tell you about how you process histamine in your body (again if you look at just the standard 23 and me results you will not find this. You have to go to this extra step to find this. To no surprise I found out that Daniel's body has issues with processing histamine. I looked at my mom's and my husbands results and I found the exact same thing. What it is looks like is my children inherited from both sides of our family genes that make histamine a big issue for our family. So they got hit from both sides of our family genetically with histamine issues! My husband has had tinnitus the past few years and I had come across an article a while back about how histamine can be a huge influence on tinnitus (ringing in the ear or other sounds). My husbands tinnitus came out of now where and it is both ears. For some people they get tinnitus because of loud sound exposure but this was not my husbands case and so we had a mystery on our hands as to why. Well what I found out is that antihistamines (like Claritin or Zyrtec) they do not stop the histamine from being made they just block it. As a matter of fact what I read is the longer you are on those kind of antihistamines the more histamine your body makes it is just being blocked but it can cause tinnitus in some people. My husband has been on antihistamines since his 20s (he is now 53). So we took him off those over the counter drugs and he started taking vitamin c, quercetin (which is like a natural antihistamine) , zinc, nac and guess what his tinnitus has gone down significantly. It is not completely gone (I think it is because he still eats a high histamine diet and also there are foods/beverages that block the enzymes that break down histamines (like coffee and he drinks a lot of it). The other thing I want to mention and I cannot stress this enough is research hidden names of MSG! My son and i both REALLY react with our nervous systems to MSG and it is not just Chinese food. It is in so many products. Daniels tics would be way worse even with a little amount of MSG. MSG is a frustrating thing because it has to do with the molecules being excitatory. It is hidden under different names because what these food manufactures do is they take a food, like yeast or soy, and they cook it for a long period of time to enhance the flavor. In the midst of that long cooking process the molecules change to an exictatory state. . So when you see a product like "autolyzed yeast" or "hydrolyzed soy protein" they have an excitatory property in it for someone who has nervous system conditions. Wihen Daniel's tics were really bad (about 10 years ago) I did a ton of research on "hidden names of MSG" and we started avoiding those food (this also includes artificial sweeteners). I also found that foods with high fructose syrup and food dyes (especially red) affected him and me too. One time I ate a lot of Red Vines and my anxiety levels were off the charts. So I know I put a lot of information out there. There are doctors who specialize in histamine disorders (some call it Mass Cell Activation Disorder) (like the Mensah Medical I went to). The 23 and me health traits with doing the link between that other website I told you about might give you a lot of clues too but just do some research on histamine. I came across an scientific article last night when I typed in histamine and tourettes and it came up with this very complicated article about how histamine can be the driving force behind Tourettes. Again this many be an answer for everyone by any means but it is definitely something worth looking into. I really hope this can help someone out there in their quest to find answers. What is so interesting to me is the other day I prayed and asked God to show me what was going on with my daughter (her migraines have been so bad) and this histamine issue is what came back up after I prayed. That is when I started doing my research for her and it brought this thing full circle again). God is so amazing to me!

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!

I hope this helps someone out there. After many years of horrible (yes, horrible) tics, sensory issues, and emotional instability my daughter is basically tic free, happy, and calm. We tried so many things that we read here and elsewhere. From supplements, fragrances, different diets including gluten and casein free, throwing out furniture and decor, we left nothing unturned. What have we found was the culprit? Plant based foods. She grew up with a diet primarily comprised of organic fruits, veggies, and meat. Had white sugar the first time about 1.5 years ago. We cleaned with vinegar. She drank nothing but water. Her diet was "perfect" yet our lives became so stressful. Now she is perfectly normal as long as we severely limit the fruits and veggies. Raw milk is a miracle drink. If she's emotional or having slight tics due to too much plant food then milk saves the day. If we go somewhere with essential oils being diffused then we will pay the price for the rest of the day. I know this sounds crazy, but if you are stressed and tried everything you know to try it can't hurt to cut out plant foods for a couple days...meat, bread, peanut butter, raw milk work for us. Obviously you still need to include some plant food for nutrition long term. Blessings, Nate