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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.

Update : 11/19/2024 Hi Everyone, We started working with Dr.Piper Gibson on my daughter tics issue. She had her bloodwork/genetics tests done and looks like my kid has heavy amount of mycotoxins in her body, which probably came from mold in the house and mold from grains. My kid is also sensitive to many foods and she is intolerant to dairy/gluten/sugar Dr Piper suggested a 6 months protocol for us during which we have to go for a dairy free/grain free/gluten free diet She suggested supplements to flush out the toxins from her body and fix the leaky gut. The journey just started, will keep updating on how it is going, thanks for all your support

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

I remember being that mom who went through all the hard stuff of having to say "no!" to all the so called treats that are actually tic triggers for a child who is susceptible. But oh my! it was so worth it to not have my son go through waxing tics that can often last quite a while, for one night of worthless junk food. There are healthy alternatives that can replace what might not be good for them. Take it from someone who learned this the hard way many years ago.

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms. Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies." I mention that just to expand your thinking about allergy. I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics. I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. A Checklist for Brainstorming Triggers.pdf

Hi Chemar, Understood. We have already started maintaining a journal. Thanks for the info as well. Glad I found this forum, appreciate all the help am getting here.

Yes, get the RealTime mycotoxin test for mold. Also try giving liposomal glutathione prior to the test. My daughter had all zeros on her first test because she could not detox the mold at all. After the glutathione the numbers went way up! Make sure to check for Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure she can fight whatever she has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Man, some of the posts here really bring back memories of sleepless nights. What I have learned so far on this journey is that I think there's a heck of a lot more individuals with motor and vocal tics than the medical profession wants to believe. There seems to be a vast number of cases out there that don't elevate to the level of Coprolalia; yet that is what's noticed and publicized. I also feel that the "moderate" cases are poorly understood (poorly funded research) and is probably why the medical profession seems completely blind to any other solutions than medication. Moreover, i dont see a whole lot of doctors with enough depth of knowledge to wholistically put it all together. All i know is that my daughter progressively got worse up until age 8; at which time we became aggressive in diet and environmental control, and now at age 10 she is completely tic free. Like zilch since July 2023 except maybe once when she was sick. Before we did anything she was ticcing upwards of 40 times per minute, had OCD tendencies, and had an aversion to loud noise. I find it really interesting that she can tolerate loud noise now.

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.

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!

Thanks for sharing your experience @fgter, this is truly valuable! My 6 years old daughter is going through tourette and I will start the consultation with Dr Gibson tomr, It’s a incredible challenging journey, but here’s to cheering for myself and all the incredible moms out there fighting for their kids dealing with tics!

Not to get too graphic, but it was loose stools a few times a week over a period of a few years. Pediatrician's repeated response was "It's no big deal, we're just glad it's not constipation". I want to say that the loose stools came before the tics started around the kindergarten age (started with eye blinking). The symptoms were our first clue, then we had an IG panel run which showed elevated response to a few things, including dairy (i wouldnt put too much stock in an IG panel however). Ultimately, we did an elimination diet under the direction of a naturopath and dietitian (my wife), and the stools gradually got better over a period of months, so that was really our confirmation. Supposedly celiac's also have a long heal time so I think in general if the gut is angry it takes awhile. She does NOT tolerate lactose free cheese and milk and that was a good challenge test after the elimination diet. I think that means something but haven't researched it too much. I made a thread about this the other month where she's been tic free for awhile now and we tried lactose free milk and it triggered loose stools and tics. She regularly has dairy free cheese, butter, and milk without issue. Cheeses usually by Violife or Daiya. Butter is by Melt Organic or Earth Balance. Milk is usually original almond milk.

İlginiz I want you to know how important this article of yours is to me. I am grateful

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

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.

We received the same response from the neurologist and felt abandoned as well at the onset of all of this. Fast forward 3 years and we completely turned things around without medication. There is hope.

Hi Atex, I’m facing a similar situation with my almost 5yo son. We are also at the beginning of the journey, trying to understand more about this condition, triggers and natural treatments. We had a neurologist appointment today and it was disappointing to say the least. He basically said there is nothing to do unless I want to put him on meds. This forum has been very important for me as well. I hope the 6 months protocol can help your daughter and that soon your new update will be that she is totally tic free 🙌🏻 Tiara

Hello, My son is currently 12 years old and has had tics since he was 7. (my second son has nothing) At age 9, he was diagnosed with Tourette Syndrome by a renowned university. He does not exhibit any comorbidities such as obsessive-compulsive disorders or ADHD. According to our professor at the university, this would further enhance the positive prognosis, and we really want to believe that. The initial period was the hardest time of my life. The feelings of helplessness, sympathy, and despair were overwhelming, leaving my wife and me in shock. We were like in a trance. I know every study and publication on Tourette Syndrome and have devoured everything to help my son in any way I can. Since then, I have been keeping a sort of diary to record the developments. I only recently discovered this forum and have read everything. I understand you all very well and want to encourage both you and myself.I plan to share my diary, which I had previously kept private, on this forum at a later time. This condition is like a mystery box, making it difficult to predict outcomes, as ultimately, each case is unique. I often oscillate between hope and thoughts of naivety. Our son has a range of vocal and motor tics, which vary greatly in their fluctuations. There are few months where he has almost no tics, and then suddenly they start up again. Our most distressing tics are screaming (squeaking) and head jerking. It is a very loud and sharp squeaking. The squeaking draws attention from those around him, which triggers him even more. Sometimes I'm afraid that his vocal cords might get damaged. The head jerking causes headaches and discomfort, and there is nothing we can do about it. We never let our concern for him show. We give him a lot of love and support him in every way we can. He is very well integrated into sports clubs, has many friends, and performs well at school. He doesn’t like learning at all, and homework is a daily struggle, especially during a severe tic phase. The entire school and all the teachers are informed. The parents of his friends and the clubs he is involved in are aware of his condition. What makes it so challenging to grasp this condition is that online, you mostly see children with more severe cases, such as coprolalia or complex tics involving multiple movements. Our son does have tics, but generally, he does not have complex tics with his arms. For example, he makes grimaces and squeaks, or jerks his head and sniffs. When the tics are very severe, he might do them about 40 times a minute. Currently, he squeaks about 10 times a minute. What I always find missing are experiences regarding fluctuations. Some studies mention a peak in the condition around age 12, others from ages 12-16 or 10-20. I never know if we are currently at a peak and it will get worse or if it will stay the same. I sincerely hope for a calm period soon when the tics decrease. During these phases, like now, I feel completely beside myself. Due to the noise, I hear him constantly and feel a great deal of empathy and worry about the future. While motor tics are less noticeable, vocal tics inevitably make one feel sad. Of course, we ignore it. We encourage him by saying that it will eventually be over or greatly reduced. However, we don’t talk about it much, as our university professor advised that we shouldn’t focus too much on the condition. We also don’t attend support groups because we don’t want him to pick up tics from others. One of my greatest fears is that as he gets older, he will search online for Tourette Syndrome and come across videos of children with more complex tics, and then adapt those tics himself. When he was first diagnosed, he had a brief period of coprolalia, but it has not reappeared in recent years. We focus on a balanced diet and do not detect any allergies, at least not related to the respiratory system. He has no allergy symptoms. So far, our university and the Tourette's specialist society have not informed us about possible allergies, food intolerances, or other factors related to Tourette's. However, we are still open to having allergy tests or food intolerance tests conducted if necessary. On the recommendation of his psychologist and the university, our son is currently taking Tiapride, which he tolerates very well, except for occasional drowsiness. My diary shows that when we increased the dosage, there was a temporary improvement. Based on experiences from others that it is normal for calm periods to follow severe phases, I am uncertain whether we should discontinue the medication. Perhaps it has never been effective, and the improvement was due to normal fluctuations. Once a calm period returns, we will likely try tapering off the medication. For now, I am concerned that this phase may last longer or worsen. Recently, we have also started giving him magnesium, vitamin B6, and omega-3. We would be happy to stay in touch with other parents here and provide updates from time to time. This will help others after us to better understand this condition. If you have any questions, feel free to ask me everything. Kind regards

I can really relate to your comment about feeling like you're in a trance, like it's almost unbelievable that this has happened. And, I totally get your observation about the focus on the severe tics; I think this is a big reason why the condition is so under reported. We were about on the same track with my daughter and really turned things around at about 9.5yr old age once we identified a few of the main triggers, and they were not obvious. If you would like to know more, feel free to reach out to me.

@Swetha Magnesium glycinate (we use Metabolic Maintenance) is also very good for tics. Take before bed to help with sleep. Regarding B12, a blood test only shows circulating B12, not intracellular - which is what matters. Our doctor says excess B12 is "peed out." My daughter called B12 her magic pill! I would not back down on that!! @Sandy50 Frequent urination was an early sign for our daughter. A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

It's all so overwhelming, but I'll try to keep it as brief as possible. I know the road to healing looks different for everyone, but I value the community here and I'm just looking for some feedback/support. Background: My daughter is 13 and has had motor and vocal tics since she was four; they change in nature and wax and wane, although lately, they're at the worst they have ever been. At age 4 she was given antibiotics for candida albicans overgrowth...the pills given to her had to be crushed up and mixed with food which she hated. We struggled and had a lot of really terrible moments where I felt I was forcing her to take the medication and she just couldn't make herself do it because of the taste. I have a lot of guilt over this and I didn't know half of what I know now about gut health. I don't know if she ever fully recovered from the yeast, although her external symptoms cleared up. Around age 9 she developed some very specific OCD behaviors that were focused on intrusive thoughts and rumination. In 2020 she began to struggle with compulsive hand-washing and constantly feeling like her hands weren't ever clean enough. (Thanks COVID). Since reaching puberty, her anxiety has gotten a lot worse, especially social anxiety. She has been officially diagnosed with general anxiety, OCD, TS, and ASD. Present: She sees a therapist once per week and we have both noticed an improvement in her anxiety because of this. We now see a neurologist who has diagnosed her with PANDAS and she is starting cefdinir tomorrow. She's taking omega, iron, and vitamin D supplements based on results of lab work. She also takes milk thistle, NAC, and inositol. Lab work also indicated inflammation. I had her tested for food intolerances and she showed high IgG reactions to gluten, eggs, and dairy so we are starting a strict elimination diet today. We already use hypoallergenic and chemical-free cleaners (thank you Force of Nature). Future: I'm going to have her start taking digestive enzymes and L-glutamine for gut repair. I'm having her gut microbiome tested with a stool analysis company called Flore; they will also create custom probiotics for her based on the results. I'm going to test our home for mold, we have only lived here one year but there appears to have been water damage at some point (I'm scared of the results because we cannot aford to move right now). We will be going back to our chiropractor once per month like we used to (she uses the Torque Release Technique). I'm starting her on curcumin for inflammation, as well as the antioxidant resveratrol. Other random thoughts: She has had chronically chapped/dry/peeling lips since she was very young. Could this be related to candida? How to heal if the gut microbiome results point to SIBO?

@mert your post today made me remember one from many years ago by my friend Lara. It helped me so much in those early days after my son's tics began, and we received the Tourette diagnosis- especially in realizing that there was that needed balance in helping him by improving what we could - but also not letting helping become a hindrance to him just being! Here it is again:

As long as there are no comorbid issues, chances of 'tics' getting worse are significantly less. 'verbal' tics are rare and 'swearing' is even rarer. At this moment therapy does not have much use and may impact negatively as it will create additional stress. He is too small and his life is not affected so no need to try any medicine with a lot of side effects. Try to learn to completely ignore tics. That is the hardest part. Your child will understand you are watching him, he will also understand because there is something unusual , he will be stressed and tics will increase and this will create cycle. We all have been in this situation. I still struggle trying to ignore tics after so many years, but that's what you need to do. And that's what you need to tell his teachers. Unless the behavior is harmful , ignore. I recommend focusing on gaining skills abilities, that will help with confidence, that will help him manage stress and that will prevent him getting under stress. i.e. Trying to learn is extremely stressful , start a bit earlier with baby steps so he won't be stressed when the whole class is racing to learn reading. i.e. Develop physical capabilities ( no one wants to arm wrestle my daughter after she beat the strongest boy in the class, according to rumors he is still upset) i.e. Teach football so he is the star at PE lessons. Our minds are designed to look for a solution, relate the problem with a condition, i.e. she drank too much milk, tics got worse. Some can be correct, some will be imaginary. Being unbiased will be extremely difficult. Also I am still questioning which one is better, should we stop triggers or just ignore. I used to stop triggers, but I switched to ignoring them. Wearing googles during swimming used to trigger eye tics by a lot, now it doesn't and she swim like a fish now. Playing volleyball would trigger some certain tics, even when she was playing well beyond her peers, I kept on playing. I recognized that when I am negative about how she plays and demand more tics got worse, when I am positive and demand more performance encouraging here she gets so much better... Jumping from subject to subject, ADHD, OCD do not come and go, especially OCD is easy to notice, though some of his behaviors will look like OCD no matter... I had the same issue, when tics elevated , discipline becomes tricky. I still struggle and I am still trying to figure out best ways. However I never let her use this in her favor. What I 'try' to do is, convert all my 'negative' actions to positive ones as much as possible. i.e. Instead of giving a penalty, I ask her to explain me why she is wrong herself and pick a penalty of her choice. (I got pretty funny stories around this as sometimes she picks up to harsh penalties) . My rules is always trying to pause a bit and think how I can convert this into a positive and constructive experience. (not always possible) From the positive side, tics actually enabled me to be a far better father than I probably would be. It forced me spend far more time than I'd probably spend with her. End of the day, this created a nice bond with me and her. By the way, talking to my close friends, two of them just told me (and I've recognized after they told me) they still have some tics and they happen when they are anxious. Tic frequency within the child population is significantly higher than adult population. End of the day, whatever we write, whatever you read, you will be worried, you will be stressed. I lost 17kg's within a few months. (happily gained all of'em back) Please also note that my recommendations are based on my experience and everybody's case is different.

My son was experiencing pain and digestive distress. The doctor suggested an endoscopy/colonoscopy as they suspected Crohn's, and it was confirmed during the examination.

Thank you so much for your reply. May I ask, what led you down the path to his Crohn's diagnosis?

Hi gingermom Hopefully someone with more PANS knowledge stops by- but I just wanted to welcome you, and say that I am thankful there was that relief from the ibuprofen. fyi CVS has their own brand 200mg dye-free ibuprofen (we have always avoided food dyes) My son dealt with Tourette along with intense OCD, and we do suspect a PANS component, but this was many years ago-but we also used a natural anti-inflammatory by NOW called Boswellia extract that has Boswellia + Curcumin. Our Integrative MD also suggested Olive Leaf Extract as a natural antibiotic, and you will find other posts about it -sometimes abbreviated OLE - I do hope you find the info you need to help your daughter.

I just saw this article which might be of interest to others here. Five latest advancements in Tourette’s Syndrome research

Bumping up this old thread as it just might have helpful info for anyone looking for tips on what may help to reduce tics, and others may want to add their own helpful info too.

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

Has anyone’s PANDAS kid contracted COVID 19? If so, please describe symptoms and what happened afterwards in as much detail as possible. I’m sure I’m not the only one worried about what will happen to my PANDAS son should he get Covid.

This is very interesting to me. I can't wait to try Ivermectin. I've watched a video of Dr. MoBeen explaining how the immune system macrophages respond and he was explaining cytokine storm. His description sounded so familiar with regard to "inflammation" that I can't help but wonder if this is what is happening in our pans/pandas kids. When my kido's pandas symptoms get exasperated, her inflammation markers are elevated. More often than not, we test her for an infection and she ends up being positive for bacteria and then she get a treatment and her symptoms subside. In another video, Dr. Pierre Kory talks about Long hauler effects of having covid and how the treatment of Ivermectin in Covid patients with underlying symptoms of Babesiosis/Lyme symptoms clear up. I asked our pandas doc about using ivermectin but she chicken to prescribe it because she says the pharmacy with question it. I'm thinking of using an on-line doctor to get a prescription of ivermectin as a prophylactic being it's no more of a risk than taking ibuprofen.

My daughter has CIRS and yes, that can cause tics. In her case, the mold exposure was/is in the schools. We found three things helpful - improving the environment, treating a fungal infection in her sinuses (frequently accompanies an infection called MARCoNs) and helping the body detox. I could write a novel on all of this, so I'll only focus on the environment since that's what you asked about. We did some basic cleaning up of our home (replaced carpets with hardwood, tossed lots of things from the basement, run a dehumidifier, got rid of house plants) but our ERMI test showed that the house wasn't the problem. And there wasn't much we could do about the schools. So we fought a long battle and eventually got the district to put IQ Air GC Multigas air filters in each of my daughter's classrooms. Her attendance went from a few hours a week to full time. So definitely consider this kind of filter - it's portable and most sellers give you a 60 day return policy if you find it doesn't help. For your house, if the problem is with the AC, then it's likely that mold spores have been spread throughout the house. So it's not crazy that the 2nd company is suggesting such an intense approach. But...I'm wasn't born wealthy, so I can understand wanting a more realistic approach. The AC system obviously has to be fixed in a way that the problem doesn't come back. And I would definitely ditch carpets (even if it means having bare subfloors for a time) - make sure the carpets get rolled up into heavy mil plastic and removed out of the house through the closest windows, not carried through the rest of the house. Remediate what makes sense in the bedroom, and clean everything you can on your own in the rest of the house (window treatments, all clothes, wipe down everything you can with Benefect or EC3 cleaning supplies). Get the IQ Air filter for your daughter's room and maybe the family room. Consider mattress encasements and replace pillows. Make sure your washer doesn't have mold. Do the easy/cheap/obvious stuff yourself. Then between this level of remediation and detox, see how she feels. If the tics start to subside and she starts to feel better, you can chip away at the problem until she gets healthy. If she doesn't recover fully, then keep looking for a mold source and consider more extreme measures. You can find helpful information here http://moldcontrolonabudget.com/ The site is run by May Dooley and she's super helpful. You may ultimately need to go full out, but nothing says you need to do it as a first step. Hope this helps.

Dr K is eccentric to say the least, but he is absolutely brilliant, has been treating children with PANDAS since 1998, and watching him interact with his patients is nothing short of amazing. My son was diagnosed with PANDAS in August 2017. The doctors in our surrounding area in WAshington State did not have expertise in the treatment of PANDAS. With our son’s abrupt, scary, and intense onset of symptoms, I wanted to take him to a expert in the field. After sleepless nights reading peer reviewed journal articles and researching pediatricians, I emailed Dr K. and asked if we could skip the consultation and come directly to Oakbrook, IL for an office visit/consultation and IVIG treatment. He was amazing! While his communication style with adults is somewhat abrupt and slightly offensive at times, watching him interact with his patients is really wonderful. My son adored him. Dr. K’s prognosis and timelines were spot on. He was familiar with all of the current research, has a wealth of experience and could answer all of our questions concisely. The IVIG treatments were well organized, the staff members were compassionate and impressive , and the whole process was seamless. The follow up has been adequate: Dr K. only replies if there is something pressing or urgent (you need to write “Urgent” in the subject line,) but we have followed all of his post care instructions and the outcomes have been just as he described they would be. His emails are usually only 1 or 2 liners, but they tell you everything that you need to know. He saved our son and our family.

The progression of her treatment was as follows. Amoxicillin (failed), Azythromycin (failed), Cefdinir (failed), Prednisone (failed), IVIG Monthly with Cellcept (some improvement), IVIG Cellcept solumedrol (improved then failed), IVIG Cellcept rituximab (improved then failed), IVIG Cellcept cytoxan (improved then failed).... then... IVIG (monthly) Cellcept (daily) tociluzimab (monthly) almost immediate, steady, staying improvement.

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.

Hi to all of our members this thread is primarily for posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL) Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion thanks for your help in putting this valuable resource together

As someone who went through 13 years of Lyme, I've amassed a number of helpful resources: 1. http://www.lymebook.com/ (many books on Lyme and associated infections) 2. http://mpkb.org/ (one protocol) 3. Richard Horowitz's comprehensive book

Tylenol (acetaminophen) depletes glutathione. Glutathione is the body's most important antioxidant. It has a critical role in protecting cells from oxidative stress and maintaining the immune system. Here is a good article on glutathione: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html High doses of acetaminophen or long term use depletes glutathione, which is made by our liver. This is the primary reason for this widely used over-the-counter drug's well-talked about liver toxicity. When someone overdoses on Tylenol, NAC will be administered to clear out the liver. NAC (N-Acetyl-L-Cysteine) is a precursor to glutathione. In my ignorance many years ago, I often gave Tylenol post-vaccinations to both of my children. Glutathione escorts mercury out of the body. Some vaccinations at the time my children were young contained mercury. By giving them Tylenol, I was unknowingly putting them at risk for mercury toxicity. They both have heavy metal loads to this day. We only use Ibuprofen and completely avoid the use of Tylenol.

Well we got our culture results and there were many gram positive anaerobic bacteria found. The dr said it was consistent with strep. We are beyond thrilled that she is 100% cured and are praying that it holds. Just thought you would all be I retested in hearing some hopeful news...

Bridget it s so worth it! Yes the recovery is awful but even while in terrible pain I saw the twinkle in her eye and knew she was back. The thig you will want to ask is if the dr will culture the tonsils to see what infections may have been hiding. The second is medications. Much has changed recently when it comes to post tonsillectomy pain. They no longer give codeine as several children have died from it. The only med other than Tylenol(which does nothing!!) is oxycodone but it is risky for anyone with central sleep apnea so you will want to discuss the pain plan. They also give pain meds during surgery and you will want to kmow about those as well, even though the child will be itubabated. We participated in a sleep study at mass eye and ear. We were given a mystery medicine post op which was either Motrin or Tylenol. It could only be given every 6 hours and was a study not on pain management but bleeding post to sillectomy. These docs believe Motrin is as safe as Tylenol. I can tell you I think we had the Tylenol because the pain was horrendous. She could have had Tylenol every 4 hours but the study only allowed for every 6. As soon as the 8 th day passed and the study was over I gave her Motrin and she slept through the night for the first time. Thank goodness for the oxycodone which we reserved for the wee hours of the night when she woke thrashing in pain and med time was hours away. I also recommend you stay over night off they will allow. Its a horrendous night and its a godsend to have iv fluids as they can not swallow a thing that first night or so. My DS was a trooper and we are so happy to have her sweet self back. It was worth it even if it doesn't last. at least we know that no matter how bad either of our kids may get, this has proven to us that they are still there and WILL get better. There is always that fear in all of us that we may have seen the last of who we once knew. Now I can put that fear to rest, celebrate the good days and get through the bad.

We have done gluten and dairy free, also no preservatives or artificial ingredients. It has been 4 months and we have seen 95% improvement in tics.

I have performed about 20 or so ERMI tests for housing. And, that does not include the ERMI testing I have had done at the school. We moved into a house with an ERMI of 3 (the best score we could get out of the 20 or so) and made it less than 1 over the course of the first year living there. It was extremely difficult. I will PM you with the radical steps we had to take to make the new house livable.

HOW TO FIND A LLMD -- a/k/a a lyme literate medical doctor Lyme and other tick borne diseases are usually a clinical diagnosis -- that is, the diagnosis is not reliant on blood tests because the current blood tests are often inconclusive. Therefore, it's extremely important to find a doctor who is very skilled and experienced in treating tbd's (tick borne diseases). These initial exams are very thorough, often 2-4 hours in lenghth. They include a full review of patient history, lab work, and an extremely extenisve physical exam. These doctors are often called LLMD's (lyme literate medical doctors). They follow the treatment protocol as outlined by ILADS -- International Lyme and Associated Diseases Society. ***These doctors are VERY SKILLED at treating the multi-infectious patient. Rarely is a patient dealing with simply one infection. Often, there are multiple infections transmitted by ticks. But also, once the immune system is compromised by the initial infection, the patient often becomes susceptible to additional viral and bacterial infections. These doctors know how to peel back the layers of the onion in giving complete treatment. They know the best combination of abx to treat these infections, along with non-abx treatment to add to the mix (supps, naturopathic, etc). Resources for finding a doctor: 1. Contact ILADS.org and ask for listing of doctors in your area. http://ilads.org/ 2. Go to www.lymnet.org Flash Discussions / Seeking a Doctor Post a message titled such as "need llmd in Texas". You will receive personal message with names of doctors. This can be very helpful, as they will sometimes give you more detailed information, or have personal insights to offer about the docs. http://flash.lymenet.../ultimatebb.php 3. Contact the lyme support organization for your state / county / town. They can help you find doctors in your area. http://www.lymenet.org/SupportGroups/

I guess I hadnt seen this thread before. To add my son's story: (he's in his 20's now) His tics started around age 5-6, heavily noticeable by age 7. At age 8, I took him to a chiropractor who did APPLIED KINESEOLOGY and determined a variety of food allergies. (corn/wheat/eggs/dairy/chocolate). When we removed all of these food allergans from his diet, his motor tics were reduced at least 90%. He also stuttered and had vocal tics. Stuttering itself is considered a vocal tic as well. The food allergy avoidance did NOT help the stuttering, and he still had some of the other vocal tics (high pitched sounds at intervals, etc). However, at age 10....although he had BEEN seeing a speech therapist through the school weekly since age 6......I took him to a DIFFERENT speech therapist, who had additional training in treating DYSFLUENCIES (of which stuttering is). In less than 6 months,....he was fluent. Now, a good 15-20 years later....he is still fluent, and doesnt have noticeable tics. (note: the food elimination was VERY difficult to manage to eliminate EVERYTHING....so, there were a few years where we eased off on the diet, then put him on clonadine --Catapres---a low dose, and it was effective as well. ) I would also note that we tried allergy NEUTRALIZATION drops for the food allergies....and , for whatever reason, those DIDNT reduce the motor tics, however completely avoiding those foods did. I know many other people would swear up and down that the neutralization drops worked for them.....but ---for what it's worth--that's not what we found. BEST WISHES to all of you !

Not sure if this is allowed but I wanted to give a SPECIAL THANK YOU to both of you. Not sure sometimes where I would be emotionally if it weren't for the both of you. I realize today how precious time is and how many of us always feel there are never enough hours in the day to do all the things we want to do. But you two have taken the time away from your days to help a complete stranger.....I Thank You from the bottom of my heart and pray everyday that someday the WHOLE world will be filled with people like you two! Thanks You so much again and God Bless...

Updated 2020 Suggestions for finding a practitioner People frequently ask how to find a practitioner who can treat tic disorders along with, or without, standard drugs. It’s a difficult question to answer because there are important factors: 1) The severity and nature of the condition 2) The age of the patient 3) The location and willingness to travel 4) Insurance and financial resources Also, because alternative research for tic disorders is lacking, most professionals in alternative or integrative health fields have not treated a lot of tic cases. Sometimes people successfully help themselves or their child through self-education and basic wellness approaches. Others may decide to seek out a chiropractor, naturopath, or homeopath. Biofeedback is sometimes tried. You can search the Internet for a number of referral associations for these practitioners and receive explanations of their disciplines and services. Their backgrounds and training can vary greatly. ACN has received the most positive feedback on the use of nutritional therapy, diet, and specialized allergy therapy for treating tic disorders including Tourette syndrome. Avoidance of aggravating agents is key, whether in the diet or the environment. These types of practitioners can be of help to varying degrees depending on the issues involved. World Naturopathic Federation; The American Academy of Environmental Medicine American College for the Advancement in Medicine Functional Medicine We regret that ACN is not in a position to offer personal referrals for families. There are no hard and fast rules when looking for help. It is a matter of finding the right match for your situation. Word of mouth may be helpful. The search is often not easy, but it can be well worth the effort in many cases. I sincerely hope every Forum reader finds the help they are looking for. Sheila Rogers