All Activity

Had anybody’s child got vocal tics that are every second of every day? It is the same sound over and over again! Apart from when he is talking or singing, he is hardly ever just quiet!

just a warning that marijuana and the sometimes more potent medical marijuana can build up in a body and eventually cause Cannabinoid Hyperemesis. My son found out the hard way when he couldn't stop throwing up (emesis) and went to the emergency room a few times for rehydration, nausea and pain before one of the Dr.s said he had seen this often enough to call it a fast growing issue. Only quitting immediately and totally helped alleviate the symptoms.

Hey we have been asked to avoid fermented foods , spinach ( we were consuming a lot ) and avoid tomatoes !!Also we are given Quercitin ( natural antihistamine) and DAO enzymes to digest if ate high histamines ! Histamine intolerance is another symptom of mold toxicity has nothing to do with environmental allergies ! But yes when your histamine bucket is full due to food + environmental triggers in spring season you get reaction/symptoms !!

We have many food intolerances along with mycotoxins in the body. My kid didnt test positive for any environmental allergies but we were able to clearly observe her tics increasing during spring/summer. what histamine foods are you avoiding?

This is exactly what we are dealing with starting March ( spring season ). But ours is more of allergies symptoms accompanied my mild tics! We are also falling sick again and again since March ! Also last year her tics got noticeable around the same time ! According to our doc this could be mast cell activation due to histamine intolerance ! Root cause - Mold toxicity ! Do you have any allergy symptoms ? Or just tics ? We were asked to eliminate few high histamine food and introduce Quercitin and DAO enzymes !

Hello Everyone, Update (5/1/2025) Protocol still in progress and we're half way. Interesting thing we observed,Last 4 months has been mostly normal (minor tics once in few days) but not intense. But since April beginning, we observed she getting tics more often. This is exactly what happened last year when she was tic free during (Jan-May) time frame and her tics got intense during may/june/july. Not sure if this has got something to do with things that come along during spring/summer We're havent spoke to an environmental physician yet and we're planning to meet Michael Bauerschmidt, MD Any suggestions on good environmental physicians you have been to? would really appreciate it. Also hearing great thing about GAPS diet and how it reversed many chronic issues. Did anyone have experience on it?

I would like to share the story of our son who is dealing with PANS since February. We are a family living in Germany. Unfortunately I could not find any PANS/PANDAS parent support forum/Group in Germany and I have the feeling that information/research about this condition is very scarce if you just search the web in the German language. I’d like to reach out to those families are/have been on the same path as us, to ask for your experience and advice and to hear your stories on how you deal or have dealt with it. I know this a long post, but I ask you to read it please and share your experience with us in case you have(or have heard) a similar one. We are quite desperate and broken. This is how it started: Our son turned three years old this March. At the beginning of February he started showing psychiatric symptoms. He was sick at time, which we thought was a cold (our whole family had flu-like symptoms). He would not get better, his nasal mucus was quite yellow-greenish. So we took him to his doctor as we thought he might need antibiotics, which they did not deem for necessary (I have to mention that in Germany doctors are really very conservative with prescribing antibiotics). Over the next week we realized he is very uneasy, fidgety, keeps walking in the living room all the time and just cannot sit still or play with his toys, so we brought him to the doctor once again (we did this three weeks in row), again no problem was identified from their side. Then a couple of days later he got 40 Celsius fever which we treated with Ibuprufen at home which worked well, some days later he all of sudden started complaining that one of his feet hurts and was really screaming and in panic when telling me this. At the next appointment with his doctor they tested with two throat swabs for Strep and Influenza B which both were negative so again nothing was done there. The next days he started talking to himself quietly and would smile or laugh sometimes. Symptoms got more severe every day would pass, he would become absent, one could not communicate with him or ask him something and get an answer. The turning point for us was on a weekend where he got a horrible panic attack and starting screaming for no obvious reason, he would ask me and my husband to hug him but we could not calm him in anyway. This happened two or three times that day. So we of course took him to the hospital. The doctors there could not help us, as they were not specialized in Neuro-Psychiatric diseases. He started developing tics, OCD, extreme cognitive decline, lots of teeth grinding and autistic-like behavior like rocking and head banging, repeating words, etc. His other symptoms include dilated pupils (not always however quite often), bending over and looking through legs. He started putting toys or his toe in his mouth (again he does not do it always but you rather expect this behavior from a toddler). We have not really started the potty-training with him, but before this all happened and he would poo in his pampers he would come to me and insist that I change it, which he does not do anymore. He has what I think severe separation anxiety, as he comes to me every couple of minutes to take him and hug him and is emotionally very labile (starts crying for no obvious reason). He seems to have hallucinations, but we cannot really prove it as he is not able to tell us that. He is most of the time in his own imaginary world with intrusive, mostly very negative thoughts (he keeps saying someone hit him or took his toy from him or damaged his toys) and starts crying. Diagnosis and Treatment: To cut the story short, after weeks of calling and visiting several different doctors, we were admitted to a pediatric hospital after 4 weeks. They did two EEGs (one while sleeping), one MRI from the brain which all were normal. They tested the spinal fluid and the blood for some values and a couple of antibodies which were all normal. Autoimmune encephalitis was ruled out. In terms of the differential diagnosis two possible conditions remain which are PANS or childhood disintegrative disorder. Since then, he has received two therapy sessions (4 weeks apart ) for three days. In each session he received “Methylprednisolone(Cortisone)” and “Privigen(IVIG)” injections for three consecutive days. Although we have seen tiny marginal improvements (we see this usually 10 to 14 days after each therapy) his condition lapses and varies from day to day. In general we do not see much improvement in his condition and he still has severe psychiatric/cognitive deficits. The head physician (in whom I really believe) is considering Rituximab for the upcoming therapy session. I am scared and unsure about the future. What does it mean that he is considering Rituximab, are we moving in terms of diagnosis toward the childhood disintegrative disorder (my greatest nightmare) or are PANS patients also treated with it? Do you know any similar cases? If yes, what alternative medication has been used for you child which did work and which medication didn’t? Thank you for the patient reading and your feedback!

I have been treating my teen for PANDAS and related issues for over a year now. Lately, it has become clear to me that ADHD needs to be a major focus for us; I'm diving head-first into research and am wondering if anyone here can get me started, specifically talking about supplements that have helped you or someone you know. Step one will be giving her high quality green tea every morning for the L-theanine. What else?

Hi badguyus1776. Welcome to the forums, and I'm sorry you are concerned that you have signs of ADHD. I don't know if there is a tendency for people with a history of TS to develop ADHD, per se. A lack of focus and interest in certain activities, like the painting you mention, could occur for a number of reasons. As we age, nutritional needs can increase or change. You might want to consult a practitioner who could order some lab work, if that's an option. You might have an imbalance with amino acids or other nutrients that often affect attention. Would you be interested in doing that? A mild depressive state could result in the symptoms you describe. Depression might be addressed through the biomedical approach just mentioned. Does that make sense? Do you already take brain-related supplements? Something else that can change with age is food reactions. Think about whether you feel the same every day or if there are times you feel more energized and engaged. You could keep a log of the foods you eat and consider whether you feel different on various days based on what your diet is like. Cutting back on sugars is often recommended for ADHD. (I don't know what your diet is like presently.) In addition to that, food intolerance can develop that causes brain fog. As an example, some people can no longer handle alcohol the same way they used to--or they start to react to gluten or certain foods with headache or foggy head or stomach issues even though those items never bothered them before. Since you mentioned indoor painting, I'll pass on a suggestion--and that is to go with non-VOC paint once you get inspired. It is available from major paint companies and is much healthier than standard paint. Some people find tics increase significantly with exposure to the chemicals off-gassing in standard (smelly) paint. Link to Sherwin Williams eco-friendly paint with explanation I hope that helps? The good news is that ADHD-type symptoms can often be improved.

I am 63 and had moderate Tourettes as a child. The Tourettes diagnosis didn't exist back then, but I had both vocal and motor tics that persisted for years. The vocal tics stopped by the time I was 30. The motor tics (jerking my head to the right spontaniously) persisted into my mid-40s. Vocal tics haven't occurred in years, but I still catch myself doing the motor tic maybe once a month. It usually happens if I get stressed too much. Part 2 of the story that will lead to my question: I am having a hard time focusing on tasks. For instance: the interior of my house needs to be painted. The thought of committing to it for a few hours a day now horrifies me, even though I've done it before without a thought of it being unpleasant. I realize that I need to discuss this with my doctor, but I'm wondering if it is ADHD and that maybe the community has seen similar comments. Are former Touretes sufferers more prone to ADHD later in life? I am a stock trader and the loss of focus is really problematic. Sorry for the long post.

My 14yo has PANDAS with ADHD and OCD as well as depression and motor/vocal tics. After a lot of research, I put her on full spectrum CBD for a month and it made such an enormous difference. Unfortunately we ran out for about two weeks and the regression was immediate: lack of motivation, no desire to do any personal hygiene, vocal and motor tics, brainfog, lack of focus, doubting all of her choices, etc. Now that she's back on it, there's such a big difference again! She's excited to put on makeup and accessories when we leave the house, she's waking up earlier/easier, she's getting her tasks done without distractions and she's getting "stuck" scrolling on her phone so much less. I too have ADHD and I can feel a difference in myself on the CBD as well. Especially in motivation and energy. Neither of us are "cured" but I can confidently say we will never run out of gummies again. It's incredible. Of course, we do other things to help ourselves like daily outside time, exercise, and a mostly clean diet. We take Upstate Elevator Supply co. full spectrum CBD+CBG gummies in the 30mg cherry variety. They're organic! I have a referral link for $20 off but not sure if I'm allowed to post it.

My 14yo has PANDAS with ADHD and OCD as well as depression and tics. I put her on full spectrum CBD for a month and it made such an enormous difference. Unfortunately we ran out for about two weeks and the regression was immediate: lack of motivation, no desire to do any personal hygiene, vocal and motor tics, brainfog, lack of focus, etc. Now that she's back on it, there's such a big difference again! She's excited to put on makeup and accessories when we leave the house, she's waking up earlier/easier, she's getting her tasks done without distractions and she's getting "stuck" scrolling on her phone so much less. I too have ADHD and I can feel a difference in myself on the CBD as well. Especially in motivation and energy. It's incredible. Edited to say we take Upstate Elevator Supply co. full spectrum CBD gummies in the 30mg cherry variety. They're organic!

I am very interested in this as I am having some very serious issues regarding dopamine. My holistic doctor highly recommended b6 for dopamine production. Which blood test would show a deficiency?

NurseMom21 Do you have an update for your daughter?!

How common is coprolalia in PANS/PANDAS? My 11 year old daughter's tics are mostly vocal and started quickly. She went from throat clearing here and there to screaming profanities. She was diagnosed with PANDAS by a neurologist and she meets the diagnostic criteria for Tourette's, but the fact that coprolalia never wanes is interesting to me. She also has ADHD, ODD, anxiety and OCD behaviors. The ADHD and ODD presented at age 2. Some days I think she's just a severe case of Tourette's with many co-morbidities and there's little hope for healing. :(

Hi @lionemail16 Sorry to hear that your kid has to go through this. We had intense tics for my kid last year and with changes to her diet and adding supplements made a big difference for her. Its a challenging journey but you will get there, Stay strong.

I count letters in words. I also hear and then keep a running list of homophones--have been doing that for 25+ years. But my favorite compulsion is to find "perfect" words. A perfect word is one with each of the vowels, with no repeats of any of the vowels. Such as "euphoria, or housewarming---a Superfect word is one with all of the vowels, in order, including the letter Y. I only know of two of those words: abstemiously, and facetiously. Perfection! Is this an obsession? Am I neurodivergent or mentally ill?

My daughter was recently given a protocol of SAMe 200mg and B6 30mg a day. Her mood and energy and great. Her tics got significantly worse? The doctor recommended increasing b6 to increase dopamine. I thought tics were troubled by dopamine. Any advice? Experience? Thank you

Hello everyone! My daughter is almost 20 years old now. When she was 6, she was diagnosed with PANDAS and got better after taking antibiotics. When she was 11, she started experiencing similar symptoms - intrusive thoughts, OCD-like behaviors, and anxiety about food. She was afraid of eating because she thought she would become fat. She had severe anxiety, frequent crying, and obsessive fears about food. Starting in 2022, she began counting calories and exercising excessively, but I didn’t initially realize that something was wrong. Over time, she became more afraid of food, felt guilty after eating, and disliked her appearance. Right now, she is terrified of gaining weight (she has normal weight, she is 135 lbs). She feels guilty after eating, struggles to enjoy food, and finds it hard to relax around meals. If she eats and feels even slightly full, she believes she has overeaten. Sometimes, she even hits her stomach out of frustration. She often feels like she hates herself and says she wants to die, although she insists she has never seriously considered suicide. Last fall, she took Prozac, which helped her feel calmer, but it did not stop her obsession with losing weight. She still sees food only as a tool for either weight loss or weight gain. She fixates on reaching 125 lbs and was 112 lbs in 2023 after intentional weight loss, but even then, she was not happy. I need help. Could this be PANS/PANDAS again? What should I do? What tests should she take to determine if she has PANS again?

Here's another article. What to know about Red dye No. 3 and artificial food colorings | AP News I definitely notice a culture at our public school of handing out bags of candy/snacks on a daily basis with all of these food dyes in it. It is really a challenge to even suggest that it can be an immediate issue for certain kids.

Yes, I have done WGS for my PANS kid (now adult). In the study you quote, there were 10 PANS cases with whole genome done, and from discussion groups such as this, I know there are more. So you listed a variant, presumably because it is from one of the genes listed in the paper. Hard evidence (by which I mean data, not theory) for that gene being related to PANS is not explicitly spelled out in the paper. It is not based on a study of thousands of PANS patients that all have NLRC4 variants in common while the general population doesn't (which is the kind of evidence needed to make a strong connection). Rather, the paper implies or suggests that NLRC4 may be a PANS-related gene because of 1) its function, and 2) they found 4 of the 386 PANS cases with ultra-rare NLRC4 variants. Note that the 4 cases were not the same variant, they were 4 different ones. What are the chances of getting an ultra-rare variant on a random gene? As I say, the paper doesn't spell that out, so there is no statement of strength for the implied connection. One can try to do some homework to answer such a question; here is one answer: https://www.perplexity.ai/search/in-any-random-gene-in-a-specif-syMcq9GMSoOlKM3bPfnm.w (that is, approximately 1 in 500 to 1 in 1000). I find I get different answers from my AI, depending on not just how but in what context I ask the question. For example check out this different answer to the exact same question (scroll down to the 2nd question in this thread): https://www.perplexity.ai/search/in-genetics-what-does-maf-0-00-APKxEoEdQAikjSM7bimZ3g (that is, as much as 5.8% in Europeans for medically actionable genes). So we have to be careful here, the answer seems quite variable. Back to the paper's hard data: out of 386 tries, the authors found 4 people with ultra-rare (defined as <0.1%) variants on a particular gene (NLRC4). That is just over 1% of cases. Maybe that is something compared to the first link above, but less so if considering these points: 1) If NLRC4 can be considered a "medically actionable gene" (that is what my AI says, if it can be trusted), then this finding of 4 among 386 is nothing special, because it is not out of the ordinary in the general population, per the 2nd link above. 2) NLRC4 is the gene in which they found the most (4) ultra-rare variants. In 6 of the 11 genes listed, they only found 1 ultra-rare variant, so NLRC4 is not really representative, the real average is 2 for the 11 genes they found ultra-rare variants on (this point is further complicated and somewhat mitigated by the fact that they also found some individuals with ultra-rare variants on more than one gene). 3) The paper authors don't actually report how many genes they tried, only that they found 11 genes with ultra-rare variants. If they tried with an initial list of say, 20 (I made up this number), and didn't find ultra-rare variants on 9 of them, that would make their finding weaker. It is really important for researchers to report such background information, or better yet, to pre-register their study (to detail exactly what they will do before they see any of the data), to avoid the possibilities of either "p-hacking", or "HARKing" - two of the problems that contributed to the replication crises in science that is in fact still ongoing. There was a subsequent paper by some of the same authors, first published as a preprint (https://www.medrxiv.org/content/10.1101/2024.02.20.24302984v2.full), and then as a final, peer-reviewed paper (https://karger.com/dne/article/doi/10.1159/000541908/914745/Ultrarare-Variants-in-DNA-Damage-Repair-Genes-in) I like to compare the differences between the two (preprint and final) to see what the peer-reviewers insisted that the authors do for the final. This is not to say that peer reviewers are the be-all and end-all, but it is interesting to note.

Update! We stopped Nystatin a week ago and her skin issues are much more mild. Still a little itchy and a little dry. Makes me still wonder if she was reacting to the Nystatin or die off was just too strong, and now it’s mild. Nothing I see seems to support die off lasting that / dry skin etc. but maybe! Everyone’s different. Hoping this is helpful to someone someday.

This is a different study done in Japan on mouth pieces used for Tics. https://pmc.ncbi.nlm.nih.gov/articles/PMC6852427/#mds27819-bib-0004

@Chemar Thank you for responding! 🙏 I sent you a message.

Hi so sorry your daughter is going through this. It does sound a lot like intense herxheimer or die off reaction? All I can add is that we were advised not to use Nystatin or any prescription type anti-funguls or probiotics. My son was treated with a Candida cleansing diet, and a NOW product that then was called Candida Clear (now Candida Support)- and he also used Lauricidin as MonoLaurin capsules- then followed by natural probiotic treatment with plain kefir. It worked very well for him.