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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.

Hi all! I need your help! We’re at a cross roads in our treatment. My daughter has been on a regimen of Biocidin, Lauricidin, probiotics and Nystatin for about 8 weeks. Her tics seem less 🤞🏼 however she’s been pretty itchy for over a month. It seems to come and go which is the odd part. Some days she barely itchy (but still a little) and other days she’s very itchy and I see a few *tiny* red patches on her arms. I have her on an antihistamine, which I commonly had her on prior to all this to help with some mild itching and occasional stuffy nose. Never was quite she what caused her “allergies” - perhaps the candida. Also, last week her face was SO dry! Like shedding almost. And redness on the skin around her eyes. I was about to pull the plug on Nystatin and then she woke up and the skin on her face looked perfect and felt smooth. Like a lizard that shed its skin. Now 3 days later her back is itchy again! And I’m back to wondering if I should pull the plug on Nystatin. Also, to note is she has had a rash near her private area that started PRIOR to treatment but it isn’t going away. Fungal cream has helped but it still flares and isn’t gone yet. This makes me wonder if we haven’t gotten the candida fully under control yet. What do you all think? Did any of you deal with skin issues like this?! I keep wondering if it’s die off but it just won’t quit but I’m having a hard time finding anecdotes that resonate with us. We could stop Nystatin but continue the other treatment items or switch to flucanazole, or push through a bit longer! Praying someone can relate! Thank you for your thoughts!

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!

Hi @Mamaknowsbest After starting dairy free/gluten free/sugar free/grain free diet, we could see a big difference. Her tics frequency reduced. We didnt find mold in our home, however as the test results show mycotoxins are from grains, we started a grain free diet we have been recommended the below in our protocol for the first 6 months to detox. The next step in the protocol will be to fix the leaky gut once the detox has been completed https://beyondbalanceinc.com/products/detox-support/cognease-detox/ https://beyondbalanceinc.com/products/core-immune-support/mycoregen/ https://beyondbalanceinc.com/products/inflammation-support/cyflacalm-ii/ https://beyondbalanceinc.com/products/core-immune-support/pro-myco/ I suggest you reach out to environmental physician/ holistic medicine to get to the root cause if working with your functional ped is not getting you any results From my experience diet plays a major role in tics and if its something related to gut issues, the gut needs to be fixed first. sauna/epsom bath will definitely help but they wont fix the underlying issue

I am glad this forum is here! I mainly count letters on commercials. Mainly medicine names, but can be other words, too. I also have a volume number that aI can see on my tv, and try to end it in an eight, which I have heard can be a lucky number. 4, is in some asian countries an unlucky number, so I will not let my volume number end in 4. Quirky, I know.

I cannot believe there are so many people who count letters. With me, it is mostly commercials, the names of medicines. It can be anything on the ad. I also have to have the volume number on the tv to have an 8 at the end. I heard that in some asian countries, 8 is a good luck number, 4, is bad. So if something adds up to 4, or has a 4 at the end, I feel more comfortable if I change it to something else. It can be anything as long as it is not 4. Mostly though, I count letters in words. Sometimes I will add the whole line or sentence up. If it comes to a two digit number, then I add those two numbers up. Nothing gained by that! I can stop myself from counting. I am glad this board is here.

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.

@Alex also if you don’t mind, how was the dairy allergy determined? What were the signs? Did you have to avoid all forms? Cheese? We buy A2 milk, eat Greek yogurt and cheese. Was lactose free cheese tolerated?

@fgter please keep us posted on your child! I hope you are seeing rays of hope with all your efforts! I would love to know more about your mold journey. Has any been found in your home? What supplements were recommended for detox? I asked my functional ped about easy detox ideas (but haven’t confirmed it’s needed yet with a mycotoxin)… she mentioned sauna, castor packs, epsom baths. Any other suggestions?

@Atex thank you for your reply! My “gut” is we have to be making some progress but I still haven’t seen many results from it which makes me feel discouraged. We are new in the journey though so we will just carry on and keep praying. 🙏

It took us a good 6-12 months to heal our daughters gut from a long term dietary allergy. The tic improvement lagged the gut improvement by a few months. While hers was dairy and maybe gluten allergy, I would not be surprised it if took yours just as long. Our naturopath also had her taking NAC as a way to help healing; whether or not its appropriate for Candida would need to be discussed.