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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.

Hi all! I have read many forums about Candida on here. I was looking for some thoughts on my 8 year old daughter’s case in particular. She’s had mostly mild tics for almost 2 years. A few times they ramped up a bit, which scared me into visiting a functional pediatrician. She suspected and confirmed via an OAT that my daughter had raised Arabinose aka intestinal candida overgrowth. It was also noted she had a high IgE (40) indicating a non-celiac Gluten Sensativity. I am a few weeks into our regimen which consists of various probiotics (Seed, Sacch B., Terra Flora), bio-film busters (biocidin and Lauridicidin), and Nystatin 3x daily. I’ve been aware of sugar count, trying my best to be GF (the holidays made both a little tricky) and watching our seed oils. Do you think this seems like a good line up?? Anything you see issue with? The first few weeks she was veryyy itchy, but I see that decreasing a bit starting 3 days ago. The rash near her private area is still visible but a but less itchy too. She is no longer having night sweating. But the tics still wax and wane which has me discouraged. I know we’re only about a month in (not quite since I was titrating) but I’m just feeling worried. My end goal is that I can help heal her gut so she can eat gluten without care and for her to be tic free. I don’t know if she has any other sensitivities btw. I do not notice anything after she eats gluten. But perhaps it does have a neurological effect but nothing digestive. I need more time to be GF to study how she is free of it and then add it back in. I know her doc is somewhat curious to run a mycotoxin test on her but I’ve just been trying to give her a break from feeling prodded. I don’t think our house seems moldy at all but I guess you never know. Her tics don’t bother her (too much) so I don’t have an overly motivated patient. She thinks I’m just doing a lot of this for her overall health and immunity. We don’t speak of the tics often or really ever. If anyone has any thoughts or words of encouragement let me know!! I’m hoping the tics are just persisting because her body is still fighting the good fight with the candida toxins and healing still has to be done. 🙏 btw she also shows high Oxalic acid and low B6, which apparently are common with Candida overgrowth.

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

Hi, Did anybody see this paper, published in Nature, https://pubmed.ncbi.nlm.nih.gov/35773312/ ? I've been on augmentin to treat PANDAS/PANS for three years - its been the best years of my life in terms of mental health stability and no flares. Feel like a changed person. I recently did Whole Genome Sequencing (WGS), and found that I have the below gene. Gene: NLRC4 Variant: c.2-212C>T rsID: rs199476292 Ref Allele: G Alt Allele: A Freq: 0.3122%rare CADD: 2.014 This gene is hardly mentioned anywhere I can find. Has anyone else with suspected Pandas/Pans undertaken WGS ?

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

I am responding to a message asking me about my son's progress- so am bumping this old thread back up as it gives a lot of our journey's details He continues to thrive in adulthood, has his own place, a good job and good friends. Hoping anyone currently going through these challenges will find hope and encouragement here ♥ NEVER give up hope!

Hi again @tiaratoledo There are a number of older threads here on testing but perhaps you will find some helpful info on this thread?

Hello My son was around 4yo when he began exhibiting OCD and yes, repetitive actions were amongst the first of his symptoms.

@tiaratoledo. I was worried because Seth’s tics looked more like seizures, with eye rolling and head nodding. They did a second video EEG, and they were able to see the movements clearly, diagnosing it as a tic disorder, which really relieved a lot of stress for me, as I had been worried off and on. They also noticed that he’s a little bit vitamin D deficient, as it’s winter in Germany, so they increased his vitamin D dosage. Since then, the tics have improved by about 70%. Other than that, he’s just happy. I massage him at night, though I’m not sure if it helps. We also decided to try going dairy-free and gluten-free, just to see if it makes a difference. I’m not sure whether it’s worth digging deeper into functional or integrative medicine, or if it’s better to just wait and see, since I know that tics are often a symptom of something else.

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 @Swetha, Thank you for your response and for sharing your experience/perspective. We are putting so much efforts and not even seeing the slightest sign of progress is discouraging. If anything today was one of the worse days. My head is spinning. He is not sick or has been sick for a long time, so in his case I don’t see a relation. Today we had a first appointment with naturopath doctor to start the testing, so let’s see how it goes. I am finishing Sheila’s book and the next will be the one you recommended. Thank you, Tiara

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

Hello, A little update/request for sharing experiences. Today it’s been 20 days since the flare up began and around 10 days since we have diligently: * followed a new diet free from gluten/sugar/diary/eggs/corn/MSG and food dye. Very clean diet, everything organic, home made, lots of fruits and veggies. We are being very strict following the diet. * changed house chemicals from toothpaste to all cleaning products, including his body soap * Changed all bedding items from cotton organic GOTS certified: pillow, sheets, blanked, mattress cover * absolutely no screen time and lots of time outside * epsom baths every night + Omega3 + B12 * NAET 2x week * He is in a great mood, playing and not stressed at all I feel we are doing everything correctly, but unfortunately we had 3 better days (that’s when I wrote) and then it got worse again. Maybe not to the severity of the first 5 peak days after he went swimming in the chlorine pool, but we are definitely not seeing ANY improvements with all those changes. The intensity can vary without any reason throughout the day. Afternoons overall are a little better than Mornings and Evenings. I’m keeping a journal and trying to make connections but I don’t see anything. No logic for the daily fluctuations. It is hard to be hopeful and positive when there is no sign of improvements. When you have gone through the same changes, how long it took for you to notice improvements? Sometimes I read in some posts of the forum that I should have noticed changes “immediately” or “within days” after changing diets. I know the forum is also about proving support and hope, but I want to be realistic. Am I expecting results to soon? Thank you!

Hello everyone, My son is 27 months old and was diagnosed with autism last month. He was simultaneously diagnosed with PANS. He has been using Azitro for 20 days now, but there is no change in his condition. What I want to ask is; Can obsessive compulsive disorder be seen as constantly opening and closing doors at the age of 2? Thank you to everyone who will reply in advance. Constantly opening and shutting doors..

Atex, Thank you for this post. It fuels me with hope. Tiara