Sheila

Hi Tiara, Let's plan to talk on the phone. I'll drop a message to you. .

Hi Tiara, This must be such a distressing experience. I'm so sorry you are dealing with this in your son! Has a physician seen him in this condition? If not, you could take him to an ER and presumably get a consultation with a neurologist and a referral to a movement disorder specialist. This is not to say that integrative approaches cannot help him--it's very likely they can--but since it sounds like he is in crisis, he should have a formal evaluation (you may already be doing that!?.) Do you have health insurance to cover this type of care? I have heard of some doctors giving an IV of magnesium in the ER, as is sometimes used to treat a seizure, and it temporarily helps calm severe tics like this, but I am not a doctor and I don't know what is feasible where you are. As far as encouragement, please know that parents of children with severe tics have often found major help with integrative approaches. But, it can require advice from a professional to determine what imbalances the child is dealing with. It is not always possible for a parent to figure out environmental and diet issues, supplement needs, etc. on their own. So I would suggest you will need that type of assistance. Do you have practitioners helping you? We can set up a time to talk if you like, Tiara, and see what your options are. (Do you live in Toledo, Ohio?) Please let us know more about these issues. Meanwhile, don't despair. We will watch for your response. Sheila .

Hi Lulul4834, we would be interested to hear what the results of the swab are. I haven't heard of that connection with a flare but it certainly sounds plausible. Please let us know what you learn, and what treatment is recommended. I'm glad you wrote, and let's see if others have a response.

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

Thank you for answering my questions and providing background with such awesome detail. Please understand I'm not an expert nor a practitioner, but I thought I might be able to offer some suggestions at a global level. You are so bright and well-read regarding integrative approaches to Bartonella, Lyme, mold, and tics. You've tried an impressive number of logical treatments, though, unfortunately, without the needed improvement you are looking for yet. Dr. Nathan re: treating mold first Regarding the mold, which you say has been remediated but could, of course, still be an issue or you may have long-lasting physical effects from an earlier exposure--you may find these two links of interest. I see that you are following the Buhner protocol for mold. This is from Dr. Neil Nathan (I'm just it sending in case of interest, not suggesting you stop what you are doing or that he has special expertise. Just sending in case there are any insights for you. https://www.lookingatlyme.ca/2022/11/49-mold-lyme-and-bartonella-with-dr-neil-nathan/ https://www.lookingatlyme.ca/2022/11/50-bartonella-mold-and-more-with-dr-neil-nathan-part-2/ An article to consider Also, I thought of you when I revisited this article on our site--in case something pops out as something to consider re: mythelation: https://latitudes.org/unraveling-the-causes-of-my-sons-severe-tic-disorder/ Magnesium and other IVs I don't know anything about your financial situation or health insurance. But since you have described your tics as almost seizure- like, might you be able to go to an integrative doctor or emergency room that would consider an IV of magnesium? It is sometimes used to calm seizures. Or maybe someone would come to you--again, I don't know how far out you are. I noticed that a home-visit nursing site in Australia mentioned magnesium IVs for Lyme. Here's a text conversation below that I had with them just now. I explained you had a severe tic disorder and probably Lyme/Bartonella and asked if they did magnesium IVs. Note that they offer what I assume is a virtual consultation to determine what you might need. It could be costly, but if it is feasible to try one, you might see if an initial magnesium infusion brought any relief at all. Magnesium might just be a start. While international, I don't know what might be feasible for you as far as location, if interested. Hi there! 🌟 At Drip Hydration, we do offer a variety of IV treatments that include magnesium, which can be beneficial for various conditions. While magnesium can be helpful for muscle relaxation and nerve function, it's important to consult with a healthcare provider to determine the best course of action for a severe tic disorder and potential Lyme/Bartonella infection. If you're interested in exploring our IV therapy options, you can check out our website and book an appointment to discuss with one of our medical professionals. They can provide personalized recommendations based on his specific needs. 💧✨ This is the website, and perhaps there are others in Australia https://driphydration.com/ Allergy treatment I realize you are not in a position to drive. Some forms of allergy therapy might be useful; it's something to consider. We would have to look for some place accessible that offered the right type of assessment and treatment. I hope and pray something here is of some help while you continue what you are doing! I

Hi Jimmy89, it's heartbreaking to read what you have been going through. I'm so very sorry you are dealing with such a severe situation. Your symptoms must be very exhausting and painful at different levels. That short period in April must have been heavenly! There is always hope for healing, hope for returning to that state. You seem very well-read and have tackled so many interventions. Please don't give up. These are some basic questions : Where do you live--the town/city? What kind of home are you in (apartment, single-family home, etc) Do you live alone or with someone else? Were you given medications for your tics when they started, and if so, what did you take? Thanks for any feedback. Sending lots of good wishes your way.

Hi 4AHAA--Welcome to the Forums! I love the suggestions Chemar shared about keeping a journal -- and also what her family discovered about pool chemicals. I'm sorry you are dealing with tics in your daughter. As Chemar noted, you've taken a number of positive steps already. I see you still have concerns, though. Have you noticed any improvement with the changes you have made so far? One area that is frequently overlooked is the role of chemicals that can be aggravating or toxic to the nervous system and can result in inflammation and tics. This could be a missing piece -- from air fresheners to cleaning products, along with the potential of other food intolerances and allergies. Please let us know where you live, OK? Also, I'd be happy to talk with you to see if, together, we can figure out what type of practitioner might be most helpful for your daughter. 💗🌺

I would agree with you, Atex!

Hi PANDAnaut600 (great name!) Welcome to the forums. I'm sorry to read that you are dealing with so many symptoms. Others may jump in on this. Meanwhile, it would not be surprising for there to be a connection between PANDAS/PANS and MCS symptoms. But both fields are complex, with layers of controversy, and despite major progress with PANDAS/PANS, much uncertainty remains. MCS is "real," yet to my knowledge, an immune link has not been clearly identified through research. What treatment was used for your PANDAS when you were a child? Do you have a physician now who can treat your chemical sensitivities and related symptoms?

Is this happening basically all the time, Swetha? (Yes, we have heard of all these types of tics.) I'm sure it must be very distressing for you. I'm so sorry to read about it. Are you in India? I'm sending an email note to you. Also, to jump back -- no, meat is not required to heal a tic disorder. As a general concept, a balanced vegetarian diet is fine.

Swetha, I'm sorry to be so late in replying. I went out of town for several days and am still catching up! I agree with Chemar, that you have done an amazing number of interventions. You are observant and have what it takes to make real progress. In fact, it sounds like you already have. It's great you are cutting out sugars and reducing dairy. It can be hard to know what foods might be involved without trial and error--unless something becomes obvious. Maybe the naturopath could help you with that, if you see one. You mentioned you were starting the waring of eyeglasses back up, thinking it might have had something to do with the symptoms. Have you seen a change? There could be visual component, especially since he had tics when reading and watching TV (this is not uncommon.) You mentioned dust allergy -- have you had a chance to make the bedroom dust-free? (article) A good air purifier in the bedroom can often make a difference. Could it be possible he also has other sensitivities that you are not aware of.--like to mold? What is his current "baseline" of tics -- how would you describe the current level to the pre-trip level of tics, before the explosion? A lot of us can totally relate to him letting the tics out after school! It can be distressing to watch, as a parent. Hopefully as tics keep settling down, he won't have to focus on holding them in. You asked about stool testing, that can be helpful for identifying candida as well as bacteria, viruses, or parasites. Does he have digestive problems? Please think about chemical exposures in the home or at school, Swetha. Do you have any scented products at home? Air fresheners or incense? And what about scented laundry and cleaning products? You may have seen enough on the site to have already made changes there. This is an area that is often overlooked as it is natural to focus on food and supplements. Similarly, there could be something at school that he is reacting to. We hope you will keep filling us in on progress. I'm not planning to travel again for a while and will keep an eye on this!

Hi Swetha, I'm sorry your son is going through a major increase in tics, and I know that's so upsetting for you to deal with. I'm glad his EEG was normal. Part of the approach that this website focuses on is not only the helpful nutrients--and though they can be different for everyone, you have zeroed in on some that are commonly reported to help--but also there's a focus on what to avoid--either in the diet or the environment. Also, a comprehensive approach would be to look at everything that might have impacted your son during the trip (in addition to his excitement). Where did they go on the trip, what was he exposed to in the way of chemicals or allergens? By the way, do you know if he is allergic, and if so, to what? Does your family have a history of allergy? You can also think if there is anything that might have changed in addition to his taking the trip. Has anything at all changed at home or at school? Anything from a new car to a pet to a chance in classroom. . . keep an open mind. This article touches on most of these concepts: https://latitudes.org/conditions/what-is-tourette-syndrome/ If you like, Swetha, please drop a note back after reading the article, okay? Wishing you and your son the best, Sheila

Hi Notokay29 -- I would second what Chemar said! While it is possible that your son is just excited or anxious, there are probably different factors at play. Do his tics start up at other times when he's excited? Like if someone is coming to his house to play, or he's getting dressed up for halloween, or going to a bday party at someone's house? (Not that this happens as much as it used to, post-Covid!) Try to think of other events that excite him and compare it to what you are describing on the soccer field or fairgrounds. As Chemar pointed out, it could be that he is reacting to treatments used on the field. Sometimes fields are treated with pesticides or herbicides, or the area has been sprayed for mosquitos. The same could be said for the fairgrounds. (Other parents have observed this.) It is also possible that he has inhalant allergies and being outdoors, especially if the grass was recently mowed, could play a role with soccer. Please read the article Bye Bye Tics on our website you will see how the mother described tics related to baseball. She has a lot of other good info. Click here Could you get him tested for standard allergies? By that I mean things like grasses, dust and molds? Has that ever been done? Chemar is right about food at the fairgrounds. (Or Gatorade at a soccer practice/game!) It sounds like you have done a great job of being observant and trying to figure out what is going on. Please keep that up and add these things to your list of what to watch for!

Hi Notokay29, Welcome to the Forums -- although I'm sorry that your son's recent tics have brought you here. It sounds like you have been doing a lot of helpful reading. That's great. You are correct that allergy/asthma medications can worsen or trigger some people's tics, but there are not studies on this as far as what percentage might experience tics and for which meds. You saw an improvement after stopping them, and that's encouraging. But it's all so recent that it's hard to know exactly what has been involved. At the same time, he may need some kind of asthma treatment. As you know, stress and anxiety can aggravate many people's tics. He could be in an overly sensitive state right now. What exactly did he eat or drink at the fair, even if foods don't normally seem to bother him? And how is he doing tonight?

That all sounds so good, Jules. I hope you will please let us know how everything works out. We sure hope you see improvement! Sheila

JulesLou, I really sympathize with your situation -- it is so difficult when you can't find the help or resources you need. GABA I don't usually make nutritional recommendations. But given your circumstances, when you are not going to get genetic testing (most people don't) related to GABA, I would suggest you follow Cheri's suggestion and start cautiously with a small dose of GABA and slowly increase. Your son is old enough to give good input on how it is affecting him. It has clearly been linked to reducing tics in some people and tends to be fast acting. It is often used along with theanine and taurine. I came across this supplement based on another Forum user's experience for PANDAS. She suggested RelaxMax (Xymogen) which can be purchased on the Xymogen website. It is based out of Orlando Florida and unfortunately it seems a practitioner is needed. This user wrote that it was a very helpful supplement in a powder form (GABA, Inositol, L Theanine, Taurine, Magnesium. Those nutrients would all make sense. Her daughter was prescribed half a capful per day at 10 years old. I am going to include the ingredients that are included in a full capsule so that you could look for similar nutrients in the UK--either in a liquid form or powder. It doesn't have to be exact but this would be a starting place. You could find something with GABA combined with some of the other nutrients. INGREDIENTS IN RELAX MAX Magnesium (as di-magnesium malate)S1 75 mg myo-Inositol 2 g ** Taurine 500 mg ** GABA (gamma-aminobutyric acid) 100 mg ** L-TheanineS2 50 mg FOODS Also -- and I apologize for not reading through all your posts to see what you have done with foods as far as possible reactions -- please let us know if you have had a chance to remove certain foods from your son's diet. (What are his favorite foods? ) Please let me know. HOMEOPATHY You might also want to consult an excellent homeopath. I know they are numerous in the UK and an individualized remedy might be helpful. ORIGINAL POST re: GABA https://latitudes.org/forums/topic/25916-supplements-that-made-a-huge-difference/#comment-191005

Hi JulesLou, Quite a few people on the forum have discussed GABA. I did a search, please see here https://latitudes.org/forums/search/?q=gaba&quick=1 Let me know if this is a help for you. I'm so sorry to read about your son's ongoing lip smacking. I'm glad you have connected with a practitioner. To date, has anything seemed to help your boy? I don't recall if we ever discussed avoiding all allergens and scented products, etc. Please remind me what approaches you have tried in addition to supplement, if you like and if you have time.

Hi Atex, how have things been going? Please do let me know if you have an idea for a chart that you think would be helpful. We'd do our best to develop it.

Thanks for that feedback, Atex. It's really helpful. I wonder how the Gliadin IgA is more specific than the gliadin on the IgG Food MAP? Would love to know more about it.

Hi Atex, We have some additional resources that are associated with our book Stop Your Tics by Learning What Triggers Them. See here Depending on what you are looking for, I think you could find some helpful approaches. Please take a look and see what you think. I'd love to know what you think. If you have something else in mind, maybe we could develop it for you and it would no doubt be useful to others. I'll look forward to hearing back if you get a chance. Thank you! Sheila

Hi Irene123, I'm so sorry you and your daughter have been dealing with this for five+ years. I agree it would make sense to consult an experienced naturopath. I'll share just a couple of thoughts. I saw your post on PANS (where you said you posted in error and switched to this forum). You mentioned "We don't really use any scented things except for her deodorant that has some lavender smell and Dove shampoo/bodywash. . . . When we notice something triggers tics, we try to avoid like hairspray and pool chlorine." It's really good that you have been able to observe that some chemicals are triggering tics and you avoid them. Usually when someone is chemically sensitive, the more you can avoid potentially troublesome items, the better. Also, when something is used frequently, like a body wash or shampoo, it can be hard to know if it is having a negative effect. That's in contrast to getting in a swimming pool and seeing that the pool chemical increased ticcing. I would suggest you try to go unscented with everything in the home, from laundry detergent to dishwasher soap, to personal products. And also use natural cleaning products, like those from 7th Generation. And avoid plug-ins, fabric softener liquid or sheets, etc. Also, when it comes to diet, it is possible that she is eating something every day that she is sensitive to. You mentioned eggs and whole wheat, which are common culprits for people with food sensitivities. A naturopath should be able to help identify them or advise you. One test that is often recommended is from Great Plains Laboratory, which has just recently changed it's name to Mosaic Diagnostics. https://mosaicdx.com/resource/great-plains-lab-is-now-mosaic-diagnostics/ This test might be very helpful, but needs to be ordered through a practitioner, like a naturopath or a doctor. https://mosaicdx.com/test/ige-food-allergy-test/ (If you already looked into food reactions like that, sorry, I missed it.!) I did see that your daughter has a limited diet because she likes it that way. I know change is difficult, but if she is eating something that is causing a reaction, it's important to address that. I hope you will let us know how things are going, especially with the start of the school year. Wishing you the best!!

Hi -- I hope someone can jump in with a recommendation. In the meantime, you might want to explore this site: https://www.aitinstitute.org/ait_practitioners.htm They provide in-home services worldwide. Here's a more specific link https://www.aitinstitute.org/director.htm I don't know if this is what you are looking for, but perhaps it would be a good place to start in your search?

Thank you for sharing this, Chemar. What a great reminder for readers to revisit the role of magnesium, which we talk a lot about on this forum. For some it could mean going back and giving it another try. Or, it could be giving magnesium for the first time. It's great that in the case you mention, there was an immediate calming effect on tics so it was clear it was working. If giving it a try, give it each day, as it does not stay in the system long. And, start slow in case it could cause more of a laxative effect than you want.

Hi JulesLou, I am not personally familiar with Dr. Jules. She is a functional medicine doctor, so she will rely on lab tests to a great degree, as you know. Her website says she specializes in treating tics and PANDAS. This is her website. https://www.regenerating.health/ She offers a free consultation, so you might want to consider that. Mentioned on her home page and also see this link and scroll down to the bottom of the page. https://www.regenerating.health/RH-fast-class?fbclid=IwAR1SPiL5Etq-HNM71RALKB4ZiAuilF5_cSVbxyWnShoX-FGEPC67aTcs_0Q https://www.regenerating.health/book-an-appointment-2 If you want to find a functional medicine practitioner in your area you could search here: https://www.ifm.org/find-a-practitioner/ You could explore those practitioners to see if they offer experience in what you are looking for. Good luck. Please let us know how you make out! Sheila

This approached reportedly helped a small number of people (it functioned as a form of acupressure). Since it was free, we left it up. However, the product has not been available for some time, so we will lock this thread.