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Sheila last won the day on October 7 2023

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  1. 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?
  2. 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.
  3. 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!
  4. 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
  5. 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!
  6. 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?
  7. 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
  8. 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
  9. 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.
  10. 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.
  11. 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.
  12. 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
  13. 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!!
  14. 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?
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