Chemar

Atex, sadly conventional doctors just don't run the kinds of tests that would give so much more insight! We were so thankful to find an Integrative physician who had all the qualifications as an MD, but with the extra benefit of holistic certification too. Heavy metal testing was one of the first done-whereas the diagnosing neurologist we had initially seen only unleashed a nightmare of haldol on my son!

Hi again @Swetha I just wanted to also comment on what you said re excitement being a tic trigger This is also something many people with TS seem to experience - whether it is great excitement or big stress - that seems to often cause tics to wax. Someone once suggested this could be linked to the adrenaline reaction in both, and how all that can impact dopamine levels (elevated dopamine may be a tic trigger?) Try keeping a journal of when you notice tics up or down and what you remember could be associated (food, environment, emotions etc) It is really amazing how one can begin to see patterns and then be able to implement whatever needed to help.

Hi Swetha I just wanted to commend you for all you are doing to help your son. I know it seems daunting, but day at a time, step by step to improvement! You mentioned and I just wanted to reassure you that this is one of the most common things for people with TS. Tic suppression at school, work etc and then a massive tic release once in the safety of car, home etc

Hi @Notokay29 I so agree with Atex on noxious chemicals that can be tic triggers, plus that sometimes it takes a trigger combo, or perhaps just a subtle underlying change in a person's immune system, to see waxing tics. Once we knew my son had Multiple Chemical Sensitivity, we had more clarity on a lot of his reactivity to what he came in contact with, inhaled or ingested. Still sounds to me like your son may be reactive to possible chemical treatment of the field, or even the bright lighting there (if night games?) My son ticced more under fluorescent lighting.

Hi @Christina2023 Others may have different experience but for my son only the L-Carnitine worked to help his loud vocal tic. This was recommended by his Integrative physician. He recommended short term use, 500mg L-carnitine daily. However my son had a very negative reaction to acetyl-L- Carnitine when we tried it some years later, and so we went back to the L and again it worked quickly and well. Also my son never had any problem with an increase in OCD symptoms (what you refer to as stuckness) using L-Carnitine. If anything, his OCD diminished as the stress of the vocal yelling tic was removed! Some people with Tourette Syndrome, including my son, have a form of what is called Tourettic OCD, where obsessive-compulsive symptoms tend to morph with tics and so a tic can become obsessive or compulsive and also an OCD issue can become a tic. We always found that as there was relief for one, so the other waned as well.

Hi @Notokay29 Yes, excitement, like stress, seems to sometimes trigger tics. I would also consider if he may be reacting to something on the field - some kids are very sensitive to the chemical fertilizers or pesticides that may be applied to sports fields. Similarly a trip to the fair may involve, in addition to the excitement, exposure to foods etc that may be triggering eg my son loved cotton candy but the artificial dyes are big tic triggers to him So in addition to the potential for the excitement trigger, which one can't really control much....I would also look at any other factors that may be adding triggers.

@Notokay29Just adding this article here for you that explains a bit more about the different forms of chelated Magnesium https://www.healthline.com/nutrition/magnesium-types

I cannot suggest brands per se. We have never used "gummies" as supplements because they have so many added ingredients. A few supplement companies make Magnesium taurate

@Notokay29 None of us can give specific advice on what you should do, and especially not re the specific supplements & doses. All we can suggest are the things that have helped our children As Sheila mentioned, allergies can be a major tic trigger and the best way to start treating that is with a good allergist who can do testing. We used someone here who has a more holistic view on allergies as well, rather than just prescribing meds to treat symptoms

My son's tics manifest with eye blinking and then continuous throat clearing sounds. So @Notokay29 it seems you are saying your child doesn't have an actual asthma diagnosis, and the doctor was just giving those meds to see if they worked? I know there have been some posts here in the past of those kinds of meds triggering tics for some people. Many people with tics do have vocals that sound like throat clearing, coughing, sniffing etc

Hi There seems a lot of extra "stuff" added in those mag gummies you mention? Our Integrative physician suggested 300mg daily supplemental magnesium for my son, but that may vary for others depending on unique needs We used different magnesiums over the years, with mag oxide avoidance as it is very poorly absorbed. As taurine is calming for tics in some people, a chelated magnesium taurate was preferred.

Hi Notokay I just wanted to mention that both good and bad "excitement" seemed to be tic triggers for my son when he was in what we called "sensitive mode" - when his responses to triggers seemed heightened. It is possible that the medications may have been a trigger, and that your child is still somewhat sensitive as a result? Is the pediatrician recommending anything else for the asthmatic issues? Did you notice any tics prior to the medications? There are a number of natural ways to try to calm tics, but it really is dependent on what is causing them, along with other factors.

@JulesLou if I recall there were assorted tics that some found helped with the specialized TMJ aligning mouthpieces but it was a while back. My son had developed a bruxism tic when younger, which thankfully waned after specific acupuncture & related therapy, and so I had noticed those posts with interest, but TMJ misalignment was not an issue for him. So often for my son, we noticed the tics and the triggers being relational (eg flashing lights=eye blinking, dietary=vocal tics, sensory=motor) Those are just primary examples I had listed - but sometimes we still had general tic waxing and no clear trigger that we could discern - even though I have no doubt there were underlying triggers! But even then we did find calming and waning when we just followed protocols we knew were beneficial. When his tics were at their worst, he would always say he needed his trusted acupuncture therapist, who also had qualifications in other holistic treatments. Even though that was no magic cure, the benefits were remarkable. But this practitioner had experience with both Tourettes & Crohn's patients, and qualifications we trusted. I will mention that with any supplement, I always try to go with something that isn't a combo when initially trying - eg if you were to try that GABA with skullcap and passiflora and you got a negative effect - you would not know which one of those potent ingredients had the effect? We got a lot of unanswered mysteries with my son solved with a good allergist too- he has Multiple Chemical Sensitivity and so his reactivity to most anything chemically artificially produced is very broad from what goes into him and what he comes in contact with via all his senses. It explained a lot of the triggers that appeared hidden before. Like Sheila, I apologize for not remembering all you have already tried, but I do encourage you not to lose hope, and also to try (hard I know!) to avoid that stress. Even when the tic is persistent, I had to learn that I only intensified it when my son was aware how was stressing me more than it was him, if that makes sense.

Hi @JulesLou GABA proved too strong a supp for my son after we had tried it a few times short term for anxiety, so agreed you should be cautious. Our physician had us start very low, and also said it is a supp one should always titrate up and down. I know some people have benefited from it though, so, as with most things, it again depends on the individual's unique system and the underlying issues causing the tics. Some people reported mouth tics were helped by addressing transmandibular joint issues, and if you do a search, you will find those posts on this forum. I will say that to this day, the number one tic trigger for my son is stress, which as we know can come in many forms. It seems those are also the times when his sensitivity to triggers is also heightened. Hope you find answers

@Atex I just wanted to mention my son always had waxing tics whenever anything impacted his immune system, including vaccines, or just being ill. He did not have criteria for PANDAS, but did have some PANS indicators. @Irene123 My son loved Ezekiel bread but due to his extra complications with Crohn's it just wasn't good for him for some reason, so he avoids it. He is not gluten intolerant. Interestingly the "bread" he finds most tolerable is simple organic plain bagels. Also craniosacral therapy has been discussed a bit here in the past - try using the search and threads should come up.

Hi @Irene123 I can't post more now but just wanted to say the gut connection was very real for my son. He did do a detox protocol later- but our Integrative doctor was very careful in the step at a time with all treatments, supplements etc

Hi Irene123 I see you have posted to the PANS forum rather than the TS/tics. Do you suspect PANDAS/PANS?

I just saw this article which might be of interest to others here. Five latest advancements in Tourette’s Syndrome research

HI Sorry no replies yet. Have you tried calling Dr Latimer's office to see if they have any recommended hotels near them or your preferred location? Hope your visit goes well

Hello There are dye-free options for some OTC medications eg CVS pharmacy in US sells a 200mg dye-free Ibuprofen, and I know some compounding pharmacies can make up dye free medications but it can cost more. As Europe has stricter rules on artificial dyes in foods, there may also be better OTC options there as well? There are also options for natural alternatives eg White Willow Bark capsules instead of aspirin and tea/supplements of Stinging nettle, Quercetin, Bromelain & Butterbur have natural antihistamine properties. If you are looking for dye free foods, snacks etc - thankfully many stores are now offering those as well, including a large variety online

Yes, as with most tics, they waned, some faster than others. As I mentioned, it all depended on what tic was triggered, and by what! If something triggered a more complex tic, it would take longer and require more careful counter measures. Other tics waned faster. Another reason I so recommend keeping that journal, as it does make sleuthing these things a lot easier. For example, my son always had really intense reactions to artificial food dyes like Red40, Blue Lake etc- if he even sneaked a snack that had those in, it took quite a while to get that out of his system with varied extra treatments. I began to be able to almost pinpoint what had triggered him by his reaction if that makes sense. Once he started looking at my notes and understanding what things were clear triggers, it was also easier to have him taking care with his own health. We learned much later that he actually has something called Multiple Chemical Sensitivity, which explained a lot of his reactivity to things with chemical additives, whether foods, medications/supplements, toiletries, household products etc - once he went ultra pure and natural there was a big improvement not only in his tics, but also in his overall health. Of course there are always those tics that wax and wane for what seem to be mysterious reasons~but overall we found avoiding things that were known triggers reduced even the frequency and duration of waxing times overall.

This is a lesson we also learned the hard way! My son's reactions and length of waxing varied depending on what he was exposed to. Thankfully he was able to recognize how dramatically things could deteriorate by eating stuff that he knew triggered tics before. We did find detoxing with Epsom Baths very helpful, as well as some other things that benefited (eg acupuncture, amongst others) I hope things settle soon for your child @MLee

@MLee @JulesLou I think you have both added B6 (P-5-P)? But not sure if you tried NAC yet? (N-Acetyl L-Cysteine) My son did not respond well to it-but I know many others have had good results. The recent ACN/Latitudes newsletter also had this testimonial about it with B6 https://latitudes.org/these-nutrients-helped-our-son-with-his-tics/

Thanks Sheila - it really has been so notable that it seemed worth mentioning again. Also, there are other chelated forms of magnesium that don't have the same laxative effect as mag citrate. The only one to avoid is mag oxide, as it is very poorly absorbed.

If anyone has read my long thread on what helped my son all those years ago, you know Magnesium was key in calming his then very severe tics. (thread is linked on my profile page) Fast forward 23 years and a senior relative who also has TS tried the Natural Calm powder (ionic chelated magnesium citrate) more for digestive/laxative purpose- and had an immediate calming of some tics that had resurfaced! It just reminded me again of how dramatic an effect there was on reducing my son's TS tics after adding a good magnesium supplement. I understand not everyone responds the same way, but sure is worth a try if you are looking for something that may just help