Chemar

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

I had not seen this Yale School Of Medicine article before today 3D Organoid Models Show Brain Mechanisms Of Tourette Syndrome

I have not heard of that doctor @JulesLou

@JulesLou I do feel for you struggling to find acceptable medical help Do also take a look at some of the resources on the main ACN/Latitudes homepage section as there is so much helpful info there free and also the Resource books by Sheila as they may also be of help to you

@JulesLou we noticed duration of waxing tic flare ups lasted variable times depending on what had triggered them. For example, you mentioned the trigger from the swimming pool, which my son had big time due to chlorine sensitivity. We found that waned fairly quickly once he showered off. The best solution for him was to avoid chlorinated pools and we also got filters for the home water system. But example eating something with Red40 or one of the other awful artificial food dye toxins could set him back for much longer. So it all depends on the level of sensitivity to the trigger and the individual's underlying system. The better my son's supplement & diet & environment - the more resilience he seemed to have.

@JulesLou yes, tics can interrupt sleep patterns, which is hard. In addition to the L-Carnitine for vocals, we found a few drops of pure lavender 100% essential oil (NOW is a decent and not too pricey example) in the Epsom Bath relaxing before bed. My son also benefited from a cup of chamomile tea with a teaspoon of raw organic honey as a relaxing natural calming sleep aid. Natural Calm ionic Magnesium powder is another beneficial natural sleep aid - especially for the tic reduction the magnesium brings- but the mag citrate does loosen tummy some so something to be aware of. Diffusing pure jasmine essential oil also calms anxiety and helps sleep - it is strong so a few drops goes a long way! Those are a few of the things we found helpful for my son, especially when the vocal tic was a major sleep disrupter I have also heard of some success with weighted blankets aiding sleep Hope you find something that helps or that the vocals subside ps yes, chocolate that is not at least 72% dark has always triggered my son's tics. Also limiting dairy may help (my son switched to all goat milk, cheese etc and found benefits

Hi and welcome to the forum. I am not a PANDAS parent, but from what I do know of PANDAS it certainly sounds to me like there is a strong possibility that may be a factor for your child? Hopefully one of the members with more knowledge on this will respond soon.

I came across this scholarly article via PubMed while researching something, and was pleased to see it. There are many studies and articles on this topic, but often conventional research & medicine see it more as a "fringe" idea, and also often overlook the volume of anecdotal evidence there is now so freely available that supports this premise. My own family is a proof positive "anecdotal" story of the vital role of correct dietary nutrition (with nutritional supplementation where needed) in helping to treat neurology without, or with less, pharma drugs and their potential negative side effects. Because there is Crohn's Disease as well as TS spectrum for my son, we are also able to see that Brain-Gut connection so clearly too. I continue to be amazed at how simple changes in diet and supplements can often have such profound impact on all those disorders, and how connected they are. My advice from our experience has always been - Do your own research and keep that journal on what aids waning, or triggers waxing of tics, or other symptoms. You will be amazed at how what goes into our mouths can either really benefit, or really mess with our Neurology, as well as our GIT. And for those already dealing with a neurological issue - the impact seems magnified. Here is the 2021 article I read today that gives a summary & some references. Dietary nutrition for neurological disease therapy 🙂

I know there have been a number of reports here over the years of salicylate sensitivity and tomatoes are very high in salicylates, so perhaps that may be the trigger for tomatoes @Conanjaguar unless plants high in lectins specifically seem to trigger tics for you? Interesting discussion

Oh absolutely that's one of the recognized things here regarding individuals having often different reactions +ve or -ve I was more curious as an addendum to the documented tic triggers on these forums over the years, so thanks for mentioning something you have noticed.

@Conanjaguar have you had tics wax after eating lectins specifically? Raw? Cooked? I must say that is not a tic trigger we ever identified, especially as my son loves pasta and freshly made marinara sauce with no tic increase ever noted, and also enjoys lentils, black beans etc, also high in lectins?

Yes, chlorinated pools had such a negative impact on my son as well! Try keeping a journal so you can identify your child's tic triggers and responses to supplements or other changes. It helped us to do that. I hope those vocals will wane for your son

We used it specifically for a persistent yelling/shrieking tic. It helped very quickly and that specific tic went away and has never returned. This was over 20 years ago. Other minor vocal tics have always been part of my son's TS but they too lessened, as did most of his tics, from his overall treatment regimin which I have documented in my "About Me" on my profile page here. There is a link there to a thread I made about what treatments helped him

You could always try a little of your shower gel to make the bubbles if that helps? but honestly, the benefits were such that my son actually looked forward to his Epsom soak and the tic relief plus good sleep it brought. The essential oils were an added benefit and made the bath smell so nice. I forgot to mention we also used eucalyptus essential oil when that was his choice. L-carnitine, also known as levocarnitine, is a naturally occurring amino acid. It has a major role in fat conversion/energy production, but also has many other important benefits. As we were using it short term (suggested no more than 6 mths at 500mg daily - we used it for a much shorter period)we didn't notice weight loss It is known to have neuroprotective effects. Our Integrative physician at the time cited some studies, and on his suggestion we tried it and had immediate relief from persistent vocal tics. Others on this forum and also our PANS/PANDAS forum have also reported relief from vocal tics while using it.

@JulesLou A few drops of a favorite essential oil in the Epsom water smells great and has its own health benefits. We have used lavender, jasmine, rosemary and others. Just a few drops into the last of the running water to mix it well Soaking first for 10-20min in just plain warm epsom water (2 cups epsom salts was what we were recommended) with only added few drops essential oil if wanted, is how we found most benefit and then he would head for bed to read or something relaxing before sleep, which is sounder after the soak. If he needed a quick shower to clean up first, he did that and then soaked. While soaking he sometimes liked music on. Always bottled water to sip too. When he was older he liked some chamomile tea I do know some people shower after - but we wanted the transdermal benefit of the epsom salts overnight and so he would usually quick shower in morning before school

That is hard when you can't find a good physician to guide you. We found Integrative doctors to be most helpful due to their training in both conventional as well as natural healthcare. We used NOW Foods l-Carnitine as at the time (over 20 years ago!) it was the only one we could find easily. I think there are a number of brands around, but always just try to have minimal "other ingredients" where possible. We saw a positive effect after just a few days of adding it to his supplement regimin. At the time we were also carefully keeping a journal to try to learn about potential tic triggers for him, so that we could minimize them as much as possible or eliminate where possible. We saw encouraging improvements but those very loud vocals were persistent till we added the l-Carnitine on his physician's suggestion. My son had what was termed Tourettic OCD, where tics morphed into OCD stuff and vice versa. So the vocals had a persistence that was interrupting school & social activities Do take a look at the main ACN Latitudes website here as well as there is a lot of excellent info, plus helpful resources. Latitudes.org

Welcome to the forum JulesLou As tics can be the result of variable factors, I can only speak from experience regarding Tourette Syndrome tics. The only supplement that helped with loud vocal tics for my TS son was daily 500mg l-Carnitine, used short term until the loud vocals had settled. As your son is now at the age of puberty, IF he has TS then an increase in some tics may be related to the hormonal changes, specifically increases in dopamine in pubertal boys. It is possible that your child has these tics for a different reason than TS