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  4. 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 🙂
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  6. 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.
  7. Hi there - My daughter was diagnosed 4 years ago and our doctor has had her take just an over the counter allergy pill every day since. I'm not sure if there is a way to tell if they have histamine issues, so we just take it in case she does. I'm not sure that it's helping, but it isn't causing her any harm so we continue with it. Good luck!
  8. Hi there. Could someone help me understand the below thread? My 3 yr old son has pans. Positive for Lyme, Mycoplasma. He had his first IVIG and it went great for a few days…then he CRASHED. All Pans symptoms got worse. We do 2nd a IVIG next week. Are people saying don’t do IVIG with Lyme or that it will cause a herx and hi just need to power through?
  9. Conanjaguar How did you find the optimal dose of Magnesium and B6? How long did it take to see a reduction? Are the tics gone or greatly reduced? Thank you!
  10. Salicylates! That’s the word I was looking for. Strangely enough, tomatoes and beans are the only ones with any effects that I’ve noticed.
  11. 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
  12. I have just looked up Lectins and it also states potatoes which my son enjoys baked potatoes and boiled potatoes. Have you had any reactions to eating potatoes? Thank you for your advice, I really appreciate any help!
  13. Funny you should say that as I have wondered about tomatoes! Yesterday I made pizzas but used a small amount of bbq sauce and chicken (he usually has tomato paste and pepperoni). We have homemade pizza one a week and spaghetti bolognese.
  14. Hello, Is it safe to try these? How does one know if the child with PANS might have histamine issues and benefit from these? Any particular brands? Any labwork that would indicate that they might help? Many thanks!
  15. How do we really know the damage that mold is doing to our kids? I am wondering if his one case of covid and his covid/flu vaccines could have contributed. Looking back at the timing, we’d lived in our house 5 years at the time his OCD, agitation outbursts, and regression/needing constant prompting appeared (he has autism). So this makes me wonder if ALL (mold and vaccines/covid) may have contributed. Guess I would like to know that we can keep living in our house even if not perfectly remediated (bc how does one truly know it’s ALL GONE?), and that mold alone didn’t cause this.
  16. 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.
  17. After tomatoes; cooked or raw. I haven’t had raw beans, but cooked beans don’t really seem to affect me. Each case is different and unique.
  18. @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?
  19. @JulesLou Lectins in food might be a cause, for instance if your son eats a lot of tomato products or similar foods. There are supplements that partially or completely block them, or just remove them from his diet.
  20. 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
  21. Thank you again, my son has vocal tics which are noticeable but bearable but last Sunday he went swimming for the first time in ages and Monday he has started two different very loud noises so I am convinced the chlorine in the pool has started these. I am hoping that they will settle down again soon but will now look into buying L carnitine. I am also thinking about eliminating dairy to see if this helps as I have read lots of stories on this.
  22. 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
  23. Thank you for your reply, when you used the L carnitine did the vocal tics go altogether or just improve a little? Also when you stopped using it did the vocal tics become worse again?
  24. 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.
  25. Thank you for your reply, my son doesn’t like the baths as obviously he is lying in just warm water (no bubbles) so was just wondering. Also you mentioned previously l carntinte worked well for your sons vocal tics, I have looked this up and says it is for weight loss so what actually is it and how does it help? Sorry so many questions but am desperate for something that will help!
  26. @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
  27. I have been giving my son son Epsom salt baths every other night for a long time. Just wondering if people add something to make bubbles and a bit more like a bath? My son uses a Sanex shower gel that has no perfumes and have thought of adding this but will this rule out the salts effects? Just trying to make the bath a bit of a nicer experience for him!
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