qannie47 Posted November 22, 2013 Report Share Posted November 22, 2013 I have seen a major improvement since my ds moves out of his last episode. Mood, emotional regulation, anger, motoric movements, all pretty much 90% gone. School is reporting great things as well. However, I have noticed while my son is falling asleep, he is clacking his teeth for about 2 minutes nonstop. He is also Making "rasberries" intermittently. I am seeing some of this during the day...I am seeing more of this in recent days even though the rest of his symptoms are gone. I looked on the internet and found "Tic Tamer". A quick read shows quite a bit of positive feedback. anybody have any experience with this? I ran out of magnesium supplements about a month ago...I have read that helps tic as well. Really want feedback on this tic tamer.... Link to comment Share on other sites More sharing options...
cara615 Posted November 22, 2013 Report Share Posted November 22, 2013 We tried Tic tamer. it did not work for us. It made my son's tics worse in fact. Not sure why. Have you addressed food intolerances and yeast with your child? i know that when I killed yeast, my son's tics reduced significantly. Also, when you remove foods that may be causing inflammation, that also reduced tics. When I removed gluten/dairy and corn we saw another very significant reduction in tics. Link to comment Share on other sites More sharing options...
LNN Posted November 22, 2013 Report Share Posted November 22, 2013 The amazon reviews aren't encouraging but here's an ACN thread from a few years ago about it on the TS Forum http://www.latitudes.org/forums/index.php?showtopic=5106 The mom seemed pretty up on it but it seems other triggers were at play, so hard to tease out how this product contributed. Link to comment Share on other sites More sharing options...
qannie47 Posted November 22, 2013 Author Report Share Posted November 22, 2013 thanks guys....I think I am going to start with adding the magnesium back into his regime Link to comment Share on other sites More sharing options...
Mayzoo Posted November 22, 2013 Report Share Posted November 22, 2013 My kiddo's vocal tic shows up when she is more tired. Also, what vitamins, meds, or herbs do you give exclusively around noonish? Maybe some die off from that? We had that for a while, and I just gave some charcoal between noonish meds and night meds and that seemed to help. No advice on tic tamer, but I will read up on it. Link to comment Share on other sites More sharing options...
cara615 Posted November 22, 2013 Report Share Posted November 22, 2013 Epsom salt baths help us at tons! Calms everyone down. That's magnesium too . Link to comment Share on other sites More sharing options...
qannie47 Posted November 22, 2013 Author Report Share Posted November 22, 2013 Mazoo, He takes his probiotic and 100mg of Lipoic acid. This all seemed to start when I introduced Lipoic acid, but I cant see how that would cause that. He has been taking the probiotic mid day for a long time so I don't think that is the problem either. What I think is that this is just another progressive expression of his Pandas. He always had the Gross motor tics (big movements and Karate chops) but these new ones are more simple which seems to be more typical of what other people report. I just find in interesting that while the rest of his symptoms are next to nothing, this is popping up. He was about 2 days out from finishing his 5 day steroid burst when this all started, so maybe that is what caused it. We gave it to him to clear up the residual symptoms that were hanging around and it worked. One time shot though. So hopefully this will pass. Link to comment Share on other sites More sharing options...
pr40 Posted November 22, 2013 Report Share Posted November 22, 2013 if I understand things, it is hard to explain even harder to prove if lipoic acid did or did not cause tics. but, if you stop giving it, you might see changes and you will then know. to test, ds can start lipoic acid again. but there is a different point I want to make. we saw a lot of raspberries, a lot of mouth produced tics which suddenly disappeared as ds got better. on the other hand, if mouth tics were the only thing our ds had and was otherwise ok, I would celebrate. I don't expect for either of our kids to be "normal." I don't think wife and I are all that normal, either. I hope for a good quality of life. Link to comment Share on other sites More sharing options...
qannie47 Posted November 23, 2013 Author Report Share Posted November 23, 2013 Yeah, I get that pr40....The school thought to give him wax candy, you know, the stuff with the flavored juice in it and then you can chew on the wax? Gave him something to do with his mouth....work out his anxiety....it worked quite well...Yesterday, after they gave it to him to chew on all day, it was the first time he came home since this started a week ago that I did not see any tics. So I will go buy the wax candy....if it works it works...and yes I have been celebrating since the end of his episode about a month ago! Link to comment Share on other sites More sharing options...
rowingmom Posted November 26, 2013 Report Share Posted November 26, 2013 For some reason, the only time DD tics now is when she chews gum. Found this about lipoic acid/ALA: Lipoic acid increases glutathione production and enhances the effect of mercury in human cell lines.http://www.ncbi.nlm.nih.gov/pubmed/12049840 Thiols are known to influence the metabolism of glutathione. In a previous study (Toxicology 156 (2001) 93) dithiothreitol (DTT) did not show any effect on intra- or extracellular glutathione concentrations in HeLa cell cultures but increased the effects of mercury ions on glutathione concentrations, whereas monothiols such as N-acetylcysteine (NAC) or glutathione did not. Not sure if there would be any relationship with toxin production and buildup. Link to comment Share on other sites More sharing options...
qannie47 Posted November 26, 2013 Author Report Share Posted November 26, 2013 Thanks rowing mom. If my memory serves me correctly, the form of Lipoic acid is not the same one cited in this abstract, there are 2 different forms, hopefully, I am correct. Just in case, I have sent this to the prescribing doc.... Link to comment Share on other sites More sharing options...
qannie47 Posted November 26, 2013 Author Report Share Posted November 26, 2013 rowing mom: Interesting about your dd and gum chewing. I wonder why? We have been giving my ds those old fashion wax bottle candies. The ones that you can chew on the wax afterwards and they have been helping him immensely with his mouth tics. Link to comment Share on other sites More sharing options...
rowingmom Posted November 26, 2013 Report Share Posted November 26, 2013 (edited) Chewing gum is the only thing that now triggers DD to do her mouth-stretching tic, other than straight suggestion. This happens with both xylitol and sugar-sweetened gums. Her ticcing is still suggestible, but I don't even see it in the evenings anymore. Edited November 26, 2013 by rowingmom Link to comment Share on other sites More sharing options...
qannie47 Posted November 27, 2013 Author Report Share Posted November 27, 2013 My ds will chew an entire packed of gum if I don't stay on top of him. I realized I have to hold on to gum for him or he will just chew 20 pieces...I have often wondered if the phenlyalinine that causes him problems. One or two pieces don't seem to cause any problems. Link to comment Share on other sites More sharing options...
qannie47 Posted December 4, 2013 Author Report Share Posted December 4, 2013 My ds's tics completely disappeared 3 days ago...I mean completely gone!!! I reduced lipoic acid to 2x day instead of 3, but I don't think that was it. I think it was the effects of the steroid burst. Btw STILL doing great!!! From my nutritionist: Healing the BBB D7 1x day EFA 1xday Lipoic acid 100mg 2x day Strawberries, blueberries, & spinach (as often as they will eat it) Link to comment Share on other sites More sharing options...
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