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Cj60

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Cj60 last won the day on November 24 2014

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  1. Hi, When my son's tics were at their peak (multiple tics, both simple and complex), the breathing tic (slow deep breaths kind of through his nose and mouth simultaneously) appeared. Breathing tics are classified as a vocal tic, so a pediatric neurologist diagnosed TS, with the caveat that the tics had not been present for a full year. (Even so, she prescribed some toxic meds we opted out of, so be wary of pediatric neurologists.) Ultimately we found an environmental practice and ended up eliminating lots of foods and rotating lots of others in his diet. A long term consistently healthy diet based on his food intolerances (not easy but worth the effort!) and some good multivitamins took care of all of his tics over time. Today he has none that I am able to perceive. Best of luck to you as you work your way through things! Chris
  2. Ahh. Sorry to be misleading. No, we didn't do a candida or paleo diet. Going without grains would have definitely made things more difficult. Nonetheless, we did make significant changes regarding what gets eaten. I've known others whose children would have benefitted from a diet change but never considered doing it because, basically, it's too tough to do. "What?? No froot loops??" I guess, recognizing that the dietary changes you're facing are so tough to do, I'd want to have some good sound reasons behind my decision to do it. Other professional opinions? - Chris
  3. This would make me a little uneasy. I'd think a dr. should be able to be somewhat specific if s/he is prescribing supplementation. It was worth it for us! A real drag at first! New diet, new shopping practices, more money (for healthy food), challenges helping a child manage a new diet while his friends are not having to deal with the restrictions s/he is dealing with. All in all, a significant life style change that takes lots of work. But it helped us. So for us it was (is) worth it. I'd just make sure you have a dr., environmental or other, that you are comfortable with and in whom you have confidence. Good luck!
  4. Hi Tiger, I strongly suspect that my son's tics were caused by sulfation issues, which can be closely related to phenol and salicylate issues. Here's a link with some basics: http://www.livingnetwork.co.za/chelationnetwork/food/sulfates_sulfation_feingold/ If you google you'll find loads of good reading on the topics. After a period of worrying and watching and reading and getting invaluable help from this forum, it turned out that diet and a couple of supplements were our most effective way of helping him with his sulfation issues. The process of watching everything he ate was crucial. We watched literally everything that went into his body even after he had been tested for food sensitivities and been placed on a rotation diet which eliminated some of the offending foods and decreased the frequency with which he ate others, and, of course, had eliminated all artificial additives. We continued to identify foods that caused him problems, and frequently they tied into the matter of sulfation. What we found helped (and continues to help) his system rid itself of the toxins that build up due to poor sulfation were a potent multivitamin (with lots of magnesium in it) and an added dose of glucosamine sulfate. So we kept the stuff his system couldn't handle out, and put in stuff that helped his body get rid of the bad stuff that we couldn't keep out entirely. Good luck! Chris
  5. Hi, Perhaps your son's throat clearing has an ocd-ish element that your other children didn't exhibit, so it's partly a compulsion? When we were suspecting ocd behaviors with our son, we would prepare teas with licorice root and/or lemon balm as ingredients, and we would stir in some inositol and honey. This would help the minor symptoms we observed. I just looked through my cabinets and didn't see any still sitting around back there with licorice root, but we always have Tummy Comfort (with lemon balm) on hand. You might want to check Chemar's signature link for some recommendable teas. Good luck, Chris
  6. Did a quick forums search. Found: http://latitudes.org/forums/index.php?showtopic=23191&hl=tumeric#entry177254 That topic has a post from a llm: Posted 28 September 2014 - 02:14 PM This Time Magazine article on Tumeric's neuro-regenerative properties might be of interest http://time.com/3442...E: Top Stories) Many on the forum use tumeric in the form of Enhansa by Lee Silsby http://leesilsby.com/enhansa-homepage but you can also get forms of tumeric OTC. High doses of Omega 3s can also help with excessive brain inflammation and CoQ10 is known to help restire the myelin sheath around nerves. - Chris
  7. Hi, Natural Calm was our go to supplement when we first started addressing tic issues. We also built up to 1 tsp in the am and antoher in the pm. We found that any more than that resulted in loose stools, which is usually the factor that tells you your child has hit her/his limit. Eventually we added on a powerful, comprehensive multi vitamin, which contained a significant amount of mg, so at that time we tapered off of the Natural Calm. Good luck! Chris
  8. I think being up front with your kids (to the extent that they get what you're telling them) is the best thing. My son knew he had to deal with restrictions that other kids didn't have to deal with, but we always let him know that the changes were in his best interest. We also tried to compensate with other kinds of rewards when it was possible and appropriate to do so. Halloween was hard. But more for us than him, because we thought he would feel different. But he didn't. He still trick or treated with his friends, brought the crap home, and we subsituted it for other things that made him just as happy. Kids are more resilient than we suspect, I think. The ironic thing is, feeding your kids good stuff usually ends up being a non-issue for them. The habitual longing for the junk goes away eventually, after it has been substituted with a healthier "habit" -- healthy eating. My wife would probably not have been as thorough as I insisted we be as we worked our way through things. She's rolled her eyes on more than one ocassion. But she was the one who, in the end, did most of the hard work: shopping and preparing meals. So I really do recognize the importance of teamwork when dealing with kids' health concerns. One thing I can say with confidence, and I'm sure I'm not alone. Poor diets affect lots of kids adversely, whether the parents pick up on it or not. Over time, I've seen kids my son has contact with develop issues who seemed to be perfectly fine when my son was having his issues. It's not easy to have a healthy diet nowadays. And bad diet will get kids sooner or later. Finally, with regard to tv… my kids watch tv. Probably too much. I'm not proud of it. Lots of folks I know have never let their kids watch tv period. Tics has nothing to do with it for them. They believe tv adversely affects a child's development. Those kids are all perfectly normal, if not intelectual "high performers." They are not social outcasts. I know your children have two parents, and when each has a different opion, negotiation is part of the picture. But don't feel you're doing wrong by not letting your children watch tv. You're probably doing them a big favor. Good luck! Chris
  9. Hi, Once we had run the gamut of tradtional drs. (Pediatrician, Ped. Neruologist, Ped. Psychologist), we sought out an environmental practice. A big part of the practice (but not the only part) was the allergist. His method was the pin prick method. He asked for details about our son's diet, then based on that information targeted a whole bunch of food items to test for by pricking my son's upper arms with the potentially offending agents. According to the reaction, he determined the level of harm the item was causing. My son was young at the time, and his upper arms weren't big enough to handle all the tests in one visit, so it took us two visits, with a period of around a month, I think, in between. But this worked for us. The allergist identified six or eight items that needed to be either eliminated or "rotated" in his diet. We had already identified some harmful foods on our own, and identified others even after the skin prick tests (perhpaps we hadn't included them on the list of foods that the allergist tested for), but the guidance from these tests put us on a strict rotation diet (difficult at first, but then became second nature) which over time was at the root of my son's improvement. I think from the time of the start of the rotation diet to the time when the tics were virtually unnoticeable was around six months or so. But there were some varialbles in there too; a couple of supplements that we learned about along the way that were also helpful. I'll add that the allergist was only one component of the environmental practice we attended. The main dr. ran several diagnostic tests as we tried to figure things out. In the end, though, it was the diet and the advice we got on this forum concerning supplements that have had the most significant effects with regard to my son's improvement. I know others swear by the blood test for determining intolerances. But the skin prick method was effective for us. We only did the food allergen tests. We always planned to go back for the tests for air born allergens, but never did. My son's issues were most probably gut-related, since addressing food issues cleared things up over time. Good luck with your visit, Chris
  10. Hi Barb, Sorry, I can't recommend anyone from that area. Did you do a search at the American Academy of Environmental Medecine website (http://www.aaemonline.org)? You can search practices by state. When I searched I got a list, like you said, but decided just to contact the closest ones. From there we went with the one that could give us the quickest appointment. Chris
  11. Hello Barbara, There definitely can be a link between gastrointestinal problems and tics. While you're waiting for your dr. visit, you can try to keep your son's diet as healthy as possible: no artificials, preservatives or other chemical additives; eat organic and avoid GMO foods to the greatest extent possible. Removing dairy, which is a common food problem for children with sensitive digestive tracks, is probably a good idea. Also, is there a food that he eats far more commonly than other foods? If so, his body may have developed an intolerance to it, so curbing his intake or removing that food altogether might be a good idea while you are waiting to see what dietary sensitivities he migh have. A healthy, potent multi vitamin is also a good idea, but make sure it's free of additives that are unhealthy. We use one called Kirkman Spectrum Complete II, but others have had success with other multis, too (you could search the forum to see what information you can find in previous discussions). Magnesium is also beneficial for removing toxins that can build up and result in ticcing. A Mg supplement that is commonly cited here is called Natural Calm. Epsom salt (magnesium sulfate) baths are also beneficial for kids with tics (both the magnesium and the sulfate help rid the body of toxins). If you are able do these things until your dr. visit, you'll be taking some good early steps. Good luck! Chris
  12. Hello, I can fully relate to the worry and sleeplessness. Neither help anything, however, so breath deep, and have confidence that now that you are at work on figuring things out, you're moving in the right direction. Doing something (like gathering information here and elsewhere) is helpful, for both your child and yourself, so give yourself a pat on the back for being proactive. My time on this forum has led me to recognize that there are different physiological / neurological issues that result in ticcing. In my case, our children's tic issues, which have ranged from a little frightening to mostly minor, are almost certainly related to gut health, and probably have an underlying genetic predisposition. We have been able to manage things through diet and a couple of supplements. Other children have greater complications which can't be meliorated simply by a modified diet and a supplement or two (if you look at the Pans/Pandas forum you'll get some good information on some of the infection-related tic issues). So your first job is to start identifying what may be causing your son's tics. A traditional pediatrician is unlikely to give you good information, because most of the useful information regarding tics and how to treat them are 'anecdotal.' Pharmaceutical companies dedicate money to R and D on big-ticket items, not so much on less widely spread health issues. So, since most pediatricians diagnose and treat based on research that they can pull up on their computers, and there is not much Big Pharma research available on tic related health issues for them to pull up, they don't diagnose well. They are basically under-informed. You are even less likely to get useful information from a pediatric neurologist. You'll probably need to consult both due to insurance company matters. So do so, if necessary, but don't get alarmed by whay you hear (questionable drugs are usually part of the PN's treatment), and keep in mind that your best information regarding how to go about addressing your son's tic issues will be found elsewhere: Sheila Roger's Natural Treatment for Tics and Tourettes; a doctor with experience with alternative methods of treatment (we have used an Environmental Medicine practice) who recognizes and has experience (other than administering toxic drugs) dealing with the issues you and your son are dealing with; and, last but not least, these forums, which are a great wealth of information. Good luck, and hang in there, Chris
  13. I've seen manganese mentioned here. Might be worth searching. Manganese does have noted health benefits. But it is also easy enough to get through common food sources (oats, brown rice, chick peas, … ). It's in the multi I give my kids (2mg / 100%) and has had no perceived adverse affects. Even when they probably get plenty of it through their diet. I see stuff in the label posted above that I wouldn't put in my kids' bodies, let alone the manganese. And wonder bread is simply unhealthy food. Shouldn't be in anyone's diet, in my opinion. - Chris
  14. Hi, I've not dealt directly with sensitivities like the ones you're describing, but over the years I have seen many such tics described and discussed on this forum. Hopefuly you'll be receiving good feedback soon. One thing I might observe from what you write is that while I can certainly understand a child's frustration with someone adjusting his clothes in a way that makes him uncomfortable, it seems like the reaction you describe is worth paying attention to, especially considering that an infection might be related to the onset of the sniffing tic. You'll get very helpful information on this forum, but I would recommend that you cut and paste your post to the PANS/PANDAS forum, also, and see if can find help there, too. - Chris
  15. Like your son, my son's tics started and stopped over a period of several years, then seemed to multiply over a period of a few months to the point of becoming a real concern to us. But dietary changes did end up (eventually) making a noticeable difference with him. My suggestions would be: 1) be very cautious with regard to the feedback you get from the ped. neur. My experience with the two I saw was that they are way behind the curve with uncovering root causes to tics. In our case, they were useless (even harmful considering the stress and concern that they provoked). 2) identify an environmental practice that can help you sort things out. Unlike the traditional ped. neruologists, environmental doctors allow themselves to think and treat in broader ways, and don't allow themselves to be trapped by the standard line that "there are no studies to corroborate that" or "the evidence is all anecdotal." 3) look more seriously into the possibility that an underlying infection might have something to do with the tics. The original sinus infection indicates that possibility, along with the fact that he seems already to have a pretty healthy diet (not that there couldn't still be something(s) he's eating that are not agreeing with him). Good luck Chris
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