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Everything posted by Cj60

  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
  16. Thanks for the post!! My children have stopped the prescribed vaccination schedule since we started dealing with tic issues. I'm considering getting them back on a very slow, one at a time schedule. But this makes me very nervous: In another forum a parent posted research about immunizations and CDC statistics. In the article there was mentioned that immunizations and vacinations are contaminated with mycoplasma bacteria, approximately 55%+.Can you provide the citation? Thanks, Chris
  17. My son had a breathing tic when his tics were at their highest point, just as we started getting help from an environmental practice that helped us with some food eliminations and a rotation diet, along with a couple of other things. And on other ocassions, even when the tic wasn't noticeable to me, he mentioned having the feeling of not getting enough air, which I considered to be the same issue as the noticeable tic. It was probably the first tic to go away once we adjusted his diet. Perhaps the regular supplement of magnesium (Natural Calm and epsom salt baths) helped, too. Chris
  18. Hello Genevieve, I understand your concerns. The few years I've been on this forum have taught me that every child's situation is unique, that there is what seems at times to be an endless process of trial and error. But I believe that the most important thing a parent can do is to take steps. You are taking steps and I believe they will ultimately have positive results. Some of what you say reminds me of what we went through. Initial onset of tics (eyelash pulling, stopping while walking and squatting to pull up socks, and probably others we didn't pick up on) started around age 4. I was panic stricken. Went to a pediatric neurologist who would have subscribed meds if we had asked, and to a ped. psychologist. We did a couple of novice knee jerk dietary changes: he drank loads of apple juice so we cut that right out, added chicken and turkey to his diet - he was eating pretty much a vegetarian diet, due to household norms. The tics lasted a several months and went away. They may have recurred around a year later, to a lesser degree, then stopped again. Age 8, my son started (in March!) with a head jerk that was minor but noticeable, then increased over the summer. This was accompanied over time by arms extending, then leg stretches, a breathing tic, some ocd behaviors. Again, I was upset by all this, and fortunately found this forum around the same time I made a second ped. neurorlogist visit (terrible experience - callous, unprofessional, drug peddling dr., sorry for being so blunt). We then identified an evironmental practice that was life saving. It was wonderful to have drs. who knew what we were talking about and had plans of action that were not "ignore causes and medicate." The most important thing this practice provided to us was a rotation diet based on food sensitivities that were identified through the pin-prick method. Over the course of several visits they provided other tests and recommendations, but the changes that helped us, along with the diet, were found here. Of course, the consistent delivery of magnesium via Natural Calm and epsom salt baths were part of what we took up. Then, we introduced a potent, comprehensive multi, which had significant results with our son. Then, the subsequent addition of another supplement that was identified through paying attention to what different ingredients in the multi actually do once inside the body. Within a year of finding this site and implementing these changes, things were much better with my son. While your case seems similar in some ways to ours, it also seems to be different in one significant way: my son did not experience sudden overnight onset. It was more gradual. So there may very well be some infection-related issue with your child. I see that you have had strep and lyme testing done. But those infections may require sophisticated testing procedures that an average pediatrician may not be on top of. I'm not sure if you've been on the Pandas / Pans board, but I would recommend comparing notes with the very knowledgeable parents on that board. Hang in. Continue looking and things will hopefully improve. Chris
  19. You might give this link a try: http://www.aaemonline.org - Chris
  20. Hi, I think I recall (it's been a while) using around a heaping teaspoon of natural calm in hot water with honey when we were using it. Like you say, the real indicator will be the loose stools. I don't think we could go above that dosage in one day. On some days, we would do epsom salt baths in addition to the NC, (NC in the morning, epsom salt in the evening) which didn't adversely affect bowel movements. We stopped the natural calm when we started using the spectrum complete multivitamin, which has 200 mg. of magnesium per serving. I think we tried taurine a couple of times before we settled into a stable pattern of supplements (consisting of the multi and glucosamine sulfate, but these in addition to a clean diet), but I thought I perceived an adverse reaction (increase in tics) and at the time that was not what I wanted to see, so I stopped it. I may have been crazy, but didn't take any chances. I was hesitant to add anything without the advice of one of the drs. at the environmental practice we were going to. On the couple of ocassions that I did try something on my own, I made sure I did it and nothing else at the same time, and watched like a hawk to see if there were and reactions, positive or negative. Good luck, Chris
  21. Our environmental dr. was a little different. He took things one step at a time. That is, one supplement at a time in order to be able to accurately monitor reactions. Your son has been given a barrage of simultaneous treatments which might make it difficult to see what's effective and what's not, or even what specifically might be making things worse so you can determine whehter there's herxing or just a negative reaction.
  22. We started off with what we thought were decent multis from our local health food store. But as we got more and more informed about what we were putting into our child's body, we found that they were not up to snuff. We then began to order our supplements from Kirkman Labs (http://www.kirkmanlabs.com). They have a children's multi (Spectrum Complette II) that has had positive results (in conjunction with other significant dietary modifications) with our son. If you get the chance, read Safeplate's post on GMO ingredients. While that post focuses on identifying GMO ingredients, the kind of sleuthing described there is the kind of sleuthing that that one needs to do in order to eliminate undesirable ingredients. It's a lot of work up front. Very stressful. Can be a little costly (you end up buying organic). But in many cases, well worth it in the long run. Safeplate's post identifies vitamins (B12, C and E) as something to keep an eye on, too. That hadn't been on my radar. So now I'm going to ask Kirkman if they're GMO free the next time I order our vitamins. (My hunch is that they are.) - Chris
  23. Thanks for posting the link to these very useful lists, Safeplate!! - Chris
  24. We also experienced a gradual decrease in tics after establishing dietary changes. Part of that process were occasional rises in tic activity. But we never observed a sustained increase of new tics. Are your children taking good multivitamins? That was something that brought about a noticeable improvement in our son well after we had initiated the new diet. He had been taking a fairly generic multi as part of the modifications to his diet, but when we switched to a fairly potent one, the improvement was almost immediate. There are threads on this forum that mention different brands of good multis. Another improvement came when we identified a food item that wasn't agreeing with him (oranges). We had made extensive changes to his diet, and were hyper vigilant about what he ate, but somehow oranges had slipped through the cracks without being noticed. He took his multi every morning with orange juice... When we removed them, ticcing lessened, again almost immediately. I just mention this because even though your sons have a very healthy diet, there might be an item still in there (or recently introduced) that is causing an issue. Good luck, Chris
  25. Here's the link to the American Academy of Environmental Medicine. You should be able to turn up some environmental practices by doing a search there. http://www.aaemonline.org Good luck, Chris
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