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Bigal
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Hi I'm trying to figure out how much Taurine to give my 11.5 year old son, who weighs about 65 lbs. His tics are moderate, but are definitely a nuisance and he hates them. I haven't been able to find anything to really help. We did food sensitivity testing and eliminated several foods/ingredients but that didn't help. Currently, he is taking 2/3 teaspoon of fish oil daily and 1.5 teaspoons of Natural Calm. I'd like to add taurine to that mix and see if it helps. I bought Whole foods Free-Form Taurine. Each capsule is 500 mg. I'll probably need to open the capsule and empty them. So adjusting the unit doseage is not an issue. Also, I'd be fine with getting another product altogether. Also, we had previously had a specially formulated multi vitamin made for him based on a doctor prescribed Metametrix blood test. Now that we have used that up, I'm looking for a good multi without dyes. I'm concerned about too much Vitamin D. I'd prefer to keep it at 200IU. In the past, 400IU seemed to make him tic. But the again, it's so hard to tell what helps and hurts his tics as they wax and wane anyway. Thanks in advance Alan
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Thank You Allie, I'll look at that.
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Thank you again Chemar. Anyway to know if an Epsom salt bath instead of the supplement is adequate?
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Thank You Chemar. OK then, I have the right product. I guess I just had the name wrong. Is this a supplement to give everyday or just when tics are bad? If he takes an Epson salt bath could he skip it for the day? Thanks again Alan
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I've seen a product called "Nature Calm" discussed here. I thought I'd try it with my 11 year old son with TS. They did not have "Nature Calm" at Whole Foods. But they did have a similarly named product called "Natural Calm". It's listed ingredients are: Ionic Mangesium Citrate, organic orange flavor and organic stevia. The served size is 2 rounded teaspoons and the amount per serving is 325 mg. Is this the same thing as "Nature Calm"? Too start, I am giving my son a little less than 1/4 teaspoon in a glass of water, twice a day. I intend to at least double that doseage slowly, as long it is tolerated (he doesn't get diahhrea), Does that sound appropriate? He weighs about 70 lbs. Do most people use this on a continual basis, or just when the tics get bad? Also, if I could get him to take an Epsom salt bath, could we avoid taking it that day? He really does not like it. Thank you Alan
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Thanks JJ, We've scheduled the assessment. It's about three weeks out. So we'll know more soon. Alan
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Hi MMW Thanks much for your reply. That's wonderful that it has helped your son so much. We will be going to an info session next week and I'm pretty sure that we will sign up for testing. We may or may not do the program. Our son's issues are real (anxiety, ADHD, tourettes, NLD), but they are all mild and he is functioning well out there. I worry about the future though, especially with the tics. We may start working with a chiropractic neurologist who does very similar stuff but we would usually do the exercises at home. Thanks so much for your reply. Anybody else out there used BB? Alan
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Hi I am considering sending my son to the local Brain Balancing Center. He is 10 years old with TS, anxiety disorder and ADD. I would say that his symptoms with all of these is mild to moderate. So who has tried it? How were the results. Thanks in advance Alan
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Does the appearance of a complex tic mean that the tourette's is getting worse?
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Thanks Chemar. Wyatt hasn't had OCD symptoms, or at least we haven't noticed them. So for the timebeing, I won't worry about that. Alan
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My 10 year old son who has a tourette's diagnosis has started to occasionally jump as he is walking. "Jump" is really not accurate, but I don't know how else to describe it. It's a mild jump. Maybe it's more like a bounce step every few steps when he's walking. It's seems to happen more when he is playing sports, which might indicate that it is because in the past his tics have gotten worse when he was playing sports. I asked him if it was a tic and he said it might be. I'm used to hearing about facial, shoulder and phonic tics. Can this too be a tic? Or is it probably just one of sev4ral habits. thanks Alan
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My 10 year old son has tourettes. Most of the time the tics are minimal, but there have been two significant outbreaks. About two years ago the tics got a lot worse for a brief period of time. Blinking was the main tic. I started giving him Nordic Naturals Cod Liver Oil and the tics disappeared 9 days later. I attributed the tics stopping to the fish oil and for quite awhile I swore by fishoil. Then this past winter his tics got a lot worse than they'd ever been. Some people on this board will remember that I was in a bit of a panic. That outbreak lasted about 3 weeks then abruptly improved considerably and then continued to slowly improve until the tics became barely noticable. During the outbreak, I switched to Flax Seed oil. I don't know if that mattered. He had tolerated the fish oil for quite awhile. So we were continuing with daily flax seed oil, when my wife found some articles that talked about hormone disruptors in flax seed oil. I just did a quick google search and found this one: http://www.thenourishinggourmet.com/2009/03/flax-seed-and-oil-phytoestrogens-phytic-acid-and-pregnancy-risks.html We then switched to Chia seeds. He hasn't been taking them regularly though. It's a little harder because it's supposed to be a snack as opposed to a supplement in the morning. Honestly, I really can't tell if any of these have helped my son. As mentioned earlier, I used to swear by fish oil. He was ticcing a lot and nine days after fish oil, he stopped. But then two years later his tics got bad again while he was on fish oil and three weeks later they stopped. I'm frustrated because I find it difficult to ascertain cause and effect. Anyway, for now, Wyatt is on chia seeds.
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Hey Alan, I agree with Chemar; my son never tested positive for any allergens from a pediatric allergist, but when we went to a naturopathic doctor, they were able to detect food "sensitivities", so certain foods have been eliminated from his diet. We had already cut out gluten. After the naturopath, we eliminated soy dairy, and yeast. I think taking one particular reactive food out of the diet can help you figure out culprits. However, it's my understanding that it can take weeks to completely eliminate the residual effects of that food from the person's system. The naturopath also works with an MD who performs other tests to see what deficiencies are present as well. For my son, he was missing zinc and amino acids, so it addition to the eliminations, he takes supplements to resupply his body from what he's not properly "uptaking" from his body. I think this process can be expensive and sort of like "a needle in a haystack", but I truly think there's a direct correlation between Tourette's and food/nutrition. Hope that's helpful! Eve Thank you Eve and Chemar, that's helpful Eve, do you know how the Naturepath diagnosed the sensitivities? Alan
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Hi Wombat Honestly, I'm getting really confused by these tests. But FWIW, when I spoke to my/my son's allergist yesterday he said something very similar to what you just said about IGg tests. And he didn't have a nice thing to say about those who sell the tests. He said it's useless and that they must know that. Honestly, I don't know what to think anymore. You mentioned ELISA test and that confuses me. I thought IGg is a rast test. I thought Elisa was something else. Alan
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Thanks Guy No, I actually have not put him on the Clonazepam. I have the pills though. Unfortunately, his tics remain constant and frequent. I thought they were waning and perhaps they did from a peak last week. But they're still far more than we are accustomed to. When they initially got bad, I had him take some espsom salt baths, to no apparent benefit. I'm going to have some blood work done, hopefully tomorrow. I think we'll be testing for Magnesium, Vit D, metals, lyme. After the blood test, I'll probably start him on a Mag supplement. But I want to get a reading first. After that, we'll probably try a food elimination diet. I just posted some questions about that as well. Thanks again Alan
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My wife and I are considering starting a food elimination diet with our 10 year old son. Up until about two weeks ago his tics were minor. They are now bothering him quite a bit. He also has mild ADHD and often complains about stomach aches and headaches. And has environmental allergies (cats, dogs, dust mites, feathers, grass, others). Recent scratch tests did not show any food allergies. RAST tests from a couple of years ago, also did not show food allergies. I'm not sure if it makes more sense to start from scratch and build a diet or just subtract some likely offenders (he eats a lot of wheat) from his existing diet. I was thinking that we'd start by subtracting wheat products for 2-3 weeks and see what happens. Then perhaps dairy and see what happens, so on and so forth. But if there are say three foods giving him trouble and we subtract them one at a time, we may not see a benefit. On the other hand, we could put him on a very restricted diet for a few weeks. If we don't see an improvement than maybe food isn't part of the problem. If we do see improvement than we would slowly add back items. This approach though will be much more difficult to implement. He will be much more resistant. I am trying to downplay his tics with him. I don't want him to know how concerned I am. But a dramatic change in his diet would send a clear message. But my biggest question about starting from a restricted diet and building up is what do we in fact feed him and how do make sure he is getting proper nutrition? Any suggestions appreciated Thanks Alan
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A friend of mine told me that there is a blood test for food allergies. My son has already had scratch tests for a bout a dozen food allergies. But I was told that this blood test is much more comprehensive and would test for many more foods. Has anybody tried this? Any success finding tic triggers? Thanks Alan
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My son's tics got much worse last week. They have since gotten better, although they are still worse than they had been prior to the outbreak. I asked his ped neurologist about medication. He initially suggested .5 mg guanfacine every night before bedtime. I then asked if there was anything that I could just give my son on an as needed basis. He then suggested Clonazapam. He said we'd start at 0.25 mg and give it to him in the morning. I filled the prescription, but since then tics have lessened. So I have not given him any. I searched this forum to read about Clonazapam. I seems like the "taken as needed approach" is not the norm. Also, it seems that giving it to him in the morning is unusual. I asked the nurse about giving it to him in the morning. She agreed that there is the risk that he will be tired at school. Has anybody tried Clonazapam on an "as needed basis"? Any thoughts on this approach? Thanks Alan
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Son's tics exploding, trying to figure out what to do
Bigal replied to Bigal's topic in Tourette Syndrome and Tics
Yes mythree, that is what the ped neurologist told me to do. Give it to him when there is a flare-up. It may make him tired. That's a possible side effect. Also, it is difficult to know when to get off of it because you really don't know when he is waning. -
Son's tics exploding, trying to figure out what to do
Bigal replied to Bigal's topic in Tourette Syndrome and Tics
Hi Mythree I don't know what to say. It's got to be very hard to hear that from your daughter. as for the medication, I just don't put that much weight in lists of possible side-effects. It seems like every pharmaceutical commercial has a huge list for every medicine. I trust my son's pediatrician. She agrees with the neurologist that it is safe. We are starting at a very low dose. And I will only be giving to him when he really needs it. If there is an adverse reaction, we'll stop. Best Alan -
Son's tics exploding, trying to figure out what to do
Bigal replied to Bigal's topic in Tourette Syndrome and Tics
Hi Mythree How old is your daughter? Personally, I'm pretty bummmed about this. I had hoped it wouldn't get this bad. And I was a bit premature in thinking they were improving today. They are a little better than the last few days, but not much. The thing is, they were fine in the morning. Then just b4 he left for school, I saw a few tics. And apparently they continued to get worse. Does your daughter have fewer tics in the morning? I wonder what I can glean from that. For one thing, I'm going to skip his morning routine of fish oil, probiotic and vitamin and see what happens. I too don't know what to do about the fish oil. We started giving it to him about 1.5 years ago and it really helped. Do I switch to flax seed oil? Increase the amount of fish oil? Vitamin D is another mystery. 10 months ago or so, he started ticcing more when we gave a multi with 400 iu. But maybe it was a coincidence. Are you considering the Bontech products? I am, but I'm confused about them. It's overwhelming. I wish a could find a doctor that would direct me through this. I read somewhere that TS patients have a greater incidence of Migraines. That may explain the headaches. My son was complaining of headaches awhile back. We suspected migraines. I've got a script filled for Clonazepam. We are starting at 0.25 mg as needed. My doctor assures me that it's safe and has been around quite awhile. But it can make him drowsy. I may give it to him tomorrow, but first I want to see what happens when he doesn't have his morning vitamin/supplements. I wish you and your daughter the best. -
Son's tics exploding, trying to figure out what to do
Bigal replied to Bigal's topic in Tourette Syndrome and Tics
Hi Chemar Yes, maybe the probiotic was the trigger. But I'm not sure because he'd been taking this brand for quite some time. My wife bought the wrong brand a few weeks ago. We used it up and then went back to this one. Ok here goes, it contains; 750 Million Organisms of bifidobacterium lactis, lactobacillus acidophilus, lactobacillus salivarius, and lactobacillus plantarum. other ingredienta: xylitol, sorbitol, cellulose, Stearic acid (vegetable source), Natural berry flavors, malic acid, beet powder, magnesium stearate (vegetable source), Silica and FOS (fructooligosaccharides) -
Son's tics exploding, trying to figure out what to do
Bigal replied to Bigal's topic in Tourette Syndrome and Tics
Ok, so morning comes and it's a new day. Maybe his tic explosion is over. Very modest tics this morning. A couple of head shakes and a blink is all I noticed. So if in fact this episode is over, does that negate the need for the strep test? I'm also wondering if there is something in the morning routine that may be a tic protagonist. For the first half of the morning, I noticed no tics at all. It was only just before he left for school that I noticed a little. So I saw no tics at all until he had: multivitamin, probiotic, a couple of packaged baby carrots, pancakes with 100% maple syrup, fishoil. Those are all part of his regular routine. He has had those exact things probably 2-3 days a week for the last two years. Although, we just switched back to this particular probiotic last week about the time the tics episode started. -
Son's tics exploding, trying to figure out what to do
Bigal replied to Bigal's topic in Tourette Syndrome and Tics
This may be a stupid question, but since he hasn't complained of a sore throat, does that mean he doesn't have strep. Put another way, can he have the virus and note have a sore throat?