Cj60

Hi, It's kind of hard not to "overreact", no? Tics can cause a parent great concern. Usually when an "overreaction" happens, you do something to try and help things. And that's a good thing. Hopefully you can get to the dr. who has PANDAS experience and things will get worked out sooner rather than later. Good luck! Chris

We have been fortunate enough not to have to do a true elimination diet. We eliminated some things on our own, starting with dairy, which is a common offender, and one which we were already suspicious of due to stomach aches after ice cream, etc. Thanks to this forum we learned how offensive artificail flavors and colors and other chemical additives can be, so we took them right out. Then we went to the environmental practice which identified several other food sensitivities. Armed with the information, we eliminated a couple of more things and put together a rotation diet to manage the foods that were not an issue. No sugar coating it: it's bloody tough to do at the beginning. It's a serious life change for all involved. And a child might complain about it (ours has done so only minimally) but it's those who purchase the food and prepare the meals that bear the brunt of the burden. (My wife is truly amazing in this regard.) But @ 1.5 yrs. after we started, it's now just part of what we do. And there's no going back. I'm convinced that the number one factor in helping manage my son's tics has been diet, coupled with a couple of supplements (the principal one being a potent, comprehensive, hypoallergenic multivitamin). Chris

Hi Alan, I'm glad to hear your son's tics are lessening a little. When we tested our son for food sensitivities around 1.5 yrs. ago, he was given a whole battery of pin pricks. It took two visits, since his arms weren't big enough for all the tests. Twelve tests seems not to be a real comprehensive number of tests, but I'm not sure how the scratch test works. The dr. who tested our son was of the mind that the skin prick method was a better method than the blood test, stating (if I recall correctly) that it could distinguish between different levels of reactions to an offending food or other allergen, whereas the blood test wasn't as effective in that regard. That being said, I've read here that the blood test is a highly sensitive test. Our ped. (very mainstream) would have given us the blood test, but we opted to go to a environmental practice that had lots of experience not only in testing for the allergens, but also in prividing support concerning how to deal with the sensitivities that were identified though the tests. Good luck, Chris

I'm sure you're aware of this, but I thought I'd mention it just in case. Often, combined ingredients cause no problem, but some times one of the ingredients can be a trigger. My son did not tolerate taurine. - Chris

Hello, I was waiting to see if anyone had any info on your good question. I remember wondering the same thing when I first started looking into natural treatments. But I recall emailing Bonnie directly and getting a very helpful reply. Good luck! Chris

Hi Pat, We're in PA. I got an exemption for my daughter before she entered kindergarten earlier this year. Her ped. was not cooperative in the slightest; even made my wife sign a waiver. But the school nurse was fine with it. She didn't even ask a single question. Just took the form and said ok. There really is no official form for requestiong the exemption here in PA, but we found something that served the purpose at the website of the environmental medicine practice I take my son to. Chris

Alan, the tests for inhalent allergies is on our list of things to do, so I'm always interested to hear what experiences others have had with shots. It seems logical to me that if your son is reactive to a certain allergen, that the shot to build tolerance could produce a reaction. Good luck with the next round. Chris

Hi Kevin, We identified Cliff bars--always had them in the car for healthy snacks--as a problem food shortly after we started dealing with this. It's hard to explain, because the ingredients are organic and natural, from what I recall. But they definitely did something. Maybe it's the pure quantity of different things that causes the problem. Chris

60 minutes did a nice piece on this last night. No mention of side effects other than obesity, but when when you see how they make some of this stuff, you feel good about keeping it out of your kids (and yourself). http://www.cbsnews.com/video/watch/?id=7389754n&tag=cbsnewsMainColumnArea.2

Hi Alan, We had a rise in tics last week too. Couldn't really say why. When did your son have the first shot? I'm interested in hearing how they go. Chris

Anyone see that cute little commercial idealizing "corn sugar" as a healthy, all natural food? Just read this blurb about the ad campaign. http://www.businessweek.com/news/2011-11-22/corn-syrup-makers-misleading-consumers-sugar-refiners-say.html - Chris

Hello, We started supplementing the GS after seeing a rise in our son's tics from mid July through mid September. That rise has since returned to the levels we were accustomed to seeing. The wane could be due to seasonal waxing and waning. This was the second year that we saw a noticeable rise in mid summer. Last year, things settled significantly around November, after a couple of months of diet modifications and magnesium supplementation. The most noteworthy decrease last year, however, came after we added the Kirkmans multi. This year, the wane came after we added the GS to the now GS-less Kirkman supplement. I should note that I *think* that my son is benefitting from the GS becuase it is providing his body with needed sulfate, something I've kept an eye on over the past year. Kirkmans' site states "Glucosamine Sulfate Capsules are a convenient and efficient way of adding sulfate to the diet. The benefits of sulfate appear to be linked to an enzyme system known as phenol sulfotransferase (PST). Sulfate deficiency may explain why some individuals are sensitive to a variety of phenol-containing foods, such as apples, grapes, berries, onions, potatoes, chocolate, food colorings, and some herbs and spices." While this list is abbreviated, it contains several items which have been determined, either through testing or observation, to adversely affect my son. That's why I was comfortable supplementing the GS back into his multi. He is 75 lbs. and I mix the contents of a 500 mg capsule into his vitamin each morning. The earlier form of the Kirkmans Spectrum Complete contained 200 mg/serving of GS. While he seldom takes epsom salt baths these days, I've noticed no ill effects when he does. But I'm not at all informed regarding the potential side effects of too much suflate. I'd check with a qualified professional on that one. Finally, googling PST should lead to some helpful information concerning sulfates. Hope this helps, Chris

Hello, The book is a great start. The most important thing for us after the book (and reading up on this website) was to get to a practice that thought outside the box. Unless you have found an exceptional neurologist or have an exceptional pediatrician (I say exceptional in the sense that those neurologists and pediatricians who will point you toward alternative approaches in these cases are truly the exceptions), don't put too much stock into what you learn from them. Through allergy tests and others like it we got valuable information that helped us modify our son's diet, we also started supplementing magnesium and a potent multivitamin and a couple of other things that we came upon over the course of the past year or so. Consider also the possibility of infection related issues like strep and Lyme, and toxic molds, all of which could be playing a role with your child. Congratulations for getting started, and good luck. Chris

Hello, Did your NAET run any tests (urine, neurotransmitter, allergy, etc.) What do you mean when you say his neurotransmitters were weak? The neurotransmitter test we had run on our son indicated the exact levels of a number of neurotransmitters. I would recommend finding an experienced environmental doctor who is able and willing to run a number of appropriate tests and who will look at the results of those tests to start identifying underlying issues, and treating them appropriately. Good luck, Chris

Hi Sarah, Sorry to hear your son and you are having to go through this. From a year or so of being on this board with a son who has some tic issues, and reading posts and advice for children who have had symptoms similar to those of your son, I'd recommend that you also post on the PANDAS/PITAND board. There may be some realationship between his suddenly different behavior and some sort of infection (strep or other). Was he or someone close to him sick with strep recently? Others will also likely suggest that you keep Lyme on your radar. I'd recommend that any visit to a dr. should involve good discussions of these two possibilities. If the possibilities are not taken seriously, look for a dr. who will take them seriously. Good luck, Chris

Amy, are you careful with diet? http://www.oneaddplace.com/add-diet.php - Chris

Really interesting story! Thanks for posting! I'd keep my eye on the milk (and all dairy, for that matter)!

Hi Andrea, Over the course of the past year I have read positive comments regarding several multis. I pay attention to the Kirkmans (not so much the others) since that's the one I purchase. But that may change some day, so I appreciate it when people share their feedback. I checked out your website; it's nice to read about how well you all manage things! Continued success! Chris

It's actually a powder (Jarrow, purchased through iherb : )

My son manifests some minor ocd behaviors on ocassion; they may well be there all the time, but I only notice when it's most obvious. And this is usually if we have not stayed on target with diet and supplements. When I do notice, I add inositol (1/2 to 1 tsp.) to his multi (which already contains some inositol). I believe it helps. We'll use some teas, too, which I believe also benefit. I think Chemar lists some beneficial teas in the link regarding treatments she has used, at the bottom of all her posts. I believe there may be some infection connection to ocd, as well, if you haven't looked into that yet. I feel for you and your daughter; I hope things calm down quickly. Chris

Hi Lisa! I'm hoping my comments, based on observations over the course of the past year, don't have anyone thinking I'm acting on much more than a hunch here. What I know is that there are a number of sulfotransferase enzymes in our bodies that need sulfates to do their job. A commonly mentioned one is the phenol sulfotransferase enzyme, which helps rid the body of phenols. I read some time ago that some common symptoms to a build up of phenols are red ears (which I had noticed occasionally with my son for several years and always wondered what was up with that) and dark circles under the eyes (another thing that I had noticed, although he is fair and I'm not sure that the circles are all that dark; dark circles are sometimes associated with dairy allergies, too). His allergy tests coupled with our dietary observations also identified sensitivities to some high phenol foods. Along with these things, the fact that epsom salt (magnesium sulfate) baths were always so beneficial to him had me wondering. We all know the benefit of mg, but the sulfate is in there, too. Finally, when I decided to start using the Kirkman multi, it had a blurb on the benefit of the glucosamine sulfate. So one of my thoughts following the success of the multi was that it may have had something to do with the delivery of sulfate. When that ingredient was taken out, and we noticed a rise in tics, I figured at least I'd try supplementing it back in. Kirkman's product page states that "glucosamine sulfate offers an effective method of sulfation. Absorbability has been clinically proven, which is not the case with Epsom salt baths or compounded transdermal preparations. One study found that up to 98% of orally administered glucosamine sulfate is absorbed, while another study showed that about 90% is absorbed via oral administration." I should note that the formulation of Spectrum Complete II, while lacking the gs of the older formula, does seem to attempt to make up for the loss of sulfate by adding in zinc sulfate... Well, another long answer to a quick question... Chris p.s. Yes, we've been giving the whole 500 mg. daily

Sorry for the late response! We've been w/o electricity, water, phone, and cable (= internet) since Wed. An absoute flooded mess here in NE PA! My son is @ 73 lbs. and now gets 1.5 teaspoons (the dosage goes by weight) of the hypoallergenic non-flavored powder, disolved first in a little water and then mixed in with oj. I've tasted it; not really gritty, but it is a vitamin drink. My son would rather not have to drink it every morning. But then again, if I made him eat ice cream every morning he'd protest eventually. I've always ordered directly from Kirkman labs. Chris

Multivitamin information is ccasionally shared here, so I thought I'd provide some news regarding the multi we have been using for almost a year. It's Spectrum Complete (powder, hypoallergenic) by Kirkman labs. Within a couple of weeks of starting it as a daily supplement, we noticed its positive affects. A few months ago, Kirkman modified Spectrum Complete, and now calls it Spectrum Complete II. When I made a call to inquire about the modifications to the formula, I was told that one of the ingredients (glucosamine sulfate) was eliminated. So I purchased a flavored original version that still had the GS in it, then, when I couldn't get that, went with the Spectrum Complete II. It may be pure coincidence, since many on this board referenced an eleveation in tics during the second half of the summer, but we noticed it too. I was just a little suspicious about the missing ingredient (GS) in the newer Spectrum Complete formula, so decided to try supplementing that ingredient on my own. Kirkman sells it in 500 mg doses (the orginal dose on SC I was 200 mg). We've been using it for around two weeks. Again, might be coincidence, but we notice a positive effect. Kirkman describes glucosamine sulfate as an excellent delivery system of sulfates. Our son seems to benefit from added sulfates. So we'll keep up with the Spectrum Complete II powder, and throw in the GS on top. - Chris

We won't be getting flu shots for our kids ever again. And we got an exemption for our daughter's scheduled vaccinations as she enters kindergarten. No reason to risk compromising an otherwise healthy immune system. - Chris

Hi Megan, We have had a noticeable rise here, too. Trying to explain it in different ways, but really, we're like you, doing pretty much the same things. Our multi has gone without an ingredient which was previously included in its formula (glucosamine sulfate), so I was thinking that might have something to do with it. I ordered some gs separately and have added it to his multi both yesterday and today. But this wouldn't relate to you, since you're using a different multi. I was thinking seasonal inhalents might have something to do with it, and am about to schedule allergy tests for those that are most common around here. Maybe school? We started last week. I hope you'll (we'll) see things calm down soon. Thanks for sharing; funny how things have been active for several people on the board over the past few weeks. Take care! Chris