Cj60

Hi, I think a very important step is getting good guideance from someone who recognizes that things like diet affect some kids' brain neurology, so finding a dr. who is willing to guide you through what kinds of tests there are to help you identify possible problems will be really helpful (especially considering that many drs. will simply diagnose and prescribe drugs without looking for underlying causes). Without good help, it's very overwhelming trying to piece together a plan of action. There are links above on this forum that can point you toward the kinds of tests (blood, allergy, urine, yeast, etc.) you might consider asking a dr. about. Another common question that is asked when people first post on this forum is whether or not they are able to connect the onset or waxing of tics to any infections, like strep. Sometimes tics are related to this. Good luck! Chris

Rick, I'm sorry to hear you've put so much into the diet and even the BonTech, without the results. Even though age may be a factor, six months would seem to be enough time to at least start to notice things coming into balance. I can imagine your frustration. Have you consulted with an environmental (or other less traditional) dr.? It ended up being a coincidence that that's the kind of dr. we consulted, but some of the things we've done, following his advice, have been very helpful and informative. We had urine analyses run to evaluate neurological transmitters and other systems that can adversely effect neurology. If you were to find a dr. able to recognize the usefulness of tests similar to these, maybe you'd find some helpful direction. Maybe you would learn something about the BonTech supplements; maybe they contain something that antagonizes your particular neurology, or lack something you could use. I'm not sure a traditional medical consultant, if that's the kind you're thinking of consulting, would be able to even look in directions like these. The three from whom I received feedback prior to exploring other avenues certainly were unable to do so. I'm sorry for yor frustration. From even my short time on this board, I know that all the answers aren't always out there. And that it's hard to keep trying. I wish you good luck as you work forward. Chris

Hi, We have been supplementing our son, 9, with mg (Natrual Calm) for around 7 months. It is one of our mainstay supplements, and we consider it to be effective. We give 1 tsp. nightly, and recently I've been giving 1/4 tsp in the a.m. along with his multi. But we do other things along with the mg supplementation. I'm not sure that the mg by itself would have had the positive effects we have noticed when combining it with 1) a clean diet, and 2) a good multivitamin. I don't have my neurotransmitter info handy, but if I recall correctly, taurine aids in the production of GABA, an important inhibitory neurotransmitter, so it's seems a perfect combination with mg for people with exitatory neurotransmitter issues. I haven't tried it yet, but I'm aware of it. Just fyi, I'm listing two of Bonnie Grimaldi's links below. One is information on Mag. Taurate; the other is a note on what Bonnie considers to be important dietary information, just as a kind of intro to very important role of diet and tics. If you search this forum, you'll find loads of information on diet related issues. Testing for food related allergies is something I would highly recommend. Good luck, Chris http://bonniegr.com/ts-plus-magtaurate.html (check the ingredient brochure for info) http://bonniegr.com/ts-plus.html

Just read this on cnn.com. A big full moon is coming! http://www.cnn.com/2011/US/03/18/nasa.moon/index.html?hpt=C2

Hi, Guy123 just posted what seems to be some useful information reagrding commonly prescribed tic medications, including some of their side effects. You might want to give that a a read. But if you suspect PANDAS, I would read and chat over on the PANDAS / PITANDS forum before opting for the meds you mention, since it seems other treatments might be more appropriate. Good luck with your research, Chris

Hi Malke, It sounds like you've probably done far more than I have in addressing your child's tics. The only thing I don't see you reference is a good, heavy duty, clean multivitamin. Is this a regular part of your daughter's supplementation? Considering you're on such a rigorous diet, I'd even be hesitant to suggest that some new or unusual food has brought about the sudden tics. But that is always a possiblity. Or maybe it's some other type of allergen. Mold? It's almost spring; maybe something has just presented itself into your daughter's environment over the past couple of weeks? Has she been tested for non-food allergens? I hope your brainstorming yields some direction for you. Good luck. Chris

Hi, The dr. we see was quite the opposite with us. In the heat of things, I had read stuff and wanted to jump right into trying supps I thought might have a positive effect with our son. But our dr. was low and slow, for which I am now grateful. I've kind of gotten into a pattern regarding adding things and modifying things. It's hard to track the effects, both positive and negative, of supps and diet if it's not done systematically. I can imagine that with all those changes in supps, something might not be agreeing with your son's neurological system. Has your new dr. explained all the hows and whys and whats regarding the things you're using? I'm hoping that after all you've been doing you start seeing some pieces fall into place. Chris

Hi Dut, I recall looking into No-Fenol, but didn't go through with using it, mainly because it had to be taken with every meal. But I may look into it again at some point down the road, so please keep us posted. I thought I recalled that on the website where is was being sold, there was contact information for asking such questions. I'd start there, and then maybe ask his ped. Chris p.s. Have you implemented a good multivitamin? Sometimes you'll find ingredients in a good multi that work at some of the same things the No-Fenol works at. Check out the the spectrum complete info at http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@149@Product_Group_ID@1.aspx The description references the phenol sulfotransferase system.

Hi Mar, Hopefully our local expert will see your post and provide you with some more detailed information. But I can channel one post in which she (Chemar) states that "steroids increase dopamine which in turn increases tics in TS." The case might be different if tics aren't caused by TS... Chris

Hi Megan, There was a time that a question like that would get a 10 paragraph response from me Things have been pretty stable here. Last week did have a couple of days of slightly elevated tic activity in the evenings, which is really the only time I observe him other than weekends. I'm thinking that it was possibly related to a new cereal that hasn't been part of his normal breakfast foods. Even though the ingredients appear to be mostly benign, the first ingredient is cornmeal, and that's one I try to watch for. Funny though, because other cereals he eats list cornmeal as an ingredient--albeit not the first one--and they haven't made my X-list. Maybe it's time to double up my cornmeal lookout efforts. I'm also recognizing the possible moon thing. I heard on the radio that in Native American loor the February-ish full moon (I'd say the last before Spring but I see that March has one that comes just before Spring hits officially) is spiritually significant, being that hunting is about at its toughest and it seems a good time for a gathering to ponder life's difficulties in an attempt to remedy them. So who kows? Maybe February's moon packs a whallop. I also had a period of several weeks where, due to unusual circumstances, perhaps along with my easing up a little on some dairy foods (i.e., pizza), his diet went a tad bit off. But I've cracked back down. I'll allow him pizza once a month. (If anyone is reading, cheeses are particularly potent dairy-wise). And I'm becoming curious to see how the summer will play out. His tics became noticeable around a year ago, but it wasn't until the summer that they became a concern. We're going to do our best to keep him occupied in order to avoid boredom and tedium (two of my favorite summer time activities). So we'll see what we can come up with. Other than that, we're diligent about the usual things (supps and diet) and very grateful that they have produced the results that they have. Thanks for asking!

Hi Megan, A really nice full moon presented itself to us over the past week. Have you ever noticed there to be a waxing associated with that? I've never had any major moon related revelations, but it's always in the back of my mind. Continued good luck with all your efforts! Chris

Nola, I'd check the ingredients on the strawberry flavored omega 3 sup for artificials 1) I forget whether or not you have had your son tested for intolerances or modified his diet at all? 2) You don't mention a good multi vitamin. There's been a lot posted here about how it is a key element to supplementation for children with ts related tics. We've had good results with these two important steps. Chris

Multi vitamins are a fairly common topic on the forum. If you do a search you'll find lots of posts. For our 9 yr. old, we use a fairly "rich" (potent) multi (Kirkman's Specturm Complete) that's in powder form. With a 4 yr. old I'd guess you'd want to run the ingredients by your pediatrician to try and come up with an appropriate serving size. - Chris

Hi Lynn, We did the skin prick tests (the preferable means of allergy testing for our environmental dr.). Two visits a couple of weeks apart to run through the foods. Didn't stress out my son or make him tic more. He actually liked the testing if you can believe it. It was a new (albeit freaky) experience, and he liked the attention he got when we all looked at his arms and told him we couldn't believe he went through that. Hope it's not too bad for son! Please let us know what you learn. Chris

Hi Bonnie, I feel for you. My son is 9; I know those tough adolescent/teen years are coming, and I'm trying to appreciate every second of his boyish innocence now. There was a scarey bullying event featured in a newspaper I read yesterday; I know that tougher times are around the corner. Your son sounds like he's a sweet kid; I guess I would focus on that, support him as much as possible at home, let him know that it's a good thing to be sweet, and keep him away from places where not-so-sweet kids lurk. I know it's easier to say than to do. I'm sure I'll be checking in with you a couple of years down the road to get your advice on what you did I don't know if you checked out the "Finding Medical Help" link at the top of this forum. It's there that I found the AAEM link and from there a dr. that has been very helpful. Hopefully you'll find a lead and locate someone who can assist you. Hang in there! Chris

Hi Lselie, We eliminated dairy as a first step in the modification of our son's diet. We're around 6 months in. I don't think that elimiating it alone without making other changes (like eliminating a couple of other things that we keep away from him, in addition to rotating several other things to make sure they don't end up being intolerance, and adding a few supplements) would have had the effect that combining the elimination with the supplementation has had. But we did notice a difference within a few weeks or so of changing his diet, and I'm sure that eliminating dairy had something to do with the overall improvement. Once in a great while he gets a little cheese either inadvertently or as a special treat, but only after we were very strict with it for a long time. Regarding the kefir, We use a soy yogurt (my son is ok with soy) in combination with a probiotic, but not as frequently as we were doing for a while. But I'm sure they're both important for the health of his digestive track. It's just tricky remembering to get it into him... Regardelss of your choice, make sure you check ingredients carefully for artificials and preservatives, which could easily outweigh the benefits of the kefir... Good luck! Chris

I'm guessing by now you've gotten some good news from the naturopath. Don't be discouraged by the other one! Many drs. simply do not know about these things. They aren't trained for it and just go by what some book tells them (which in our case, with two highly experienced neurologists, was "meds or nothing"). I don't even want to recall the discouraging conversation we had with one; but I do know that feeling of "well, thanks for nothing at all!!!!" And I know what a difference the modified diet and supplements are making with our son. If I were to stop stop either, it would be a matter of days (if not less) before I'd see the adverse effects... I think you're fortunate to have found the gluten trigger so quickly. I encourage you not to dismiss it, and keep vigilant for others. Chris

I'd just like to chime in that you all are amazing parents. My hat's off to you all! The extra worry and the extra work you all go through really make things tough, but you don't back down. Not everyone can say that! Rest assured that, in the long run, your kids are going to be well off for all of this. I do my best to keep in mind that, even though it seems like others don't have their own struggles because we don't notice them, no one gets through with a free pass, so to speak. Things get tough on all of us at one point or another. The older I get the more aware of this I become, and of the fact that places like this with people like you are so important! Chris

Hi Ladyd; We started with a ped. neurologist. It was a waste of time. But others have mentioned good experiences with p.n.s, espceically those who allow themselves to think a little outside the box. It's the thinking outside the box feature that I would recommend you look for. Our first line of action was diet. It's best to do this with some support. We found an environmental doctor's practice through a link on this website, and they started by conducting allergy testing (the skin prick kind) to identify food sensitivities. Ours were dairy (which we knew -- if your child drinks a lot milk and eats a lot of cheese, that would be something I'd look at very carefully) and chocolate (which carob has substituted quite nicely). We also stay away from all artificials and preservatives. Not easy, but (almost) second nature by now. In addition, after some trial and error, we supplement daily with magnesium (Natural Calm) and a potent multivitamin (Kirkman's Specrtum Complete powder). This keeps tics at a mostly benign level for our son. I dabble with a couple of other things, including Vit D3, and keep my eyes open to other things, but the top two are the mg and the multi. I would recommend that you consult with your child's pediatrician about these two items (they are harmless in most cases) and start them as you think about how to check food sensitivities and as you consider the important things Chemar mentions in her post. Good luck, Chris

I used Animal Parade for a while, with no noticeable benefit, and perhaps some adverse effects. What I do know is that the change to Kirkman Spectrum Complete made a very noticeable difference in my son's tics. Perhpas because it contains some ingredients that correspond to his particular needs (this is something I suspect). Or perhaps because of the potent combination of a lot of the important vitamins and minerals. Whatever the case, I can't recommend a good multivitamin like it or like Megan's Progrsessive strongly enough. Your son weighs less than my son, so I'd work up little by little, keeping and eye on the stools, which may get too loose with too much mg (especially if you do start with a potent multivitamin.) Our son out started with loose stools, so we played around with doses for a while. Things seem ok in that regard now. Hang in there, and happy b-day to your son! Chris

Unless your son is getting mg in other forms, I'd try upping the NC over the course of a week to 1 tsp in the a.m. and 1 tsp in the p.m. and see how he tolerates it. Are you giving him a good multivitamin daily?

There is also the sulfate side to epsom salt, which can also be helpful to some kids.

Hi BikeWP, I think you'll find Megan's thread very informative on several notes, especially the multivitamin. It's worth taking a few minutes to read through: http://www.latitudes.org/forums/index.php?showtopic=10513&hl=vitamin&st=0 And here's a good thread for the omegas also worth reading; omegas can be tricky since different sources of them seem to have different effects on different kids: http://www.latitudes.org/forums/index.php?showtopic=10117&st=0&p=85069&hl=omega&fromsearch=1entry85069 I'm not sure if Bonnie Grimaldi's TSPlus vitamins are mentioned in the multivitamin link, but that's another one to consider. We think the potent multivitamin we use (Kirkman's Spectrum Complete) probably provides enough B6, so we don't supplement that on top of the multi. Searching on the two topics will bring you to lots of links on the fora (as a sometimes Latin teacher, I can't write 'forums' Good luck! Chris Oh... regarding the magnesium. We use one named Natural Calm in the powder form. 1 teaspoon nightly. We used to give one in the morning too, but since starting his multi a couple of months ago, which has roughly the same amount of mg in a single dose as a dose of the Natural Calm, we stopped the morning dose of NC.

Hoping you take good care, and that things are ok real soon, Cheri. It's good to know you're still keeping an eye on us. - Chris

Thanks Chris...there have been increases again the last few days but he did have some foods with traces of dairy and soy...big no no's for him. Waiting them out and hoping he will again decrease to minimal before back to school. Too many late nights, too many unknown triggers and a messed up routine and inconsistent times with multi and magnesium. He seems to need to take his multi very consistently breakfast and dinner and with all the craziness has not been as routine. Will need to be far more diligent again now that routine is reestablished. How are things with your son? Megan Hi Megan! We're doing well on our end. Tics are to a minimum. The holidays (major for him, including Chanukah, Christmas, New Years and birthday spread out over three weeks) brought with them many exceptions. But we were ready to make them and see what happened, since it's been around 5 months since we started with the careful diet and supplements. We've been super strict with the dairy all along until recently, when we've let him indulge in his favorites, including rice pudding, at Indian restuarants on a few occasions. His birthday was Monday (he's 9 now, so unbelievable...) and we made him some pizza, which contains two things on our list that we decided to allow: tomato and cheese. No obvious reactions, but I have noticed some intermittent minor waxing over the holiday break and will be keeping a closer eye on him now that the regular routine can start again. I've recently added a supplement (molybdenum) to his multi (am) and his Natural Calm (pm). I thought at first there might have been something to it, but I'm not so sure at this point. I've given him a few days without it and will try it again in a couple more days before coming to a verdict on it. And at his last dr. visit several weeks ago, when we went over some tests he took a couple of months ago, it was decided to start him on a caprylic acid supplement called Caproyl, to address a higher than normal level of some intestinal undesireable--don't have my notes handy at the moment. I've only recently gotten around to starting it, and will give it for around three months, so it will be a while before we notice if it has any positive effect. We're all in a much better place five or so months in to it than we were before we modified our son's diet and started looking to supplements. Something to be very grateful for as we start the new year! Take care, Chris