Cj60

Megan, I'm glad you've made it through the cold and the holidays, and that family is supporting you. I'd acknowledge the importance of "baby steps," but I know how differently different people perceive the do's and don'ts regarding treating kids, so having anyone support your efforts is big, especially when it's family! I'm very lucky in that regard too! Thanks for the well wishes, and hope you have a great start to your new year. - Chris

Hi Graceer, Don't overlook a good multivitamin! I'd start asap. Forum members have mentioned several brands which have had a definite positive result, including a brand named Progressive, and another named Spectrum Complete (by Kirkman). Good luck, Chris

Hello Amy, I'm not sure I have much to offer except to say that many children do have transient (as opposed to chronic) motor tics at some point during childhood. So let's hope that that's the case with your daughter. I know also that tics can wax and wane, so if you don't notice them so much one day but do notice them the next, that would not be unexpected. I've learned since being on this forum that if one notices a sudden and dramatic onset of tic behaviors, that it is a good idea to try and recall whether or not there was an illness (like a strep throat) that coincided with the onset. If so, the infection might be playing a role. If you notice that the tics are continuing and bothering your daughter, and want to try some things to lessen them, you're in the right place - lots and lots of information here! Starting points seem always be diet and basic supplements. The diet issue is the tough one, and usually starts with eliminating all artificials, preservatives and other unhealthy additives, and moving on from there. The supplements usually include magnesium (e.g., Natural Calm) and a potent multivitamin. Sending well wishes to you and your daughter! Chris

Hi Kat, One of the first things I read online--not here--regarding tics was to eliminate the food or foods that your child eats most. This of course is not a very scientific or practical way to proceed. But behind it lies the reality that if a child eats a particular food a lot, and that food contains something that the child's body can't tolerate, the child will eventually start to show the adverse affects related to the consumption of that food. So maybe your daughter's drinking of sweetended drinks is a link that you can pay close attention to. First thing to get rid of, as I'm sure you've read is the hfcs. But there might be something else in the drinks that causes a problem. Does a particular flavor cause more problems than another? Many fruits are high in salicylates, which, like hfcs, can aggravate a child's system, so keeping an eye on reactions to different fruits and fruit flavors is probably a good idea. I've used honey fairly regularly in recent months, but have started to be less liberal with it, since it is also realtively high in salicylates. Good luck with things! Chris

Hi Megan, Since reading is focused on a lot more in 3rd grade than it was in 2nd, we noticed a definite increase in ticcing that this year's nightly reading assignments brought. Over the months though, as his reading level has risen, the tension seems to have diminished, along with the tics. He finds himself a spot that's comfortable and settles in. He does a little ticcing at first but then it tends to go away. He has a little sister too. He doesn't seem too interested in reading to her, so you're doing something right in that regard I guess if he did, the added stress might bring on some tics. How does your son do when reading silently? Wish I had something concrete to offer. Lighting has been mentioned from time to time here, as I'm sure you've seen, so maybe that's something to consider. Good luck! Chris

Sounds like you've got yourself a plan. I'm glad that your're keeping diet on your radar. I just figure that once a diet is as clean as possible, even if you still aren't sure what's contributing to a tic or a behavior, at least you know what's not causing them. And the shorter the list to keep an eye on, the better chance you have of identifying triggers. We've been at this around five months now, and we still have daily wonderings about this food item or that food item. For what it's worth, with the exception of a few of the prime instigators (hfcs, for example), it took us at least a couple of months before we were confident that dietary modifications had begun to have an overall positive effect. And we're hoping that over time they will continue to do so. Good luck with your efforts, Chris

Megan, thanks for the update. Continued success! - Chris

Our probiotic capsule: Ortho Biotic (Ortho Molecular Products). Soy yogurt: Whole Soy & Co.

Hi Kat, When we first met a dr. regarding our son's tics, a probiotic was a quick suggestion. He recommended a capsule form which we could open and mix into something. When he started it I thought I noticed an increase in tics, so I laid off them pretty quickly. But I may very well have been imagining things (maybe a case of the "stare at something long enough and you'll see what you want to see" thing?). Within the past month, however, we have begun to administer it a couple of time a week, with no adverse effect, and will probably increase that to every day based on some recent test results (an elevated level of bacteria in intestinal track). Since my son doesn't take any dairy, we give the probiotic to him in a soy yogurt, which is ok for him. So he gets a good dose of probiotics with the yogurt/capsule combination. I can't remember the exact name of the soy yogurt we use, but they are not all equal; some have more things in them than need to be there. Be sure whatever probiotic you use is as "clean" as possible (I can't imagine that a cvs brand does not having a fair amount of some unnecessary artificials in it.) Good luck Chris

Hi everyone, We met with my son's dr. yesterday to go over the results of a test we had run. It was called an "optimal nutrition evaluation" by Genova Diagnostics (I think formerly known as Great Smokies Diagnostics). We had it run because I had read about the adverse effects of an inhibited methylation pathway. As it turns out, his methylation works just fine. The only marker that came back as a concern was the one for dhppa, which was high. Our dr. recommended Caproyl, a caprylic acid supplement. Anyone with any experience with this supplement meant to combat intestinal bacteria? My concern is with possible herxing. Thanks Chris

We have found the multi referred to here a little while ago by Lisa ("mythree") (Kirkman Spectrum Complete powder) to be extremely beneficial. My guess is that it is because of some specific ingredients it contains that our son benefits from. But it could simply be that it has high doses of a lot of things that kids in his shoes tend to benefit from... Chris

Hi Julie, Not that there aren't lots of hard spots in dealing with this, but I think you are at the hardest spot right now. I do remember the helpless spinning feeling; not knowing exactly how or where to begin. It sounds like you have begun, and you've gotten yourself to the best possible place (this forum), in my humble opinion, so I hope you can take some consolation in that. I'd like to echo Megan's advice, that being that anyone in our shoes should start by looking at a few specific things as a starting point, and then branching out from there. And it sounds like you've started already. 1) diet (probably the hardest thing, at least at the beginning!); 2) a good magnesium supplement (lots of threads here about this); 3) a very good (not just good, but a very good) multivitamin with lots of horsepower (you'll know what I mean when you compare labels, and again there are valuable threads here for advice on this); 4) epsom salt baths! None of these things should freak out your husband too much (arggh! those darned husbands!), except maybe the diet thing, if he wants your daughter to have sweets and junk. Because if diet is to be an effective weapon against the tics, it has to be thorough, and long-term (or non-stop!), as one has not only to pay attention to everything that goes into their child, but be vigilant in watching what reactions take place afterward. As I was told pretty early on in my process of dealing with things, "there is no pill -- diet is the pill." Which leads me to my final bit of "preaching:" guidance is crucial. We managed to find a practice where people listen and know how to think outside the box. It's a couple of hours away, but we manage. And our insurance covers the basics (we have had a couple of extra things tested, but it hasn't broken the bank). I'd have had a much tougher go of things if we hadn't had a little help from professionals who know what they are doing. Hang in there. Rest assured that, even though it might seem hard to believe right now, your hard work will make a difference. Chris

Kevin, tough decisions indeed, these. I'm also anticipating having to allow a food that's been eliminated (chocolate) this Thursday, as my sister makes these big chocolate explosion tort things that all the cousins go wild for. He's had no chocolate for at least a couple of months, so we'll keep an eye out. Or who knows? Maybe he'll decide not to eat it on his own... (Or, now that I'm reading this again, maybe I'll get conservative and ask my wife to make one of her carob deserts and bring it along...) I hope you're onto something with the salicylates, and that all your guys' hard work pays some dividends in that regard. Chris

Cws, recently there was a discussion that contained some mention of "telling" someone not to tic. There are probably others, too. It's really not the thing to do. http://www.latitudes.org/forums/index.php?showtopic=10825 Chris

Hi Cws, I'm glad you've spoken with a quailified guide. As Chemar is always so good about reminding people when she shares advice -- one should always check with a qualified practitioner when implementing changes to a child's diet and when supplementing. And also that what may provide benefits for one child may not necessarily provide benefits for another. We have been able to substitute some soy products for some dairy products because allergy tests confirmed that my son was ok with soy. As Megan said yesterday, this is not always the case; some kids have soy intolerance. So if you do decide to give the soy milk a try without testing, please pay close attention to how your son reacts. Every one here knows the overwhelmed feeling. Hang in there, know that changes can be made and feel good that you're taking some important steps toward helping your son. With time and patience you will overcome that overwhelmed feeling. Enjoy your weekend! (Starting to get chilly up here. Ugh. But not too long till the ski slopes open

"A clean diet, a good multi, magnesium and epsom baths are a really good base and then if need be you can add as needed." Hi cws. Megan has given you some great advice! It's pretty much what we do. I'd just add to her list a probiotic and vitamin D. And raw honey (so delicious). Here are the specifics of the things we know have helped us and how we implement these things: 1) We eliminated all artificial flavors, colors and preservates. This was hard, but for us it was the foundation for our being able to control our son's diet and to start to pick up on possible triggers. 2) We eliminated all dairy, substituting with soy (milk and yogurt) and a natural 'butter' substitute. (This was an elimination we did on our own, but one that was indicated as appropriate a little later by allergy tests.) 3) We started supplementing magnesium (Kid's Calm powder, no longer available, so we're moving on to the Natural Calm powder--same stuff). At first, I gave 1 tsp. in the am, but eventually added another tsp in the pm, as the evening regularly brought an increase in tics. 4) We started him on a multi. It wasn't adequate, and I recently changed it (see below). 5) We started him on a flax seed oil drink for additional omegas. I have recently stopped that, and am waiting to see whether or not to continue with it or another. (He may be getting adequate omegas through his diet...). We did all these things pretty much at the same time, when we were in the desparate moments of trying to get a grip on things. Later, we... 6) Started nightly epsom salt baths. I recommend you don't wait to start incorporating these into your routine. 7) had a urine test taken and tried a supplement recommended by our environmental dr. We stopped that fairly quickly. 8) stopped all supplements except the mg while waiting to do another urine test. This happened to be a crucial moment, since, toward the end of the week of no supplements, I noticed a decrease in tics. Following the urine test, we started up with the regular supplements again, and noticed an increase in the tics. So... 9) I questioned the multi and the omega supplements, eliminated both and tried a new multi (a real one this time, not a generic one) that I learned about here (well, let's face it, I've learned just about everything here...): Kirkman Labs Spectrum Complete powder. (I chose this one for some pretty specific reasons.) I should say that our "route" hasn't been quite direct; there have been lots of twists and turns and little moments in between these big ones that led us to to one thing or another. So where we are now (in addition to all our dietary changes)? a.m.: multi (1 tsp), mg (1/2 tsp), vit. D3 (drops); p.m. mg (1/2 tsp), epsom bath, soy yogurt / probiotic (2 or 3 times a week). May consider going back on omega supplement, but not sure at this point. Without a doubt, my son is in a better place now than he was when we started making these adjustments. I hope you find the case to be the same. Regarding the breathing tic, my son has had that. It is rare right now, but once in a while he does it. A slow deliberate deep breath. Usually associated with the end of a question when he's contemplating one of life's many mysteries. Good luck Chris

Rick, just confirming that corn was identified by an allergist as a food simply to rotate for my son, but I pretty much eliminated it later anyway as a result of some (perhaps imagined) rises in tic activity. It wasn't a real obvious connection that led me to do it, but I became suspicious a couple of times, and when that happens, I just eliminate, regardelss of what information I have from the allergists. It happened with tomatoes (tomatoe sauce being the main culprit), too. Fortunately, he's able to eat enough other things that the corn hasn't been an issue. The lack of tomatoe sauce for his pasta has been a tougher one to deal with, but perhaps an advantageous move in that he has cut down on his pasta (wheat) consumption as a consequence. Kevin, I'm sure you and Thea are well aware of this but I figured I'd throw it out there. If your son's eating a ton of corn foods recently as a result of eliminating so many other things, it could be that, because of the increase of it in his diet, it has started to become an issue whereas it wasn't before. Chris

Hi Faith, This thread brought me to try a different multi. The one I had been using was fairly generic, that is, not a multi with extra amounts of anything. It also had an ingredient or two that I figured would be best left out of our son's diet. I chose the one Lisa mentioned (the Kirkman Labs Spectrum Complete powder) for the reason that it had in it some of the things I was specifically wanting to get into my son (things that help with sulfation). The results have been noticeable, and were noticeable as soon as a couple of days after we started using it. It has a good amount of magnesium, so we're playing around with the Natural Calm that we were already using, trying to make sure he's not getting too much (loose stools were noticeable at the beginning, and continue to be so but not as much, due potentially to the mg, but also potentially to other things...). But I can't be sure it's the key since there are so many things in the multi. Personally, I'd like to think that goodies related to the process of sulfation have contributed, as well as the higher doses of the other things. Good luck with your decision making! Chris

Not me. Here's the link to a conversation a couple of weeks ago: http://www.latitudes.org/forums/index.php?showtopic=10501&st=0&p=88618&hl=shots&fromsearch=1entry88618 - Chris

Also, this doesn't sound like an unusual amount of strep. My non-PANDAS children have had a recurrent infection (kept testing positive) in 2009, and then again just about a year later in 2010. It really is not the number of infections per say, it is more about if you notice an significant increase in symptoms. Do you mind sharing which antibiotic and dosage your son was prescribed? I'm waiting on a call from the dr. right now to find out. I know you all know more about this than he will, so I wanted to check in with you first. Thanks for the feedback!

Hello, I'm a poster on the Tourettes forum with a question concerning strep, so I figured I'd come to the experts! My son (8) just tested positive for strep. He'd had a sore throat for several days and we finally took him in. When I heard it was positive, I asked for a record of other positive strep tests. I was told that in Jan. 09, he tested positive, then in Feb. 2010 he was tested but it came back negative. And now he's positive. So that's 2 (possibly 3) occurrences since Jan. 09. Is this a higher than normal occurrence of strep? Should I ask our dr. for a longer than usual prescription of abx, just in case? I've seen nothing that would make me think PANDAS to this point, but now that I'm a little more aware, I'm asking more questions. Thanks, Chris

Kevin, just wanted to mention that if dairy is an issue, I'd avoid it completely (butter included). We've been using a healthy substitute that my son likes just as much as butter (can't remember the name right now but it's even in the grocery store, so it's not a hard-to-find specialty product). I'm not sure the concept of threshold is always relevant. If I start with a suspicion and then get an indication that there might be something to it, I take no further risks. Congratulations on the successful Halloween outing! Chris

Mar, here's the link to a similar question I had not too long ago, with the helpful responses... http://www.latitudes.org/forums/index.php?showtopic=9778&st=0&p=82169&fromsearch=1entry82169 Chris

Hi, Like the others, I think it would be a good idea to see if you can find an alternative type dr. while you're wating for the neurologist. The "Finding Medical Help" link above was very useful to us. Regarding the red ears, it's something on my radar, as well, as our son has them once in a while. It could be related to a problem with the body's ability to process phenols. Here's one link that provides a quick reference to the issue. http://webcache.googleusercontent.com/search?q=cache:mu6PBwcniTwJ:www.wrongdiagnosis.com/p/phenol_sulfotransferase_deficiency/intro.htm+red+ears+phenols&cd=1&hl=en&ct=clnk&gl=us And another: http://www.danasview.net/phenol.htm If this happens to be an issue with your son, a daily bath with epsom salts will probably help. (It's likely to help a little even if there is no phenol issue). Finally, I would check with your son's pediatrician and see if he objects to supplementing magnesium. If he says ok, we use a supplement called "Kid's Calm," one of the Natural Calm products. He gets a teaspoon it in the morning and another in the evening. Good luck, Chris

Hi Kevin, When we took our son off dairy, and then subsequently found that we had done the right thing, since he was shown to have a reaction to dairy in his allergy tests, we were told that all dairy was to be eliminated, not just cow products. So I think you may be on to something with the goat's milk, and that you're making the right move to remove it. If dairy is causing a negative reaction with your son, it takes a good six weeks to be flushed from the system, so to speak. The results will probably not be immediate. We were told to keep our son off it for a minimum of six months before attempting to reintroduce it. But I'm pretty sure he's off of it for good. We allowed him some rice pudding at one of our favorite restaurants a few weeks ago. And while it didn't have any noticeable affect on him tic wise, he definitely felt it gastrointestinally. I congratulate you with your implimentation of such a rigorous diet. Hang in there, cause I'm pretty sure that his body will require some time to make the adjustments that will result in noticeable changes. Chris