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Hi Jetocurly, Vitamins have been a fairly regular topic since I've been on this forum. And I've always been happy to mention the brand of multivitamin that we use, since it's been one of the supplements that has had a truly noticeable and positive effect on my son's health. (The other thing has been diet, so no matter what supplements one takes, things probably should start with diet.) Spectrum Complete II by Kirkman Labs. We started using it as a powder mixed in with a drink, which was not always the easiest. But now my son's able to take it in pill form. Much less stressful! Valsmom mentions methylation as an issue. Improper sulfation can also cause a build up of toxins that can lead to problems. I think that the multi we use, in combination with another supplement (glucosamine sulfate) probably helps with my son's sulfation. Good luck! Chris

That's good news! See if you can distract him when it gets close to a month. Maybe change the calendar, something like that. (Dairy takes a long time to clear from the system--we were told to eliminate it for a minimum of 6 months. And it was definitely over a month before we started seeing some lasting improvements, some of which I'm certain were a result of removing dairy.) Hoping you all get positive results. - Chris

Hi Musicmom, You'll find lots and lots of info here, but I would suggest that, if you can, you find professional help as you start to sort things out. I found help through the "Finding medical help" link at the top of the topics page of this forum. I went to www.aaem.com and identified some practices that were within my range. I was fortunate and found a great environmental practice a couple of hours away that helped me with everything from establishing a diet for our son to doing appropriate testing. What I think I value as much as anything from that practice is that they work with people with all kinds of medical issues that traditional medical practioners are simply unqualified to work with. So finidng a medical professional who listens, understands, and is willing to think beyond the regular patterns of doing things is very comforting and a great first step if you can manage it. We started with modifications to my son's diet. It was very challenging at first, but in the long run it has had a tremendous impact on his health. At a minimum, eliminating all colorings, artificials and additives is a good start when addressing dietary matters. Junk in food has adverse affects on anybody's health at some point, and it seems that today's kids are being affected by it more than ever. It sounds from what you've said that like there are could be several environmental factors affecting your child's health, which again points to the need for some professional guidance. And patience. Good luck, and congratulations for taking positive steps to help your son. Chris

PGell. Wow. My initial reaction is that I lost faith in the traditional medical community when I was starting to deal with my son's problems, due principally to the fact that traditional practioners fail (refuse) to think beyond "there's no peer reviewed research..." If I could do that every time someone asked me to help solve a problem where I work, I'd be out of a job, and quick. Medical professionals who use that excuse to hide behind should feel shame for doing so. So several years ago, my son develps a neck tic, then things progress to arm flaps and leg bends and breathing tics and facial tics and ocd type behaviors. A PN, a cruel person, diagnoses TS (with the exception that a full year had yet to elapse, but it would), gives me prescriptions for two meds. I ask what alternatives are there (we had already begun doing some food elimination)? None. All anecdotal information is quackery. When I say I won't be using the meds, she looks at my son, who's still lying on the table, and asks him directly if he wants the meds, don't you want to feel better? So we go to an alternative environmental practice, get serious about diet, and get lots and lots of information and support right here. My son't tics are barely noticeable now. As everyone says, not two cases are the same. But what had every hallmark of TS in my son has come to be managed by diet, a multivitamin and one other supplement. I took the time to try and figure things out without meds. And for me (not only me, but also for my wife and, needless to say, my son), it WAS worth the time and the energy and the stress and the worry and everything else. So you are a proponent of meds. Fine. But please stop suggesting that people are wasting their time by trying to find alternative ways to help their children.

I won't go into the the details, but In our case, two ped. neuros; two very negative experiences. Such that I would recommend to someone dealing with tics that they skip the pn entirely, unless what they need is a diagnosis for acess to helpful school programs.

Please reconsider continuing use of Miralax : ) http://www.judytsafrirmd.com/spotlight-finally-on-miralax/ (There's more anecdotal stuff out there if you google it.) Regarding the fruit smoothy... do you know if he's sensitive to any fruits? Sorry if you mentioned it before and I missed it. I found--through close observation sometimes and by accident others--that some fruit agitated things for my son. At one point I was giving him his vitamin, which was one of the things that notieceably helped reduce the tics, in orange juice. Once I realized that oranges were a problem, and stopped using oj, there was another noticeable decrease in the level of tics. Good luck with things. Chris

I recall a forum member mentioning a couple of years ago that the chalk used during gymnastics was a trigger concern for his child who was active in gymnastics.

My son had constipation issues when he was younger. His pediatrician at the time thought it to be enough of a concern to recommend we use a laxative with him (Miralax), advice which in retrospect I regret having taken. I didn't connect the possibility of a constipation / tics connection until a couple of years later, even though my son had indeed had an initial onset of tics (pulling at his eyelashes, stopping and squatting unexpectedly while he walked) around the same time of his constipation issues. Improvement in his tics over the past two-three years has been a direct result, in my amatuer opinion, of improvements in the health of his digestive system, and his body's ability to rid itself of damaging toxins. So I would look at the constipation carefully as your dr. suggests, while also avoiding any laxative that has potential side affects. - Chris

Alan, guy123 posted information at this link last year: http://www.latitudes.org/forums/index.php?showtopic=16430&hl=%2Bguy123+%2Bguanfacine#entry132181 - Chris

Anks, Red ears can be a symptom of phenol and/or salycilate intolerance, which in turn are indicators of problems with sulphation. If you google phenol intolerance of salycilate intolerance or phenol sulphur-transferase (PST), you'll find lots of information. Like: "feeding large amounts of sulphur and phenolic-based foods to PST deficient children will cause a build up of phenols, amines, salicylates, and other toxic substances normally cleared by PST." http://www.allnaturaladvantage.com.au/Phenol%20Sensitivity.htm. I am fairly certain my son's tic problems could be traced to problems with sulphation, at least in part. Red grapes (relatively high in phenols) were one of the first foods we nixed once we started watching (like hawks) what he ate. Like your child, my son also had intestinal issues (constipation in his case) as a child. Unfortunately, we addressed that issue with a product - Miralax - that has subsequently been linked anecdotally to tics... Improvements in my son's health were the direct result, over time, of 1) diet (which was developed through consultation with an environmental medicine practice, and which included thorough testing for food intolerances), and 2) the daily supplementation of a potent mult-vitamin (Kirkmans Specturm Complete II, which I first learned about on this forum). Because of my suspicion of sulphation as an issue, we also supplement glucosamine sulfate. - Chris

http://www.woodmed.com If you're in Bucks, it's practically in your back yard.

Great news! Having someone working for you who knows what you're dealing with is a true gift. We got lots of help from an environmental practice, too. They cared, they listened, they were willing to do different tests, to look at different things, etc. They didn't just think outside the box -- they were outside the box. Everything our traditional dr. was not. Continued luck! - Chris

Thanks Jen! It's important (I think) to stress how important diet can be in reducing tics, and how changing and monitoring someone's diet can be real hard work, especially at the beginning. - Chris

I stopped having my son (and my daughter for that matter) vaccinated. It didn't make sense to me to be injecting him with crap that could compromise his immune system at a time when we were all working very hard to clean and strenghten it naturally. Not to knock our generic pediatricians, but I'm knocking. Ours was contrary throughout our vaccination information gathering process. We found support through an alternative practice which provided us with an exemption form that was accepted without question by our son's school. We are currently considering whether to do one or two vaccinations. If we do, they will be given separately and with plenty of time in between to monitor things. (There's some valuable, expert vaccination info on here and on the PANS / PANDAS forum if you have a little time to search.) - Chris

Just a word of caution about chewing gum, as unless you've got a natural one, it tends to be filled with the worst kind of stuff. (Glee Gum is a healthy choice.) - Chris

Some of these symptoms seem to suggest that there could also be infection-related health issues. Have you posted on the PANDAS/PANS or the Lyme boards? - Chris

If you're in SE PA, this practice is wonderful! http://www.woodmed.com

The symptoms you describe would lead me to seek help I were to see them in my child. I know that there are forum members who have taken things into their own hands, but when we first noticed tics in our child, we sought help from an environmental medicine practice. We couldn't have figured things out by ourselves. While it seems on the surfact that labeling your son's symptoms with a specific name doesn't seem overly important, it is somewhat significant to have a general idea about what is causing the tics. Are they a manifestation of PANDAS or Lyme and brought on by infection? Are they more in line with TS? Are they caused by a chemical or food sensitivity? Answers to these questions would lead to different plans of treatment. So in that regard, naming might be useful. I would re-post on the PANDAS and Lyme forums to see what members there have to say, in addition to members of this forum. Good luck, Chris

Hi, I'm not sure what your doctor's may be suggesting as the cause of your sons tics. But if they are a result of certain intolerances (food or other), they may have built up over time. That is, at one point, your son's body might have been able to eliminate certain toxins. But over time, a body's inability to eliminate toxins from the system can affect gut health. They find their way into the blood stream and can interfere with all kinds of things, including neurotransmitters. At that point, detoxification (mg does act as a detoxifiying agent) is noticeable. I noticed my son's tics increase when I started with mg. But we stuck with it, along with some other things and a modified diet through which we have eliminated offending foods. Over time, I believe that some level of health has been restored to his system. So an ocassional slip up in the diet does not have noticeably adverse affects. But if we get too casual about things, we can count on a build up of toxins and tics resurfacing. If the supplements are causing you and your son too much concern for now, perhaps being proactive with eliminating whatever it is the drs. have identified as offending agents is the route to take in the hope that little by little you'll see a lessening of tics. Then maybe at some point you can return very carefully (one at a time, small doses) to using supplements. Good luck, Chris

The "anecdotal" data and information that I have learned over the past two + yrs. on this board has suprassed in usefulness and effectiveness the traditional data and information that I have received from pediatricians, neurologists, etc., and BY FAR. So much so that I do not lend much credence to our tradtional drs. for much of anything anymore beyond getting antibiotics when we need them. Cynical? Very much so! The information on this forum has also helped us in some areas that our non-traditional drs. have not. So I'm a big fan of "anecdotal." - Chris

Hi, I did read your post but figured I'd wait until parents with direct experience chimed in, since I haven't dealt with defiant behavior or adhd. Did you search the forum for "defiant behavior"? I often see PANDAS and PANS comments related to the sort of behavior you are describing. Perhaps posting on that board would bring some helpful responses. I have dealt with tics and minor ocd and have some experience in those areas, but I didn't pick up on any of the things that you have done or are planning on doing to address them directly. I feel badly that your grandson's school teachers and administrators are behaving the way you describe. I wouldn't tolerate it. There are services that schools must provide children with this sort of problem, and they should be pointing you in that direction rather than punishing him and you. Good luck, Chris

ds = dear son (in this case 4 yrs.s old) dd = dear daughter (8 y.o.)

http://bonniegr.com/index.html Do you use a good, comprehensive, potent multivitamin? It's been one of our most beneficial supplements. - Chris

I suggest that now that you've gotten the pediatric neurologist out of the way, see if you can find someone who is able to help you. Have you looked into an environmental practice? That's where I started (that is, after we determined that the pediatrician and the pediatric neurologist were useless), and they helped with everything from diet to tests to supplements. And you feel like you are understood and like you are not alone. Which is a good feeling. I think if you're going to consider diet modification as an option, it's easiest with the guidance of professionals who are experienced. Because it's hard to do. They would tell you that at a minimum you have to get rid of all artificials (flavors, colors, perservatives, etc.). This is a tall task; it might as well mean going organic, because just about all of today's convenient, processed foods, which are probably all things that our kids like since that's what we've been giving them all their lives, are filled with stuff that's not healthy for them and may very well be part of the reason they are having some of the troubles they are having. It's no coincidence that we're finding more and more preservative free and artificial free and hfcs free, etc. etc. etc. in our regular old grocery stores. The stuff is harmful and more and more people are suffering because of it and looking for alternatives. Regarding the milk, If you got off of it and you think it helped, that's an excellent reason for staying off of it. My son has survived perfectly well without it. What I should say is that his health has improved by not drinking it. Maybe you could try cutting out other dairy, too. Cheese, for example, which is like milk on steroids. - Chris

This link identifies a couple possibilities in that area: http://www.aaemonline.org - Chris