Cj60

Here's a little about what we experienced with food sensitivities. Before we changed diet, my son was experiencing a number of tics, which, in retrospect, I now attribute to a probable genetic predisposition that was exacerbated by poor gut health brought on by poor diet (even though we though we had a pretty healthy diet!). Since his tic condition problably caught our attention only after it was exacerbated by years of deteriorating gut health that went unnoticed, improvement has been associated, in my non-expert mind, with improved gut health, which has taken time. So some tic improvements may take time. Nonetheless, once we decided to take long term steps (diet modification and supplements) and really focus on food triggers, we found ourselves picking up on foods that were offenders pretty easily. That is, his normal or "baseline" ticcing got noticeably worse fairly shortly after consuming a trigger food. This would tell us what to eliminate from his diet, and would also quite often land him in a bath of epsom salt, which has always been pretty effective at bringing tics back down to his baseline level. Slowly but sureley, his tics have become less and less, due, again in my non-expert opinion, to gut health which has improved slowly but surely, and a few key supplements. Now, when we allow him (ocassionally) to have foods that were once triggers, he tolerates them with no noticeable tic increase. But we are still vigilant and still restrict what he eats. One anecdote I have concerns one of the last truly noticeable differences in his level of ticcing. After a good year or so of the new diet, we were all at a comfortable spot with the improvements we had noticed. But we were still working. One day, I noticed my son's tics increase after eating an orange. Should have picked up on that before, I guess. It just so happened that I was giving him his multivitamin (one of the most notieceably beneficial supplements we use) in orange juice every morning. Stopped that the very next day, and within a week we saw a very noticeable decrease in tics. Hope this info helps answer your question. - Chris

Once we had our son tested for food sensitivities, and dairy came up as one of them, we cut out all dairy (not just milk but all dairy). At the time we were also starting the magnesium and multivitamin supplementation, along with a couple others that I learned about here. While the mag and epsom salt soaks would definitely show signs of lessening tics when they were waxing (typically in the evenings), it wasn't until we had implemented the new diet (eliminating all identified sensitivities, preservatives, artificials, etc) and a regular supplement routine for a couple of months that we could say that we noticed a definite improvement. Even if some might find that eliminating offending foods has a quick and noticeable affect, addressing food sensitivities should probably be looked at as a long term adjustment, since many times improvement is associated with improved gut health, which may take a while. Remember also that the magnesium is serving as a detoxifier and may result in some waxing. I recall noticing it with my son when I first started, but kept up with a regualr routine which has greatly benefitted. Good luck! Chris p.s. Supplementing a good potent multivitamin is also something to consider.

It was noted on this forum some time ago that Miralax was associated with instances of tic onset. You might want to do a search to pull up what the literature was. I paid attention to it since my son also, years ago, had constipation issues which we addressed with Miralax. - Chris

Hi, I found that the first step toward feeling better (and I sure did feel depressed about things!) was doing something. That is, getting on this forum, getting Sheila's book, finding a supportive dr., starting meaningful dietary changes and supplements, etc. all helped me get back on my feet. So it looks like you are on your way to feeling better! Hang in!! Chris

We don't do them.

Jennifer, Congratulations for being so proactive in the health of your grandchild. Such changes seem drastic at first, but after a while they are manageable. And if after a while you start to see the benefits, it is, of course, so worth all the trouble. Best of luck, Chris

Maybe this is what msnbc was referencing? My sister works in news and sent me this when she saw it. It was dated 8/9/12. ******* File:toureets-dd.wav Headline: SA Researcher Prescribes Behavioral Tech to Treat Tourette’s Intro: A San Antonio researcher working with the UT Health Science Center San Antonio is developing ways for people with Tourette’s syndrome to control their tics – without the need for pharmaceuticals. From the Texas Public Radio Science and Technology desk David Martin Davies has the story. TRACK Tourette’s syndrome, a neurological disorder associated with motor or vocal tics that can be embarrassing or disruptive. A new study conducted at the UT Health Science Center along with Harvard/Massachusetts General Hospital and Yale University is affirming that Tourette’s can be successfully treated without using strong antipsychotic drugs. Dr. Alan Peterson a San Antonio psychologist who is a co-author of the study said there are big drawbacks to relying on medication to manage Tourette’s. “There’s a lot of weight gain. There are some permanent neurological conditions that can occur that can cause some pretty significant long term problems that can occur.” Instead the study finds that behavioral therapy works better than the meds – and without the side effects. “We teach people how to identify this premonitory urge then we work with them to develop competing responses that will prevent the tic from occurring.” The therapy might include developing skills like: tic awareness: learning to detect early warning signs that a tic is about to occur. Teaching patients to uses rhythmic breathing techniques to ward off a tic and relaxation training The treatment called comprehensive behavioral intervention for tics, or CBIT is slowly catching on in the United States – but it’s being embraced and promoted in Canada and across Europe. The results are published in the Archives of General Psychiatry. For the Texas Public Radio Science and Technology Desk – David Martin Davies reporting.

Hi, Considering the incidence of infection, I would certainly advise cross-posting on the pandas forum. An environmental practice might also be something to consider, with the variables you mention (chlorine, cat, fertilizer, spaying ...). Good luck, - Chris

Wonderful news! Wishes for continued success!! - Chris

Hi, When we were supplementing magnesium on its own, we used Natural Calm (no flavoring), thanks to the recommendations of members of this forum. The label says 350 mg is 87% of daily value, and in another place indicates 540 mg (advanced use) is 135%. We started with a 1/2 tsp. and moved up from there to 1 tsp., sometimes 2x daily. Probably best not to start at full dosage since mg has some laxative qualities. We no longer supplement mg directly since the multivitamin we use (Kirkman Labs, Spectrum Complete II) has a good bit of it already. This multi seems to get mixed reviews here, but we found it to be perhaps the singlemost beneficial supplement for our son. Good luck! Chris

Hi, I would highly recommend 1) reading the book referred to in the first pinned link of this forum, and 2) searching the second pinned link in this forum to see what kind of medical help is out there. It's hard to get a handle on things if you're flying solo. The book gives you information and direction so you can start to take control of what steps to take, and the proper medical help (that is, probably not your average pediatrician) is, in my opinion, priceless. We would have had a much harder time managing things without someone with some expertise in our corner. And this forum, which is also priceless!! Good luck! Chris

Anks, just sent you a message with the name of an environmental practice a little north of Phila. - Chris

Hi, What has worked pretty effectively for my son has been 1) a pretty clean diet: no dairy, no artificials or preservatives or unnecessary additives. Along the way we have also identified and eliminated foods that are offenders. 2) A potent, comprehensive multivitamin (Kirkman's Spectrum Complete II hypoallergenic unflavored). If tics are diet (digestive track) related, time and patience are necessary. We also supplement sulfate in the form of glucosamine sulfate for reasons that are probably particular to my son. Magnesium was also a very important supplement for us. But the multi has lots of it so we stopped supplementing that. Epsom salt baths, for both magnesium and sulfate, always proved beneficial, as well. We found inositol to be a helpful supplement for his minor ocd, when it became noticeable to us. We found certain teas to help, too. Good luck! Chris

I used to give natural calm daily, and was fortunate. My son, who started taking it at @ 8.5, didn't mind it, partially, I think, because he was aware it was beneficial. I served it hot with honey, in the evening. On a somewhat unrelated note, it took a while, but eventually I figured out that citrus juices (which I served him daily with his multivitamin) were problematic for my son. Good luck!

Hi, Not an adult with TS, but for what it's worth... - If tics are allergey related, Spring is a good time to notice tic increases. - Magnesium detoxifies, so, while it's not common to hear of elevated tics associated with the recent addition of magnesium as a dietary supplement, there's no reason to think that a little herxing (and thereby elevated ticcing) would not happen in some cases. I'd stick with it for a while. Just make sure you're taking a clean form (no flavors, colors, additives). - The recent move into a potentially moldy living space seems too strong a possible cause to ignore. Did you get allergy tested for inhalents (this is where they would test for molds and pollens, etc.) - I am far from an expert, but my hunch is that an adult whose tics may be caused by dietary or gut related issues may have a longer healing time than children. I think you're doing the right thing by taking care of your diet and identifying offending foods, etc. If diet is an issue for you, some improvements may be noticeable in a short period of time. Others might take a little while. The key is to be aware that if dietary modifications are going to help, you have to stick with them for the long haul if you can. Best of luck Chris

Mangos can be high in salicylates, even though they are listed in the "moderate" category on the following list. If they are observed to raise tic levels, it might be worth while keeping an eye on salicylate intake. http://salicylatesensitivity.com/about/food-guide/fruits/

Hi, It would seem that the ticcing is related at least in part to food sensitivites / digestive track issues. Is there an allergist you can reach before August? It is a little easier to identify and eliminate offending foods with the help of some testing. Chris

Sorry Diane! I didn't mean to discourge. I'll keep quiet, but just say one last thing: a good dr. (or doctors) undoubtedly helps. He/She/They will be able to tell you if diet is even an issue. In our case it was. And we could not have done a diet change without expert guidance, which we got from an environmental medicine practice. With that help, making the change was very very possible. We did it. Chris

Hi, Good eye! I would not give this product to my son. The tapioca is probably for flavor, the tri ph ("anti caking") and sod bicarb (antifungal) are proably both in there to act as preservative agents, etc. etc. etc. It's hard to find things completely devoid of such ingredients, but it's good to avoid them as much as possible. A long ingredients list on any food product will keep me away from it. A couple of months ago I linked a 60 minutes report on how "natural flavors" can be made. The labels should probably just say "... and combinations of random assorted chemicals [that we aren't naming] which attempt to mimmick the flavor of a real food." Good luck with the modifications; I know they are not easy to do, especially at the beginning. I hope they prove to be beneficial. Chris

Sounds like you've got the starting point of an elimination diet worked out, from what I recall reading about them. Good luck with it. My son's intolerance to dairy was probably built up over a long period time, and was probably tied into other digestive track issues. Eliminating it didn't show drastic immediate results. But I recall things going somewhat better for him within a month or so of cleaning up his diet. When he's allowed ocassinally to eat cheese now, it doesn't produce obeservable rises that I've been able to pick up on, most likely because his tolerance is greater now, because his system is pretty free of dairy. I believe I recall reading here that some people have quick reactions to dairy. Is it one of the foods you're supposed to reintroduce first? I'm looking forward to hearing how your diet comes along; again, good luck! Chris

Sounds like you've got the starting point of an elimination diet worked out, from what I recall reading about them. Good luck with it. My son's intolerance to dairy was probably built up over a long period time, and was probably tied into other digestive track issues. Eliminating it didn't show drastic immediate results. But I recall things going somewhat better for him within a month or so of cleaning up his diet. When he's allowed ocassinally to eat cheese now, it doesn't produce obeservable rises that I've been able to pick up on, most likely because his tolerance is greater now, because his system is pretty free of dairy. I believe I recall reading here that some people have quick reactions to dairy. Is it one of the foods you're supposed to reintroduce first? I'm looking forward to hearing how your diet comes along; again, good luck! Chris

Hi, We found diet to be key in how we addressed our son's tics. If you were to search this forum for "diet" or even "elimination diet," you'd find lots of information. While some people choose to do their own elimination diets, and we did, too, with a couple of key offenders (dairy, artificial colors and flavors, preservatives, high fructose corn syrup), the diet we have followed for 1.5 years now was arrived at with the help of an environmental medicine practice. We found the practice through the "Finding Medical Help" link on this forum. We have much preferred the alternative medical attention my son has received for a number of reasons. But basically, the pediatricians and other drs. we had used prior to needing to expand our approach regarding health issues were definitely not prone to looking outside the box. It sounds like your pediatrician isn't quite as limited in some things as our's is. My son was tested for food sensitivities and based on the tests we were guided in eliminating some foods and implementing a rotation diet for some other lesser offenders. Over time, we identified some triggers that weren't identified through the tests but rather through our close observation. We followed the diet very striclty for a long time, and now lax up only on ocassion with some items. While it might be found that the removal of some triggers may quickly alleviate problems, if you want to see if a diet is going to have a positive effect long term, it takes patience. In addition to diet, we supplement a clean, potent multivitamin, again, religiously. A couple of other supplements round out things for us, but I think they are pretty particlar to my son. The diet and the multivitamin have had the greatest impact on our son's tics. Lots of other stuff too that can help. I'm sure you'll find lots of help here. One word of advice you're certain to hear is don't discount pandas simply because of one test. And don't stop looking for other answers. Lyme and mold also are linked to tics. Good luck, Chris

Since the topic of "scientific" treatment related to tics has been brought up recently, let me recall how "scientific" our last visit to a ped. neurologist was, just three of four months shy of two years ago: 1) I was handed a check list of tic behaviors and asked to rate them from 1 to 10 (if I recall correctly) as they applied to my son, 1 being minimal and 10 being incapacitating. 2) while I completed the checklist, my son was given a reflex test, just like you would get for testing for a concussion. The n.p. then questioned the veracity of my feedback on the checklist and proceded to ask questions directly to my son as to whether the information was accurate. I started to taste my first bitterness toward the doctor. Then, when I asked what she knew about alternatives to the meds she had very quickly prescribed (by then I knew that there were some alternatives out there), she scoffed, telling me that any suggested improvements in tics through alternative treatments were purely "psychological." The final blow was when, after I told her we wouldn't be doing the drugs she prescribed until we pursued other courses of treatment, she again turned to my son and asked him if he wouldn't like to take the pills if they helped him stop the ticcing. (Never mind that my son, 8 at the time, had very little recognition of the fact that he was ticcing.) Now there's good science for you! We then started going to an "alternative" environmental practice, where allergy tests were administered, a program for diet modifications was provided, urine analyses were run, and a doctor suggested supplements that were aimed at addressing the issues that were identified through the tests we had run. The "quackier" of the two practices by far was the p.n. I hope everyone who has to deal with a p.n. for tic related issues has much better luck than I did. We all have to visit the docs that we have to visit in order to find out how to best procede and best care for our children. But there are lots of people outside of dr's. offices who know as much if not more (lots more) about tic matters than our local pediatricians and even specialized p.n's. Chris

Jens, please, there is ample evidence on this forum, as well as in other places, that show that what is outside the body, i.e., in the environment that surrounds us, can and often does indeed affect what goes on inside the body. There is also ample scientific documentation regarding the relationship between electromagnetic fields and epileptic seizures, a disorder directly related to the function of neurotransmitters.

Hi, Just wanted to compliment you on all you're doing for your son. The dividends of investing so much care aren't always noticeable, especially right away. But when you leave no stone unturned, you find things that you wouldn't have found if you did nothing. I hope your visit with the dr. regarding the pandas goes well. I can comment on a couple of things in your post. We eliminated dairy (not just lactose) from the get-go, and allowed none of it for close to 6 months, by which time we had identified some other dietary changes and supplements that seemed to help along with the dairy elimination. We eventually started letting him have pizza once in a while, and now he has it somewhat regularly (no more than once a week, but typically not even that much), but that's the only dairy he gets, and I don't ever plan on providing it to him in any greater measure than we do currently. I've seen it posted here, and experienced with my son, that an increase in ticcing at the end of the day is par for the course. I know it's getting close to bed time if I see an increase in tics. I think the table can be similar. Kids are less focused and I can see how the transition from being active and engaged in something to sitting down in a chair for 30 minutes results in some tic release. It could also simply be that we have them directly in front of us for an extended time and actually witness the ticcing directly. And/or it could simply be that at the table with their family they can just be who they are. Good luck, and let us know how things progress. Chris