Jeff

Hi Faith, More tics for me means, yes.. more urges to tic. There is a sensation in a specific location of your body, and the "tic" will satisfy / relieve that sensation. I can NOT do the tic if I don't want to, but the urge will continue, and I will eventually need to do the tic. It's kind of like an itch... you can NOT scratch it, but the itch will continue until you scratch it. When I'm "ticcing less"... it really means that I'm not getting those sensations or urges as often, and therefore don't have to do the tic as often. Hope that helps.... Jeff

Hi Nadine, "Natural flavors" should be okay. Other things to watch for are 3 specific preservatives... BHA, BHT, and TBHQ. The Feingold Program does eliminate those 3, and we have seen effects from them in ourselves. You should also try to eliminate any artificial flavors. A commonly used one is "vanillin"... - an artificial flavoring.... "vanilla" is natural, and is okay. One of my daughters reacts to too many salicylates. Those are naturally occuring, and unfortunately are common in many fruits. My daughter reacted to tomatoes, apples, and strawberries. We limited her consumption of those fruits. It might take a while for you to see results in yourself. There is a "withdrawal" period, and for some, the symptoms can get worse before they get better ! Caffeine is another trigger... if I have too much coffee in the morning, I start to tic that same day... usually within a couple of hours. Hope this helps. Keep reading those labels. You might still be using a product that has artificial colors / flavors. Jeff

Hi JMT, You should definitely try the natural alternatives before trying meds. It may be something as simple as dietary changes. For us, eliminating artificial colors and flavors from our diet has made a huge difference in our tics. We went from ticcing almost all the time, to hardly ever ticcing, and luckily, we never had to go the "meds" route. Look at the ingredients on the labels of foods your daughter eats. If you see anything like "Red #40", or Yellow #5, etc... any of those colors, then get rid of that product and see if you can find an all natural substitute. Shop at natural food stores, or at a Whole Foods, if there is one nearby. Organic foods are usually safe, too. Avoid candies like Twizzlers, M and M's, or Skittles, cereals like Trix or Lucky Charms.. any of those "colorful" foods. Once we eliminated those items, my daughters' tics stopped within a couple of weeks. It can be difficult at first, but it gets easier. We joined the Feingold organization (feingold.org) and learned a whole lot about what those additives can do to us. Good luck. Jeff

Hi Lukesmom, We have had great success reducing tics by eliminating artificial colors and flavors from our diet. For example, if you son eats cereals such as Trix (lots of pretty colors!!) or Lucky Charms, or candies like Twizzlers, M&Ms, Skittles, etc., those are full of artificial colors, like Red #40, Yellow #5, etc. Many people react to those additives in different ways. If we keep those out of our diet, we are virtually tic free. Look at the labels on the foods he's eating, and look for those colors. Try to find all-natural substitutes for any foods with artificial colors (and flavors). There are a lot more choices out there now than there used to be. If you have a Whole Foods nearby, that's a great place to shop for all natural items. Good luck.

Hi Faith, You mentioned that you had tried some dietary changes - removing corn syrup and milk. Did you try removing all artificial colors and flavors? Those can also have an affect on tics, behavior, and overall health for many individuals. Removing them from our diet has made all the difference in our family. Best of luck. Jeff

hi robinjax, I would echo what the others have said regarding the Dimetapp and any foods with artificial colors, flavors, and preservatives. In our family, those have been our biggest triggers. If your son is eating a "popular" brand of Mac 'n Cheese, chances are it contains some Yellow #5, Red #40, etc... There are brands of all-natural mac 'n cheese that do not contain artificial colors or preservatives (e.g., Annie's brands). If your son eats colored cereals, like Trix, Fruit Loops, etc, switch to some organic brands... may not taste as good, but they won't have those colors. Or change to pancakes, eggs, etc. We use Aunt Jemima original mix... just add milk, oil, and egg. If he eats candies like M and M's, Skittles, Twizzlers, Starburst, etc..., try replacing them with some all-natural candies, or at least some that aren't colored. And watch out for "fruit drinks" that aren't really fruit. For example, use Juicy Juice - not Hawaiian Puch. If your son is indeed reacting to these kinds of food additives, it might take several weeks of eliminating them before you notice any improvement. On the other hand, it might be very soon and it might be very dramatic (as it was in our case). Cookies and ice creams can also be contaminated with these additives. Look for brands that do not list in their ingredients things like "Red #40", Yellow #<>, Blue #<>, etc..., or preservatives like BHA, BHT, and TBHQ. "Vanillin" is an artificial flavor... look for items that say "vanilla". Like Carolyn said, if you can shop at a Whole Foods store, just about anything they sell would be void of any of these addtives. Glad you found this board... wishing you and your family the best. Jeff

Hi fitforit, Yes, those colors could very well be making the tics worse. But you don't have to stop ALL potato chips... Herr's regular chips and Lays regular chips are okay... and you can probably even find some all-natural chips of other varieties.... look in the all-natural section of your grocery store, or some organic chips.... Be sure to keep reading labels. Jeff

Depending on your triggers, there are many all-natural treats. We eat several varieties of Breyer's Ice Cream (the black/white boxes... no arts, no Corn Syrup, but read the labels), there are all-natural candy stores where you can buy home-made candies (chocolate butter-creams, coconut creams, all-natural candy bars, etc. (try www.squirrels-nest.com). Or try your local health-food stores. You can also buy all-natural cake mixes, we make chocolate-chip cookies with Ghirardelli all-natural chocolate chips. We use Aunt Jemima's pancake mix, and 100% maple syrup, we drink whole milk, use real butter, Polaner's jellies, Pepperidge Farm cookies..., etc. Cereal choices are limited... we usually go organic on those. Actually, there are plenty of choices, but they don't taste that great. We also like the Aunt Jemima coffee cake mix. Again, it depends on your triggers, but if you're only avoiding artificials, there are many all-natural choices out there. And as your children get older and bigger, it's likely that they'll be able to tolerate more..., like a miniature snickers, for example. Hope this helps... Jeff

Yes, we still avoid artificial colors and flavors, and preservatives BHA, BHT, and TBHQ. Yes, for us there is a direct correlation between consuming those items and our tics. Corn syrup has had nasty effects on our younger daughter - mostly behavioral. My daughters are now 12 and 14 years old. We began eliminating these items 7 years ago, and we have never returned to the level of tics that we were experiencing before starting. Not even close. As they have gotten older and bigger, we have found that we can deviate more often without any worrisome consequences. Tics do return, but they are mild, not noticeable to anyone outside the family, and they don't last long. We still keep an artificial-free diet in our house, but the girls do tend to eat more snacky things that we wouldn't have eaten in the past. For example, an occasional Snicker's or Hershey bar is not a problem, but we stay away from things like Skittles, Twizzlers, etc. Sorry if I gave more than the requested info. I just know that this type of diet can be overwhelming, so I want everyone to know that, in our case, we haven't had to go to the lengths that some do. Jeff

In our family, we have had great success controlling the tics by eliminating certain additives from our diets. The worst for us seem to be artificial colors, but we also limit artificial flavors, and the 3 "BH" preservatives - BHT, BHA, and TBHQ. You might want to start by eliminating those items BEFORE you get into dairy, wheat, etc. Fortunately for us, we haven't had to eliminate those, but that has also been very helpful for many folks. You can find artificial-free foods at All-Natural stores, Health-food stores, Whole Foods store, and more. Start to read labels and eliminate foods with any of the colors, like Red #40, Yellow #5, etc. They are in so many things that it might surprise you. Common examples are "fruit" drinks, like Hawaiian Punch, or Gatorades, cereals like Trix, Fruit Loops, etc., and candies like Twizzlers, Skittles, and many more. Depending on where you are, you can usually find natural substitutes for most of those items. Try eliminating those items for at least a few weeks. For some, the symptoms get worse at first, but then the change can be very dramatic. If you have any questions about what we're doing, I'm happy to answer. You might also look at the Feingold web site... feingold.org. Best of luck. Jeff

Fitfor it, Sorry to hear about what your little boy is going through. I know that it's heartbreaking. But I feel confident that you will find what triggers your son's tics, and find ways to remove the triggers. One of the biggest triggers for me and my girls is artificial colors and artificial flavors in foods. Many other folks who post on this board have also found this to be true. Some examples are Red #40, Yellow #5, etc. They are very commonly added to breakfast cereals, "fruit" drinks, candies, etc. If your son is eating foods with artificial colors and flavors, and some preservatives, maybe you can find some "all natural" replacements. It has worked wonders for us. Best regards. Jeff

The Squirrel's Nest is a store I know of that sells natural candies and foods. I think they might sell all natural food colorings too. www.squirrels-nest.com

That's some very good news, azhorsegal.... I'm keeping my fingers crossed for you and your daughter. Your story is very similar to ours. My oldest daughter started ticcing at around age 7... Her first and second grade years were tough. When she'd sit on my lap, I'd feel her whole body twisting and turning - like you said, nearly every muscle group. A few weeks after we started FG, everything changed. On my lap, she was as still as a stone. I'll never forget that. I don't want to get your hopes up too high, but that was the trigger for us..., and her tics (and her younger sistier's), have never been as bad since we started FG. Yes, we've had our set backs, but we always were able to eventually figure out what was causing it.... either some new food we'd introduced, or some older food that we had just overlooked. She seems to have grown out of the effects of the salicylates, and my younger daughter is tolerating CS better these days (that's a relief... 'cause the CS affected her behavior more than her tics.... she would get really mean, un-focused, irritable, etc. We haven't seen it real bad for several months now. My girls are 14 and 12 now..., and the tics are not an issue - they have not been an issue for several years. We still see them once in a while, but we usually know why, and we know that, with a clean diet, they'll be gone again in 1-3 days. By the way, I tic too. I'm 50 and I've ticced since I was about 7. Lack of sleep, caffeine, and colors are real triggers for me. Wishing you continued relief.... Jeff

Hi Azhorsegal, Sorry to take so long... Yes, we felt terrible at first having to eliminate so many fruits!! People thought we were crazy (what do you mean she can't have an apple!!??) My oldest was senstive to salicylates, so we had to be careful. We found, though, that she was sensitive to some, but not all... She really reacted to tomatoes, but not to grapes... which was lucky, as she likes grape jelly. Pear jam and mango jam were also helpful during that period. Look in some natural food stores, Trader Joes, Whole Foods, etc. We never did find a FG acceptable bread, so we just stayed with our usual brand of 100% whole wheat, which was not on the list. Yes, I would guess that corn sugar is indeed corn syrup. If you're senstive to that, you should probably avoid it. You might have luck with an organic bread.. they usually use a cane syrup, not corn. I wouldn't worry about the calcium propionate... but do avoid the three BH preservatives. If you're near a Whole Foods, they have a 365 Brand of sodas with no CS, in case you're looking for sodas. We've also had good luck with the Coke from Mexico. They use cane syrup, not corn. Comes in a bottle like the old days.... more expensive, but it's been a great find for us. Going on vacation tomorrow, so won't be checking in for a while. Best wishes. pjc

Hi all, Yes, removing the artificial colors, flavors, and "BH" preservatives made ALL the difference for us in eliminating the tics. We have been Feingold members for about 7 years now, and are very grateful to have found it. Within a few weeks of eliminating the artificials, my daughter's tics went from serious to a non-issue. Although we are still members of FG, we have been able to relax our restrictions considerably (plus, my girls are 12 and 14 now). Occasional cheats do not cause problems. We have found that the artificial colors are the worst triggers for us. The biggest advantage of FG is the book that they publish every year with "approved" products, and the members' Bulletin Board where you can share experiences and recipes. Most FG members are there because of problems with ADD, ADHD, etc, but there are a few of us who are there because of TS. I'd be happy to answer any questions you have about the program, foods, etc. Feel free to ask. I'm sure you have a ton of information that you're trying to process right now. Please try not to get overwhelmed and try everything at once. That's really hard on everyone in the family. Best wishes. Jeff

Deanna, We have also found that artificial colors and flavors trigger our tics. Read your food labels, and if your daughter is eating foods that have, for example, Red #40, Yellow #5, etc..., you might consider removing those from her diet. Look for all-natural replacements, or organics.... Our improvement was dramatic once we started removing the artificial colors... Examples of common foods with colors are: Twizzlers, Skittles, Trix, Fruit Loops, Hawaiian Punch, Gatorades, etc., etc. !!! Good luck. Jeff

We found out about the colors and flavors largely out of luck. My oldest was having a particularly bad time of it, and we read an article about how the colors and flavors could affect behavior and sometimes tics. We realized that during the last week she had had a lot of that stuff (Twizzlers, Reese cups, gummy worms, as I recall). So we decided to cut that stuff out and see if it helped. In 2-3 weeks, it was like day and night. In our search for natural candies, I found a store called the Squirrel's Nest. The owner told me about the Feingold Program, which eliminates those additives, but mostly for behavioral issues - like ADD, ADHD, etc. I became a member which gave me access to their annual publication of "approved" products - that is, those that are free of the colors, flavors, and certain preservatives. I have been a member ever since. Their website is feingold.org, if you are interested in checking it out. We have never gotten a diagnosis of TS - even I have not. However, my nephew was diagnosed when he was young, so I know it's in the family. I have had tics since I was young, but never knew what they were, until my nephew was diagnosed. I was probably about 42 when I figured it out, and coincidentally my daughter was starting to tic around the same time. That was over 7 years ago. My youngest daughter also tics, but we were already on Feingold by the time she started, so she has never gotten to the level that my oldest had to suffer through. Chemar mentioned Corn syrup. That stuff is EVIL !! My youngest reacts behaviorally to CS. The effect it has on some people is unbelievable. And the difficult thing is that they use it in SO MANY products!! It comes in many names... Corn syrup, high fructose corn syrup, fructose, maltodextrin, and more.... Sorry to go on so long!! Any questions, let me know. Jeff

My oldest daughter started at right about the same age, and had many of the tics that you describe. Hers was not related to Strep, though, and we never had to investigate PANDAS. Her tics calmed very soon after we began to eliminate artificial colors and flavors from her diet. We've been restricting those ever since, and her tics have since then been very mild - a non issue. If your daughter eats foods with artificial colors in them, you might want to start replacing those with "natural" products. For example, candies like Skittles and Twizzlers, cereals like Trix or Fruit Loops - all are full of those colors, like Red #40, Yellow #5, etc. Those additives are real tic-triggers for us, and for many other folks. My daughter used to be in constant motion... I could feel her twisting and clenching when she would sit on my lap for books.... After a few weeks of removing those additives, the difference was incredible.... she would sit as still as a rock!! She is now 14, and things are easier, but we still limit those additives as much as possible. I've noticed the difference in my own tics, too. Caffeine and lack of sleep are also big triggers for me. Hope that helps. Jeff

Don't y'all think that this is just another Hollywood "reality show", complete with exaggeration, over-dramatization, and basically not to be believed? Being the skeptic that I am when it comes to these shows, I find it hard to pay any attention... Do you think it's for real ? Jeff

When I tried it, mine was not lemon flavored. (Still makes me gag when I think of it!!) But my tics did increase. Jeff

Hi Lacovcit, The one thing about your diet that jumps out at me is the Fish oil. Many people react to fish oil, including myself. I tried to take it, but found that it increased my tics.... You might try switching to Flaxseed oil instead.... Jeff

Hi We, I think I'd just tell your son that you're very sorry for having gone to the team without his approval. Obviously you did it with the best of intentions, but that you went behind his back, it was a mistake, and you're sorry. You want him to feel "empowered", but yet you did just the opposite of that. Apologizing might give him back some of the sense of control that he feels you took from him by going to the team. Then you just have to move on. He'll have to learn how to respond to the questions..., but they too will eventually subside. Despite the bad side-effects of speaking to the team, a good result is that you've educated a lot more people about TS. He may resent it now, but in the long run, it might turn out to be a big help.... Good luck. On the Feingold note, please feel free to ask me any questions, and visit the Bulletin Board for a wealth of info. I like that you're "easing" into it... otherwise, it can be overwhelming. But it DOES get a lot easier. I think I told you before, that it could take several weeks to see results, and it could even get worse before it gets better.... Jeff

Hi, My daughters and I have tics related to TS. The Feingold program has been very helpful for us in reducing the tics. As long as we keep our diets "clean', our tics are so mild that they are not an issue. We don't follow the FG program as closely as some, in that we haven't had to change our cleaning agents, shampoos, toothpastes, etc. We have eliminated foods that have artificial colors and flavors, and certain preservatives. When we deviate from our clean "diet", we do start to see the tics; but if we get back on track, the tics don't last more than a couple of days. When we first started, we saw dramatic results in about 2-3 weeks. For some, it can take longer, and in fact, many see the symptoms worsening at first, before they get better - something like of a "detox" period. An advantage of getting a Feingold membership is that they provide you with an annual Food Guide, which lists thousands of "approved" products. That helps a lot, especially in the beginning. You can look at their website for more info - feingold.org If you want to try on your own, start reading the ingredients of the foods that your child eats. If you see things like "Red #40" or "Yellow #5", etc., then you should get rid of those, and find a replacement. Breakfast cereals can be some of the worst (Trix, Fruit Loops, etc.) Look for foods that are all natural, but still read the labels, as some marketing tactics can be very deceiving. If you have a Whole Foods nearby, you can usually trust most of what they sell. Buying "organic" foods is usually pretty safe, too. Hope this helps. Changing over to "all natural" foods, can be overwhelming at first, but it becomes much easier after a while. Jeff

Rebecca, I believe that in our case, yes, they are hereditary. I don't know who I got them from, as there is nothing "recorded" in our ancestry. However, my sister's son was diagnosed with Tourette's when he was young, so we do have it in the family. My daughters and I are the only others to have tics, but we've never had to go so far as being diagnosed. When they really started to get bad for my older daughter (age 6-7), we were fortunate to find that they were triggered by certain food additives, and we've been able to keep them to a very mild level ever since (shes' 13 now). They are really not an issue for us now. If we deviate too much from our "diet", they do return, but very mildly, and we can chase them away again by watching what we eat. Most of what we have in the house is very "clean" - it's only when we eat out, or eat too much Halloween candy that we start to backslide!! We are very lucky to have found our trigger. That's the key for everyone - finding their trigger. I've never noticed a connection with beer or wine..., and I've had my share of both! But stress is definitely a trigger for many people. Personally, I feel that, the healthier you are (well-rested, clean food), the better you handle stress, so I usually attribute increased tics with being tired or not eating well - not necessarily to the stress. Chicken or the egg kind of thing... You might want to just look at the list of Ingredients in the foods you're eating these days. The specific items that we avoid (see feingold.org) are artificial colors and flavors, and the three "BH" preservatives - BHA, BHT, and TBHQ. You'd be surprised at how many foods which you consider "healthy" contain those additives (poisons, in my opinion). Keep searching. I'm really glad you found this forum. I'm confident that it will help. Jeff

Another thing you might do is provide Grandma with some all-natural treats that she can give him, or give her a list of things that she can buy and have on hand. Is there a Whole Foods nearby? The 365 brand of cookies have been good for us... There are probably a lot more things to choose from, but we don't have many opportunities to shop there, since we don't have a store near us....