Sheila

Rick, just checking in to see how things are going. I hope some answers have emerged. Yes, complex tics can be transient. The labels are a bit arbitrary. The national Tourette association wrote in a published guide "The difference between Tourette syndrome and other tic syndromes may be no more than semantic especially since recent genetic evidence links Tourette syndrome with multiple and transient tics of childhood and can only be defined in retrospect." The labels don't really tell you much. But of course we wish your child's tics to go away quickly. The main thing is to focus on the current symptoms and try to find causes for them, along with ways to calm your boy's nervous system. Have you learned more or had different experiences since writing? Do you need help finding an integrative physician in the UK?

Hi ijenk, I guess the answer to this is not enough! Also the focus has traditionally been on genetics and drug therapies, with some more recent attention to cognitive behavioral therapies. An international effort is now underway to look collaboratively at genetics since decades of research have not yielded definitive answers. Research related to diet, toxins, the immune system and allergy -- as well as other environmental factors -- all areas that parents and some doctors have flagged as key players in different people's Tourette symptoms have received little funding or interest. Clearly much more needs to be done!

Hi karol_dr, Did you get a chance to try the Food Detective blood test and get any results? We haven't had much feedback on it on our forums, though of course many people play "food detective" on their own. Since you were determined to be low in minerals, as you know, there are a number of types of magnesium supplements. One to consider, which it appears could be ordered from Poland, is a liquid by Carolyn Dean--ReMeg, along with ReMyte for a mineral complex. Can't make any promises, but you might find it useful. See on right side of page for link http://drcarolyndean.com/natural-health-resource/ They are more expensive than some more common types. Did you give the no-gluten effort a try? Please let us know how you are doing.

Hi Tiger, for practitioners in the UK, I hope this list could help--please scroll down in this thread: http://latitudes.org/forums/index.php?showtopic=24266 Let us know if you find any help with this list, OK? Hoping so!

Hi --Sorry things are so rough right now. I had replied on a different thread before, and you mentioned that you were going to start making some dietary changes, eliminating artificial additives and reducing sugars. How has that gone? Do you see any difference--though this could be just a small part of what is going on? I'm glad you have the book Natural Treatments for Tics and Tourette's and you could start making sure your home is free of typical toxic chemicals found in cleaning products, scented detergents, etc. If you read the parent letters in the book you can get an idea of things to try. I know it is hard to look into things on your own while so emotionally involved with your son's problems, but see if you can do a bit each day. In general, there are doctors who accept the fact that environmental triggers including infections and foods have the potential to cause inflammation in the brain, resulting in tics and other behavioral issues, and other doctors who don't. Could you travel to Hurst, TX?

Hi Joy, sorry for the delay in getting back to you. And welcome to the forums, we are glad you got in touch. It sounds like your boy has been in a rough situation if Haldol was prescribed, and I know it's been hard for you too. I'm sorry he has been getting worse, and I understand your concern that he will be entering 5th grade. There are many things that need to be addressed if you want to try to heal your son. The fact that his stomach is often upset is an important symptom that needs to be explored. You also say he has allergies, plus you have noticed that red dye causes ticcing. These are all clues to his condition and there are no doubt other important symptoms also that have not yet been looked at. I believe you need to see a physician to help you sort things out, and yes there are doctors in Texas. I don't know where you live...please let us know and I will try to find doctors who may be able to help. You boy's case is too serious for you to try to tweak things on your own--you will need professional help given his medication history. However, there are things you could start doing now to help him. I also recommend that you read my response to ijenk and see how many of those items you can address. . I'll be watching for a response from you as far as location. I may not get back to you for a few days, but I will!

Hi Betzim, It's good to read your note that your child responded well to Clonidine with only fatigue as an apparent side effect. It sounds like it really helped him. As a rule we don't discourage medication use, though we don't focus on it on this Forum since there are so many other websites that do, and most parents hear conventional options from their physician. One of the problems we have seen with TS medications is that unless a child has had a thorough medical evaluation that rules out chemical sensitivities or metabolic imbalances/immune issues, the child may be more likely to have negative responses to a drug that others may tolerate better. Some of our readers have had significant negative reactions to TS drugs including Clonidine (potential side effects here. And here). Hypersensitive kids, as many TS kids are, may fall into the uncommon or rare reaction category more often that others. Also, Clonidine has not been well tested for use in children, and this little boy is only 5 years old. So there is an incentive for the parent to try to find out what the underlying issues are in the event that they can be corrected. That said, I'm genuinely happy for you that your child is doing so well. There is always a place for medications.

Hi Tiger, To answer your question about Irlen Syndrome, works a lot with photosensitivity. See this link here. (hope it works, let me know if not please) And yes, it has been connected to tics. This shuld be worth looking into. I've seen some of your other posts and I know you have already made some excellent efforts for your child. Please see the information on REPREEVE (there is presently a thread above yours, and here is an article from our recent newsletter about REPREEVE. I'm sure if you contacted them they would be happy to send a trial set to you, since it seems to help some people with eye movement (and tics) Are you in England or Australia? Those are simple places to start. Do you have access to professionals who could explore assessments to look at imbalances or toxicity that might be partly responsible for visual hypersensitivity? There should be a way to get a handle on this.

Hi ijenk, Welcome to the forums! We're glad you took the time to do your first posting here. But, sorry to read of your more recent tic issues. Let's hope we can all help find some answers for you. You are right, that tics usually get better with age, though not always. But your difficulties could have some different sources. There are a few places to start. 1) You can look into a specialized dental appliance that would be different from the type of splint you are wearing. (Where do you live?) Some people with tics find these appliances can greatly reduce tics. 2) I would see an osteopathic physician who specializes in manipulative therapy and craniosacral therapy. I can help you locate one, (hopefully--again, depending on where you live.) It is possible that your accident could be playing a big role in this. 3) Do you have our book Natural Treatments for Tics and Tourettes? It could give you a number of approaches to help calm down what is happening. 4) Are you aware of an infection of any kind that coincided with your flareup of tics? 5) Did you happen to move homes, change office locations, get a new car, or any major change at these rough times? Or any remodeling or painting going on? 6) Starting immediately be sure to cut out all artificial flavors, colors and preservatives/nitrates from your diet if you have not already done so. Bite the bullet and be strict. 7) Do not use any scented products in laundry, cleaning etc in the the home and look for unscented personal products. Think of your nervous system as overly sensitive and you have to avoid any chemicals that could possibly aggravate it, in food, drink or surroundings. 8) Reduce sugars and caffeine greatly, the more the better. 9) Consider going off dairy for 2 weeks and see if you feel better. Other dietary efforts can be considered. (Trying not to overwhelm you. Ha.) 10) If you find from testing that you are allergic to dust, mold, pollens etc please do let us know. There have to be some answers to what you are going through.We sympathize with how difficult it must be. Please get back to us about these ideas when you get a chance.

Hello karol-dr, Thank you for your post. And congratulations on your upcoming marriage! I'm glad you have our book, and hopefully it will give you some good ideas of things to try. Do you live in the USA? I'm asking because different food tests are done in different areas. If you want to know for sure about wheat without a test, the best thing would be to eliminate it totally from your diet for 10 days or so, and then eat a significant amount of wheat products, watching for a reaction. For people with serious allergies, they do this "challenge" in a doctor's office in case there is a major reaction.) Some people use a standard blood test for gluten, but even if the results are negative it doesn't mean that gluten or wheat might not be troublesome. I'm wondering since you are an adult who has been dealing with this for a while -- have you ever noticed anything that makes your tics worse, besides stress or fatigue? Certain foods, personal products like cologne, driving in a car, etc?

Anne Linn, Welcome to the Forums! Your post was read with interest and I'm sorry your son is having so much difficulty. In general, there is not random pain for people who have symptoms of Tourette's. Usually the pain would be associated with the tic itself. Like if your son had been jerking his neck, or if there was pain from his repetitive mouth-opening--or whatever you say he is doing with his neck. He may also be tensing parts of his body that you can't easily see (or didn't mention in your note.) You might want to see a skilled osteopath or other practitioner who specializes in manipulation or cranial work for an assessment. Also you mentioned a number of things that you are doing after reading the book. That's great that you have been making some changes to see what happens. Please be sure to eliminate scented products and the use of any toxic cleaning/detergent type products in the home. If you would like to let me know where you live and are interested in finding out if there is something physical going on--if you want to try to find a practitioner who can assess him, as mentioned above, please let me know. Also, I am sending you a private message (PM) through the Forum. Please look for it, OK?

Hi JoJo Mama, Thanks for sending the additional information. A few thoughts -- 1) It would be good to have her pediatrician find out if there is an underlying infection 2) Because she had chronic ear infections which were presumably treated with antibiotics at times, she could have an issue with candida and leaky gut -- a case of the antibiotics upsetting the flora in the digestive tract. Probiotics are recommended for everyone, but especially for people dealing with a leaky gut. 3) I would skip the Thieves cleaner (just because you can't know if it is aggravating things) and use an unscented cleaner from Seventh Generation. 4) If you are serious about wanting to avoid medication for tics, should remove all artificial flavors, colors and preservatives from her diet. I'm sure she has favorite foods, and you can substitute those with other items. For example use regular potato chips instead of ones with added artificial ingredients. Get used to reading labels. You should also reduce her sugars as much as possible. Please make the dietary changes and see what happens. You may feel that she used to eat x, y, z without any problem and you don;t want to take things away from her-- but she is in a more sensitive situation now. Plus the additives are unhealthy for everyone. You need to be giving her a wholesome pure diet. Once you have cut the additives out, you can see if there might be other foods that bother her. But in any case, no artificial flavors and colors, and avoid preservatives. OK?

JoJoMama, We know what this is like, trying to figure things out--and we sympathize--but as Chemar said, you've done a lot, and should be commended! Chemar's questions are good -- please see if you can find time to answers those, and then we will be able to have more discussion. Is your daughter off all artificial colors, flavors and additives (like preservatives)? While you are changing your home products, be sure that they are not just paraben-free, etc but that they are completely unscented. All products. In addition to the possibility of an infection being involved, it would make sense to explore whether mold and/and chemical exposures could be involved, at school or at home. We'll watch for a note back with more information from you. We're glad to have you on the Forums and will do our best to help. Hang in there.

Hi Bans, Welcome to the Forums. Sorry you are dealing with loud vocal tics in addition to motor tics. I'm sure some of our members will have ideas for you. Meanwhile, could you check this article and write back to tell us if any of these items in particular have ever been noticed by you as as being troublesome -- like they made your tics worse for a while? Here is the article Looking forward to hearing back from you!

Hello Lucy, this sounds like so much for you and your family to deal with after moving to New Zealand. So sorry, and I sure hope you find answers soon. Question--when you say you moved to a "new house and new school" can you please describe those? Are either of them truly new--or recently remodeled or updated constructions? Also, is it possible that either of the locations is moldy? I'm asking because it is possible to have the symptoms you have described from a significant exposure to mold, or to new construction or new items in a home/school -- like paint, carpet, cabinets with outgassing of formaldehyde etc. if your son is hypersensitive to these things. Does your son (or your family) have allergies--or has he ever seemed overly reactive in any way to foods or exposures? I'm not suggesting that's the issue, but it would make sense to try to think of all that is different in your new location, if he did not have problems before moving. As you probably know, a diagnosis of Tourette's is not usually given until after 1 year of verbal and motor tics. But in any event, the main goal is to determine the underlying cause of his symptoms. Many who have symptoms of Tourette's are actually experiencing an immune reaction that is causing inflammation in the brain--and allergies, food sensitivities, and chemicals can all play a role. That said, if the main issue is PANDAS or PANS, you would want to start treatment as soon as possible. If you google enuresis magnesium you will see that some have found a connection between magnesium deficiency and enuresis (I recognize your son's situation goes beyond classic bed wetting). You could begin supplementing with magnesium and giving Epsom salt baths now, as tics are often improved with magnesium regardless of the diagnosis. We are looking forward to hearing back from you, Lucy.

Hi MatthewsMum, Please feel free to post the list. Maybe it will be good starting point for people. I still haven't heard back from my contact (but it was in London area). Will ask again. I'm sorry your boy is still struggling with the tics. Since he complains of stomach issues, have you tried taking him off dairy completely for a three week trial, regardless of what testing may or may not show? Have you ever noticed that he is worse after certain foods--or any exposures? (Love Scotland, my mother was from Glasgow. Where are you?)

I just provided a much needed update to this section. All ten articles in the series of Why the Tourette Syndrome Association Should be Investigated are now included.

Hi -- I'm so glad you have seen some improvement in your symptoms with the dietary and nutritional changes you have made. That's good news. (Sorry for the delay, have been under the weather!) I know it is really hard when stress makes tics worse.You probably know it's a very common complaint, but that doesn't make it any easier to deal with. You asked about anti-anxiety medications. Some people decide to use these and find they make a positive difference; they reduce their stress reaction and as a result tics improve in some situations. Others, however, have reported distressing side effects from these meds and they wish they had never tried them. We can't predict how you would do on anti-anxiety meds, but since you had a negative physical reaction to the one you tried previously, be sure to begin on a low starting dose if your doctor recommends one and you decide to try it. There are a number of supplements that are helpful for anxiety. As an example, Dr. Ray Sahelian summarizes research on some of them. However, as always, individual responses can differ. Since it sounds like you are on conventional meds, I would be careful about using amino acid supplements without checking with your doctor. B complex vitamins are often used to lower the stress response; you could consider a good quality supplement if you aren't taking one. Approaches like cognitive behavior therapy, relaxation sessions and meditation can help anxiety, of course--working with the body-mind connection. Meanwhile, congratulations on making some dietary changes! Give yourself a pat on the back for that. Glad to know you have started label-reading. Amazing what you can find, right!?

Dealing with low self-esteem and confidence is one of the most difficult things when tics get worse, as you are describing. Try not to get down on yourself. I know that is easier said than done. Once you start to see some improvement, you should be able to start turning things around. I hope you will let us know how things go. We hope you will begin to improve with the treatment your doctor is giving you (and changes once you can get away from the mold).

Hi AprilP, I'm hoping some of the others will have something to share on hypnosis for tics, with or without Dr. Lazarus. I'm going to send you a private message, so please look for it.

Hi -- We know how scared you must be, and your young son as well. Chemar was asking about any illness or infection because when tics start up dramatically like this it can be due to an infection that is affecting the brain and central nervous system. That is called PANDAS or PANS. (You can see our Forum on this site) What do you think about that--might there be a connection? Have kids at school had strep or other infections that you know about--or family members? Did they do a strep test at the ER? A bacterial or virus can causer reactions like this. It could also be caused by a major environmental insult (like a toxic chemical exposure, major mold exposure at home or school, a pet that he is highly reactive to, a change in medication etc). Since you say he has allergies, this avenue is a real possibility--or a combination of factors could be involved. In the meantime you can take some basic steps to try to calm his nervous system. We can share more on that. As you point out, he was healthy and fine 6 weeks ago. His body just needs to return to that state. Hang onto that thought. We want to stick with you until you find some help. Please write back. Where do you live?

It would be good to think back and try to figure out what was going on when you first had tics start up 5 - 6 years ago. Had you moved to a new location? Start a new job? Were you sick with a virus or strep,etc -- if you can remember. It would seem that something must have happened for them to start up. And then people often find things that trigger them, make them worse. You might want to read this article on triggers, if you have not already and see if anything makes a connection with you--usually things a person with tics doesn't think about unless they start to focus on them. See here.

I can see you had a lot of things happen at once. Hopefully you will be able to sort it out. When you said supplements, I wasn't thinking of muscle-building supplements. But again, I don't think you should get discouraged thinking there is permanent damage from them. One thing--when you were in Mexico, did you ever notice if they sprayed for mosquitoes or other pests while you were there? Or did you smell pesticides in your hotel room? I was only in Mexico once, about 6 years ago, and I remember being so shocked that in the area we were, they sprayed really strong mosquito pesticides from low flying small planes right while we were all standing outside. I don't know how often that happens, but I wonder if you had any kind of chemical exposure while there. Just a wild thought. As a general comment, after a significant exposure to a toxin, one can then be less tolerant of low levels of allergens or other substances that might not bother you otherwise. I'm not suggesting a toxic exposure was the issue with you -- something else, like parasites if that pans out, can set things off also. Just crossed my mind. About the paleo diet, there's a simplified reference on what you can and can't eat from WebMD. It gives you an overview. See here Once you have a handle on the basics, the Practical Paleo book that was recommended to you by Dr. Mullen should make sense. It's a definite lifestyle change and yes, it would be considered anti-candida (though it goes beyond that in some ways). Please keep us posted on how the anti-parasite treatment goes, OK?

It's good that you have a sense of what set things off. If you want, you could explore nutrients to reduce the stress response should you anticipate a stressful time again. This article from Life Extension covers a number of them. See here. (This site sells nutrients but their information is usually research based.) Thank you for getting back to us!

It may be, as mcturro pointed out, that a therapist could help. How old is your son? It is not unusual for kids with tics to self-medicate: for self-esteem issues, to fit in with peers, wanting to take things that make them feel more socialable and less self-conscious. And as you may know, pot often helps reduce tics. So, his actions are understandable while also being a nightmare for you and your family. I would agree on getting him -- and you--some professional help. Help for you, for ideas on how to deal with this situation--preferably someone who knows your community. And help for him, either to be prescribed some medications that you can hopefully control (and he could get some privileges back) and/or for him to better understand his situation--and the legal implications and consequences for what he is involved with. It is quite possible that he is depressed or has anxiety issues, as has been suggested, and you may be in a situation where you can weigh your options with prescribed medications versus what is happening now. This is such a difficult and frustrating age to deal with when kids start into behaviors like this. How have things been lately?