Sheila

Hi -- I'm just getting caught up on the forum postings! Sorry. Many on this forum have had a child with TS (me included) or tic disorders themselves. I really sympathize with your situation; I know it is very difficult--and also tiring to have dealt with them for such a long time--and it can affect your self esteem. But please know that there are lots of approaches that might help you. You mentioned wondering about possible triggers -- have you seen this article? I hope you could please read it. And you may also find parent success reports for Tourettes helpful and encouraging: See here Please read through these and get back to us if anything strikes a chord with you--something that you can connect with as a possibility for your situation. I hope you will see this post and get back to us. Please hang in there!

Hi clairedara7-- and welcome to the forums. I'm sorry to read that you have been dealing with different types of tics for many years. It's not a good feeling to have things happening in your body that you sense you have no control over, so it is very understandable why you feel bad about yourself. But the good news is that some people have found they gain control over their tics once they discover what is triggering them--whether it is something environmental, infection-related, dietary, an imbalance of nutrients etc. So please don't despair. The idea is to approach your condition creatively and not assume that everything is just happening without a cause. For starters, can you think of anything that happened a week ago before the cheek-biting started up again? Did you change anything in your day to day life? Any change in health (cold, etc?) or exposures to something (or someone!) new? Please see our triggers list and think over the (many!) possibilities. Everyone is different so that's why the list is so long based on factors that people with tics have reported. You might be diagnosed with Tourette's based on your history of vocal and motor tics, but that doesn't really change the types of approach that you could consider trying in an effort to figure out why you have this problem. The Tourette's is just a label. Let us know your thoughts, OK? We'd be happy to think this through with you.

Hi -- Did you ask Dr. Mullen for an anti-candida diet that she recommends? As you say, there are lot of diets on the internet; in general it's a restrictive diet but not impossible to follow. (Some people eventually need antifungal medications.) It will be interesting to see how the Alinia treatment works. How long do you need to take it and did she say when you might see some results? About the supplements not causing permanent damage -- i was suggesting you not focus on that. Though people can have negative reactions to different supplements, in comparison to prescription drugs, they are much safer and do not tend to cause they types of long-term serious problems that an antipsychotic, for example, has the potential to do. When you redo your bathroom, it will be important to follow eco-friendly approaches to avoid dispersing the mold throughout the house as it is being torn up, and using nontoxic products in its place. You have a little time to look into that, since you said you are doing it this summer. FYI, high levels of candida and mold sensitivity often go together. Have you tried any dietary changes or noticed if any certain foods bother you? Can you try sleeping in a different area? Not sure how permanent your "move to the back house" is and what other options you may have? if you have to stay in the same place, any chance you can put a high quality air purifier in there if you don't have one already?

Thanks for your insights, Chemar. aja45, have you ever noticed if something makes the tics worse (besides stress, which can aggravate tics in a lot of people). Like something you eat, riding in a car, playing video games, allergy season etc. ?

Hi dswm, I have just now sent you a PM and hope you could please write a PM back to me.

I've sent a note to my contact and still waiting to hear back. What would you think of phoning Breakspear Medical and let us know what you learn -- maybe find out if they have successfully treated tic disorders, or what they offer? It would be helpful to have more info on that clinic. But up to you of course. . .

Hi to shutterbug72 and klgriffin, I'm really sorry for being so long to get to this. I was out of town for several weeks and got way behind on things. I appreciated the thorough description of your son's situation, lkgriffin. You've made some good efforts so far, I think it would make sense to consider seeing an environmental physician. Unfortunately it is not always easy to locate doctors who do the types of approaches described in the book Natural Treatments for Tics and Tourettes, which you said you read. There's one physician listed on the website for the American Academy of Environmental Medicine who does the type of testing and treatment that has been found helpful for some Tourette patients: http://www.triangleent.com/ You might want to consider Dr. Taylor. I don't know of him personally. I note that on his website he discusses 3 types of approaches to allergies. If he brings up LDA, you could let him know that he could double check with Dr. Butch Shrader, but the last I heard it was not necessarily recommended for tourette's. I'm not suggesting that your boy absolutely has allergies, since you said two different tests do not support this. But I wonder if there are as yet some unrecognized sensitivities. And whether he has been thoroughly tested for mold sensitivity. Also since he was found to have low sensitivities to wheat corn and peanuts, you might want to take him off of those for a few weeks and see what you find. You could do one at a time, as is described with an elimination diet (that's in the book). Does he eat a lot of peanut related foods? That might be the easiest place to start since corn and wheat are in so many food items. Dr. Taylor might also have a different method that he uses for testing for food sensitivities versus what you have had done so far. You didn't mention in your post whether you have eliminated scented products and chemicals from your home. (?) Shutterbug72, please let us know if you have found a helpful doctor in the meantime. I notice that Dr. Taylor does accept Cigna, of that is any help. How is your son doing now?

Hello and welcome, HateTS--(good name) First, congratulations on graduating from a very challenging engineering school--it's such a great field to be in. That should serve you very well. You've explained that you have had tics for many years and they ramped up recently while under a lot of stress and eating more junk food. It must be especially hard to deal with these increased tics while trying to interview for jobs. Re: magnesium, it helps many and it shouldn't take long to see improvement if it is going to make a difference--but I'd suggest you need to be doing other changes as well before considering getting off your meds (with doctor guidance for weaning). Magnesium is often just one of a number of supplements that might be needed to balance out. Are you up for making some additional changes to see if they help? Here are some ideas -- see what you think. You need to recognize that your nervous system is over active and you want to do everything you can to calm it down rather than risk aggravating it. 1) Starting right away, eliminate all foods that contain artificial flavors and colors--get used to reading labels if you don't already do that. Look for replacements as needed. i.e., like plain potato chips instead of sour cream and onion flavored. Generally, the less ingredients the better. Preservatives are good to avoid also. 2) Eat organic when possible. 2) Avoid sweets--sodas, pastries, other treats. And don't eat/drink items with artificial sweeteners--stevia is OK. Skip dried fruits and 100% (or sweetened) fruit juice in an effort to reduce sugars. 3) Reduce caffeine intake to 1 cup a day if you drink coffee (Do you?). 4) Start taking a multi-strain probiotic daily--can get this at natural food stores. 4) Don't use any scented personal products. You can find unscented substitutes on Amazon or Whole Foods type places. For example: Unscented after shave Apply the same principle to shampoos, facial cleansers, shower soaps, etc. Many with tic disorders are chemically sensitive--and in any event, the chemical scents are often harmful to everyone. 5) It's good to go natural in the home: no scented plug ins, avoid typical sprays, fabric softener, scented laundry detergent etc. Look for 7th Generation substitutes (they are easy to find and nontoxic). You can also look at our article Finding Triggers for Tics and Tourette's if you want to see lots of things that might aggravate tics. It mentions exposures that trigger tics in some people, certainly not everyone--and not everyone experiences all of these many items! You could look through the list, based on a survey, and see if you see anything jump out that might be related to your tics--something that you have suspected in the past that might have made them worse. Another time we can talk about food sensitivities (like the possible need to avoid or reduce dairy intake or other foods) and allergies. These can play a big role in tic disorders for some people. I hope that rather than feel overwhelmed with these ideas, you can see this as having the potential to reduce our tics and eventually get you off meds, we hope. It's a good idea to keep a journal and track what you are doing and any changes, up or down. Hope this is some help to you.

Hi AHB900, I suggest you take Dr. Mullen's lead on this--yes, candida and parasites can certainly be the cause of tics. FYI different types of mold or other allergens like pollen can aggravate tics (mold need not always be toxic to cause a tic reaction). You mention exposures to these around the time of the relatively recent flare. Treating imbalances shown in the lab tests, as you have indicated, should be helpful as well. Can we assume you have ruled out a viral or bacterial infection, beyond the parasites? Also, I would not worry that you have caused any kind of permanent neurological damage related to the supplements you had been taking. I hope you will let us know how things go and what else you learn. Wishing you all the best with your efforts!

Hi aja45, We are glad you wrote. Yes, throat clearing is also a tic and it can qualify as a vocal tic, the others you describe are called motor tics. It would seem that you do have a tic disorder. That's a general label for what you are experiencing. Do you want to share any other symptoms (physical/emotional) that you may have if you want to begin focusing on what might be causing these tics?

Hi -- I have referred people to this clinic located in London. It is the only one listed in the UK on the American Academy of Environmental Medicine for referrals. http://breakspearmedical.com/ FAQ http://breakspearmedical.com/faqs/ Unfortunately I haven't heard back from those referred, with positive or negative feedback. I will check with someone else in the London area who may have an additional suggestion and get back to you.

I read your latest letter and since it is now very clear that your son has a number of different allergies, it is important to zero in on those. When it comes to allergies, the most important factor of course is avoidance whenever possible. This article from the Asthma and Allergy Foundation of America has good information on what to do if someone is allergic to a pet and keeping it in the house, which seems to be your situation. Here I assume your doctor gave you ideas on controlling dust in the house? I know it might seem overwhelming to have different types of allergies to deal with, but at the same time it should be encouraging that this could be connected to his tics. One thing you haven't mentioned is diet. Did the allergist say about food allergy or intolerance?

I spoke with someone who used to have a water treatment business, including for swimming pools. I hope this is some help in your decision making. She said: Baquacil is an alternative. However, it has a tendency to grow pink algae which is a pain to get rid of as well as expensive to treat. It also has a few other problems and the main complaint is the expense of Baquacil itself. Conversion of the pool back to chlorine is a bigger problem than converting the pool from chlorine to Baquacil. It is tho, a viable alternative. I prefer copper/silver ionizers, either in electrical low amperage probe form or cartridge form. This addition of copper/silver ion bactericides with the addition of pool grade hydrogen peroxide(27%) periodic shocking of the pool is my personal preferred method. The draw back to this process is some blue green staining can occur if excess copper/silver is introduced into the pool. Much is written on the web of the different chlorine-free processes but a word of caution: Chlorine-free salt generators really make chlorine in the pool. So it is actually NOT chlorine free. Many new products and improvements have been made since we sold our pool products division 8 years ago. Maybe someone on your Forum could interview a pool products company and report back if there are any other methods now.

Hi LJsAdvocate, Agreed, the salt water pool is better than conventional treatment but the low level of chlorine produced could still bother some one who is very sensitive. I don't have the answer on Baquacil, but I know someone I can ask. I'll see if I can get in touch with her and get back to you.

Giovanni, it would be good if you could get more information from a doctor who will treat whatever your problem is. Since you have been told it is worms, one possibility is pinworms which can cause the itching you describe. This article has some information on it. Cleveland clinic on pinworms. It also tells how the whole family can help with the problem. Does the itching get worse at night? Some report that is the case with pinworms. I don't know whether this is the issue you are having, but it seems you have had the problem for a few years (right?) and you really need a doctor to treat it. Whatever the problem is, it shouldn't go on this long. You must be very uncomfortable. Are you in a location where you can see a different doctor? Separate from the itching problem, do you have any other symptoms with your tics? Have you ever noticed if something makes them worse--like something you eat? Or on rainy days, etc?

OK, Giovanni, that's good. If you get a chance please get back to us and let us know how you are doing.

Thanks for writing back. Please see a doctor to find out what the cause of the itching might be. I know it must be embarrassing to talk to anyone about, but for example, two things that can cause the symptoms you are having are parasites or a candida (yeast) infection. Both of these can also play a role in tics. Maybe the itching is aggravating your entire system, also. It would be good to first focus on learning the cause of the itching and what can be done to give relief. In addition to the two issues above, there can be other causes for anal itching and it is important to see a doctor to rule other possibilities out. Is seeing a doctor for this something you can do?

Hi Giovanni, Welcome to the Forums. I'm glad you wrote, but am so sorry to read about your difficulties. Where do you live? And over the years, have you ever been able to notice anything that made your tics worse? That would help give us some clue. Please write back, we will watch for a reply. Sheila

Thank you for responding, mcturro. I just wanted to let you know that I am out of town and haven't had a chance to write. But I will soon!

Hi mcturro, It's quite frustrating when doctors insist that allergies can't be involved with tics. They are following the lead they take from conventional medical sources. Unfortunately, the medical community in general, and the Tourette Syndrome Association (which recently changed its name to Tourette Association of America) in particular, has failed to look into this, despite many reports from physicians and the public that link the two, and research that points in that direction. An identical twin study supported the role of the environment in Tourette's many years ago, but unfortunately there has been a real failure of the medical community to explore this important issue. The long-standing message given to the public and physicians that TS is solely genetic is now giving way to more focus on environmental factors. But the progress is very slow. You've really been through a lot already, going from doc to doc and ruling out PANDAS/PANS. Now you need to find answers. We don't know what percentage of people have traditional allergies (like grass allergy, mold allergy, milk allergy) that are affecting tics, nor what percentage have sensitivities to a wide range of other agents that don't fall under the category of traditional allergens. Toxins also have the potential to affect tics. Your pediatrician might say the same thing about pesticides as he did about allergy just because he hasn't read a study about it. Yet it is such common sense that most pesticides function as neurotoxins and directly impact the nervous system with the potential to cause tics, tremors, seizures, and more. . Resourceful parents like you are left to forge a way on your own! Thankfully you have the motivation and open-mindedness to do so. Yes, thankfully some people appear to outgrow their Tourette's. Many people also outgrow traditional allergies (and food reactions, as Wombat pointed out). Yet at the same time, some have allergies that surface as adults after not being troubled previously, and some adults develop Tourette's for the first time in the their later years. As you would know, allergic response can depend in part on what part of the country one lives in at a particular time, whether someone moved from a clean house to a moldy house; there are so many factors that aren't on people's radar when they find that tics or allergies are getting better or worse. Hormones can play a role as well. One major exposure to a toxic substance can render a person hypersensitive to low levels of exposures.It can be very individualized, and not easy to sort out. Dr. Doris Rapp released an excellent book a few decades ago called Is This Your Child? which had a subtitle about discovering and treating unrecognized allergies in children. She was the first to widely promote the concept that children could be reacting in a negative manner--both in behavior and in academics--to foods and allergens/chemicals in the environment. Dr. Rapp included symptoms of Tourette syndrome in her findings. When parents--and doctors such as the two you went to--don't "recognize" that there is a potential for a connection to tics and allergies/toxins/foods, then they don't look for the connection nor do they ask families about any connections they may have observed on their own. And worse, they often discourage parents from looking for a link between tics and environmental exposures by telling them it is a waste of time. Meanwhile these doctors have no helpful answers to give when it comes to tics. We never say that everyone with tics or Tourette's has allergies. But we do know that for many people, there is an important connection that should be looked into--and that learning about this can be very helpful in treating the symptoms of Tourette's and avoiding exposures that can aggravate the symptoms. If there is no connection, then so be it. But if there is, learning of it is a real godsend. You could share these article summaries with your pediatrician since you said he likes to read. The first was a small study, the second was large. Association of Tourette syndrome and obsessive-compulsive disorder with allergic diseases in children and adolescents: a preliminary study RESULTS: While only one-fifth of the control subjects had allergic diseases, more than half of the children with TS and/or OCD had comorbid allergic diseases. Positive skin prick tests were greater in OCD patients compared to control subjects. There were no significant differences between the groups in terms of eosinophil counts or IgE levels. Among the allergic diseases, while allergic rhinitis was diagnosed at significantly higher rates in TS patients, eczema was significantly higher in OCD patients compared to control subject. CONCLUSIONS: This preliminary study shows an association between allergic diseases and TS and/or OCD. The results revealing differences in associations between types of allergic disease (rhinitis or eczema) and neuropsychiatric disorder (tic disorder or OCD) need to be investigated in further studies with higher numbers of participants, and immune markers should be examined. Here's another one: Correlation of Tourette syndrome and allergic disease: nationwide population-based case-control study. CONCLUSIONS: Our data showed significant correlation between allergic diseases and TS. Risk also increased with number of allergic comorbidities and with age. Further studies on the mechanism of neuroimmunology of TS are required. - - - - - - - Hang in there and please don't feel lost. (You can feel overwhelmed though, we all did in your situation ) And don't feel hopeless. With the right doctor you can move in different directions and find more answers. The professionals you have been to simply couldn't help you. But there is much help to be had. Do you want to tell us more about your child? .

Well, Wombat -- Since you began with pizzas I thought I'd share this link. It's got 15 gluten-free pizzas. For dairy-free, people will need to substitute for the regular cheese. I haven't tried all these but there's quite an assortment of crusts! See here. Thanks for starting this thread! I'll keep an eye out for other recipies.

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding. A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member. Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages. What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page. We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all. Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues. We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.

Hi -- the patches contain no medication of any kind, nor do they have any electrical/battery component. They are specially designed patches that the company explains on this page: http://treatnystagmus.com/faq.html They are considered harmless, without known side effects. I hope that helps!

An online cognitive and behaivoral program (tichelper) is associated with Dr Doug Woods. It has a website http://www.tichelper.com but for the last several months has said "coming soon." So we don't know when it will be available to those who may be interested.

Hi -- I had asked about the allergy drops, wondering if maybe they needed to be updated in strength (up or down) as sometimes that can be an issue over time. But you have described multiple testings over the years. Thank you. How is the food journal doing? Have you seen any connection with foods and symptoms? It's good that you had a few tic-free days when you had first written. That's always encouraging, because you know that your goal is to achieve that state once more, and that it can happen. How have things been since then?