Sheila

This is a good suggestion, James. The pre-test (with tongue depressors or similar approach) can often reveal whether this might be a good connection. it is not always a foolproof assessment but worth considering. We have a number of posts on this on the forum. Go to the search box and put in Stack. All threads related to an appliance are not under that search term but you will see lots of feedback and can then search for related topics if interested. It can also help to have a jaw assessment by an experienced chiropractor, an osteopath specializing in manipulation, or an expert cranial sacral therapist who could assess the situation and possibly make adjustments. It would be great if both of you will keep us informed, and we sure hope it goes well.

Bernerchio, your efforts really are inspiring, and I love that you have a nutritionist guiding your steps. That can make such a difference. You have the determination it can take to bring about change. For some it is a simple fix, for others it takes a wider approach, as you are doing. For the light sensitivity, you might want to consider getting him tested by an Irlen specialist. I know you mentioned some improvement in this area but he might respond to Irlen filters (you can also search Latitudes.org for info). When there is a connection to specific light wavelengths, they can address that -- which removes some of the visual stress. His sensitivity sounds quite significant, as you described it affecting his gait. (I'm glad he could manage the books without much blinking!) We really appreciate you keeping us updated on your approach and the results. It will help many people. Will watch for more news!

Jacky, for sure we hear about those specific items triggering tics. There are many such accounts on this forum. Also consider whether your little daughter is in her bedroom more at night around the time you describe, and whether that might be any clue -- lots of people find their kids react to a dusty room or bedding/mattress, or other issues in the bedroom. How is she when she wakes up in the morning after a good rest?

Hi Patty, sorry I didn't answer this, just missed doing so. Sorry but I don't know the answer regarding the liver. "Reaching" is usually a good thing to do when trying to find answers! Acupuncture sounds good -- and the biotin. Are the acupuncture treatments focusing on the liver? I hope you come up with the connections you need. By the way, it was so fortunate that you found a NAET practitioner who could help his vocal tics. Sometimes it works for people and sometimes it doesn't, and the skill of the person doing it can make a big difference. ( If it is someone you would recommend, would you please send me a PM with the person's name and location future referral purposes.) Anything else new at your end?

Hi Jacky, welcome to the forums. How has your daughter been doing after starting no dairy and sugar? Any change at all? Any other association or change in her life that you can think of besides having a cold (that humming started after)? Hopefully some answers will be forthcoming. My son had tics (resolved) but humming was not one of them, so I am jumping in here but not able to give you a personal experience. Please do let us know how things go.

mrbeanhq, for a full list of items without additives you could get a membership to the Feingold Association. They have a lot of info on their website for free, but the membership could be well worth the cost since your child is sensitive to many additives. In addition to membership benefits described on their site, they publish a comprehensive additive-free food and shopping list for an additional cost that they update 4 times a year, which saves you reading labels (and they even search out ingredients that might not be on a label.) It also addresses salicylates mentioned by Chemar, above. Something to consider.

mlee, the time frame can sometimes depend on what someone is intolerant of but typically a few weeks should be good time to start seeing progress. It has been a week for you now -- are you seeing any change? It is good you could have someone develop an eating plan, it can be hard to figure out on your own when you have some classic (common) items as you do. We will be anxious to learn more -- and what aspects of the new diet are most challenging or hopefully easier than you expected.

Thank you for your response, Chemar. I agree with everything you said. It is unfortunate that there is so much misunderstanding and misinformation about this topic. Confusion might be a better term in many cases, and there is not an answer that fits everyone. But most on this forum would agree that the doctor should have pursued it, if nothing more than to rule out a possible connection. Yes, it could be good to post your situation on the PANDAS/PANS site on this forum if you have not already done so. Please let us know how everything turns out or if you find new answers. Glad you can get mattress dust covers -- they make them for the mattress and for pillows.

How are things going now, jcmom?

It's great that your son's teacher has developed a secret hand signal for him to leave the room to calm down. And I see your note about two of your kids being in their 20s. What did the infectious disease specialist say last week? A national organization had some trigger suggestions for eczema, which you said you were dealing with. It's a good reminder to go natural throughout the the home, not just with personal products. For the mattress, after you have it cleaned, Amazon carries hypoallergenic covers that can be a help (other stores have them as well). Most comfortable ones have cloth material on the outer layer. Looking forward to hearing back, Sheila

Hi mlee. I like LifeExtension.com for a quick review of some nutrients. Although they are selling product, they offer reviews from the literature. This might be helpful to you on L Theanine Click here.

bernerchiro, this is encouraging! Thanks for the detailed report. I can imagine that a monster truck show would be very stimulating. Please do keep us posted on the nutritionist and anything else that come up.

Hi capreva -- as you probably know, Intuniv (guanfacine) is used to treat high blood pressure. Links below show a 2017 study for which it was not better than placebo and the researchers did not recommend future study on it for a chronic tic disorder. The other link shows you potential side effects. This is not to say that it can't help someone, but the evidence was not strong for recommending it. FYI Latitudes.org is not against use of medications, I'm just sharing what recently came out about it. Hope that helps. (And welcome to the forums!) Recent study suggested not useful for chronic tic including Tourette's Side effects

This is so encouraging bernerchiro. I hope you will keep us posted. I know it can be a challenging diet to follow but if that is an important answer, it will be so worth it! You are paying close attention to symptoms and foods, and that is what it takes. Sounds like you are doing a great job We would love to hear about the nutritionist after you meet with her. Please let us know how it goes.

Hi gaga -- so sorry to read of all these difficulties with your son. Hopefully he will get counseling to rule out any serious issue having occurred. A spine exam is a good idea. When there, find out if that person is familiar with nutritional supplements and testing for food allergy; some chiropractors are, some are not. Where do you live? A doctor who specializes in nutritional imbalances might be able to help. Also, if this came on on suddenly, do you think there is a chance he has an infection of some kind? Diet can make a big difference to help support the emotions. Are you able to make sure he gets wholesome food (skip the junk food!)? I know it can be so concerning to see your child go through this. He needs help and I hope the headteacher can point you in the right direction.

Hi vlada_s, thank you for sharing on the Forums, and welcome. You have done all the right things with seeing doctors. that is good to read. Sorry no one got back to you; long messages sometimes get overlooked. Today should be the day for the allergist, right? Please let us know what the allergist says, OK? In my book, which you said you have, there is a section on lab tests (by Wm Shaw) and perhaps the doctor would consider some of those. You will want to be ruling out any toxins, if possible. You are right to be concerned, but do not assume that this means your little girl will develop Tourette's. There is no reason to assume that. I always remember a mother writing how her little boy's tics were so bad that she had to carry him. It turned out he had been exposed to arsenic in pressurized wood, and once he was detoxified for that, he was OK. There are so many things that could play a role in tics, and you want to look into them. I'm surprised the neurologist did not do anything in the way of evaluations. Please do get back to us on what the allergist thinks. And hang in there, there must be answers for your daughter. Question: any chance there is mold in your home?

Hi Marie, For starters, your pediatrician or naturopath could order blood tests to look for a bacterial or fungal infection. But I am not saying you need that, it is a decision the practitioner could make, and he or she might decide on other types of tests as well at some point. Did your son have a cold, sore throat or any illness before the tics started in November? Can you think of anything that changed in November--home, school, activities? And does he have allergies, or do you have them in your family? If your naturopath is experienced with food sensitivities, you might want to let that person guide you on diet at first, to avoid frustration at your end or feeling overwhelmed. For milks, a lot of people find that types like almond, almond/coconut, or rice milk can take the place of regular milk. You can get more ideas from your practitioner when you go for test results. How is your journal keeping going--have you been able to note any positive change yet? Remember that everything does not revolve around diet only, although it can certainly be a major, important player!

Hi patty, We have not had reports, to my knowledge, that link Tourette's and hair loss at an early age as you describe for your son. I know you and he would very much like an answer for that. Off the top of my head -- not as advice based on experience -- you could consider consulting an endocrinologist re: the hair loss to see if there is a cause that has been missed or options besides Rogaine. Have you done that? I imagine you are reluctant to consider a strong medication given the other symptoms and allergies you describe. I checked on the internet briefly, as I am sure you have done more thoroughly, for a connection between Gilbert's Syndrome and hair loss, but only read a couple of comments from doctors that suggest there is not a connection. Of course that is not definitive. What are your thoughts on that? And how is your son doing otherwise? Well, I hope.

Hi Kimfocusinmind, To date no one has posted on this herb but perhaps someone will write with their experience. As with many healing herbs, gotu kola has some documented benefits, including reducing anxiety, but some caution is also needed. Here is some information on it, see an excerpt below plus the full article from Penn State There are many types of gotu kola preparations and it could be best to consult an herbal specialist if using it. It seems Anthony, the MedicalMedium linked by you in your post, only suggests it along with a lot of other conditions it might help, not as a highlighted treatment for Tourette's. For readers who are not familiar with Anthony, he is considered by some to be a modern day Edgar Cayce, having received health messages from "the spirit" since childhood. He claims to have insight that is "decades ahead" of modern medicine. What follows is simply shared for your information. Though I have seen his books, I had never listened to him speak before and was far from impressed with his rambling message on Tourette's. I just listened to a 55-minute radio presentation by Anthony on Tourette syndrome. He made some points that could have been reduced to 5 minutes, and I provide those below. (Gotu kola was not mentioned.) Anthony's opinion of Tourette's, based on this recorded 2017 radio presentation: He says the cause is mercury exposure. The toxic mercury is passed on from parents, making the condition "appear genetic." And beyond that, new mercury exposure continues once a person is born and it adds to the amount one is born with. His suggestions were: MSM, leafy greens, vitamin C, L-glutamine, lemon balm, B12. Plus, avoid too many fats including nuts; eat plant based or very little meat. [Gotu kola was not mentioned]. He recommends a heavy metal detox smoothie every day. However, note that some with a salycilate sensitivity would not tolerate his smoothie.

Hi motherof3, we are glad you wrote and welcome to the Forums. What is the date for your PANDAS evaluation? It sounds like you have already started some key dietary efforts. Even when PANDAS is involved, it can be helpful to avoid potential triggers as you figure things out. It takes time to get accustomed to different terms, like additives. Just do the best you can at this point and look for foods with simple ingredients. The Failsafe cookbook will avoid salicylates, which may or may not be an issue for you. I raised 3 kids, one with Tourette's, and know you have your hands full. Trying to figure out triggers adds to your stress, I know. Have you been able to keep a detailed log with what is being eaten and how symptoms are--as well as other exposures? That can be the key, because you can be closing in on some triggers when other issues come in and confuse things on a day to day basis. You mention sensitivities to a detergent -- it seems an allergic issue could be part of the picture. Is your family allergic -- and has anything changed in the last several months? Like a new location, renovations in the home, different school, new pet, etc? Steam cleaning furniture that needed it is a good idea (without scented products, as they often use!) When looking for triggers, it can be helpful to see a naturopath or doctor who understands this type of approach and is familiar with nutritional approaches that can support the nervous system. It can be difficult to go it alone. Is that a possibility? Sometimes there is a significant underlying problem, whether an infection or allergic reaction, or nutritional imbalance that is tipping the scale. Could you let us know a little more? I apologize for the late response to your note! I look forward to hearing back from you, Sheila

Hi Anna, We are happy to have you join the forums. I can see why you have been so concerned about your boy's tics and his running. It sounds like you have done a good job of keeping track of what he has been reacting to. About the salicylates, have you had a chance to read the thread by KevinMA : Detox diet - blogging our journey ? It was just updated today so you will see it near the top of the list. I mention it because he discusses salicylates and maybe it will give you some ideas. You have seen several issues improve, but now notice this hypersensitivity. It is impossible to say what exactly has been going on. But it seems his gut/stomach problems that you have described are a key. Are you able to see a naturopath or someone (perhaps outside the standard medical profession for which you say there is a long wait) who could help you with focusing on that? Other areas that everyone needs to rule out are potential environmental/toxin issues, allergic reactions, and and underlying infection. Please keep in touch and let us know how things are going. Others may answer who have experienced some of the situations you described.

Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction. You can also ask this person for suggestions on nutrient supplements. Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. If your son has a problem with gluten-- and not everyone with tics does -- it can take some time for improvement to be seen. I would give it a couple of weeks, and even then do not expect a dramatic change immediately as it can be a gradual change, and there may be other issues going on as well. Our organization has a new book out on tracking down triggers for tics. You might find it useful. Also, I think it would encourage you, because you asked if people are able to get the tics under control, and yes, many do and some of their accounts are in this book. But it can take a comprehensive effort, not just one or two things that usually bring about all the change. Have you already had a chance to make other changes in the diet like avoiding artificial colors, flavors and preservatives in food and drink? What we have found is that a three-pronged approach can often help: 1) dietary change, 2) avoiding allergens (is your child or immediate family allergic?) and 3) avoiding toxic products typically used in the home like bleach, scented products, pesticides. In addition to the above, you want to be sure there is not an underlying infection. Please get back to us and let us know a little more and also what the naturopath suggests about the food testing. And you should definitely have hope! You have already taken some very positive steps.

Hi jcmom-- I'm glad you found something that is helping your son. Is he still doing better with this? Collagen has a large amount of glycine, which plays a role in muscle development. Collagen also affects the nervous system. For a medical explanation see here. I saw an article that suggests the supplement may help improve the health of the gut, which we know can be linked to behavior and tic problems. However, it is not proven. Dr. Mark Moyad, who is quoted in this article, suggests that contamination can be a problem because collagen can be derived from a number of types of animal/fish parts. However, the brand you are using is suggested as safe Full article is here. I hope you can please let us know if you are continuing to see improvement, and if anything else has been tried at the same time. (?)

Hi Mombear--welcome to the forums, though I'm sorry it has to be when you are dealing with these difficulties with your son. I know it is so concerning. I would suggest that you may need a professional help deal with some of the issues you have described. The good news is that you have seen a connection with the immune system and allergy, which conventional medicine does not explore for most tics. At the same time it can be difficult to figure it all out by yourself. To answer your question about any one else having success in eliminating tics, yes --my son's problems started with major eye-rolling but we had no idea at the time about allergies--which did play a big role. Chemical exposures also affected his eye-rolling. We were able to learn that allergies were affecting his nervous system; gut problems were involved; and he had chemical sensitivities, had a special allergy approach, and he needed nutritional support. He is fine and has been for many years.. He had a serious case at its worst. I see you are working on getting good nutrients into smoothies.Good for you--it sounds like a challenge. I hope that you can also avoid food additives in what he eats. Have you tried excluding them yet? Try to follow all the allergist's suggestions for having a natural and clean home, free of allergens and toxins. It would be good to learn if he has an underlying infection that is playing a role; you mentioned a virus. There are actually too many approaches that you might want to take to describe them all here. We have a book that looks at a lot of symptoms and treatments that might help, and it includes advice from experts. It is here. If you want to try to locate a practitioner in your area, we can try to help. (What country do you live in?) Other members may also have suggestions for you. You sound like an observant parent, and you have the determination to help your boy. Those qualities are both very important to helping him heal. We would like to help you find answers.

Hi --You are right that services seem to be geared toward kids. Since you are in Canada and can't find local resources in order to try a behavioral approach, you might want to try an online program (which I do not have feedback on from users). It ALSO seems designed for kids but it would seem that adults could use the techniques. That is just an assumption on my part. There is a fee for the program. https://www.tichelper.com/ Neither myself nor latitudes.org are associated with this, I am just passing it on in case it might be of use. It is totally online, as I understand it.