Sheila

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.

Hi -- that is an interesting question. I couldn't find any research on the subject, although there is a single case report of someone who had Tourette's and also had thyroid related issue. So you are saying that your son has TS and you are on thyroid supplements?

Hi -- you are making some very positive changes.Good for you. So glad you are reading labels now. It could be that an air purifier in the bedroom with a HEPA filter would make a difference, if you can afford that. It is important that the bedroom be allergy free. Can you steam clean his carpet or whatever the powder was put on? Do you have a doctor/naturopath who could check to see if he has an intestinal candida yeast infection and needs an anticandida medication--and could determine if he has a nutritional imbalance? Hoping you see real improvement with your efforts!

Hi -- sorry for the delay. I heard back from the neurologist who also thought there could be an emotional component but could not say based on the short video. He thought seeing a pediatric neurologist as you plan for a second opinion, was a good idea. Where do you live? Am wondering if it makes sense to be tested for Lyme based on where in the country you are? Also, a suggestion -- I would remove the link in the opening to your first post, so that in the future it will not be readily available for sharing. (You know you can always remove the link on YouTube when you are finished with it,and I assume it is being shared privately only with those you give the link to.) I mention it because when he is older he will not want this to be seen by others. This is a common issue that comes up with forums, especially when parents use their full name and it shows up in a search. You might want to keep a log about diet -- symptoms along with list of foods/drinks to see if anything seems connected. And also avoid any scented products and standard toxins/cheimcals in the home. Are you familiar with that approach, as a support to other therapies?

It is good to read that your son is so well rounded and socially is doing fine. Glad you can get a second opinion, even though you have to wait a few months. I have passed the video to a neurologist to see if I can get any feedback. Will let you know if I hear anything. In the meantime, it would be good to have your boy on as healthy a diet as possible (no artificial flavors, colors, preservatives--and low sugar--for starters) and in a "green" (natural--no scented products or standard chemicals in cleaning products, etc) setting at home if you have not yet done so. That's just some unsolicited advice. Can you think of anything that changed starting a couple of months ago? Either with his health or with his environment?

Hi blackwater and welcome to the forums. I will let others answer about approaches they have found helpful for the symptoms you describe. I just wanted to give you a link for all the effects that sertraline (Zoloft) can cause. Many people have negative reactions to it. Please see here. Also you may wish to look into an allergy connection to your movements since you mentioned sinuses. This book addresses that along with other issues. Read about the book here (it is on Amazon). I hope you find the help you need! Sheila

Hi Suzanne, I know I replied this morning to the Shake 'n Vac post. You mention that your boy has horrendous tics "again" --he is now 9, When did they start and what happened? What is the date of the neurologist appointment? Is it coming up soon in December? Hopefully the doctor will do some blood tests and you could get a referral to an allergist or however things work there to obtain allergy testing. Also request if you he could be tested for a bacterial or vital infection. Generally neurologists do not look at immune issues but because of the PANDAS/PANS connection to tics, they are now more open to it. Find out he or she is familiar with PANDAS and could test for it. I would consider seeking out the help of a nutritionist. Magnesium can be good but it alone is not a miracle mineral for everyone with tics. Since he was born so prematurely your boy may have a number of issues that need to be addressed. It is great that you are on top of things while you seek to find answers. Please give your young son only healthy food with no artificial additives like flavors, colors and preservatives, and have a "green" home with no standard chemical cleaners and no scented products. Meanwhile aim to get some professional help in assessing his nutritional status and potential allergies, as you are doing. We hope the neurologist also has some helpful advice for you. Please keep us posted! Sheila

HI Charlton, Welcome to the forums. I'm sorry to read about your concerns with your daughter. Your detailed description of her issues is very interesting. It does seem that allergies are a significant key to her difficulties. This is a common link in kids with tics. When did you start all the interventions you mentioned in your note (nasal spray, changing diet, etc)? Have you seen any improvement from those yet? Did the pediatrician have any advice? You might want to contact this clinic to see if they have any recommendations closer to you. https://invitationtohealth.com.au/ I mention it because it is listed on the American Academy of Environmental Medicine website for referrals showing that Dr. Yeoh attended training with them and they offer many of the approaches that have been helpful for some with an allergic connection to tics. I hope that is some help. I'm sure there must be others who focus on nutritional support. Please consider getting our book, if you have not done so. Natural Treatments for Tics and Tourette's. We will watch for word back from you. Sheila

Hi lbass, I apologize that I just noticed your post. Welcome to the Forums. I think it is very good that you planned to see a pediatric neurologist. Can you please tell us how that appointment turned out? What was the advice? The motions in the video are not typical tics but we are not qualified to judge what type of issue it may be caused by. Sometimes kids do an exaggerated motion to cover up a tic. Again, it is hard to know what is going on from the video. We are interested in learning more and knowing how your son is doing. Please do let us know.

Hi gladiator16, I hope your son is doing better today. You mention Shake 'n Vac, which I was not familiar with. To answer your question, yes it could be the culprit for your son's tics getting worse. It sounds like another dreadful product from Glade and marketed in the UK. Glade makes a range of scented products with ingredients that are considered toxic. The intent is to sprinkle it on carpets to "freshen" them up, and then vacuum the powder up. This is the description: "Keep your floors at their most lovable with Glade® Shake n' Vac. Eliminate deep-down odours on carpets and rugs, and freshen your home with a variety of Glade® fragrances to ensure you always have something soft and loving to come home to. " They offer this safety precaution though it took a while to find this online: "Keep out of the reach of children. Remove pets from room before application. People suffering from perfume sensitivity should be cautious when using this product. " One site lists these ingredients for the lemon scent: Fragrance. 3,7-dimethyloct-6-enenitrile; 3a,4,5,6,7,7a-hexahydro-4,7-methanoinden-6-yl acetate; citral; decanal; dipropylene glycol; hexyl cinnamal; linalool; methylbenzyl acetate; octanal; terpineol. ... Sodium SulfateFlow Agent. ...Calcium CarbonateCarrier. ...DolomiteCarrier. I would suggest you open your windows, toss the current vacuum bag, vacuum the carpet repeatedly with a new bag, throw the new bag out when done, and steam clean your carpets with unscented natural soap or only hot water. Be sure it dries thoroughly. Your son needs fresh, clean air. What you did is very understandable as it seems this product is popular in the UK, and other Glade products are very popular around the world. Millions of people use them. Is there a reason you needed to do this for your carpet? Do you have a pet? I'm glad to read that you purchased the book, and I hope it is helpful to you. It in you will see the recommendation to avoid scented products in general. Please do let us know how your boy is doing today. We care about you and your family and are hoping he will be better soon.

Hi EmilyGirl, welcome to the forums, and I'm glad you wrote. You have been through so much. It says a lot that you are willing to reach out. You have classic OCD symptoms and then on top of that, such traumatic incidents to deal wtih. No wonder you are exhausted. We would love to hear more about where you live, and what options you have for getting help so you don't have to continue to struggle with all of this. We are glad you do not intend to give up! Hang in there. It could be that a medical problem causes some of your fatigue and there is help for that. Please write back and tell us more. We care and want to do what we can for you. Sheila

Hi and welcome to the forums. I'm sorry to read that your young child is having difficulties. We know that feeling of having no direction to turn to in how to help your child after a visit to the doctor, and hope you find answers soon. You have asked such an important question. There is not one perfect answer, as cases differ. But the Great Plains Laboratory has come up with a set of tests that you could consider. The lab can consult with the doctor/nurse if there are questions. You could review this list and see what seems to make a connection for you.Generally, insurance will cover some but not all of them. I do not know about Canadian insurance though. https://www.greatplainslaboratory.com/tourettes-tics-and-ocd/?rq=tourette syndrome Please see what you think. Did the symptoms come on suddenly or gradually? Feel free to share more about your situation. And am sending best wishes to the whole family.

Hi -- TicHelper is an online program that focuses on behavioral training to reduce tics. This is their FAQ link below -- you will see that it costs about $150, and other questions are answered. I'm not sure if any of our forum members have tried it. Hopefully we will find out. tichelper.com/faq/

Hi Matthew, Thanks for posting. it sounds like you have been able to figure out some of your migraine triggers. There seems to be a big overlap between things that trigger migraine and that trigger tics. Can you tell us what has happened with Cozy Shack puddings? I am not familiar with them, but when I went online to check their site there were several versions and I'm curious what is now a problem for you. What are the ingredients and for which ones? It might be helpful to others. Thanks!

Hi Tayna, I heard back from the doctor who was monitoring results for LDA and Tourette's or tics. The answer was not very definitive. He said it helps some, and that people just have to try it to find out. So, I know that is not much help to you. Maybe someone who has used it will add to this.

Good luck with finding what you need, argentanya.

Hi argentanya, From what we understand the amount of msg in capsules is quite small. But that doesn't mean it could not cause a reaction. Do you always see the increase shortly after she takes them? What nutrients is she taking? You might want to experiment with finding supplements with vegetarian capsules. They are quite common now. Even some gel caps are now in a vegetarian capsule though they are not as easy to find. When supplements are in a powdered form, they can often be opened and put into vegetarian capsules like these on Amazon. Please let us know if any of this makes sense. We could help you find non-gelatin nutrients if you wish! How has your daughter been doing?

Hi tayna2001 -- I know this is a late response. Several years ago it was suggested by a doctor who had been monitoring results from LDA, which is short for low dose enzyme activated immunotherapy, that it was not as successful for Tourette's as for some other conditions. However, there is such a range of reasons that people have tics (as well as Tourette's) that I can't give an answer for this. Let me get in touch with a doctor who is very familiar with LDA and see what his answer on this is. I hope to get back to you soon.

Hi mkwgbennett and welcome to the forums. I was waiting to see if any members had this experience with Zoloft before responding. But it did not surprise me when I saw your note. Zoloft is a drug that has helped many people but can also cause a range of unwanted neurological responses (among other types of potential side effects). It can also require care when weaning off of it. Take a look at this list of side effects linked below. It includes convulsions and "muscle spasm or jerking of all extremities." The incidence of convulsions is considered uncommon and the incidence of the jerking and spasms unknown. But it can happen. The huge list of negative side-effects is pretty sobering. https://www.drugs.com/sfx/zoloft-side-effects.html Your child may be among those who have an adverse reaction to Zoloft. What is happening right now? Did the doctor get back in touch and change the approach? We would like to help in any way we can. Hang in there--you should be able to address this.