Sheila

Hi Tmy5221, if you haven't found anyone to consult with by now, would you be interested in an online program? Sheila

Hi and welcome to the Forums. I understand your need for a doctor rather than trying to figure things out for yourself. It's really ideal if you can find the right person. After reading the book, do you have any feeling for what you are looking for? Have you seen anything affecting the tics like foods or allergies? Are there any physical issues that you think might be involved? Please drop a note back and let's see if we can think of the best type of field for your situation. Maybe you could let us know a little more about your child. I think many Forum readers would relate to your feeling of being overwhelmed. It's so hard to look for answers while you are dealing with the symptoms in your child and your own emotional reaction to everything. You aren't alone, and we would love to try to help you.

Hi -- One approach to look into with light sensitivity is the Irlen method. Please see this link: http://irlen.com/light-sensitivity-fluorescent-lights-and-irlen/ Helen Irlen is on our advisory board and Latitudes.org has articles by her: http://latitudes.org/helen-irlen-ms-answers-parent-questions-on-scotopic-sensitivity/ http://latitudes.org/the-day-the-notes-stopped-dancing/ http://latitudes.org/finding-solutions-through-irlen-techniques/ http://latitudes.org/can-tints-help-adhd-tics-family/ Two other things to consider would be lab work through an integrative practitioner to find out if there are nutritional imbalances that need to be addressed. Also, a screen to rule out heavy metal overload or toxins in the body. Both of these situations can affect vision. I hope everyone on this thread who is dealing with this can find some relief. It is such an all-consuming problem for a child!

Hello WorriedMom55--I know I dropped the ball on this thread! My dad passed away in December, and since then I can't seem to get caught up with things. I would love to know how the screen restriction period went, as well as the dietary changes you have tried. Have you seen any changes that give you encouragement? I hope you will please update us on how everything is going if you get a chance. Sheila

Hi EileenC, So sorry for the delay in responding to this. The doctor Lisa saw several years ago has rtired. And unfortunately the homeopath, who was much loved by her patients, died in a car accident. Please let me know if you are still looking for a referral, possibly to someone who could run the same type of tests that Lisa first had completed. Sheila

Hi jpdmom, Can you let us know if you found any answers for your child? Did the tics continue after the antibiotic cycle was completed -- and did anything else transpire? We would love to know and hope the situation has improved. Sheila

Sarah, thank you for posting on our Forums and I hope you are finding some useful tips. You mentioned that you were going to see the pediatric neurologist in January. Did you do that -- and what have you learned? As you would know from your readings, there is frequently a connection between the immune system and tic dissorders/Tourette syndrome though this is not always acknowledged by the conventional medical community. Since you suspect your boy may have allergies or asthma, it would be useful to pursue that avenue regardless of whether could be a connection with tics. (Be aware that some related medications have a potential of aggravating tics so be cautious about potential drug side effects if any are prescribed). You mentioned that you have celiac disease -- so it would make perfect sense to explore that for your son or have him tested. Other typical factors often might include other food sensitivities, sugars, artificial additives, every day toxins, outdoor allergens, a nutrient deficiency, pets, and mold exposure. The frustrating reality is that you could control for one factor (like gluten) yet something else (just an example: like new carpeting that is outgassing) might trigger a tic and make you unsure if a diet change is helping. This is where a comprehensive approach can be useful. Please drop a note and let us know what is going on now and if you have any more information to tell us. Hoping for the best for you, Sheila

Mattysmom, I'm so sorry to read of the major problems your son has been having. And I know it's so hard on you also. I'm wondering what you have already tried for him in the way of conventional medications? Is he currently under the care of a neurologist/movement specialist? Typically when looking at integrative or alternative approaches for a serious situation like this, you will need professional help to find out what the underlying issues are. All the ideas mentioned here by others make sense. At the same time, if his diet can't be followed consistently and you aren't yet aware of all the underlying imbalances that may be causing his tics, you could meet with frustration in trying to find a solution on your own. I hope you could write back and tell us what has been happening lately, what you have tried, and if you think things are moving in the right direction. We care and would be happy to try to help you find resources in your area. Sheila

Thank you for posting about your daughter's improvement. As you indicate, these were sent to you on request, free of charge. I know that the founders of Repreeve have wanted nothing more than to learn who is most likely to benefit from this approach. (They sell a larger supply for a modest amount.) All they asked from their free users was to give them feedback as to whether it helped or not. They certainly do not help everyone, and that is why a free trial is sent by the company. Justkeeptrying, I hope you will keep us posted on how things go.You have really been through a lot as a family in dealing with so many very distressing tic symptoms. And as your display name tells us, you weren't going to give up in looking for answers, Please know that we all join you in celebrating the major reduction in your daughter's vocal tics.

Hi 4boyz, Thank you for explaining your son's situation so well. It's good to know the background you provided. This will just be a suggestion -- as you no doubt know, it's difficult to tell someone else what to do (especially if money is involved!). You mention that your boy was has been on allergy drops for two years. Can you explain more about the drops and how recently he may have been tested related to the drops and the doctor's determination of what would work best? I;m wondering if they have lost their effectiveness or need to be adjusted. Also, has anything changed in the last 3 months--something in the home or at school (renovations, painting, new carpet, etc)? Any possibility of mold exposure? And where do you live? I agree you're on the right track by trying to find the root cause. Am curious if you have ever seen any instance where something like food/drink/candy made the eye tics worse since you mentioned maybe starting a food diary. Your description of his allergies leads one to guess that the immune system is involved, and that the tics are connected to an allergic response or sensitivity. But it's generally a good idea to see a neurologist to rule out something else that may be causing the tics. What about making an appt with the neuro and meanwhile start logging your observations and doing your detective work? Then move on to the holistic allergist as needed. (If money were not an issue, that would be a good logical step now. ) I hope you will write back with a little more information for us. Thanks!

One question -- Does your son live with you full time? Might we be barking (sorry, no pun intended!) up the wrong tree and something has changed at school or someplace else in his life?

I'd never heard of HayMax, Wombat140. It looks really interesting. Thanks for telling us. Here's an Amazon link for US since it is mostly sold in Europe. I hope some readers try it for inhalant allergies and tell us if they found it helpful for hayfever and anything else. As you would know, pasquale61, there are few animals more lovable than a labradoodle puppy so it's no wonder your son is crazy about it! Why don't you try all the suggestions mentioned here, including the whole house filter you mentioned plus an air purifier for his bedroom even though the dog isn't sleeping in his room (Stick to that rule just to be safe until you figure out if it really is the dog.) And for sure get him tested for strep right away and let us know what the doctor says, OK?

Hi Alimac, Well -- your post sure slipped through the cracks. I'm so sorry. Please let me offer a belated welcome to the Forums! Facial tics can be so hard do deal with. You have my sympathies there. I hope the burst in tics you were experiencing was short-lived. Now that it has been a few weeks since you wrote, have the symptoms become better or worse? You mentioned a virus might have aggravated things. Have the tics settled down since then? Do you want to check our Finding Triggers for Tics article and see what you come up with? (Try not to be overwhelmed. Skim through the ones you know don't apply.) We will be keeping an eye out for a response and be sure to get back to you.

Hi TicsGoAway -- I know everyone would appreciate your prayer to find the triggers and keep the tics "tucked away, never to be seen again." What a nice way to put it! You've tried some major steps in seeking professional help for your boy, and a number of excellent interventions yourself. When you wrote it had been a week with your no-TV plan. How has that, along with the other things listed in your post as far as going organic, no dairy, having him out of day-care been working? Could you please give us an update? Thank you for sharing your efforts with us. (There must be some answer about more tics when he's looking to his left side. Did you ask the chiropractor if that makes any sense with what he has found -- if indeed he is competent rather than just looking for payment as you question.

Hi P888--sorry for the delay in responding to your post. You asked how one knows if it is tics or Tourette's. The distinction can be somewhat arbitrary. The term Tourette's is used when vocal and movement tics have existed on and off for a year. Please see this summary on our website that can help explain the diagnosis issues among other things: http://latitudes.org/conditions/what-is-tourette-syndrome/ The suggestions Chemar gave to the person who started this thread could be helpful. Please read her post from last year. And, Pilbara mentioned our book -- I would agree that it's very useful for someone in your situation. http://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ Did you see a pediatric neurologist yet? Please let us know how things are going.

AHB900, you mentioned in an early post that your tics go away when you are lying down, sitting at the computer or watching TV, but they start up when you move. There is a type of tic disorder that is connected to movement. This is how we explained it in our book: "Reports to ACN suggest that the sensation of physical movement itself, such as going from a stationary position to one of action, can cause tics to increase...Gerald Erenberg, MD, advised ACN that when tics begin with the anticipation or the onset of physical movement, as when preparing to start running, it may be symptomatic of a rare brain disorder known as paroxysmal kinesiogenic choreoathetosis. A movement specialist should be consulted for a proper diagnosis and treatment. Please consider your tics and whether you think they might be connected with movement in this way? It may not be a match at all for what you are experiencing, but your description caught my eye and it might be something to rule out. Wikipedia says: Paroxysmal kinesigenic dyskinesia is diagnosed using a strict set of guidelines. These criteria were studied and confirmed by Bruno et al. in a study of 121 individuals with PKD.[3] The age at onset is between 1 and 20 years old. The attacks of involuntary movements last less than one minute and have a known trigger, usually a sudden voluntary movement. For example, if a PKD patient stands up or begins walking after being sedentary for a period of time, or a person goes from a walk to a run, it can trigger an attack. Persons with PKD do not lose consciousness during attacks and have a full memory of the entire attack. Lastly, people with the disorder have a good response to medication and are usually prescribed anticonvulsants. The study also found that patients with familial PKD exhibit symptoms that follow the diagnostic criteria closely, while sporadic PKD individuals may deviate slightly.[5] Prior to criteria for diagnosis being set out, many patients with PKD were often diagnosed with some form of epilepsy. Unlike epilepsy, patients with PKD do not lose consciousness during attacks. In addition, individuals with PKD generally have normal postictal neurologic exams. However, many patients also experience an aura, similar to those experienced with epilepsy, preceding their attacks. Some patients describe it as a tingling sensation in the affected limb or “butterflies in their stomach.” Some individuals also have precipitants, such as stress and anxiety that make it more likely for attacks to occur. The above diagnostic criteria also set PKD apart from the other paroxysmal dyskinesias, which include paroxysmal nonkinesigenic dyskinesia (PNKD) and paroxysmal exercise-induced dyskinesia (PED). While PKD attacks last less than one minute, PNKD attacks last a few minutes to a few hours, and as the name suggests, the attacks do not occur because of a sudden voluntary movement like PKD.[5] Additionally, PKD can almost always be managed with drug therapy, while PNKD is not as responsive to anticonvulsants. PED, on the other hand, separates itself from PKD in that it is caused by prolonged exercise. Attacks from PED will cease soon after exercise is stopped.[5]

Hi WorriedMom55--You've been doing a great job of keeping track of your son's physical and emotional health while dealing with his tics over the last several months. Try not to despair and project what might happen (worst case scenario) as there are many things that can be done to help your son, and you are the type of parent who will find the answers. You are on the right track! (Also, don't put too much stock in the "one year" milestone for someone with vocal and motor tics at which point doctors are taught they should proclaim the person "has Tourette syndrome." It is arbitrary and doesn't really tell you anything you didn't already know -- that your child is dealing with tics that come and go but they have lasted for a year. It is also a tough term for many children to deal with--kids look it up on the internet and are frightened.) The tics and tapping gestures you mention are typical. The good thing is that some times they are so mild that you say only you would notice them, and at other times they are gone completely. The goal will be to keep them at this level. You know that stage is possible, as you have seen it yourself. How has it been going with the magnesium lotion? It's encouraging this mineral seems to help him, as it does many others. (Of course there could be other nutritional imbalances also.) The taste of Natural Calm bothers some people--the flavoring in some versions and/or the stevia. And the diarrhea,as you probably know, is from too much. You may have seen that many parents use epsom salts in bath water for magnesium absorption. Will your son take baths? Here is some good info from our forum on using epsom salts in different ways. http://latitudes.org/forums/index.php?showtopic=3581 You say he has stomach problems -- that's good news, bad news! The bad news, naturally, being that it is something you need to fix. But the good news is that digestive complaints are often a major clue to tics--they are connectedFor many, fix the stomach/gut issues and the tics go away. The VSL#3 is good -- a little pricey, but would stick with it rather than experiment with other probiotics right now. Please follow up with the primary care doc on checking diet issues. Have you tried any dietary adjustments yet? Either eliminating certain foods -- or watching artificial additives and sugars? If he needs allergy testing down the road you can always pursue that. For sure, emotional issues can add a layer of stress that affects the immune system. I'm sorry your boy has lost people he was close to. I hope the counseling goes well. I know it is hard to balance playing detective while also teaching--both take so much energy! But while following through on the above, I hope that you have been able to incorporate some of the basic guidelines in our book as far as keeping allergens to a minimum in the house and using non-toxic home and care products. That can help take the edge off -- or for some, allergens or chemical exposures are a huge part of the picture. It's so nice to read that your son is bright. Eventually he will be able to notice things that aggravate tics himself.

Hello Pasquale61-- I'm very sorry to read about your son's tics coming back after you had them so well under control. I know how demoralizing it is when tics return. You are doing the right thing in looking for a trigger. At this point you're suspecting the new puppy. When did you get the puppy and what kind of dog is it? Does the dog sleep in your boy's bedroom? It is certainly possible for the dog to be the culprit, though it could also be a coincidence and something else is affecting the immune system. Has your son ever had allergy testing for dogs? Have any other changes taken place during this time period? We will be watching for a response from you as we try to help you figure this out.

Hello, pedz -- I know tics can be so startling and upsetting, and parents feel so helpless. But it seems you have already discovered some very important clues: electronics can make your daughter's tics worse, along with sweets. That's a huge finding! Good for you. It is very possible that your daughter is light sensitive, as you say. She may also have a sensitivity to electromagnetic fields. In both cases 1) nutrients may help 2) avoiding exposure is a major key, and 3) you want to aim to reduce her "total load" of potential factors that could be aggravating her nervous system. When you see the pediatrician, you could start with discussing food sensitivities, allergies, and nutritional status. Doctors differ greatly with what they will test for, which tests they use, and what they accept as possible reasons for tics. So there is no telling where the discussion will go. But you could ask for a referral to an allergist. And ask him or her to rule out an underlying infection. Do you have allergy in the family? There are a number of environmental factors that can trigger tics, as you have probably seen on our site or in the book (if you have received it already). Please keep a journal of daily "encounters" -- from what she eats, drinks and breathes (i.e. perfume) to what she is eating. Be specific with the food. For example, there's a big difference between natural maple syrup and artificially flavored/colored syrup that's made from corn syrup. Also, try to look back and jot down anything that you recall changed around the times when the tics started up or flared-- and these are random: a new pet, renovation in the home, an illness, mold at school, starting up gas heat at home, even something like a new cordless phone system or a new car (toxins)--there are so many things that might be part of the puzzle. Does anything special come to mind? Typically, once there has been a major exposure of some kind, then other minor exposures cause reactions. I hope you will be able to go "green" at home and keep working on the diet. I know it seems like a lot all at once, so please take it in steps and let us know how it goes, OK? You are already off to a great start.

Hello dswm. I wanted to welcome you to the forums and offer my sympathies for all you are dealing with. It is no wonder you are overwhelmed. The relentless coughing in itself is so much to deal with, and then anxiety, ER and doctor visits, plus medications on top of it all. You are to be commended for all the reading you have done, and all the doctors you have seen. It is clear you don't want to leave any stone unturned in your search for help. Your description of the terrible feeling that it was as if the child you knew had died is sometimes mentioned when an underlying infection is causing a severe neurological reaction. The abrupt change is dramatic and distressing. Other very significant environmental insults can cause similar symptoms. The FluMist has been associated with a range of side effects, and tics and other responses have been reported by parents on these forums. It is difficult to know of course if that was the precipitating cause in your son's case. With all your googling you may have come across the term PANDAS or PANS. Here is a brief summary that you could check out and consider in light of your son's case. summary. We have an e-book on the topic here. Did any of the doctors prescribe an antibiotic at any point, and did you see any change in symptoms with that? Just wondering -- have you tried taking him off of milk and eggs as an experiment to see if it takes the edge off? Not that this is the ultimate cause, but it might be worth trying to see if it helped to any degree. Also, since it is respiratory related, it is important to use all the approaches one normally would for allergy/asthma in the home. Does your family have any history of asthma or allergy? Since you seemed to find magnesium helpful before, you could consider warm epsom salt baths if your son would be OK with those. Of course the key is to get to the main precipitating factor, and if it is an infection that will require additional testing. I know you will be hearing from other parents with specific suggestions. With the holidays, parents are sometimes more tied up than at other times, but I am sure people will want to help you with you difficult situation. Hang in there, and I look forward to hearing back from you.

Hi --Sorry for all the difficulties in tracking this down! We have learned of a couple of positive responses for tics by using the patches from http://www.repreeve.com/ Hopefully those people will be willing to post their experience soon. Of course it is good to hear from from anyone who tries it, regardless of the result. You can testimonials on their site.

Hi and welcome, gregdiana! This is not yet up and running from what we have seen. The program is from PsychTech and is an online cognitive behavioral approach. Users pay about $150 for an 8-week course and they interact with the computer for lessons, reporting progress, etc. They can resubscribe to continue. There are some FAQs on the site. Let us know if you try it!

**PLEASE NOTE that this product has been discontinued since 2017 so the thread has been closed to avoid any confusion** Mater Technologies has developed a non-invasive, natural product (Repreeve) to help reduce symptoms of tics, stuttering, and nystagmus. The approach has no significant side-effects, is reasonable in cost, and is currently undergoing trials. A free sample of the product (six small patches) will be sent on request to those who meet the symptom profile and would like a trial. The purpose of the sample is to help you determine whether this approach might be useful to you. No claims are made regarding any health benefits. All communication is confidential. If you have questions about Repreeve, please contact the developers directly at 206.780.7465. ACN Latitudes is not affiliated with it in any way.

**PLEASE NOTE that this product has been discontinued since 2017 so the thread has been closed to avoid any confusion** Mater Technologies has developed a non-invasive, natural product (Repreeve) to help reduce symptoms of tics, stuttering, and nystagmus. The approach has no significant side-effects, is reasonable in cost, and is currently undergoing trials. You can learn more through the FAQ section on their website. We've been told that a free sample of the product (six small patches) will be sent on request to those who meet the symptom profile and would like a trial. The purpose of the sample is to help you determine whether this approach might be useful to you. No claims are made regarding any health benefits and all communication is confidential. If you have questions about Repreeve, please contact the developers directly at info@matertechnologies.com or call the information line at 206.780.7465. We are sharing this on the forum because we believe the developers are sincere in their efforts and there is no cost or harm in trying it.

Hi Barbara, We were so happy to read your post about your success in treating your young boy, with help from the forums and our book. I apologize for the delay in responding, I'm out of town. You really did a wonderful job in attacking the environmental and diet issues, plus limiting ipad use. Your son is lucky to have you for a mom. It's interesting that you eventually found dairy to be one of the worst triggers. Your message is so helpful, and I know it is appreciated by Chemar and others on the forum who offered their suggestions. I'm going to be sending a PM to you!