Sheila

A parent sent a private message to me saying that her teenage son does not tic much when lying flat, "but the moment he starts to walk he will tic very frequently. Not sure whether it is body structure issue - spinal related or something of that sort. He has grown very much taller over the year." The tics in this case are vocal tics and shoulder shrugging. I've written to her to check this thread for a response. In case it may help, this is an excerpt from my book Natural Treatments for Tics and Tourette's: A Patient and Family Guide 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 see this information below from Wikipedia. Anti seizure drugs appear to be recommended for this particular movement problem. Similar but different issues are also described below. Let us know if any of this seems to apply. 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. 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] Treatment Almost all patients respond positively to antiepileptic (anticonvulsant) drugs. One of the drugs most often mentioned in the literature is carbamazepine, and is the most widely used drug for treating PKD. Other anticonvulsants like valproic acid, phenytoin and clonazepam are common alternatives. Other categories of drugs have also been used, such as dopamine affecting drugs like Levodopa or Tetrabenazine.[5] Individuals with the disorder can also modify their behavior to lessen their attacks without the influence of drug therapy. For example, decreasing stress to avoid precipitants can help patients decrease the number of attacks. In addition, avoiding any sudden movements can also prevent an attack. In order to prevent an attack, some individuals use their auras as a warning, while others purposefully perform slow gestures or movements prior to a triggering movement.[2] Many, if not most, individuals end up growing out of the attacks with age, even without medicinal therapy, but some patients will go back to having attacks after a period of remission.[3] In regards to secondary PKD, treatment of the primary condition can lessen the PKD attacks in those individuals.[5] MORE https://en.wikipedia.org/wiki/Paroxysmal_kinesigenic_choreoathetosis Please let us know if you doctor thinks this condition might be related to your son's problems.

Hi Sutjipto, I will try to get in touch with the Repreeve folks. They could just be out of town. So sorry your son is dealing with serious vocal tics. I will let you know what I find out.

I'm glad you have areas to focus on--tinkering. I know it can seem like a full-time job. Camp cabins are often also musty and moldy, just throwing that out--though they may have been new, or treated for mold and hence toxic in that way. It's great you have preventive measures--and that he can go to camp. Please let us know what you discover, Tracy.

tj21 -- I know this must be so difficult. And first, let me apologize that I have not read your other posts where you may have discussed some of the additional efforts you have going on. Since you already have a functional medicine practitioner who is leading the way, and as Chemar mentioned, there are so many factors that could be involved, I'll just share a couple of thoughts that may or may not be a fit. It is possible with major immune issues to become hypersensitive to chemicals and allergens. I used to watch kids in the office of an environmental physician and saw a high pitched screeching tic triggered by formaldehyde exposure and a screaming tic triggered by mold exposure, etc. A food can also be behind it. Obviously you have a complex situation but do you think there are any environmental influences that may be playing a subtle role? For this, think in terms of an allergy to the nervous system--something doctors don't usually consider.

Hi MartinStoryKapusta, Welcome to the forums. It's smart you have started investigating triggers for your tics, and a journal log is definitely the way to go. You have brought up a good point about the confusion that can occur when food reactions are delayed. That's when looking back through a journal can help pinpoint a problem. People's responses differ. If someone is truly allergic to a food, the reaction will be immediate in contrast to an IgG reaction or being intolerant to a food where delays as long as a few days can occur. Reactions to chemicals, fragrances and typical allergens like dust and pollens tend to be quick if they are a factor in your symptoms. But it is possible that your body is reacting to something you are exposed to so much/often that you don't recognize it as being a problem; it is a cumulative exposure and difficult to detect unless you remove it from your environment and then reintroduce it. An example could be something in your daily diet or an item like your cologne or a pet. One of the things that complicates tracking down triggers is that reactions can vary based on other influences you have been exposed to at the same time (your total load of exposures), and/or your level of fatigue, or whether you have an infection--and how much of the item you were exposed to. Due to these issues you might react more one day and less or not at all another. But the journal should eventually give you answers. Be sure to make a note of other factors -- like whether you were exceptionally stressed that day or had an unexpected exposure. I hope you find some good answers soon. It's helpful to eliminate additives in foods from the start -- were you planning to do that? Please let us know how you are making out and if you have come across any helpful tips.

Hi Tayna2001, welcome to the forums and I'm sorry you didn't get a quick response. What happens often is that once someone is better, they quit posting because they have found their answers. Wish that didn't happen because others need support, but sometimes it's just the way things go. In any event, yes things can end or stop but no one can make any promises about that. There are lots of factors involved. If someone find that traditional medicine works for them, that's great. But if it is really working, then they shouldn't have to be concerned about waxing and waning, if you know what I mean. The key thing for some people is to find out what is the underlying problem. Do you want to tell us more about yourself? Like what you are dealing with and what your observations have been about the condition you have? Would love to hear more. Don't despair, there are many things that can help reduce symptoms of tics and/or Tourette's in addition to conventional approaches.

Hi JMartin27, sorry for the delay in getting to this -- it slipped by me. Try not to be distressed because there are many things you can do that can make a difference for your son. The good thing is that there doesn't seem to be an actual "brain" problem per the neurologist. That doesn't mean there are not things that are affecting his nervous system. I don't understand what he could have meant by saying it is a behavioral problem. It is not unusual for symptoms to lessen when the person is concentrating, like during the car ride. The key areas to look at are allergy, diet, and chemicals--and exposure to sensory things like light, TV/tablets (a frequent trigger for tics) as you mentioned. Can you tell us more about yourself and your son--and where you live?

Hi Elise, welcome to the Forums! We are glad to have your input. I know that some people have tried neurofeedback, with different results, which is not surprising given the different types of approach used by practitioners and the different needs of the clients. Are you using it for tic control or some other associated condition like attentional difficulties or hyperactivity? Did you see a difference when you started the GFCG diet? Good he is low sugar! Are you able to keep him away from artificial flavors, colors and preservatives? Does he have allergies -- or do you have them in your family? A lot of parents report they see the benefit of going "green" at home and avoiding all scented products. Have you thought about that? I commend you for the commitment you have made to finding answers for him, and the diet change. I know that's not easy. Along with the low sugar, it makes sense to be sure he is on a good comprehensive probiotic. Hoping to hear back from you!

That's very help information, Argentanya. And it explains why Dr. Walsh doesn't include the Pfeiffer Treatment center on his referral list! The tips on lab work and costs are useful, too. I'm sure your sleuthing will assist others. And we really hope you are finding the help you need for your daughter.

Hi Badim, thank you for posting your wonderful improvement with your dental appliance. We are very happy for you. We know this can be a great intervention for some, and not for others. Could you please do us a favor and post a close up image of your appliance? If we could translate more of what you are saying it would be helpful. But then, the videos say it for you! Are you in Israel? Could you please let us know the name of the person and contact information for who has helped you with this in case others want to see if it might help them? Thank you again, and we wish you all good luck!

Hi Abby114, We are glad to have you on the forums. I know tics are so concerning, but you sound like the type of parent who will be able to get to the bottom of this and find causes for the tics. Unfortunately pediatricians usually tell parents to do nothing about tics, which is not in the least helpful! Food allergy and sensitivity can be a big connection to tics, as can artificial colors, flavors, and preservatives as well as MSG--as well as environmental exposures. I think a big clue for you is the food allergy he had as a baby, especially with the milk and soy problem. Blood in the stools is quite a serious reaction from food allergy during breast feeding, so it make sense to eliminate those right now. To answer your question on the GAPS diet, yes we have heard cases that responded well to this diet for Tourette's or other tic disorders.The GAPS diet is quite strict (not everyone needs to follow that) but it could be a good place to start to see if things settle down. Along with diet changes, please be sure that the environment is as allergy-friendly as feasible. Also, remove scented products from the home. Hypersensitivities can extend beyond beyond the diet, just as you have seen with electronics. (Keep those to a minimum). Please get back to us and let us know how things are going. Give it a little time. As you noticed when symptoms were worse during an infection, different exposures or health issues can come in that affect the immune system, even while you are making good progress with the diet. You may need to find a professional to help in these efforts. If so, let us now and we will try to point you in the right direction. Try not to despair, I think you will get to the bottom of this!

Hi -- sorry about the link. You can search Magnesium L- Threonate-(2,042 Mg), Patented Original Magtein Supplement From MIT Inventors on Amazon. Seems it doesn't list calcium. Probably a comparison of the amounts of Mg between any Magtein and Natural Calm isn't a direct comparison since they are different types of magnesium. In any case, I'm very glad your boy is doing better right now! Will watch to see what you learn about this topic. Good luck!

Hi JC Mom, I thought someone else might jump in here so was waiting. Please give us an update on how things are going with your boy. I personally love Magtein for myself. I take it along with SAMe (not good for everyone) for mental clarity. I started it about 6 months ago and have intended to write a blog about it but never get to it. I buy mine on Amazon from the original developers of it, but was close to getting the one you have, from Life Extension. I didn't realize there was a powder form which would work well with your son. (I don't know the amount that a child should have.) I don't know that one is better than the other-- my brand or yours. I didn't compare ingredients closely. (Mine: "Magnesium L- Threonate-(2,042 Mg), Patented Original Magtein Supplement From MIT Inventors" From what I have read, it does seem to be a good way to get magnesium into the brain. I notice a real difference. I hope you will write back even with the delay in a response to your post! Everyone will want to know if you are still seeing improvement--and we hope that you are!

Many parents have experienced taking their child with a tic problem to the doctor and having him or her look calm and not be ticcing--it can be frustrating! But the doctor will often take a history that helps them confirm what is happening. If you don't want to see a practitioner you could go at this from the stress level, taking nutrients that are known to help the stress response or reduce anxiety. You could see professional to help with this. Dr. Oz gives suggestions here (be sure to see the different pages.) http://www.doctoroz.com/article/supplements-fight-stress For sure you should be taking a good B Complex and then consider some of the suggestions. Also do not eat foods with artificial flavors and colors, and avoid foods with MSG in them. Your diet can make a difference. Several years ago a posted started this thread on MSG sources. I know that as a student it is hard to avoid foods with additives, but do your best. And for sure don't have Ramen Noodle types soups -- they are loaded with MSG, which can excite the nervous system. Sorry for the delay, I hope this helps. Diet as mentioned above, and can make a big difference along with supplements like Dr. Oz discusses. Please stay in touch to let us know how you are doing!

Argentanya, a researcher, Dr. William Walsh, started the Pfeiffer Treatment Center and now focuses on research: http://www.walshinstitute.org/ Dr. Walsh is a member of our advisory board. I notice that on Dr. Walsh's institute website, they offer clinical resources but the Pfeiffer Treatment Center is not on that list (I don't know why). http://www.walshinstitute.org/clinical-resources.html From those within this list above, I believe Albert Mensah at Mensah Medical (or his partner) would have the most experience. That's not saying others could not be helpful. We just posted an article that links to a podcase with Dr. Mensah that you might want to listen to. http://latitudes.org/dr-albert-mensah-treating-root-causes-anxiety-depression-kids/ I will say that you have to have a certain degree of patience--getting an appointment and following through to treatment. But they have an excellent reputation.

Here's what I would suggest -- and you know I am not a doctor. If symptoms are continuing it might be safe to assume that the candida problem has not been resolved. Die-off is not necessarily a problem if the dosage is appropriate and one starts slowly. And if there were to be a die off problem it would show that there is still an overgrowth so the treatment was needed. I am in touch with a dad whose 4 year old son was diagnosed with a candida problem based on a urine test. (issues: hyperactivity, poor impulse control, history of some tics). The doctor recommended Nystatin suspension 100,000 per ml, 1/2 tsp twice daily for 30 days; one refill. They are starting with once per day to avoid any die off. Regarding your interest in finding out if the problem was resolved, I don't know how you would assess a yeast problem without testing. I know some people use a saliva in a glass of water test. I've never trusted that do-it-yourself approach compared to more conventional methods, but I have also not seriously looked into it.

Let me give this some thought please and I'll get back to you.

Hi Argentanya, Welcome to the forums. I'm so sorry to read about the reaction your daughter had after Adderall. (I'll let others answer whether they have tried it.) It's at least encouraging that some of the other symptoms have disappeared. As for doctors in the Chicagoland area-- two environmental physicians are below. They have a background in allergy and chemical sensitivities. I am not suggesting that one is a perfect match for you, that's always hard to say. If you would be willing to travel, there might be others as well who would interest you. Wishing you the best and I hope you will keep in touch and let us know how your daughter is doing. Oberg, Gary R., M.D., (Crystal Lake) The Northern Illinois Center for Integrated Healthcare 31 North Virginia St. Crystal Lake , IL 60014 Phone: (815) 455-1990 Hrdlicka, Richard E., M.D. (Geneva) Geneva Center for Allergy and Integrative Medicine 302 Randall Road Ste 206 Geneva , IL 60134 Phone: (630) 232-1900

Would you be interested in seeing a doctor who could help you with this effort? If so,, what city do you live in?

We have an article in which Dr William Shaw gives some simple suggestions for avoiding and for detoxing chemicals, these are things you can consider along with other efforts you are making. Dr Shaw is director of Great Plains Laboratory that has a new lab test for toxins; info is included in the article. http://latitudes.org/4-steps-you-can-take-to-detoxify/

You might want to see what your naturopath thinks of this combination probiotic: http://shop.gapsaustralia.com.au/bio-kult-probiotic-120-capsules/

Hi -- A note about the probiotic you are taking. While that looks like a quality product, it can be helpful to take a combination strain rather than one with only Lactobacillus Rahmnosus. I'm on the road right now but can try to send some suggestions later. I would consider seeing a physician to see if she or he would prescribe Nystatin or Diflucan to address the candida if it was so significant. That's just a suggestion. It's great you are getting the other nutrients into him!

Hi Stratcat , Welcome to the forums. You wrote a very clear description of what is going on. (I sympathize with your issues -- calculus is hard enough without the distractions you have!) As you probably know, Tourette syndrome often overlaps with OCD. Since you describe sounds you used to make a a child, along with muscle movements, you might fall under the umbrella diagnosis of Tourette's. But as you say, you also have OCD type symptoms. People often experience a premonition or need to tic prior to the muscle movement, and that may be what you are describing. But in the end, they are labels that may not be as important as addressing the symptoms themselves. Are you interested in trying medication or natural approaches to what you are dealing with? You shouldn't be embarrassed at all -- actually OCD type behavior as well as tics have increased a lot in the last few decades and are now quite common. If you want to try standard medication for the OCD, let's say, you could see a physician and describe your situation. You could also try some natural approaches that have helped some people. If you are interested in non-drug efforts, let us know and we can try to point you in the right direction. In any event, it seems this would be a good time to try to get a handle on it -- get some help for it -- so you can continue with your studies and plan for a successful career. The good news is, there are treatments that can help.

Hello Moose_Man, Sorry to see that the anxiety has cropped up along with tics worsening. I looked back at some of your previous posts and you had mentioned a compound formula: Also doing a compound formula for the many minerals, acids, etc the ION profile found. This includes Vitamin A, C, D, E, K, Thiamin (B1), b-Carotene, Riboflavin (B2), Niacin (B3), Pyridoxine (B6), Folic Acid (or 5-Methyl-THF), Vitamin B12, Biotin, Pantothenic Acid (B5), Calcium Citrate, Iodine, Magnesium, Zinc, Selenium, Copper, Manganese, Chromium, Molybdenum, Boron. I couldn't tell if you ever were able to give this to your son? I know you mentioned he has trouble swallowing pills but maybe it is in a different form? Also I'm wondering if your doctor would recommend a more aggressive approach to the candida infection that you say was quite significant? I believe you said you were using an herbal therapy for it. Perhaps it still needs addressing. Is he getting lots (and lots) of probiotics? Here's an article on anxiety and gut flora. And is his diet a candida-friendly diet? What else is going on that you can think of to share? Again, so sorry you and your son are dealing with this. We all know how distressing it can be. Looking forward to hearing back.

Hi JC Mom, I know some members have seen Dr Stack but are not necessarily online. I did a search and came up with some previous links that might be of interest to you. I did not differentiate whether they were positive experiences or not. We have heard from people who found this approach, including with Dr. Stack, very help and others for whom it did not help, even when at first it seemed they would be good candidates. There is a study going on presently, I believe with Dr. Sims. As I understand it, people are responsible for their own transportation and lodging. Sometimes a number of fittings are required. I hope this is some help. Study here Previous threads http://latitudes.org/forums/index.php?showtopic=24651&hl=stack http://latitudes.org/forums/index.php?showtopic=22725&hl=stack http://latitudes.org/forums/index.php?showtopic=22505&hl=stack#entry174278 http://latitudes.org/forums/index.php?showtopic=10797&hl=stack http://latitudes.org/forums/index.php?showtopic=21851&hl=stack#entry168588 http://latitudes.org/forums/index.php?showtopic=7016&hl=stack