Claire

There is a difference between habits and tics. OCD people can reverse habits through therapy. I can't believe this is good for tics, as it puts pressure on the child to believe they can control what they are doing, which can raise stress. This is a concern for me. Habit redirection is another matter where I have heard some success. Swear words being replaced.. I can see how teaching mental relaxation techniques, such as meditation, can reduce the urge to tic. Claire

Welcome NickyT, I have never been able to find answers to that question, nor seen them posted sorry. Maybe Chemar will have insight to add when she checks in? My big concern is that some of the recent increase in tics and TS diagnosis is really a result of mercury, etc... similar to the presumed reason (by many) for the increase in autism. While a genetic case of TS may show recovery through puberty, if it is a toxicity issue, I am not so convinced that it resolves on its own in the same way. You may wish to bring the list of tests discussed in my post for newcomers (on this top page) and bring it to your doctor to see if he is willing to try some out. Allergies are usually a big part of it. Good luck. Claire

Ikaanda, I see no harm in keeping the appointment with the neurologist at this point. You can decide as you get closer to the appointment if it is warranted or not. I absolutely personally believe that the doctors at the top of this list will help more, but you need to do what you are comfortable with, and since you can't predict 6 months out, I would keep it. Minimally, if your child has Tourette's, having a doctor's note or diagnosis may help you get accommodations and understanding in school. I do think that some chronic tic syndromes can be misdiagnosed though. As you said with the computer games, it is absolutely quite individual, but enough people on this board saw a major difference that I personally think it merits evaluating for a child--especially if you have noticed any correlation. For some kids who don't even tic during the computer games at all due to intense focus on the game, they can still have a cumulative and lingering reaction from it, so the only way to be sure is to do 'no screens'. Another 'easy', non-invasive thing to try is to avoid artificial additives, though you might wish to do this a different week so that you know which one is the bigger trigger. Yes, I would speak with your son's teacher. 1) She is going to need to be patient and understanding if your son 'fidgets', and not criticize or punish him. 2) if you do the no screens for a week, she will need to cooperate. For some, even intermittent exposure is enough to have a lingering impact --e.g. for some kids you need to completely avoid any exposure for the week. Even having the monitor on in the room where the child is watching other kids play on it and/or the child sits facing the computer with a screen saver and 'zones' into it during the day while the teacher talks can have an impact--I am not exaggerating some children's sensivitity. Easy enough for them to turn the screen off (not the computer) when they are not using it, or angle the monitor a little bit. If it is the TV/computer is your child's biggest trigger, in some ways you will be lucky. Your child is so young--they adapt so much more easily at that age to such a change if you modify his viewing habits or introduce LCD monitors and find they are okay. And if no TV does greatly reduce his tics, then you have a greater luxury of time to investigate underlying issues to hopefully 'heal' him before computer becomes a fundamental part of his education environment. If you truly do a no screens week, can please let us know how that goes? Either way, it will help future posters do have a better idea of impact. For example, Heather, efgh, jean, jenniferM, Ronnas (and Laurie in NY and Tessa on Braintalk) noticed a difference, but Carmon saw none. Others like Jeff have found solutions that are totally unrelated (e.g. for Jeff it was the artificial additives that were night and day). We peel the onion one layer at a time--and we each have our own onion! Claire

Fuji, I know a parent with an adult son. They told me that their son didn't work hard enough in school, and they assumed it was an attitude problem. So they pushed him hard and criticized him when he didn't seem to produce as well as his abilities. Well, when he turned 18, he was finally diagnosed with ADD. Unfortunately, at that point he also suffered from depression. The parent now believes that it was their ignorance of his real issue and their criticism that in part fueled the depression. The parent is suffering deep regrets. I am sorry for your own suffering. You give terrific advice to all of us and I want to thank you for pointing this out. The article I posted said that "ADHD afflicts 50% of Tourette's syndrome patients with or without hyperactivity (2)." http://www.latitudes.org/forums/index.php?...p?showtopic=743 Again, this is TS, and for tic syndromes, perhaps it is higher--regardless, it is noteworthy. Also, depression can be related neurologically--please keep this in mind. I hope that you read these boards and perhaps see if some of these things might apply to you. Here is a link on supplements for depression, though that is a situation where it is good to have a doctor involved, depending on how serious it is. http://healthinfo.healthgate.com/GetConten...&chunkiid=21566 I found a link on adhd and supplements and diet, and how the supplement/diet. I personally believe in a more customized program, but many of these are the same ones mentioned for tics. Claire http://www.alternativementalhealth.com/art...ticles/gant.pdf Essential Fatty Acids and Phospholipids (Risk Factor #5) (1) Salmon oil 1000 mg (EPA 180 mg; DHA 120 mg) (2) Borage oil 200 mg (GLA 45 mg) (3) Purified Soy Lecithin (Phosphatidyl choline 50-150 mg; Inositol 20-25 mg) (4) Choline bitartrate (2.5-7.5 mg) Agents to Support Thyroid Functioning (Risk Factor #7) (1) Iodine (from kelp) (25-150 mcg) (2) Tyrosine (900-1800 mg) B Vitamins and Phytonutrients (Risk Factor #8) (1) Vitamin B1 (as thiamine and thiamine pyrophosphate) (22.5-27.5 mg) (2) Vitamin B2 (as riboflavin and riboflavin phosphate) (22.5-27.5 mg) (3) Vitamin B3 (as niacin and niacinamide) (75-140 mg) (4) Vitamin B5 (as D-calcium pantothenate and pantethine) (50-70 mg) (5) Vitamin B6 (as pyridoxine and pyridoxal-5-phosphate) (43-86 mg) (6) Vitamin B12 (cyanocobalamin) (90-175 mcg) (7) Folic acid (435-760 mcg) (8) Biotin (20-400 mcg) (9) PABA (22.5-27.5 mg) (10) Vitamin E (140-200 IU) (11) Vitamin C (750-1000 mg) (12) Vitamin A (as vitamin A and beta carotene) (2000-4500 IU) (13) Vitamin D3 (40-100 IU) (14) Vitamin K (20 mcg) (15) Royal bee jelly (source of biopterin) (75-150 mg) (16) Dimethyl glycine (10 mg) (17) Citrus bioflavonoids (10-20 mg) (18) Proanthocyanidins (grape seed) (5 mg) (19) Bilberry extract (20 mg) (20) Soy constituents (saponins, isoflavones, phytosterols) (20 mg)

Thanks Chemar! I keep going back and forth on manganese. I have read it is commonly supplemented with pyroluria, but Dr. Walsh says it isn't good for people with TS. I don't know if that means other tic issues or not. Any thoughts on manganese? Eric, I thought the same thing as Chemar. That $40 (plus shipping) test might be worth thinking about...As I have posted, my husband and I were both negative, so not 'everyone' shows positive. Chemar, did you ever do this test for your son? Claire

Hi Ikaanda, Most of us on this board had better luck with doctors dealing with underlying health than with neurologist. As Gina said, I was told that the neurologist would ask questions and observe--there are no tests to run, unless as Chemar says, epileptic seizures are an issue. Then they say you can medicate or not. If you are looking for help assessing where your child fits on the tic spectrum while you wait for your appointment, here is an article I recently found: http://www.latitudes.org/forums/index.php?...p?showtopic=743 I posted another one on a thread with more info--if you will look in our archives here. As Chemar and Gina alluded to, I strongly recommend using your waiting time to go to one of the doctors at the thread at the top of the forum. They deal with diagnostic tests to see if something can be done to alleviate the tics (e.g. elevated metals/mercury, yeast issues, food sensitivities). http://www.latitudes.org/forums/index.php?...p?showtopic=565 Your child is so young that you can more easily make diet changes now than later, should foods (e.g. wheat, milk, corn, soy...) be a trigger. For many artificial colors/flavors trigger tics. For some, TV/Computers/gameboys trigger tics and eliminating them for a week will let you know if this is true for your child. Unfortunately, neurologists don't seem to look at it from this angle. They tend more to diagnose and medicate. So I encourage you to read these threads and ask questions and take full advantage of these 6 months. Based on some of the successes, it seems that the diagnosis could well be affected and more accurate (more likely if you don't have TS running in your family). Claire

Bean, Good for you for taking this big step! I really feel for you and your daughter about the foods. The same thing happened to my son. Apparently the gut issues often result in them developing allergies to the foods they eat most often. My son's list (posted before, so not new): milk, wheat, peanuts, corn, eggs, almonds, bananas, apples, onions, pepper, sesame...and those are just the things he ate most often, there are 9 more. The one good thing you have going is that your daughter can have corn (my son was sensitive to corn). You would be amazed that most of the wheat free (usually gluten free) products on the market have corn. Dealing with the issue--'techniques'. We were worried about creating psychological problems by 'taking away all his childhood pleasures' so we worked hard at making this easy on him. 1. Have you told your daughter yet? If you haven't started, I recommend considering this approach: We shifted as many foods out as possible for two weeks before telling our son. That way, when we told him, we said "you can have all the foods you had last week" and it was easier on him, though I will never claim it was easy. When we ran out of milk we didn't replace it, so he broke the milk habit for several days before we told him. (Be sure and give a calcium/magnesium supplement since no milk). 2. I always told him it wasn't permanent. That in 4 months we would try rotating things in. 3. I did the identical food elimination with him. I thought it would be cruel to eat these things around him, given his personal make-up. That helped a lot. 4. I eliminated things from our cupboards so not to tempt him. 5. At school, if he had to turn down a wheat treat at school (cupcakes...), I gave him a replacement one at home. 6. For known events with treats (e.g. after sports games), I brought great alternative treats that he could have (e.g. Dole fruit popsicles...) and brought enough for other kids and just put them in with the rest of the things. That way he was no different from others there. Truly, the children grabbed the treats I brought first. We saw the results within the first week. I was just hoping for cleared up excema, I really doubted it would impact anything else, in spite of what others said--it just didn't seem like it would make a difference for my son. I hope you are as lucky as we were. I would think by 2 weeks you should also. Later when we accidentally added milk in, we saw the change--so did he. I don't know what your daughter loves, so I will tell you what my son eats. first of all, here is a link on the gluten-free board on braintalk: http://brain.hastypastry.net/forums/forumd...splay.php?f=141 There is a link someone posted with a link to all sorts of gluten-free recipes. Neither of our children has issues with gluten, but these are obviously also wheat-free recipes. Beware--lots of things have wheat, even teriyaki sauce as Chemar once pointed out. FOOD ALTERNATIVES I am listing mostly the fun, snacky foods (e.g. carbs!) that would replace the wheat. 1. Can your daughter have frozen yogurt? Some people with milk/casein issues can have yogurt. This is our 'ice cream' treat. If casein is an issue, usually butter is too. (My son only has milk issues, I have casein issues). The store mixes save a lot of time--we bought and threw away many breads and wheat-free products ($$$) before finding good ones. Even his wheat eating friends like these: 2. Gluten-free pantry has a wonderful sandwich bread mix. I went out and bought a bread-maker. He loved the fresh baked bread (it has corn in it so we had to avoid it for months when we found out about his corn allergy). You can use it for bread, homemade pretzels, pizza crust (hmmm, tough with no cheese!), cinnamon rolls. Initially I allowed a bit more sugar to offset the change, then later reduced this. 3. There is a Kamut, yeast free bread he likes (me too), if yeast is an issue. 4. Pamela's pantry makes a terrific wheat free pancake mix. Whole foods sells an egg substitute, and we use a tablespoon of Gotein goat milk protein powder in 1 cup of water to substititute for the milk (should be okay for casein/milk problems). 5. Van's wheat free waffles. 6. Berry smoothies, with a little Gotein protein powder, fruit, water and stevia. Or just fresh berries with stevia--berries can be pricy though! 7. Xylitol gum as a 'dessert' 8. Corn chips, tacos (if she doesn't like beef, we used ground turkey. 9. Blue Diamond "Nut-thins" natural rice and nutmeal crackers. Much better than normal rice crackers. 10. Chicken/Turkey and rice soup instead of noodle soup. 11. I have yet to find a decent pasta, I don't even try. 12. The only citrus he eats anyway is grapefruit--we do berries and pears, since he can't have apple and banana. 13. He eats power bars with soy--you would have to see if they make them without it. 14. Corn and oat cereals (normal Cheerios has wheat). Whole foods carries a great healthier version of Fruit loops (nothing artificial) with no wheat. It can be easily eaten without milk. 15. Milk is tough. We experimented with soy milk, you could try rice milk. 16. Popcorn with light olive oil and sea salt. (I love it, we haven't used butter since I was a kid). 17. Pamela's pantry has unbelievable brownies. (You need that egg substitute from whole foods). 18. We made a nice zucchini bread (you could do banana) with no wheat. 19. We always dip our chicken in potato starch (from my friend who is a great cook--it holds in the moisture) and then our favorite seasonings, and fry it in oil (we use coconut oil based on Mercola). Same with small pieces of halibut for 'fish' and chips. 20. Healthy potato chips, french fries (no trans fats), baked potatoes, brown rice... Someone put it well with mainstream doctors: If we didn't learn it in medical school, it must not be true". This won't work for everyone, but if done gently with the child, it is much less risky than drugs. Also, my fingers are crossed that this MT promotion therapy is a solution for both the neurological issues and/or diet issues--I know it is too early to count chickens there though. Please let us know if this makes a difference (or not). I sure hope it does. I think it did for Jennifer and Ronnas also. I hope that you will collect the data and over time start a thread, so that others can benefit as you go--what worked, what didn't. Part of this is us finding out what portion of us actually do find our kids have certain underlying conditions. I actually thought the food elimination was the most obvious and immediate change after the CRT screen elimination/change from CRT monitors. Good luck moving forward. I will pray this will start you on the right path. Claire

Kimberly, I absolutely think both paths that Jennifer, Nancy and Phyl have mentioned merit investigating. I have a friend whose son was gluten sensitive--always the shortest kid in the class. After 6 months of gluten-free diet he sprouted 6 inches! I think he was 8 or 9 at the time. Yet another reason they mentioned is pyroluria, which creates a zinc deficiency. Like Nancy, I suspect that has the growth impact, since a zinc deficiency stunts/delays growth. Given that so many of our kids with tic issues have run into other such problems, it is worth investigating. Are you the same poster whose child was sensitive to TV (vocal tics) and whose child reacted to fish oil? (Since you aren't registered, I can't just scan for other posts). If you are, then again, light sensitivity and a bad reaction to fishoil can both be signs of pyroluria. So that $40 at home test is definitely worth trying. I think if you correct the issues early enough, you can correct it. But I sure wouldn't waste time on it. If you don't have a cooperative doctor, then fortunately the www.enterolab.com stool test can be ordered without a doctor's signature. So can the pyroluria test. If either or both are positive, then you can get a doctor to manage treatment--though the gluten 'treatment' is just to avoid gluten. $99 for the gluten test, $99 for the casein (milk protein) test. As for the pyroluria test, Direct Healthcare access 847-222-9546. You can give them your doctor's name for them to send the results to and order the test yourself. Now, your child may have neither one, but since they are so treatable and the tests are non-invasive, I recommend them. My husband and I were both negative for pyroluria, so not everyone comes back positive. Claire edited to add: Zinc Essential for Normal Infant Growth A new study suggests that zinc deficiency may play a large part in causing stunted growth in infants. A team of researchers from Ethiopia and the Netherlands studied 184 infants aged 6 to 12 months in central Ethiopia. All of the children were free of disease and appeared healthy, except for the fact that 90 of them were abnormally small for their age. The 90 stunted infants and the 94 normal-length infants were each divided into two groups. Half the stunted infants and half the normal infants received a 10-milligram zinc supplement 6 days per week for 6 months. The other half of each group received a placebo. Zinc supplementation had a significant impact on the growth rate of stunted infants. Those taking the zinc supplement grew an average of 7 centimeters during the study while those taking the placebo grew just under 3 centimeters. Meanwhile, non-stunted children taking zinc grew by an average of 6.6 centimeters while those taking a placebo grew 5 centimeters, suggesting that they already had enough zinc to achieve normal growth. Zinc also seemed to help the infants gain weight. In the stunted children, body weight increased an average of 80% during the study, while weight gain in the non-stunted children went up just 20%, possibly due to the fact that zinc supplementation significantly cut episodes of anorexia, diarrhea, and vomiting in the stunted infants. As a matter of fact, zinc is so effective in the reduction of diarrhea (25%), that it rivals the World health Organizations estimated reduction in childhood diarrhea (27%) achieved by improvements in water quality and sanitation. Zinc is also an important component in several enzymes, is involved in protein synthesis, gene expression and hormone control. Although zinc was effective in this study, the authors note that it will only be effective in growth-stunted children who are zinc deficient. However, zinc deficiency is difficult to test for and often the only sign of it is when a positive response to zinc supplementation takes place. http://www.mercola.com/2000/jun/17/zinc_growth.htm

I can't find my old post on my own DAN doctor visits, so I have to start a new thread. Pyroluria. I got my own Pyroluria tests back and it was negative. Direct Health Care showed an 8, while Biocenter showed a 4. Granted, these tests were not done at the same time, but it is still worth mentioning that it was 2x the level. Sleep Disturbance Zinc. I read Dr. Walsh's advice that zinc be taken at night. I have a known zinc deficiency. Anyway, I started this 4 days ago, and since I started, I have not had disturbed sleep for 3 nights running (I have been waking multiple times in the middle of the night for many many years). I know that zinc is associated with insomnia. I know people do magnesium, and I take this, but it never made a difference with me, so something else to try. Gasping--shortness of breath. Several people have commented on breathing tics. In my research with Pfeiffer clinic, I noticed that low folate and/or B12 can cause elevated amino acid homocysteine which can cause 'shortness of breath'. In case, Pfeiffer's tests for ASD typically include homocysteines. In case some of these presumed breathing tics may actually be this, so I wanted to point it out. Be careful that if you supplement with one, that you do both. And you can oversupplement with each. I would use a doctor, but consider 800 mcg folate and 100 mcg B12 for a week. He says overmethylated or undermethylated people (I forget which) must be careful with folate, so best to see a doctor. Folate is absorbed better if taken on its own. The more I read, the more I would add zinc, B6, vitamin C and E and magnesium to an experimental routine--just don't megadose without doctor supervision. Claire

http://www.postgradmed.com/issues/2000/10_...vidente_tic.htm Is it a tic or Tourette's? Clues for differentiating simple from more complex tic disorders Virgilio Gerald H. Evidente, MD Preview: Transient tics are common, particularly among children under the age of 10 years. In fact, about 20% of kids in this age-group have tics that disappear as they get older. Nonetheless, parents often are concerned about what strange movements or sounds mean and what can be done about them. Many have heard horror stories about Tourette's syndrome and fear a life of social rejection because of uncontrollable "urges." In this article, the author discusses the various types of tics and the wide range of treatments available for their management. Evidente VGH. Is it a tic or Tourette's?: clues for differentiating simple from more complex tic disorders. Postgrad Med 2000;108(5):175-82 -------------------------------------------------------------------------------- Tics are defined as brief, intermittent, repetitive, nonrhythmic, unpredictable, purposeless, stereotyped movements (motor tics) or sounds (phonic or vocal tics). They are associated with an urge, and voluntary suppression results in psychic tension and anxiety. Subsequent "release" of the movements or sounds results in relief. Although tics appear to be voluntary, the affected person often feels compelled to move to relieve an unexplainable urge. Thus, some authorities consider tics as "semivoluntary" or "unvoluntary" (1). Although tics may resemble other types of hyperkinetic movements (eg, myoclonus, dystonia), the urge is considered the key characteristic that suggests that the movement is a tic rather than another movement disorder. Classification of tics Tics are classified as either simple or complex. Simple motor tics are focal movements involving one group of muscles, such as eye blinking, tongue protrusion, facial grimacing, shoulder shrug, or head turning. Complex motor tics are coordinated or sequential patterns of movement that resemble normal motor tasks or gestures. Examples include jumping, throwing, head shaking, making obscene gestures such as "giving the finger" (copropraxia), and imitating gestures of others (echopraxia). Simple phonic tics are elementary, meaningless noises and sounds, such as grunting, sniffing, clearing the throat, squeaking, coughing, wheezing, belching, hiccuping, whistling, or producing animal sounds. Complex phonic tics include meaningful syllables, words, or phrases (such as saying "okay" or "shut up"); repeating one's own utterances, especially the last syllables of words (palilalia); repeating someone else's words or phrases (echolalia); or shouting obscenities or profanities without any reason or provocation (coprolalia). Motor tics can also be classified according to speed of movement. Those that are brief, sudden, and jerklike are known as clonic tics (eg, blinking, facial twitching). Motor tics that involve brief twisting or posturing are called dystonic tics (eg, torticollis, blepharospasm), whereas those that involve sustained or prolonged movements or contraction of muscles are labeled tonic tics (eg, prolonged bending of the trunk or tensing of the abdomen). Sensory tics refer to uncomfortable sensations, such as pressure, tickle, cold, warmth, or paresthesias that are localized to certain body parts and that are relieved by the performance of an intentional act in the affected area (2). Rarely, motor tics may be provoked by a mental projection of sensory impressions to other persons or objects and are relieved by touching or scratching that person or object. These are known as phantom tics (3). Types of tic disorders The fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (4) lists three types of tic disorders: Gilles de la Tourette (Tourette's) syndrome, chronic motor or vocal tic disorder, and transient tic disorder. By DSM-IV criteria, Tourette's syndrome is characterized by the following features: Multiple motor and one or more phonic tics (not necessarily concurrently) Onset before age 18 years Tics that occur many times a day, nearly every day or intermittently for more than a year, with symptom-free intervals not exceeding 3 months Variations in anatomic location, number, frequency, complexity, and severity of the tics over time Tics that are not related to intoxication with psychoactive substances or central nervous system (CNS) disease (eg, encephalitis) Symptoms that cause significant impairment of social, academic, and occupational functioning If only motor or vocal tics are present (not both), the appropriate diagnosis is chronic tic disorder. If single or multiple motor or vocal tics are present many times a day, nearly every day for at least 4 weeks but no longer than 12 consecutive months, the term "transient tic disorder" applies. Transient tics are seen in 20% of children during their first decade of life. Several conditions, termed tourettism, may mimic Tourette's syndrome. Drugs, including stimulants, levodopa (Dopar, Larodopa), and antiepileptic medications (eg, phenytoin [Dilantin], carbamazepine [Atretol, Epitol, Tegretol], lamotrigine [Lamictal]), may cause tourettism. Discontinuation of the offending drug leads to prompt remission of the tics. Neuroleptic medications with potent dopamine2 (D2) antagonist activity (eg, haloperidol [Haldol]) may cause tardive tourettism, which presents with delayed and often permanent tics identical to Tourette's syndrome. Other causes of tourettism include infections (eg, Creutzfeld-Jakob disease, encephalitis), toxins (eg, carbon monoxide), Huntington's disease, head trauma, stroke, neuroacanthocytosis, chromosomal abnormalities, cerebral palsy, neurocutaneous syndromes, and schizophrenia (1). Clinical features of Tourette's Tourette's syndrome is the most common and severe form of multiple tic disorder, with a prevalence of 10 cases per 10,000 population (5). Its onset is usually between ages 2 and 15 years (mean, 6.5 years) (2). On average, phonic tics begin 1 to 2 years after the onset of motor tics. Symptoms remit by a median age of 18 years in about 75% of cases. In rare cases, Tourette's syndrome may start during adulthood in the absence of precipitating factors (eg, exposure to neuroleptic drugs, infections, stroke). Focal tics may also appear in adults in relation to peripheral nerve injury in the area of the tic. Tics increase in frequency and severity with stress, relaxation after physical exertion, excitement, idleness, fatigue, exposure to heat, and use of dopaminergic drugs, steroids, caffeine, and CNS stimulants (1). Rarely, motor tics may be induced by an unexpected startling stimulus (ie, reflex tics or startle-induced tics). Exacerbation or precipitation of tics in children may also occur after infection with group A beta-hemolytic streptococci (6). Tics usually diminish with performance of engaging mental or physical activities (eg, playing computer games, playing sports) or with consumption of cannabinoid substances (eg, marijuana), alcohol, or nicotine (2,7). Unlike most hyperkinetic movement disorders, tics may persist during light stages of sleep. Although the disability with Tourette's syndrome is often confined to social embarrassment, severe motor tics may lead to physical injury, including fractures, cervical radiculomyelopathy, joint dislocation, and falls. Severe phonic tics may also impair respiration, swallowing, and speech. Comorbidity Tourette's syndrome is often accompanied by other conditions, particularly attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder. Both of these disorders can contribute substantially to the disability and management problems of the illness. ADHD afflicts 50% of Tourette's syndrome patients with or without hyperactivity (2). It manifests as impulsivity, inattention, restlessness, fidgeting, poor concentration, poor school or work performance, and learning impairment. Not uncommonly, ADHD becomes the major problem because severely hyperactive kids, especially those with severe phonic tics or coprolalia, become disruptive to other children in class. Obsessive-compulsive symptoms are repetitive, stereotyped, involuntary, senseless thoughts or behaviors that intrude into the patient's consciousness or actions. These symptoms become a disorder (obsessive-compulsive disorder) if they cause significant social impairment and emotional distress. Between 30% and 50% of patients with Tourette's syndrome also have obsessive-compulsive disorder, which may be more troublesome than the tics. Other behavioral problems that are also seen in Tourette's syndrome include quick temper, mood swings, overreaction, exhibitionism, negativism, rage attacks, oppositional defiant disorder, bipolar disorder, schizo-affective disorder, and cyclothymic disorder (5). Etiology and pathogenesis Idiopathic tic disorders and Tourette's syndrome are multifactorial in etiology. Although genetic factors play a major role in causing Tourette's syndrome, the environment seems to influence the risk, severity, and course of the disorder. Genetic factors are present in about 75% of cases, with 25% presenting with bilineal transmission (both parents affected) (1,2,8). However, the exact genetic basis for Tourette's syndrome has been elusive. Autosomal dominant, autosomal recessive, and sex-linked inheritance have been considered but have been rejected (9). Numerous candidate genes have been tested and excluded, and complete genome screens have failed to show significant results (10). Neuropsychiatric disorders, such as tic disorders and obsessive-compulsive disorder, may develop after streptococcal infection (termed pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection [PANDAS]). The mechanism is most likely autoimmune-related, whereby antibodies against bacterial antigens cross-react with proteins in the brain (6). The manner in which genetic factors and environmental factors interrelate in Tourette's syndrome is unknown. ...

Sakshi and Tricia, There are many triggers for tics, and many underlying causes. I just bumped up a summary link on my thoughts, called, "my child has tics..." My biggest recommendation is to find a doctor from the link at the top. Also, if the tics are such a problem, you might try having your child stay away from screens for one week. e.g. no TV, gameboy, movie or computers. It doesn't work for everyone, but it helped guest_jennifer's son with his painful neck tics, and it has helped others here. The reason I say one week is that is long enough to see if it really is a trigger for the tic. Claire

Sakshi and Tricia--bumped for you. Claire

Nancy E, Are you registered under any name here? I wanted to send you a private message. As you may know, we can exchange a private message while still protecting our privacy. Thanks, Claire

Fuji, Excellent report, and exactly what we were discussing about tics being on an ASD (Autism Spectrum Disorder). I personally have read that somewhere between 30-50% of kids with TS have ADD/ADHD. However, kids with TS is different from kids with tics. 20% of kids get tics, and only 1 or 2% get TS, last I read. Sorry no links. This is interesting, because much more is written on ADHD than tics, and it implies that we should all look more into the adhd research. I do this with the ASD research. Claire

Kimberly, The Pfeiffer link I posted commented that some kids with pyroluria do WORSE with fish oil. We have definitely heard this anecdotally here. They are often deficient in Omega 6's and then the Omega 3's compete for the zinc and B6 that is in scarce supply. Also, light sensitivity can be a symptom of Pyroluria, and light flicker (TV!) is a form of light sensitivity. I recommend getting the $40 pyroluria test (you don't have to go to Pfeiffer just to order the test). If it is positive, talk to Pfeiffer about a PUFA or EFA test for Omega3's and Omega6's. Our DAN doctor considers tics on the ASD (Autism spectrum disorder) list, which is addressed by the DAN protocol and Pfeiffer. Even so, tics are rarely if ever mentioned--it just hasn't been studied from this angle, and we are breaking ground here. Certainly since this board started looking at it from the ASD/immune issues angle, many of our regulars have discovered that indeed our kids have the same underlying issues as ASD kids based on testing. For some of us it is too early to see results, others have had initial success. I am sure this isn't the cause for everyone, just like TV isn't a trigger for everyone, nor are artificial colors and flavors. But, I suspect is that a large number will find substantial improvement. And as both Jennifer and NancyE said, there are often several other issues, where tics are really just a visible indicator that something else is going on. I think the TS label is misused/overused for many kids. For example ADHD kids often get tics, and they are considered ASD and treated by Pfeiffer. Good luck, and I really hope every who is able to do so posts the tests given, the results and the impact of treatment. We have a chance to make a difference here. I will try to keep posting my research, and the general information that I uncover. Claire

I thought OPC was just a good supplement for ADD , e.g. grapeseed extract. Is this a treatment also?? Phyl, How have things been for your son lately? Claire

Another mom, You might consider testing for pyroluria. For kids with pyroluria, Fish oil can often make symptoms worse, and zinc definitely helps. So does B6 (helps). More info on this is on this board. There is a $40 urine test they mail to your home that doesn't require a doctor signature. Claire

Hi Chemar, I did say some prayers for you when I read your first post! I just read your story of what happened on Braintalk, and am glad that all was okay for you. Claire ps I am trying to take your and a couple of other's advice and just post general knowledge occasionally on the screens trigger.

Jennifer, Thanks for the feedback. Sorry about the LCD monitor, but it is important that you post this, so that others who try this will be aware that even an LCD may not be enough for them. efgh's son had problems even with LCD TV also, though it was a larger screen. Helen Irlen of Irlen syndrome said that for her patients with light sensitivity (it may or may not be in the same category), an LCD monitor still caused problems. This is why I say to remove screens entirely first, then try to add the LCD monitor at little at a time. Because I assume that some people may also have issues with the LCD monitor. I think it generalises to a stronger light sensitivity. I am sorry for your son's high sensitivity, but I still believe that some of these other solutions have potential to at least reduce the sensitivity--perhaps enough so that he can view an LCD monitor in the future. If you will register at Latitudes, I will send you a private message on the pyroluria test. You know I recommend DHC lab. To answer your question directly, any doctor can do this. Also, do check out either an inexpensive typewriter (Staples has them), or www.alphasmart.com, so that your son can maintain typing skills or turn in reports that must be typed. I would try the typewrite first (with NO little viewing screen) as even the alphasmart has a small LCD screen--though the smaller the screen the less of an impact. Claire

Jennifer Melatonin is an antioxidant and a hormone. (not a female hormone!). The body generates it naturally, but needs a dark room. Night lights can interfere with its generation (catch 22, since kids with fears often want a nightlight). Chemar did not like her son's reaction the following day. I think using it temporarily can 'break' the fear cycle. Here is a post from me with more details on melatonin in general. http://brain.hastypastry.net/forums/showth...ead.php?t=29951 Jennifer, as for the next path, I recommend the pyroluria test, because Pyroluria can cause light sensitivity (and thus I assume flicker sensitivity). I used to think it was just mercury or a B2 deficiency. The test is only $40, is done at home, and the info is under the 'pyroluria links here'. It it is this, your path may be very simple. Inosotil is good for fears, but apparently it is not for everyone. Claire

Hi NancyE, So that's what your son was getting tested for--so sorry if I missed that, I thought it was mostly the pyroluria. I didn't realize that you were that far along with investigating this area, great! Then I owe you a thanks also--please let us know what you find out, and what specific treatment they give for MT protein if they do this (I believe it is zinc, then amino acids). IThere is way too much reading here. I am really interested to see if there is an MT protein/pyroluria connection since both involve zinc. I would love to see stats on that. I haven't seen that discussed yet--but I haven't gotten through all of the material. I am a little bit jealous that you are so close to the clinic. I hope the diagnostic protocols are honed enough that my DAN doctor can go through this with us. Sorry that your older son isn't in the best mood. I sure hope it improves quickly. Claire

I started looking more at MT proteins after Jennifer posted on it. Thanks Jennifer! It is almost 3 a.m. --I just am learning so much. I understand how you couldn't post on it--it is just too much to cover. This whole MT protein and oxidative stress could be the underlying cause for SOME ASD kids--never all of course. And it is so treatable. Dr. Walsh is amazing. Here are some great links--for those not ready to order materials from the AHC site. These are long but I highly highly recommend printing them and reading them thoroughly. They will mean more for those who have tracked/tested for yeast/metals/pyroluria/food sensitivities, because you may start seeing patterns. Certainly the interrelationships are key. http://www.alternativementalhealth.com/art...icles/walsh.htm http://www.alternativementalhealth.com/art.../walshMP.htm#Py Also here is a great Linus Pauling vitamin site on all the interrelationships between vitamins, e.g. never take folic acid without B12, etc... http://lpi.oregonstate.edu/infocenter/contentnuts.html So Jennifer, I want to thank you for being one step ahead here again, at least on the path I think is important for me to pursue. Thanks a million! You might consider the $40 pyroluria test too. The zinc issues it uncovers could be related to the zinc issues with the MT protein. For the rest of you, the links say things like Inositol is good for undermethylated people, but bad for overmethylated people. There are histamine tests you can do to determine this. It goes back to my view that one supplement program does not fit all. Also, he suggests that mercury detox is temporary--you need to remedy the antioxidant situation or the symptoms and issues will return. Apparently weak MT proteins leave you susceptible to yeast. I will leave it to you to read this and reach your own conclusions. It there is a ton here. Be sure to click on not only a-e, but all the letters.... Claire ps just posting general knowledge.

I started looking more at MT proteins after Jennifer posted on it. Thanks Jennifer! It is almost 3 a.m. --I just am learning so much. I understand how you couldn't post on it. This whole MT protein and oxidative stress could be the underlying cause of ...basically everything for SOME ASD kids--never all of course. And it is so treatable. Dr. Walsh is amazing. Here are some great links--for those not ready to order materials from the AHC site. These are long but I highly highly recommend printing them and reading them thoroughly. They will mean more for those who have tracked/tested for yeast/metals/pyroluria/food sensitivities, because you may start seeing patterns. Certainly the interrelationships are key. http://www.alternativementalhealth.com/art...icles/walsh.htm http://www.alternativementalhealth.com/art.../walshMP.htm#Py Also here is a great Linus Pauling vitamin site on all the interrelationships between vitamins, e.g. never take folic acid without B12, etc... http://lpi.oregonstate.edu/infocenter/contentnuts.html So Jennifer, I want to thank you for being one step ahead here again, at least on the path I think is important for me to pursue. Thanks a million! You might consider the $40 pyroluria test too. The zinc issues it uncovers could be related to the zinc issues with the MT protein. For the rest of you, the links say things like Inositol is good for undermethylated people, but bad for overmethylated people. There are histamine tests you can do to determine this. It goes back to my view that one supplement program does not fit all. Claire ps just posting general knowledge.

In case Heather hasn't responded yet, I wanted to post the link of doctors that are at the top of this site. http://www.latitudes.org/forums/index.php?...p?showtopic=565 You will have much better luck finding a knowledgeable doctor from this list than trying general practioners and neurologists who don't specialize in this type of treatment. Quite a few of us who didn't have a good practioner found our doctors from this link. Good luck. Claire

Oly mom, I should have posted this one first. One more. Note the above discussed photosensitive epilepsy, but then it discusses the 8% of the non-epileptic population that reacts to light flicker. This is what is the trigger for some in CRT screens and fluorescent light. Below, please note the distinction between an epileptic reaction and a 'jerking response (to light flashes) in the facial muscles.' Jerking of the facial muscles are tics! They just don't called it TS or tic syndrome. http://www.indegene.com/Opt/FeatArt/indOpt...ptFeatArt6.html "Bickford made a distinction between a photo-myoclonic response and a photo-convulsive response. Photomyoclonus was a jerking response to light flashes in the facial muscles that could be detected in many normal subjects.In contrast,a clear generalised (poly)spike and wave discharge evoked by ILS was strongly related to a history of epilepsy," Other articles in my photosen. thread discuss TV etc.. having this hidden light flicker. Good luck! Claire