Sheila

Hi Grandma, we're glad you wrote. Leo is very lucky to have you in his life, and I'm sure you will be able to help him. We understand from your description that he has had tics and vocalizations for more than two years now. It's good that they have been mild enough that he has not been concerned and kids have apparently ignored them -- until now. It sounds like a good move of yours to check out the before-school club. Our forum members would be curious to know what he eats there. Also, what would he typically be eating if not at the club. Does his mother have him on any particular type of diet? Food is always a great place to start, but there are other things to consider also. You mention video games. Does he play a lot of those at this early morning program? Is there a family history of allergy? Do you think he has outdoor allergies and are they high right now at this time of the season? What about the setting for this club -- have you or his mom ever noticed if it smells musty or moldy in there or in his classroom? Or have they renovated anything at school lately-- new paint, new carpets? How about any changes at home? Please try to think of everything that might have changed in the last month or so and let us know, OK? Of course the increase could be unrelated to environmental factors (that term includes food). Like a viral or bacterial infection, increased school work, or other stressors. We hope you can find time to get back to us on these things, Grandma! (And you didn't ramble, you did a good job explaining.) Thank you, Sheila

Hi Megan, sorry for the delay in getting back to you. It's good you are doing a trial without dairy. How is your son doing today? The type of allergist can make a major difference if tics are clearly related to allergies, as you say you have noticed. Standard allergy approaches that rely only on blood tests or skin prick tests. testing multiple allergens at once followed by allergy injections that have not been individualized to reflect the degree of sensitivity can make tics flare. Typically you would want a doctor who can: Do specialized allergy therapy that is more specific than most allergists use (for example look for serial end point titration, provocation/neutralization, modified quantitative testing). Will assess any nutrient imbalances and prescribe a nutrient protocol to follow Will explore toxic overload if indicated Evaluates and advises on environmental factors that may be playing a role. Please reply to these questions, if you don't mind -- Do you have allergies in your family--including food reactions? Does your son go to school during the day or is he home-schooled? How is he when he wakes up in the morning as far as tics and mood? Does he have an air filter in his bedroom? I checked to see if mold seems particularly high in your area right now but it didn't seem to be. Mold is a common culprit. Any chance you have a new or growing mold issue in the home? Also, you need to read our book Natural Treatments for Tics and Tourettes if you have not. It has much more information that we can offer in the Forum. It's available on Amazon or our store. Your son is in need of a quick intervention. Please let us know if the no-dairy seems to be making a significant difference. Remember that it's sometimes hard to keep other factors constant to know what is or is not helping. For example, you may be working hard on making sure his foods are no-dairy, and meanwhile he reacts to an unrelated exposure that throws things off. Or the no-diary is helping but he happens to be sensitive to the soy in the alternative beverage you selected. Keeping a detailed food and symptom log is advised. Finding the right professional to help can make a huge difference. Looking forward to hearing back, Megan -- Sheila

Hi Jamieh02, Nice to have you on our Forum, welcome. I'm so sorry your family is going through this with your young son, I know it is very difficult. We have a checklist for possible triggers. Don't get overwhelmed when you see it! These were shared by parents and doctors who had learned first hand or through patients of things that can aggravate or trigger tics. (In addition to videos you mentioned.) http://www.ticsandtourettes.com/downloads/acn_tics_triggers_checklist.pdf You can download it and print it -- then take some time to consider what might be playing a role in your situation and what changes you think you can make to help further nail down and avoid any triggers. However, if your son is having such a difficult time it could be good to see a neurologist while you do this, to rule out any other issues just so nothing is overlooked. When you are keeping the log you mentioned (a great idea!) be sure to include foods he is eating. Chemar has saved some key posts that have a lot of information you can go through. Its at the top of the page and "pinned." Its called Helpful Threads for Tourette Syndrome and Tics http://latitudes.org/forums/index.php?showtopic=2459 Please keep in touch and let us know how things are going. Members here would love to hear from you again and share their ideas/thoughts with you. Sheila

Hi Megan, Welcome to the Forum -- we're are glad to have you here! I'll write more tomorrow, but in the meantime I'm wondering where you live related to the allergies being so bad. Also, you sound like awesome parents, having done so many interventions already. (Nice family photo!) Sheila

Thank you so much for the supportive post, 3bmom! I agree with how frustrating it is to hear people talk of not being able to do anything to help. Unfortunately this is what they have been taught, right? The field of autism was lucky to have Bernard Rimland, PhD lead the way in finding new approaches to autism spectrum disorders. He was open to all ideas and he actually LISTENED to parents and valued their observations. His work opened the door to nutritional approaches to autism and it is taking a painfully long time for these concepts to filter down, especially with denial and criticism from the medical establishment. It's a good thing that a core group of physicians are being trained to help reverse autism. (Wish those same docs would take on Tourette patients!) There is so much families can do on their own, especially with diet and nutrition, as you point out. Thanks again and let's see how we can all get the message out! Sheila

We try to avoid too much controversy on the Forums--but that doesn't apply to my blog posts! We really need you right now. Please read our latest article that tells how the Tourette Syndrome Association (TSA) is ignoring the role of diet, the immune system, and the environment in tics and Tourettes. We need you to Comment on it. Then Share it! Why the Tourette Syndrome Association Should Be Investigated: Part 1. A key goal of ACN Latitudes is to move treatment and prevention of tics and Tourette syndrome forward. After more than 20 years of our efforts, it ain't happening at the mainstream level. Why? Because the Tourette Syndrome Association (TSA) has a monopoly on information that is made available to doctors and the media; the TSA is very, very powerful. They are also WAY behind the times (and even negative!) when it comes to the role of diet, allergy, the immune system, and environmental issues in neurological conditions like Tourette syndrome. Someone who recently attended a national TSA conference wrote in her comment to my article: Having *just* returned from the TSA conference last week, I was disappointed to attend a panel discussion on Nutrition, Exercise and Coping. . . None of the panelists had tried a GF/CF diet, and one joked that he was going to try a diet of one food a week to see how that went. We don't need panel "experts" joking about dietary approaches at a seminar that's supposed to help families. We aren't going to give up. This is only part one of a series of blog posts and we want to make sure the real story is told and the TSA is investigated. Please take a minute to share about the prevention and treatment of tics and Tourettes–and the role of the Tourette Syndrome Association. (Your email address will not be visible.) Comment here Thanks so much for your support – and stay tuned for more on this important topic! Click here to comment on the article and share it now! Sheila

We try to avoid too much controversy on the Forums--but that doesn't apply to my blog post Please read our latest article that tells how the Tourette Syndrome Association (TSA) is ignoring the role of diet, the immune system, and the environment in tics and Tourettes. We need you to Comment on it. Then Share it! Why the Tourette Syndrome Association Should Be Investigated: Part 1. A key goal of ACN Latitudes is to move treatment and prevention of tics and Tourette syndrome forward. After more than 20 years of our efforts, it ain't happening at the mainstream level. Why? Because the Tourette Syndrome Association (TSA) has a monopoly on information that is made available to doctors and the media; the TSA is very, very powerful. They are also WAY behind the times (and even negative!) when it comes to the role of diet, allergy, the immune system, and environmental issues in neurological conditions like Tourette syndrome. Someone who recently attended a national TSA conference wrote in her comment to my article: Having *just* returned from the TSA conference last week, I was disappointed to attend a panel discussion on Nutrition, Exercise and Coping. . . None of the panelists had tried a GF/CF diet, and one joked that he was going to try a diet of one food a week to see how that went. We don't need panel "experts" joking about dietary approaches at a seminar that's supposed to help families. We aren't going to give up. This is only part one of a series of blog posts and we want to make sure the real story is told and the TSA is investigated. Please take a minute to share about the prevention and treatment of tics and Tourettes–and the role of the Tourette Syndrome Association. (Your email address will not be visible.) Comment here Thanks so much for your support – and stay tuned for more on this important topic! Click here to comment on the article and share it now! Sheila

I don't know if this was posted previously, but it is free and sponsored by the Autism Research Institute. The main announcement says it is for PANS/PANDAS in kids with autism, but the general principles should be of interest--with or without autism. ARI says it will also be posted on their youtube channel, so if you can't make it today don't worry. The speaker is located in the Bronx. Website here. Register here FROM ARI: "Medical Support for Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS) & Pediatric Acute-Onset Neuropsychiatric Syndrome" Wed, Mar 19, 2014 1:00 PM - 2:00 PM ED We are recording this webinar and will post it on our YouTube channel - subscribe here: https://www.youtube.com/channel/UCewrICyE_Pl9LiyCHp6GnRQ Join us for Dr. Maya Shetreat-Klein's presentation on Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS) And Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). Dr. Shetreat-Klein is an integrative pediatric neurologist who is board-certified in Adult and Pediatric Neurology as well as in Pediatrics. She teaches integrative neurology as faculty at New York Medical College and UMDNJ, and lectures nationally and internationally. She completed residency training for Pediatrics at Long Island Jewish Medical Center, and then her Adult and Child Neurology fellowship at Montefiore Medical Center. Prior to that, she received her medical degree from Albert Einstein College of Medicine, where she was awarded the Edward Padow Award for Excellence in Pediatrics and graduated with a Special Distinction in Research in Child Neurology for her work in Autism. Dr. Shetreat-Klein graduated with honors from Columbia College in New York City with a B.A. in English literature. Dr. Shetreat-Klein sits on expert advisory boards for Autism Society of America’s Treatment Guided Research Initiative founded by Dr. Martha Herbert, for Healthy Child, and for Better School Foods. A “foodie” and lifelong environmental activist, Dr. Shetreat-Klein’s passion is to understand the connection between food, environmental exposures and health.

Many of our forum members have been following this case. The media has recently covered the plight of Justina Pelletier, who is in state custody. The parents do not yet have their child back so they can get proper medical treatment for her. Meanwhile the child's condition is deteriorating. Her desperate father just did an interview on Glenn Beck show, at the risk of being jailed for going against the gag order. A petition has been started and it needs your signatures. 100,000 signatures are needed. Full links for sharing: PETITION: https://petitions.whitehouse.gov/petition/order-justice-department-investigate-civil-rights-violations-justina-pelletier-case/7s77z28f GLENN BECK http://www.glennbeck.com/2014/02/17/watch-father-of-the-15-year-old-being-held-at-boston-childrens-hospital-speaks-out-for-the-first-time/ ABC NEWS: http://abcnews.go.com/Health/advocates-fight-teen-justin-pelletier-held-state-pysch/story?id=22312907 Thank you for your help -- Sheila

Hi Shirly, I have sent you a PM.

Hi Shirly, So sorry your son is dealing with tics. We really miss Dr Albert Robbins in S Florida since he retired; he was an environmental physician who used to see a lot of children with tics. There aren't others in FL who practice with the same approach he used. Please drop me an email and tell me more about your son's history, the symptoms he has, and what you have seen that affects the tics. Then we can work together in hopes of finding the right person for him, OK? You can write to acn@latitudes.org and please put your name in the subject line. Thanks. Sheila

First NE PANS/PANDAS 2–Day Conference WHEN: Saturday, November 9, 2013 * 7:30 am to 5:00 pm; Sunday, November 10, 2013 * 8:00 am to 5:00 pm WHERE: Providence Marriott Downtown; 1 Orms Street * Providence, Rhode Island ATTENDING: Parents, physicians, nurses, therapists, teachers, and anyone interested in the latest research and treatment ideas. Featuring Speakers: Dritan Agalliu, PhD * Kenneth Bock, M.D. Peggy Chapman, MSN * Madeleine Cunningham, PhD * Jeanne Hubbuch, M.D. * Beth Latimer, M.D. * Beth Maloney J.D. * Jamie Micco, PhD * Diana Pohlman * Susan Swedo, M.D. * Rosario Trifiletti, M.D.* Jolan Walter, M.D. * Kyle Williams, M.D. For more information or to register for the conference visit www.nepandasparents.com.

PGell, everyone knows that they can use conventional medication. There's plenty of information on that. Our Tourette forum is focused on natural and integrative therapies. Please refrain from these types of negative posts. Thank you. Sheila

New study abstract (July 3, 2013) is below. Full research here. Discussion article here. Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic ChildrenHigh proportions of autistic children suffer from gastrointestinal (GI) disorders, implying a link between autism and abnormalities in gut microbial functions. Increasing evidence from recent high-throughput sequencing analyses indicates that disturbances in composition and diversity of gut microbiome are associated with various disease conditions. However, microbiome-level studies on autism are limited and mostly focused on pathogenic bacteria. Therefore, here we aimed to define systemic changes in gut microbiome associated with autism and autism-related GI problems. We recruited 20 neurotypical and 20 autistic children accompanied by a survey of both autistic severity and GI symptoms. By pyrosequencing the V2/V3 regions in bacterial 16S rDNA from fecal DNA samples, we compared gut microbiomes of GI symptom-free neurotypical children with those of autistic children mostly presenting GI symptoms. Unexpectedly, the presence of autistic symptoms, rather than the severity of GI symptoms, was associated with less diverse gut microbiomes. Further, rigorous statistical tests with multiple testing corrections showed significantly lower abundances of the genera Prevotella,Coprococcus, and unclassified Veillonellaceae in autistic samples. These are intriguingly versatile carbohydrate-degrading and/or fermenting bacteria, suggesting a potential influence of unusual diet patterns observed in autistic children. However, multivariate analyses showed that autism-related changes in both overall diversity and individual genus abundances were correlated with the presence of autistic symptoms but not with their diet patterns. Taken together, autism and accompanying GI symptoms were characterized by distinct and less diverse gut microbial compositions with lower levels of Prevotella, Coprococcus, and unclassified Veillonellaceae.

Hi VDH, welcome to the Forums. It's great to read that you are seeing improvement in symptoms with homeopathy. Thank you for sharing your experiences. As your note shows, homeopathy can require multiple adjustments in remedies. The treatment usually needs to be individualized for people, so a remedy that helps one person many not help someone else. It would be good to know how the coming months go, so we hope you will please keep in touch. And we also hope you have found your answer. (I'm sending you an email message to explain why your text was edited.) Best wishes, Sheila

Hi Hopeful Mom, Welcome to the Forums -- and we agree there are lots of reasons to be hopeful! Please see this thread for ideas on where to look for doctors in your Lansing area. http://www.latitudes.org/forums/index.php?showtopic=565 Please drop me a private message (PM) if you have trouble locating anyone. We are unable to provide a list of recommended physicians because there are so many factors involved in individual needs, and so many different approaches taken by practitioners. We also try to avoid too much discussion of specifics regarding doctors in the Forums because they are public, but many members send private messages to others on this. We hope you find the help you need. Please stay in touch with us through the Forums in one if the categories (like Tourette syndrome and tics) and let us know how you are doing! Best wishes, Sheila

The article posted above by dut is a good place to end this discussion. The Child Mind Institute points out the dangers of associating a condition such as PANDAS with a particular act. http://www.childmind...d-and-bomb-plot It says in part: It's troubling whenever an act of violence is associated with a particular psychiatric disorder, because it's easy for people to stereotype other people with the disorder, wrongly, as prone to violence. Comments can be added to the Institute's article and you may wish to do that. Thank you all for your input on this difficult issue. Sheila

Hi -- Sorry to read of the very difficult time you have been through. Meth directly affects the central nervous system, and muscle tics and twitches/exacerbation of Tourettes, are a possible side effect, even when the drug is prescribed. It is feasible that your grandson has inherited a hypersensitivity. But that does not mean that he cannot be helped. Is he still in your care? So glad to know his mother is doing well now, that must be a big relief for you. Sheila

Thank you for bringing us up to date, and so good to know you have seen some improvement. How did things go when you started school up again? If you have a chance, please let us know how your biomed doctor recommendations go, including looking into pyroluria--sure hope that will be a helpful approach. Sheila

Press release May 2, 2013 Chalk dust can contain milk protein, triggering respiratory symptoms Many of today's school teachers opt for dustless chalk to keep hands and classrooms clean. But according to a study published in the May issue of Annals of Allergy, Asthma & Immunology, the scientific journal of the American College of Allergy, Asthma and Immunology (ACAAI), this choice in chalk may cause allergy and asthma symptoms in students that have a milk allergy. Casein, a milk protein, is often used in low-powder chalk. When milk allergic children inhale chalk particles containing casein, life-threatening asthma attacks and other respiratory issues can occur. "Chalks that are labeled as being anti-dust or dustless still release small particles into the air," said Carlos H. Larramendi, MD, lead study author. "Our research has found when the particles are inhaled by children with milk allergy, coughing, wheezing and shortness of breath can occur. Inhalation can also cause nasal congestion, sneezing and a runny nose." Milk allergy affects an estimated 300,000 children in the United States, according to the ACAAI. Although it has been believed the majority of children will outgrow milk allergy by age three, recent studies contradict this theory, showing school aged children are still affected. However, 80 percent of children with milk allergy will likely outgrow it by age 16. "Chalk isn't the only item in a school setting that can be troublesome to milk allergic students," said James Sublett, MD, chair of the ACAAI Indoor Environment Committee. "Milk proteins can also be found in glue, paper, ink, and in other children's lunches." Even in the wake of whiteboards, overhead projectors and tablets, chalk is a classroom staple that likely won't become extinct anytime soon. Parents with milk allergic children should ask to have their child seated in the back of the classroom where they are less likely to inhale chalk dust, advises Sublett. "Teachers should be informed about foods and other triggers that might cause health problems for children," said Sublett. "A plan for dealing with allergy and asthma emergencies should also be shared with teachers, coaches and the school nurse. Children should also carry allergist prescribed epinephrine, inhalers or other life-saving medications." ### American College of Allergy, Asthma, and Immunology If your child is sneezing and wheezing at school, you should see a board-certified allergist for proper testing, diagnosis and treatment. Contact: Christine Westendorf ChristineWestendorf@acaai.org

We have been requested to share information about a research study (University of Detroit Mercy) related to the experience of caring for a child with PANDAS. A PANDAS parent is overseeing the conducting of confidential interviews. Wanted: Research participants When: Immediately Purpose: to answer a short questionnaire over the phone, the phone call will be recorded, questions pertain to the experience of caring for a child with PANDAS. Children or teens who have PANDAS may also respond to the questions with parental permission. This study is being performed by the University of Detroit Mercy Objectives of Proposed Project: The objective of this study is to understand the experiences of living with Pediatric Autoimmune Neuropsychiatric Disorders Associate with Streptococcal Infections (PANDAS) from the perspective of the children living with the disorder and their families. Brief Description of Research Plan: Families and their children with PANDAS will be interviewed regarding their experiences. Structured and unstructured interview questions will be asked. Subjects will be contacted through a spokesperson (Mary Crombez) who is the parent of a PANDAS child and a family organizer for the disorder. Parents, grandparents and children living with the disorder agreeing to participate in the study will participate in at least one interview expected to take about 1 hour. The interviews will be tape recorded, transcribed and verbal transcriptions will be analyzed. Subsequent and follow-up interviews may be conducted to clarify analyzed data or obtain additional information. The results will be written and published in a scholarly journal. For more information or to set up your phone contact day/time please email: Mary Crombez, mmcrombez@gmail.com

Hi Vanessa, I hope Dr. Woodbridge can come up with the answers you need for your son. It would be great to have more doctors that can be recommended for families in Australia; it can be so hard to find help. I haven't seen all your posts but did see one asking about vocal tics. Please keep in mind that in addition to nutritional/dietary issues, and typical inhalant allergens and pets, chemicals in the environment are sometimes responsible for tics, including vocal tics which were mentioned in an early post of yours. If you have not done this, when a new tic starts up, you could try to figure out if any new exposure may have occurred at home, school, or elsewhere--for example, in personal products, formaldehyde in new furniture or pressed board cabinets, outgassing of plastics in a new car, paint, chlorine, new carpeting, scented candles etc. These are just some examples--so many things can be a trigger once someone is hypersensitive. Parents have reported tic reactions to all of these, and toxins can definitely set off vocal tics. In any event, I hope you will keep us posted on how things go with your son's appointment in June! Sheila

A new study failed to find any evidence to back up a suggested association between Lyme disease and autism spectrum disorders. Although a prevalence of Lyme disease as high as 20 percent (or even higher) has been reported in children with autism, the new research found no cases of Lyme disease in children when testing recommended by the U.S. Centers for Disease Control and Prevention was done. Full article here

This is adapted from a recent press release by the Feingold Association “Most parents don’t realize that several widely used preservatives and synthetic food dyes have been shown to trigger constriction of the airways and other asthmatic symptoms in sensitive children,” said Jane Hersey, National Director of the nonprofit Feingold Association (www.feingold.org), which helps families use a low-additive diet developed by allergist Dr. Ben Feingold. A 2012 study published in The International Archives of Allergy and Immunology concluded that the increased consumption of synthetic additives, particularly food dyes and preservatives, may have contributed to this rise. A massive new study published in Thorax, involving nearly 2 million children and teens from more than 100 countries, also found a correlation between consumption of an additive-laden fast food diet and increased levels of asthma, eczema and hay fever. In the United States, where asthma was relatively uncommon in the 1950s, it now affects about 1 in 10 children, according to the Centers for Disease Control. “The typical child’s diet has changed enormously over the last few decades and is very different from what children ate 50 years ago,” said Hersey, a former teacher and Head Start consultant. The connection between synthetic food additives and asthma is not a new one. In the 1980's, the Food and Drug Administration required that the common food dye Yellow 5 be listed on ingredient labels, due in part to the danger this dye poses to asthmatics. In addition, a 2004 study published in the International Journal of Immunopathology and Pharmacology found that the preservative sodium benzoate can trigger asthmatic symptoms, and a 2007 study published inToxicology and Applied Pharmacologyconcluded that the common preservative butylated hydroxytoluene (BHT) may worsen them. Ironically, the role that some preservatives play in triggering asthma was discovered when some asthmatic children experienced an immediate worsening of their symptoms after they inhaled their anti-asthma medications. It was found that the sulfite and sodium benzoate preservatives in these drugs were actually exacerbating the children’s asthma, and when the additives were removed from the medications, the symptoms disappeared. How can parents determine if synthetic food additives may be triggering asthmatic symptoms in their children? If they experience shortness of breath, chest tightness, coughing or other asthma-like symptoms after eating artificially preserved or colored foods, they might be sensitive to the additives. If this is the case, try replacing the suspect foods with more natural versions that do not contain the additives and see if the symptoms reoccur. Parents can be helped with this by the Feingold Association’s Foodlist and Shopping Guide, which lists thousands of low-additive versions of brand-name foods. ------------- References Zaknun D. et al. Potential role of antioxidant food supplements, preservatives and colorants in the pathogenesis of allergy and asthma. International Archives of Allergy and Immunology, 2012, Vol. 157(2), pages 113-124. (http://www.ncbi.nlm.nih.gov/pubmed/21986480) Ellwood P. et al. Do fast foods cause asthma, rhinoconjunctivitis and eczema? Global findings from the International Study of Asthma and Allergies in Childhood (ISAAC) Phase Three. Thorax, 2013, Vol. 68(4), pages 351-360. (http://www.ncbi.nlm.gov/pubmed/23319429) Asthma in the U.S., Centers for Disease Control and Prevention, Vital Signs, May 2011. Balatsinou L. et al. Asthma worsened by benzoate contained in some antiasthmatic drugs. International Journal of Immunopathology and Pharmacology, 2004, Vol. 17(2), pages 225-226. (http://www.ncbi.nlm.nih.gov/pubmed/15171824) Yamaki K. et al. Enhancement of allergic responses in vivo and in vitro by butylated hydroxytoluene. Toxicology and Applied Pharmacology, 2007, Vol. 223(2), pages 164-172. (http://www.ncbi.nlm.nih.gov/pubmed/17604070) The nonprofit Feingold Association (www.feingold.org / 800-321-3287) helps families implement a low-additive Feingold Diet. Press release contact: David Guzo, Ph.D., Susan Guzo (570) 639-5030

The Sunday NY Times had an article on cases where there is a misdiagnosis of ADHD when the underlying problem is a sleep disorder. Article here. Letters to the editor in response are here.