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.

Hi Mar, Here are some forum links on expanders and tics, and they tend to be quite reassuring and positive. Hopefully your daughter will experience the same. At least you are aware that in some cases there might be a reaction, and you can deal with that if it happens to occur. These links are the first ones that came up for me; you could search "expanders" in "forums" and see what else you find. Please do let us know how things go. Hoping for everything to go smoothly, Sheila http://www.latitudes.org/forums/index.php?showtopic=16586&hl=expander http://www.latitudes.org/forums/index.php?showtopic=20165&hl=expander http://www.latitudes.org/forums/index.php?showtopic=20165&hl=expander http://www.latitudes.org/forums/index.php?showtopic=10160&hl=expander

This was moved from the OCD forum in the hope that members posting on PANS might have some comment.

Good luck with looking into allergens and chemical exposures. Am not sure if you have seen this article on triggers on our site. It is expanded in our book (the book is featured on the website where those worksheets are provided); the article gives you a quick start. http://latitudes.org/articles/finding_triggers.htm The comment about infection was just a general one, am not implying that one exists. It's good he hasn't been on a lot of antibiotics. For sure it could be a good idea to look into candida, especially since this was mentioned to you already. Many with tics report a reaction to sugary and yeasty foods, and this is sometimes connected with candida.

This is a video prepared by Dr Demerjian in Burbank, California, contact info at the end of the video. There is definitely a connection with jaw alignment for some people with tics/TS. It's always encouraging to see success stories. You can find other videos online. Here's a published case report http://www.tmjstack.com/casereport.pdf

Hi -- again, have a related comment under your Tourettes forum thread. NAET is difficult for me to respond on. Some people find it helpful and some reputable practitioners endorse energy medicine like NAET and similar approaches; other families report it was not useful. It may depend both on the the individual health circumstances and the person doing the testing.(If NAET treatments were going to clear the food allergies, shouldn't your son be able to tolerate the foods better and not need the strict elimination diet? Or did you just use it for identifying troublesome foods?) I can say that OCD, tics and hyperactivity can all be affected by foods, allergens, and chemical exposures. I personally would explore more traditional testing for inhalants (as mentioned in Tourette forum). Not sure if that is feasible for you. It's not possible to predict whether managing allergies will completely eliminate symptoms, but it should help. If there is an unidentified exposure or infection that is creating an underlying immune hypersensitivity, it could be difficult to completely heal until those factors are under control. These are just general comments, naturally can't be sure about your particular situation. You son sounds like a real trooper though, having cooperated with your efforts -- and fortunately finding some success. Sheila

For the inhalant allergies, you might want to consider Modified Quantitative Testing (MQT). It is mainstream, generally covered by insurance, and is considered more accurate than standard skin pricks. It provides a more specialized therapeutic dose than standard inhalant testing. Could look for someone experienced in this technique. If you introduce a new food back into his diet that you already know he has been sensitive to, a very small amount should be used to avoid the possibility of a significant reaction. Also, try to have it in pure form (not a processed food) and organic. For example, a little organic cream of wheat made with water versus a muffin. This assumes wheat is a problem, not a gluten sensitivity. Avoidance of a food for more than a year is often helpful in reducing reactions in mild to moderate food issues, but it depends on the severity and type of food. Peanuts, tree nuts, fish and shellfish are often the most long term. Some allergists prefer to have a child retested for a food before introducing it orally, to be sure it seems safe -- again, depending on the circumstances; and some want to have any oral challenge done in their office. You can be the judge of whether that is needed based on the level of reactions to foods that you've seen. It is important to be sure that he avoids all chemical additives in foods including artificial sweeteners, while you also watch the environmental exposures. And keep sugars to a minimum. Has anything else changed for him -- new house, remodeling or painting, leaks and mold, pest treatments, new car, new or remodeled school? And what do you think about his bedroom--how is it as far as electromagnetic exposures and dust, pets, etc? Sheila

Bumping for content on approaches to home electromagnetic exposures.