Ronnas

Thank you to all of the "oldies" that remember me and to the "newer" posters who were so nice to post! To answer a question about the Arrowsmith School, all of the schools locations in Canada and the USA are listed on the website. I linked the page with a lot of info: and articles about Arrowsmith. We are in Saskatchewan. http://www.arrowsmithschool.org/articles.htm I will try and pop in more often, I simply cannot believe how busy this forum is...oh my gosh, no kidding, PANDAS mom's were very few and far between 10 years ago, not to mention the information... I have taken my "online" self and become very active in the community and I sit on the board of the Learning Disabilities Association of Saskatchewan, and I am involved with the United Way and I am an impact speaker for the United Ways WorkPlace Campaign. I thought I would post my speech below for those that may be interested. Ronna On behalf of the United Way and The Learning Disabilities Association of Saskatchewan, thank you for giving me the chance to talk to you today. My name is Ronna S. and I am on the board of director’s of the Learning Disabilities Association of Saskatchewan (who I will refer to as LDAS as I only have 10 minutes to speak to you!), but most importantly I am the mom of a wonderful, 13 year old boy, Kurt, who has severe learning disabilities. Today I would like to speak to you about why I think it is important to support the United Way of Saskatoon, who provides funding to LDAS and many other wonderful organizations in Saskatoon and area. I would like to read to you a letter I wrote to the United Way last spring and another letter I wrote to LDAS in June. Dear United Way of Saskatoon & Area Board of Directors, I am writing on behalf of my 13 year old son, Kurt, and our family to express our sincerest appreciation for the United Way’s contribution to the Learning Disabilities Association of Saskatchewan (LDAS). Our son was diagnosed eight years ago at the age of five years old with severe learning disabilities, some of which include an auditory and visual processing disability, difficulties with short term memory, difficulties with expressive and receptive language and dyslexia (which is difficulties with reading) and dyscalculia (which is difficulties with math). We became involved with LDAS four years ago when my son began the ABSee Reading program and private one-to-one intensive tutoring, progressing to FastForWord in 2007, and in 2008/2009/2010 the Arrowsmith School which he attends for half days in the morning. It is through the support of the United Way that LDAS is able to continue to strengthen existing programs such as the ABSee Reading program, Summer Sunshine Day Camp, Adult Upgrading/ and G.E.D. preparation and testing and develop new and innovative programs such as the Arrowsmith School, A.D.D. Coaching, FastForWord and Screening for Success. My son has had an exceptionally good year in the Arrowsmith School thanks to all of the dedicated and professional staff at LDAS. I believe the United Way and LDAS are positive partners in helping to improve lives and build strong communities for the learning disabled children, adolescents, adults and families of Saskatoon and area. Thank you for your combined efforts in assuring quality programs for those with learning disabilities in Saskatchewan One year ago LDAS brought to Saskatoon the Arrowsmith School. It is one of the most promising programs in the world for children with Learning Disabilities. The goal of the Arrowsmith Program is to help students strengthen the weak cognitive capacities underlying their learning dysfunctions and to enable them to become effective, confident and self-directed learners for life. The Arrowsmith School has schools in Toronto, Vancouver and throughout the United States and now Saskatoon. Two recent documentaries on CBC include “The Brain That Changes Itself” with David Suzuki on CBC’s the Nature of Things and CBC, “The Lens” has also done a documentary on the Arrowsmith School’s in the last year. We are very fortunate to have an Arrowsmith School in Saskatoon and it has enabled our family to remain together in Saskatoon rather than travel to Toronto so that my son can benefit from this program. My letter in June of this year to LDAS and Arrowsmith is as follows... Dear Arrowsmith School, June 20th, 2009 Thank you so much for your hard work this year with Kurt! We are so pleased that Kurt is improving academically, but it is the increased confidence, self esteem and having a better understanding of himself and the world around him that we have really noticed as a result of Kurt's first year in the Arrowsmith School. At the start of this year Kurt was still basically a non-reader and math was nearly impossible for him. Kurt is a thoughtful boy but often made bad decisions because he simply couldn't think through the consequences. He hated getting into trouble and every time he was extremely remorseful. He hated his brain and himself at times. But his difficulties continued, despite years of tutoring, and positive support both at home and in the school system. Our school system has been incredibly supportive, and we did not come to the Arrowsmith School because we were unhappy with our school but because we knew that Kurt needed more intensive help which could be provided by the Arrowsmtith School. Kurt started Arrowsmith in September a year ago and we have noticed a marked difference in his behaviour. Academically things had improved. Kurt was easier to talk to, kinder, not nearly as frustrated. Now we see changes in Kurt almost weekly. Kurt has become a more thoughtful big brother and leader in our family. He is responsible and confident in his abilities and is able to responsibly baby sit his siblings if needed. I recently had a meeting with his grade seven teacher and the learning assistance teacher who both know Kurt well and they stated he is working much more independently, and is consistently showing an improvement in attention. Kurt independently transitions between subjects and activities by replacing and readying materials as needed. He has shown significant improvement in reading, written assignments and math. If you asked Kurt how Arrowsmith has impacted his life he would tell you about all the things that are important to him: being able to type and communicate effectively on MSN and Facebook (although on these sites being a good speller does not seem to be a priority!); he has improved at team sports like football; he is a show lots of improvement at guitar and is more comfortable reading "chapter books" and comics! The change in Kurt has been a blessing and has given us all hope for Kurt's future! We look forward to continuing to work together with the Arrowsmith School next year! Finally, I would like to tell you about the first book Kurt read independently this past spring. Kurt is a good looking, nice boy who likes girls and they like him, but I had noticed that when girl’s talked to him he looked like a deer caught in the headlights. …maybe some of you remember being a 13 years old and can relate! Well, I was walking through Wal-mart and I saw a book called, “How To Talk to Girls”. My first reaction was to wonder how I would ever be able to read this book to him because it is one thing to read Goosebumps books, but I was pretty sure the last thing a 13 year old boy would want is his mom or dad reading him a book on talking to girls. His reading had improved tremendously in the last year so I gave him the book and told him to ask me if he needed any help reading it. Well, about a week or so went by and I asked Kurt if he had read the book. He looked at me and said, “Mom I read it 3 times!” Great, I thought, but did he understand what he had read? So I asked him to tell me 2 things he had learned from the book… And he said… 1. Don’t act all hyper when you are talking to a girl, like you just ate 3 chocolate bars. 2. Just keep asking a girl questions, like “what movie do you like” and she will do ALL the talking. Well that is good advice that should last him at least through high school if not his whole life! We are tremendously happy to call Kurt a READER now! If you would like more information about LDAS or Arrowsmith you can check out their websites. In closing, I would like to encourage you to join our family in supporting the United Way who provide direct funding to many wonderful, deserving organizations like the Learning Disabilities Association of Saskatchewan. Thank you to the United Way and to all of you for taking the time to listen to me today! Finally I will leave you with a short story that gave me comfort many years ago... WELCOME TO HOLLAND by Emily Perl Kingsley. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Hi to All, I have thought often of everyone on this forum and have let the years slip away and my visits here have been infrequent. As I was browsing through the posts this evening, my heart beat a bit faster as I remember the struggles we had years ago with our son. In the last few years the business of our life just completely took over and it was easy to drift away, especially as Kurt has done so well over the last few years and the birth of our 4th child in 2005 took away any "time" I had previously. I am sure buried in posts long forgotten are my posts about PANDAS. It is a long story and my memory of it all has faded over the past few years. My son was diagnosed with PANDAS in 2002. His tics were severe with a neck tic being probably the worst one which at times were so severe Kurt would cry and cry to make it stop. His tics were unrelenting. Oh see, now I am getting tears in my eyes as I remember the little guy he was. I think as my youngest boy turns 5 in June, I look at him and I literally can't believe how "little" Kurt was when all of this started for him! Kurt is turning 14 in a few weeks and has been on azithromycin once a week for about the last 6 years (it is hard to remember exact numbers!) It has been at least 3 years since I have noticed really any tics at all that I can remember. We have tried stopping the azithromycin but have restarted it again because he just seems more "settled" on it. Without the azithromycin he is just a bit more tempermental and I suspect if I left him off long enough he would have some tics. Either way our plan is to keep him on the azithromycin until he is 18 years old. And "yes" if you are wondering we do have a wonderful doctor but believe me it was a long process to get him on the azithromycin. He is doing amazingly well. He does have learning disabilities which are our biggest challenge now but he is in an amazing school called "Arrowsmith" and if you google it, it is a school that believes in "fixing" the ld's by doing repetitive cognitive brain exercises and creating new pathways in the brain based on neuroplascitiy of the brain. He is just about done his second year and has one more to go after this year. He had made more progress in one year last year than he has in the previous six years combined and believe me in those six years we tried everything possible! I am quite "out of the loop" in terms of "where" the PANDAS research is at. When we started on this journey PANDAS was hardly a blip on anyone's radar, at least now I suspect most doctor's have at least heard of it which was NOT the case in 2001/02! My best to all of the parents struggling. I have found over the years that all of the things I worried about so much never actually happened and it was maybe the things I never thought about that actually posed the challenge! My best advice would be to take it one day at a time! My son is a happy, healthy, delightfull young man that I am enormously proud of! He has a lot of friends, girls are always sending him messages on facebook, he is determined and hard working. He loves sports and is very healthy and fit. Life is still a challenge at times but it is manageable and time was the best healer of all and I do think he has "outgrown" most of the difficulties that arose with PANDAS. Take Care, Ronna

I will be checking in often, and will try to respond ASAP but please dont think I am ignoring you if it takes a day or so Hi Cheri! I have thought of everyone here so often! How fast the years can pass! I have "popped" in over the years but as Kurt has done well for such a long time now it is easy to put behind me the many years I posted on Latitudes! I hope all is well with you! All of your years of support to parents who are struggling has been and will be a blessing to everyone! I will never forget the years of support you gave to me! I will post an update on the PANDAS forum! Oh my, I think I was one of or maybe the original PANDAS poster, and look now there is a really busy separate forum! All my best, Ronna

Antibodies To Strep Throat Bacteria Linked To Obsessive Compulsive Disorder In Mice ScienceDaily (Aug. 13, 2009) — A new study by researchers at Columbia University Mailman School of Public Health's Center for Infection and Immunity indicates that pediatric obsessive-compulsive disorder (OCD), Tourette syndrome and/or tic disorder may develop from an inappropriate immune response to the bacteria causing common throat infections. [Mady Hornig, MD] http://www.sciencedaily.com/releases/2009/...90811143538.htm

Hi Melanie, I am not on here as much as I use to be but do try to pop in when I can. I do agree that threre is no "cure" for TS, but with time and the appropraite treatments there is lots of hope for your son. Really each child is so different and it takes time to find the right combination of things that are helpful. My son is a PANDAS kid and has been on 500 mg azithromycin once a week for 4 years now. At present we are not needing to use supplements anymore. He eats very healthy and he is a active, healthy 12 year old (almost 13) and it has been at least 2 years since he has ticced, other than some very, very slight tics when he is very tired or ill. My son's tics at one point were severe and debilitating, especially from the ages of 6-9 years old. It was a long road but here we are and he is doing well. Don't put too much emphasis on one comment made by an insensitive doctor. From your posts it looks like you are on the right track. Hang in there and with time this all gets much easier. Ronna

Hi Everyone, Dr. Swedo's talk from the DAN conference a few months ago is posted. It is up now at: http://www.autism.com/danwebcast/videoflv....=720&VID=93 . It starts with PANDAS info, goes into autism, then more on future studies and OCD. On another message board a person said that she asked Dr. Swedo how the how the original group was doing. Dr. Swedo said the original group did not receive treatment and so had some ongoing problems. The second group, which did receive treatment, was continuing to do very well. This poster also said "this is a great video though most of the info will probably not be new to you. I've seen Dr. Swedo speak twice and still found the video to be helpful. The talk at the end about upcoming studies is encouraging. One is for Riluzole, but it is quite an expensive drug at this time". Ronna

I read the book a few years ago and I thought it was a great book. Looking forward to the movie. I think I saw him in some interviews also...Oprah? I live by the quote..."if this is the hardest thing you have ever been through then it just is and it doesn't matter if someone is going through something worse"...but having said that, let's keep things in perspective... Although TS is debilitating in the most severe cases and my heart goes out to those with severe TS and the parents...really I am here to tell you...my son had severe tics...he use to BEG me to make them stop when his neck was so sore he could hardly stand it anymore, we use to get stared at when we walked through the mall...he was just a little guy at 7 years old and my heart really broke but really the tics have been the LEAST of my worry in hindsight. My son's learning disabilities have been much more of a challenge. There are so many interventions you can do for TS...Shiela's book is awesome...the amount of information online even compared to 5 years ago is so much more. There is so much you can do to feel empowered as a parent. We enlisted the help of ALL of our family. Not for one second has any of our extended family been anything but completely understanding of my son...as a matter of fact I have to encourage them to be a bit harder on him. When a movie or documentary is on TV I email EVERYONE to watch...the more education and understanding about TS the better for my son! For everyone that worries so much, years ago, I read this quote and I have kept it in mind ever since... "You can worry all you want but for sure the thing you worried the most about will not be a problem but it will be something completely out of left field that will land you on your butt"...so I guess I am trying to say...stay in the moment...there is nothing you can do about the future but there is lots you can do now as a parent. My son is going to be 13 soon, life is good, and he is happy!

Hi All, I think lots of members will remember me. It's hard to believe but my sons tics began more than 7 years ago just prior to kindergarten. I won't re-tell our story, it is long and very similar to so many on this forum. I use to post frequently here and was pretty active on the old braintalk. I do pop in from time to time to see how everyone is doing. My thought and prayers to all the parents who are just starting down this road or are in the midst of it all. We did it all with my son, vitamins, naturopath docs, diet changes (removing casein was the biggest help), acupuncture, vision therapy, the list could be a mile long.... It is hard for me now to give specific time lines...I never did keep a journal, I thought at the time it would be impossible to forget all we were going through...time does heal, and of course I have forgotten the specifics on most things. An update on my son... He is 12 years old and doing very well. He has been on azithromycin for maybe around 3 years or so...500 mg every 5-7 days. If we do miss his dose (life gets so busy sometimes and really when he is doing so well it is easy to forget!), I do notice a change. Overall though I would say that he is tic-free (maybe just the most minor of tics that only I could notice and even then I could question whether he is actually ticcing). Obviously, I think the azithromycin made a HUGE difference for my son but I do feel that "overall" he is outgrowing some of his PANDAS symptoms. We limited casein, eggs, and chocolate for years. Not so much anymore. He is absolutely growing like a weed in the last year and is starving in only the way a pre-teen boy can be...he is a fantastic eater, not picky with any food and I don't find I have to monitor him much other than to say...NO POP! As far as vitamins, I now just rely on L'il Critter Gummy Vites and L'il Critters Immune C plus Zinc and Echinacea (Immune Booster) from Costco (I use it for all of our kids)....and myself for that matter, because I HATE swallowing vitamins! Our energies in the last few years have really focused on supporting him with his learning disabilities which are very severe. We did FastForward with great results, years of one-on-one tutoring and now this year his enrollment in Arrowsmith School which began in our city this year. The school was started initially in Toronto and now has centers throughout Canada, New York (New Jersey area I think) and California. This school has been nothing short of AMAZING for my son. He is thriving and doing wonderfully. The commitment is HUGE. He attends Arrowsmith school 1/2 days and then our community school in the afternoons. Our community school has been fantastic in supporting us, even changing the class schedule so that my son did not miss gym class and some of his more favorite classes. Attending our community school for just 1/2 days has been great for my son. He seems sooooo much more relaxed, and it is only now that I realize how STRESSFUL a full day of regular school was for him. He was truly amazed to meet other kids just like him at Arrowsmith. He has lots of friends and is doing well socially and most importantly has a best friend that seems rock solid. We tried an endless amount of sports to find one that suited him (seriously everything under the sun) and he is now doing really well with wrestling and has been invited to wrestle with the elite team. He LOVES guitar and takes lessons once a week. Guitar has been a HUGE stress reliever for him and I have taught him to go in his room and play guitar when he is stressed. Having said all of this, we still have our challenges, some days I still do feel like he takes more work than the other 3 kids put together but really things are soooo much better now. Time really does heal so much! With Arrowsmith the homework requirement is 1 1/2- 2 hours per night/ 6 days per week, he struggled with this at first but with some encouragement and bribery from Grandpa (I just found out about the bribery thing last week... , He is doing well and thriving, really more concerned with the fact that girls are interested in him (he is shy), how his hair looks, and about the clothes he is wearing and wanting a PSP for Xmas...all really normal 12 year old stuff. He has a job shoveling snow which he is doing well at. So for all of the young moms, or the moms new to this, take heart, with time things do become so much easier. Ronna http://www.arrowsmithschool.org/ http://www.cbc.ca/documentaries/thelens/2008/fixingmybrain/ http://www.cbc.ca/documentaries/natureofth...nchangesitself/ A fantastic book! http://www.amazon.ca/Brain-That-Changes-It...8385&sr=8-1

Hi Myrose, Although I do not post as often anymore I do try to pop in when I can and read posts. Your post interests me because I remember being where you are a few years ago... WHY, WHY, WHY.... My son had severe tics from onset at 5 years 4 months (I could tell you the day!) till around 8-9 ish and since being on azithromycin every 5 days for the past 3-4 years (it is important to write things down and journal because here I am years later and it seems like I cannot remember anything anymore...it is all a blur!!!) My son also has severe learning disabilities which for obvious reasons have taken most of my energy and time in the last couple of years. I spent years wondering why! I know this is an absolutely obvious point but why have you been so focused on your side of the family...what about your daughters father and his family. I can see how genes from BOTH sides of the family MAY have contributed to my son having learning disabilities and TS and PANDAS...or then again maybe not...who knows...I could give you a laundry list of ideas, it really is endless... Complications during my pregnancy including hyperemesis, high blood pressure, I did eat healthy enough while pregnant, did not take enough vitamins (seriously I was way to sick!!!), too many ultrasounds, epidural...in terms of my son...allergies, food and environment, exposure to a pesiticide at age 5, immunizations, vit def, family hx of rheumatic fever on my on my fathers side of the family, autoimmune diseases on my husbands side of the family, a few ticcy relatives on my husbands side, nothing like my son though, I certainly can see PANDAS issues in myself as a kid, my brother has some milder learning disabilities, as I have learned more about learning disabilities I can see some in myself even though I did not struggle and have a university degree but compensated well,.....anyways, given enough time I could go on all night... I guess what I am trying to say is that after going through all of this and after going through the grieving process, it does not really matter WHY anymore. It is what it is.... My other 3 kids are fine, my brother has 3 kids and no learning disabilities, my husband has a sister with 2 kids, a boy and a girl (the boy may show signs of a learning disability...certainly nothing nearly as severe as my son, and his sister was a bit ticcy last winter), his brother has 3 girls...all fine... On my husbands side we do have a cousin whose son is also ticcy... Who knows which second cousins etc of yours...may tic... Obviously, you know what a tic looks like and probably can spot a kid a mile away with one...I know I can...but in your family history you are relying on your extended family acutally knowing what a tic is...my second son had a very transient tic for a few years in the fall, if it were not for my older son and his tics I would NEVER have known what my second son had was a tic!!! For that matter it did not happen this fall and seems to be gone. Anyways, now I am feeling like I am starting to ramble...with time this all gets MUCH easier and the why does not really matter so much. Take care. Ronna

Hi Carolyn, good question that I have some experience with. My son is a PANDAS kid. His first episode happened shortly after receiving his 5 year old immunizations. Do I think there is a connection...probably. By the time I had noticed this connection, my other son and daughter were finished with their baby and toddler shots. When my son with tics was 9 years old I became pregnant with my youngest son. Believe me prior to having my fourth baby I swore I would not vaccinate another child...after he was born I changed my mind. I did a lot of research and I do believe in immunizing my kids. What I do know is that compared to my 2nd and 3rd children my oldest son was always more ill with his immunizations so with my youngest son I kept this in mind. First I delayed the immunization schedule until he was older. (In reality it was just so stressful the thought of immunizing him that I kept putting it off). Following his first immunization I monitored him closely and found that his reaction was similar to my 2nd and 3rd child which reassured me. I made sure that the baby was completely healthy if receiving an immunization...not even a sniffle and really tried to space out the immunizations over a longer period. So far my 3 year old son seems well, no problems, no tics, speaking well etc. I will immunize him prior to kindergarten. I must say a MUCH harder decision this year was whether to let my 12 year old PANDAS son receive his immunizations. I went ahead with them, personally I could not live with myself if he became ill or had complications from an preventable illness. If he did tic more, well so be it, been there done that and I knew we could deal with the tics. Anyways, I am happy to report that so far (immunization was about 6 weeks ago) other than a bit of a sore arm and a few days of crankiness he seems fine. No tics. WHEW!!! Just my experience for what it is worth. Ronna

Interesting! Thanks for the post! Ronna

Welcome to this great message board. I would continue to pursue PANDAS with your doctors. As said by others the trend in the titers is what is important. Here is some important informantion about the strep tests used...Overall, I would really recommend speaking with your doctor again and doing a trial of antibiotics again, azithromycin in particular, to see if you see an improvement in the tics and behavior BEFORE even considering some of the tic medications like clonidine etc. As well it would be helpful to ask for a referral to a doctor with experience with PANDAS or at the very least ask your doctor if he has even treated a child with PANDAS. If you notice an improvement with the azithromycin then you are most likely on the right path with PANDAS and need to continue to pursue this. Hope this information below helps. Ronna Streptococcal antibody tests Definition Streptococcal infections are caused by a microorganism called Streptococcus. Three streptococcal antibody tests are available: the antistreptolysin O titer (ASO), the antideoxyribonuclease-B titer (anti-Dnase-B, or ADB), and the streptozyme test. Purpose The antistreptolysin O titer, or ASO, is ordered primarily to determine whether a previous group A Streptococcus infection has caused a poststreptococcal disease, such as scarlet fever, rheumatic fever, or a kidney disease called glomerulonephritis. The anti-DNase-B (ADB) test is performed to determine a previous infection of a specific type of Streptococcus, group A beta-hemolytic Streptococcus. Identification of infections of this type are particularly important in suspected cases of acute rheumatic fever (ARF) or acute glomerulonephritis. Streptozyme is a screening test used to detect antibodies to several streptococcal antigens. An antigen is a substance that can trigger an immune response, resulting in production of an antibody as part of the body's defense against infection and disease. Precautions For the ASO test, increased levels of fats, called beta lipoproteins, in the blood can neutralize streptolysin O and cause a false-positive ASO titer. Antibiotics, which reduce the number of streptococci and thereby suppress ASO production, may decrease ASO levels. Steroids, which suppress the immune system, consequently may also suppress ASO production. Also Group A streptococcal infections of the skin may not produce an ASO response. Antibiotics also may decrease anti-DNase-B (ADB) levels. Description Streptococcal infections are caused by bacteria known as Streptococcus. There are several disease-causing strains of streptococci (groups A, B, C, D, and G), which are identified by their behavior, chemistry, and appearance. Each group causes specific types of infections and symptoms. These antibody tests are useful for group A streptococci. Group A streptococci are the most virulent species for humans and are the cause of "strep throat," tonsillitis, wound and skin infections, blood infections (septicemia), scarlet fever, pneumonia, rheumatic fever, Sydenham's chorea (formerly called St. Vitus' dance), and glomerulonephritis. Although symptoms may suggest a streptococcal infection, the diagnosis must be confirmed by tests. The best procedure, and one that is used for an acute infection, is to take a sample from the infected area for culture, a means of growing bacteria artificially in the laboratory. However, cultures are useless about two to three weeks after initial infection, so the ASO, anti-DNase-B, and streptozyme tests are used to determine if a streptococcal infection was present. Antistreptolysin O titer (ASO) The ASO titer is used to demonstrate the body's reaction to an infection caused by group A beta-hemolytic streptococci. Group A streptococci produce the enzyme streptolysin O, which can destroy (lyse) red blood cells. Because streptolysin O is antigenic (contains a protein foreign to the body), the body reacts by producing antistreptolysin O (ASO), which is a neutralizing antibody. ASO appears in the blood serum one week to one month after the onset of a strep infection. A high titer (high levels of ASO) is not specific for any type of poststreptococcal disease, but it does indicate if a streptococcal infection is or has been present. Serial (several given in a row) ASO testing is often performed to determine the difference between an acute or convalescent blood sample. The diagnosis of a previous strep infection is confirmed when serial titers of ASO rise over a period of weeks, then fall slowly. ASO titers peak during the third week after the onset of acute symptoms of a streptococcal disease; at six months after onset, approximately 30% of patients exhibit abnormal titers. Antideoxyribonuclease-B titer (anti-DNase B, or ADB) Anti-DNase-B, or ADB, also detects antigens produced by group A strep, and is elevated in most patients with rheumatic fever and poststreptococcal glomerulonephritis. This test is often done concurrently with the ASO titer, and subsequent testing is usually performed to detect differences in the acute and convalescent blood samples. When ASO and ADB are performed concurrently, 95% of previous strep infections are detected. If both are repeatedly negative, the likelihood is that the patient's symptoms are not caused by a poststreptococcal disease. When evaluating patients with acute rheumatic fever, the American Heart Association recommends the ASO titer rather than ADB. Even though the ADB is more sensitive than ASO, its results are too variable. It also should be noted that, while ASO is the recommended test, when ASO and ADB are done together, the combination is better than either ASO or ADB alone. Streptozyme The streptozyme test is often used as a screening test for antibodies to the streptococcal antigens NADase, DNase, streptokinase, streptolysin O, and hyaluronidase. This test is most useful in evaluating suspected poststreptococcal disease following Streptococcus pyogenes infection, such as rheumatic fever. Streptozyme has certain advantages over ASO and ADB. It can detect several antibodies in a single assay, it is technically quick and easy, and it is unaffected by factors that can produce false-positives in the ASO test. The disadvantages are that, while it detects different antibodies, it does not determine which one has been detected, and it is not as sensitive in children as in adults. In fact, borderline antibody elevations, which could be significant in children, may not be detected at all. As with the ASO and ADB, a serially rising titer is more significant than a single determination. Preparation These tests are performed on blood specimens drawn from the patient's vein. The patient does not need to fast before these tests. Risks The risks associated with these tests are minimal, but may include slight bleeding from the blood-drawing site, fainting or feeling lightheaded after the blood is drawn, or blood accumulating under the puncture site (hematoma). Normal results Antistreptolysin O titer: * Adult: 160 Todd units/ml * Child: 6 months-2 years: 50 Todd units/ml ;2-4 years: 160 Todd units/ml; 5-12 years: 170-330 Todd units/ml * Newborn: similar to the mother's value Antideoxyribonuclease-B titer: * Adult: 85 units * Child (preschool): 60 units * Child (school age): 170 units. Streptozyme: less than 100 streptozyme units.

Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE. Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland 20892, USA. sniderl@intra.nimh.nih.gov BACKGROUND: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. METHODS: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. RESULTS: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p<.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p<.01]. CONCLUSIONS: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup. .Snider LA, Lougee L, Slattery M, Grant P, Swedo SE. The publication I took and discussed with our doctor. http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

My son has had yearly ECHO's because of a "miltral valve regurg" which our doctors have said is due to his PANDAS.

THanks for the update! I have followed your posts over the last few years and I am so glad to hear things are going well. Ronna

I thought this may be of interest... 1: J Child Neurol. 2008 Mar;23(3):338-40. Epub 2007 Dec 13. Links Mycoplasma pneumoniae infection and obsessive-compulsive disease: a case report.Ercan TE, Ercan G, Severge B, Arpaozu M, Karasu G. Maltepe University Medical Faculty, Department of Pediatrics, Ataturk Cad. Cam Sok. No 3, Maltepe, Istanbul, Turkey. tugbaerener@yahoo.com It has been demonstrated that obsessive-compulsive disease and/or tic syndromes in children may be triggered by an antecedent infection especially with group A beta-hemolytic streptococci, and this subgroup of children has been designated by the acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Other infectious agents such as viruses and bacteria have also been reported to be associated with the acute onset or dramatic exacerbation of obsessive-compulsive disease or Tourette syndrome, and another acronym, PITAND (pediatric infection-triggered autoimmune neuropsychiatric disorder) has appeared in the literature. The involvement of other infectious agents such as Mycoplasma pneumoniae has been described in single case reports. We describe a case of a 5.5-year-old boy who suddenly developed obsessive-compulsive disease symptoms during a M. pneumoniae pneumonia. After treatment with oral clarithromycin, all his obsessive-compulsive disease symptoms disappeared. To our knowledge, this is the first report that shows the association between Mycoplasma pneumoniae infection and obsessive-compulsive disease.

I would have to agree that our experience is much the same. Without a doubt I think my son's PANDAS was a combination of many factors. In Aug 2001 at the age of 5 years my son had an infection, and received his pre-K immunizations as well environmently he was exposed to a pesticide while on holidays all in the same month and I think it was a combo of many factors that caused his tics.

I thought I would post a bit about our own experience with a sibling. My oldest son, now almost 12, began having tics at 5 1/2 yo...they became severe and to make a long story short he has PANDAS and is now on azithromycin x 2 years and is doing well. I have a 9 yo son who does have mild tics in the fall (seasonal) and spring. They have not really been a concern for me as they are really not too noticeable and he is not bothered by them whereas my older son use to BEG me to make the tics stop b/c they were severe. As toddlers my oldest son has tons of allergies, asthma etc and my younger son had mild allergies and mild asthma. My younger son just seems to be a milder version of his brother. We eat healthy for the most part but I have not done any real intervention with my younger son. The boys have a second cousin who they are quite close to, this cousin also tics quite a bit in the spring and fall as well as becoming more emotional. His mom just knows this is how he is in the spring and just accepts it. I don't think it is unusual to have a sibling that also shows some of the same symptoms, they just may present differently as in later in years etc. Unless the tics are really interfering with the child's life I don't think tons of intervention is needed. It is great to eat healthy, do vitamins etc but overall tons of kids tic and it is only if you know what to look for do you see it in other kids. We were recently on a vacation with a large group and sure enough one of the adults on the trip had an eye tic, but I would have never noticed or known it was a tic unless I had kids with tics. He did not seem one bit bothered by the tic. Take Care, Ronna

Some information below re: strep titers, there is NO test for PANDAS. Hope this helps. I have put some info below from the NIH. The majority of information that I have read would put a normal range for a strep titer test at 0-400. The majority of children with PANDAS that I have read about had very high titers. 600, 800, 1000's, 2000's. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. http://www.cmaj.ca/cgi/content/full/165/10/1353 (very good article, explaining PANDAS) The ASO and Anti-DNAse-B titers that are elevated in association with other symptoms of PANDAS such as a DRAMATIC onset of symptoms, etc means that it is suggestive that strep could be a trigger but the best doctors can do is make an association between symptoms and the onset of tics or OCD. There is no full proof way to rule out or confirm a PANDAS diagnosis...therefore the CONTROVERSY among doctors. Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child? A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)

In our situation our plan right now is to continue to give my son antibiotics through his teenage years. I feel personally that the teenage years are very hard and if we can prevent flare-ups etc all the better for our son. He has done remarkably well on azithromycin and has been mostly tic free for almost 2 years, and I would really say that our greatest difficulties lie with dealing with his learning disabilities. Below is a excerpt form an article in Prevention magazine... Antibiotics for OCD? Susan E. Swedo, MD, a senior investigator at the National Institute of Mental Health in Bethesda, MD, has long suspected that some cases of OCD--which affects 1 million children and 2.2 million adults--might be triggered by an infection. She's been tracking the effect of strep on children since the mid-1980s, when she worked in the NIMH lab of child psychiatrist Judy Rapoport, MD. Swedo and Rapoport first began to focus on strep after poring over medical literature, some of it stretching back to the 1800s. They found old case reports of an obsessive-compulsive-like malady that struck, they realized, just before children developed Sydenham's chorea, otherwise known as Saint Vitus' dance, a disease with symptoms of uncontrolled movements of the hands and feet. "The kids writhe and jump and jerk and grimace and blink," Swedo says. Sydenham's chorea intrigued Swedo and Rapoport because it's thought to be caused by strep--and is now rare in the United States, thanks to antibiotics. What's more, the odd behavior has been linked to inflammation of the basal ganglia, the same region of the brain where OCD is thought to originate. If severe strep caused chorea, could a low-grade or smoldering strep infection be responsible for OCD? Swedo, who now runs her own research lab at NIMH, interviewed and tested hundreds of children whose medical histories showed the sudden onset of obsessive symptoms after strep infection. "They told us, 'I had these horrible worries for a couple of weeks, and then I started not being able to control my arms and legs,'" she recalls. "Nobody had ever put that together before, but it all fell into place. "What struck us about these kids," says Swedo, "is that they don't just have tics. They have abrupt personality changes; parents talk about these children being possessed. They go from being model third graders, the teacher's pet, to the worst kid in the class." Many of the children also developed Tourette's syndrome, ADHD, or separation anxiety. In a 1998 American Journal of Psychiatry article that stirred up a lot of controversy, Swedo's team claimed that the syndrome was distinct from other childhood mental illnesses and dubbed it PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Studies since then have tended to support Swedo's thesis. Last year, researchers at the universities of Chicago and Washington found that strep infection appeared to double a child's risk of developing OCD, Tourette's, or tic disorder within 3 months; multiple infections within a year tripled the risk. The culprit, Swedo and other researchers suspect, isn't strep itself but the immune reaction some children have to it: Strep antibodies may mistakenly attack the brain instead of the bacteria, a sloppy immune response known as cross-reactivity. The exact process isn't yet understood, Swedo says. But repeated infections seem to increase both the severity and duration of the psychological symptoms--and may cause permanent damage. On the other hand, for most children who fit a PANDAS diagnosis, medication can have a profound effect, Swedo has found. "As soon as that kid's behavior starts to flare up, parents should go to a doctor, have a throat culture done, and get the child treated with antibiotics if there's an infection," she says "These kids often don't exhibit a sore throat from their strep infection; they present with tics or OCD symptoms." A 3-year study conducted at the University of Rochester Medical Center showed that giving antibiotics to 12 children immediately after the sudden onset of OCD eliminated their symptoms within a few weeks, as it did in Luke R.'s case. For youngsters who have a diagnosis of OCD and a history of symptoms that seem to worsen after strep, she suggests that doctors consider prescribing long-term antibiotics to ward off infections through the teenage years. In 2005, Swedo published a study on this technique: 23 PANDAS patients saw their symptoms decline 60 to 90%. No one's certain how many cases of OCD are strep related. Several leading physicians believe none are, because they're unconvinced by the evidence. "It's an interesting hypothesis, but it's unproven," says Stanford Shulman, MD, chief of infectious diseases at Children's Memorial Hospital in Chicago. And putting children on long-term, preventive antibiotics to treat OCD raises the risk of antibiotic resistance--and is misguided, he says. All children with OCD get worse when their bodies are stressed, he and other critics point out--whether that's caused by strep or a cold or a dead pet. Plus, strep is among the most common of all childhood infections. Test any child for the bacteria, whether he has OCD or not, and it's possible he'll show signs of a recent exposure. Other heavy hitters, however, are lining up behind the PANDAS hypothesis. W. Ian Lipkin, MD, director of an infectious disease laboratory at Columbia University's Mailman School of Public Health, says he has corroborated Swedo's research in mice. "It's all very consistent," he says. Lipkin adds that his lab has created a new antibody test that he hopes will identify children at risk of strep-related OCD. For her part, Swedo, who has devoted the last 30 years to solving the PANDAS mystery, is sticking to her guns. "The real take-home message is: Listen to your gut," she says. "One mom was a medical technologist, and the family joke was that any time her older son started to tic, they should take him in for a throat culture, because a few days later he'd be in bed with terrible strep throat. But when she mentioned that to her son's neurologists, they just pooh-poohed her. "The bottom line is, if you prevent strep in a child with PANDAS, you prevent poststrep worsening of OCD and tics," says Swedo. "Most will have remaining symptoms, but they'll be milder and better controlled."

Well I guess it has been a long time since I posted about our experience with probiotics. I have to be very careful which ones I give him. The only reason I have ever been able to come up with is that some probiotics have a streptococcus strain. It is a natural part of the gut I think and is a different strain from the strep that causes strep throat etc and I have been told that it "shouldn't" cause a problem but for us my son just seems to be sensitive to probiotics (with the wrong kind he has mild PANDAS symptoms), anyways, we really try to encourage him to eat yogurt etc and things are good so I am not rocking the boat right now and other than a multi vitamin he is doing well. I am not sure who posted about giving antibiotics as needed with exposure to strep and a positive culture. We went this route for a few years (he's been on azithr. for almost 2 years now)...anyways, in my son's case the azithr. prophylactically has been so much better. He is so stable, minimal waxing and waning, and no strep in 2 years. With each "pandas" episode the symptoms just seemed to get worse and worse and it took longer for the symptoms to subside. We have had none of this with azithro. Ronna

Hi there, oh my gosh, I have so little time these days, but wanted to reply really quick re: probiotics. I apologize if someone has already posted about this, I only had a bit of time to skim over the reply's. My son is sooooo sensitive to probiotics. For whatever reason he has always reacted badly to most of them. Did the symptoms increase when you added the probiotic? A couple of months ago, my husband gave my son some probiotics for a few morning, thinking he was "helping" and typically he had an increase in some slight tics (he rarely tics now), but behaviorally it messes him up. My advice for what it is worth, stick with the azithromycin, don't switch around right now. Quit the probiotics, can you get her to eat yogurt instead (this is what we do)? Try a 5 day course of azithromycin, my son is about 80 pounds and we would do, 500 mg, day 1 and then 250 mg, for 4 days and then back to once every 5 days. Take care, Ronna

Thanks for the link! Ronna

I just wanted to say "hi" and let you know that you are not alone. My son had a sudden onset of tics 6 years ago and we are proof that things can get so much better with time and knowledge. We had no idea what to do at the time and although it is hard to believe now, in 2001 when my son's tics began the internet just was not as big a deal and really there just wasn't nearly as much information. About a year into my son's ordeal I found braintalk and then ACN and that is when we reallt made some head-way with my son.\ I am an RN and worked with and respected many of the pediatricians and neurologists that my son saw. The only recommendation was meds. We started with Orap (horrible med) and at the time it reallly was so nice because FINALLY my son's body was still, I can still remember the relief of seeing him lay in the hospital and not seeing his body tic. The Orap worked really well for awhile (a few months) and then as you have said, it stopped working as well. The doctors recommended to increase the dose...well over the course of a summer my son gained about 20 pounds and turned into a zombie...it was HORRIBLE and I could not believe what we had done to our son. On the recommendation of the doctor we switched to clonidine (this should have been the first med we tried, NOT a major drug like Orap)...anyways, the clonidine helped a bit but also made him way tooo sleepy so we stopped. It was about this time that my son was having nerve, skin, and muscle biopsies looking for neurodegenerative and metabolic disorders because his symptoms were so severe and he developed an infection at the nerve biopsy site and he was started on the post-op antibiotic of Keflex...I am not kidding within a day or two all of his symptoms disappeared and I discovered the interent...I typed in penicillin and tics and nearly died when I read about PANDAS...this was my son! Antibiotics were not the only answer for my son, he benefitted greatly by removing dairy, chocolate and eggs and basically cleaning up his diet, we used various supplements, and essential fatty acids, and probiotics. It was a long road but I can tell you at age 11 years old, he is doing well. Minimal tics, active in sports, some good friends and our biggest challenge now is learning disabilities. Hang in there. You will know what the right thing to do is. I don't think it is a bad thing to wait till Xmas to wean meds so that there is less disruption at school. For now you could concentrate on adding some vitamins and changing the diet. If you make too many changes at once you will not know what is helping, not helping or making things worse...it's not a sprint, but think of it as a marathon...the end will come. Write everything down, and only make one change at a time...add a multi-vit, wait 4-5 days, add the mag-cal, wait 4-5 days, remove dairy, wait a week, etc... I made the mistake years ago of jumping in and making too many changes at once b/c I was so desperate, only to start over SLOWLY. Hang in there.