JMTho

http://www.health.harvard.edu/blog/can-an-infection-suddenly-cause-ocd-201202274417

Hi, This was a very tough issue for our family, too! We used Valium + Nitrous on several occasions. It was the ONLY way we were able to get through dental procedures; we know, because we walked out of the office after unsuccessful attempts with a sobbing boy several times over the years. They ordered 2 doses of Valium; 1 half-dose for 30 minutes before appt. and we were to bring the 2nd half-dose with us, in case we needed it at the office. Worked like a charm, but did NOT put him out, just made him able to cope (took the "edge" off his anxiety.) Since our dental issues were extractions for orthodontic issues (ie. potential for oral bacteria to enter blood stream with teeth are pulled), we also put him on a course of antibiotics (he was not on prophylaxis at the time) starting 2 days prior and continuing until the course was finished, just to make sure it wasn't followed by a flare-up of the immune system. Best of luck. Julene

http://www.stltoday.com/lifestyles/health-med-fit/fitness/parents-in-st-louis-area-say-mental-illness-in-kids/article_ec21a8dc-f564-5124-95ee-e1de21b65cde.html

info about math and working memory: http://usablealgebra.landmark.edu/instructor-training/working-memory-attention-executive-function/ Our son exhibited severe deficits with executive functions in 3rd grade (his big, horrible, no-good, very bad STREP year), especially working memory- in math and also longer writing/research projects. What we saw was extreme frustration and anxiety, (tears, avoidance, (hiding homework worksheets under his bed!!) distractibility, etc.) Homework was a nightmare for several years. We did ask for accommodations, such as allowing him to show understanding of the concepts without pages of extra homework "practice". Some teachers were great; some less understanding. Because he could not focus at home (brother, dogs to play with, etc), one obliging teacher allowed me to meet him at the classroom at the end of the day and we were allowed to stay an extra 15 minutes or so in the quiet classroom to allow him do the necessary homework; was a lifesaver. What had been taking 2 hours of drama and tears at home took 15 minutes at school in the quiet classroom. Happily, once we diagnosed PANDAS and he was properly treated and began to heal, these issues have gone away and he has now skipped 2 grade levels of math- a 7th grader taking 9th grade algebra and LOVES it. So, as the brain inflammation resolved, so did the math/homework nightmares. It's only now that we can look back and recognize how many facets of his/our lives were affected by this illness; it's astonishing and heartbreaking. We feel so sad about those early homework battles; he really couldn't rally his mental troops to do the task at hand, and we were so often impatient and frustrated. We all have a little PANDAS/PANS PTSD. Best of luck, Julene

info about math and working memory: http://usablealgebra.landmark.edu/instructor-training/working-memory-attention-executive-function/ Our son exhibited severe deficits with executive functions in 3rd grade (his big, horrible, no-good, very bad STREP year), especially working memory- in math and also longer writing/research projects. What we saw was extreme frustration and anxiety, (tears, avoidance, (hiding homework worksheets under his bed!!) distractibility, etc.) Homework was a nightmare for several years. We did ask for accommodations, such as allowing him to show understanding of the concepts without pages of extra homework "practice". Some teachers were great; some less understanding. Because he could not focus at home (brother, dogs to play with, etc), one obliging teacher allowed me to meet him at the classroom at the end of the day and we were allowed to stay an extra 15 minutes or so in the quiet classroom to allow him do the necessary homework; was a lifesaver. What had been taking 2 hours of drama and tears at home took 15 minutes at school in the quiet classroom. Happily, once we diagnosed PANDAS and he was properly treated and began to heal, these issues have gone away and he has now skipped 2 grade levels of math- a 7th grader taking 9th grade algebra and LOVES it. So, as the brain inflammation resolved, so did the math/homework nightmares. It's only now that we can look back and recognize how many facets of his/our lives were affected by this illness; it's astonishing and heartbreaking. We feel so sad about those early homework battles; he really couldn't rally his mental troops to do the task at hand, and we were so often impatient and frustrated. We all have a little PANDAS/PANS PTSD. Best of luck, Julene

These were the codes our specialist used when submitting letter of necessity to our insurance; there are NO codes for PANDAS/PITAND/PANS: • 279.9 • 348.30 • 348.39 NEC He also listed specific symptoms exhibited by our ds in his letter. CIGNA does list PEX as approved for PANDAS in their information online; however, they exclude IVIG for PANDAS.

http://healthland.time.com/2012/02/08/new-diagnosis-in-teen-tic-disorder-what-is-pandas/

from "Batavian" Le Roy, NY Statement from NIMH: Dr. Swedo has not seen patients, cannot confirm conversion disorder diagnosis Submitted by Howard Owens on February 7, 2012 - 4:55pm In previous reports. Dr. Laszlo Mechtler has said Dr. Susan Swedo has indicated she would issue a statement confirming the conversion disorder diagnosis for the Le Roy teens with tics. We attempted to contact Dr. Swedo for such a statement and were referred to the press office for the National Institute of Mental Health, a government agency. We just received the following statement from NIMH: The information you have from Dr. Mechtler regarding Dr. Swedo is incorrect. Dr. Swedo has not evaluated any of the patients so therefore cannot confirm any diagnosis. Le Roy Howard Owens's blog Login or register to post comments

Hi all, Thought these new articles might be of interest: http://www.journals.elsevierhealth.com/per...1234-7/abstract http://www.journals.elsevierhealth.com/per...1019-1/abstract jt

Why titers might be remaining high on penicillin/amoxicillin family antibiotics: http://www.journals.uchicago.edu/doi/abs/10.1086/508773

Article of interest to this thread: http://www.jaacap.com/article/S0890-8567(08)60102-1/abstract (I can email the .pdf file to anyone who'd like the entire article.)

Another one with great diagrams/explanations: http://www.thorne.com/altmedrev/.fulltext/8/4/410.pdf

Right... that, too. What I DID like, was the recommendation for long-term prophylaxis with antibiotics for PANDAS... from a cardiologist.

My only objection in this article is the emphasis on penicillin. I'd balance it with this article, if I were talking to an MD and seeking antibiotic treatment: http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 jt

Hi all, We have only considered PANDAS as a possibility for our ds (10) for the past 5 months; however, he has been sick with repeated strep and/or sinus infections for almost 3 years. We believed that the first strep infection had happened in 3rd grade (age 8). However, now that we are trying to explain to MDs when symptoms began and then when everything exploded, it occurred to me that requesting/having his entire medical chart (ER, clinic, lab tests, surgical/procedure reports) would help me develop a more accurate timeline of events. Wow, were we surprised when it arrived! First strep tests were done at 9 months!! He'd had URI followed by 3 weeks of poor eating and intermittent vomiting. Strep was negative at that point, but they did treat with antibiotics for suspected sinus infection and he recovered. First confirmed strep was 1st grade! It was in first grade that we recall asking the classroom teacher about possible ADHD... he was so scattered and sometimes hyper. We had also noticed very poor drawing and writing in 1st and 2nd grades- had spoken to teachers about it at conferences. He was also consumed by separation anxiety and I almost quit volunteering at school because it was so awful when I had to leave! Thinking his first strep was in 3rd grade (and the explosion of horrible behaviors and rages), we didn't realize that the first behavioral issues had begun 2 years earlier. Secondly, when we realized HIS first strep had happened so young, (and when we learned about other s/s of PANDAS), we suddenly recalled taking our older son (now 12) to the ER around age 4-5 for severe abdominal pain (mesenteric lymphadenitis on ultrasound- strep positive culture), and also the frequent urination at bedtime for over a month (lasting for 2 hours/night- every 3 minutes.) finally were referred to a urologist. He had also slept on our floor for months because of night terrors and separation issues (we bought "dreamcatchers" to catch the bad dreams... we had lavender "magical" air spray to chase the bad dreams away). He had compulsive shoe tying during sporting events (couldn't run the length of the basketball court without stopping in the middle to tie- (they didn't make velcro shoes for his size by 3rd grade, or we'd have tried that!), which made us smile and shake our heads (our cute, odd little guy), but didn't occur to us to be worried. We have 3 books on Asperger's Syndrome on our shelves, as we were noticing that he has mild social issues (cannot read body language, emotional feedback from others, hyperfocus (to the point of problems at times), rigid personality, and very concrete thinking. We used the advice in those books to help teach flexibility and social cues, but never sought professional help. More importantly, we had forgotten much of this and/or had never thought they were related in any way. Hindsight is 20/20. So, as I'm reading posts from so many new families, my advice to you is formally request copies of all old medical records and begin to keep a file (or, if you are like us... a file DRAWER... the file is so large). Ask for a copy of every lab test, every procedure as they are done (usually they can mail it to you), and then yearly request medical records from the clinic/md offices (ie. MD notes). You will have to fill out release forms, and there may be a charge if the file is large (for copying and shipping), but it is worth it and will allow you to put together a more meaningful history/timeline. I now look back at all the clinic visits for my youngest son, in which they dismissed his illnesses as "viral" and wonder how many might have been missed strep. Those "viral rashes" that might have been missed scarlet fever. He has never presented with a reddened throat nor swollen glands, and only rarely a sore throat, so they have often only done swabs for GI symptoms (severe vomiting) at our request... only to find positive strep cultures. Once we recognized the pattern of symptoms as strep, we have always asked for culture; often, they did so only to satisfy the concerned parents, saying "I really don't think think this is strep" only to call us sheepishly with the positive results. Looking back at the clinic notes, it is possible that there were many missed strep infections, as his presentation is so typical each time and there were many visits with the typical s/s, but no strep test had been done. So... there is certainly a possibility of untreated strep infections when we now look back at this. I wonder how many of us have had repeated, undiagnosed, untreated infections prior to the "sudden onset/exacerbation" that currently defines PANDAS?? Maybe the defining episode is not the first, but the first recognized as strep? I wonder if recognizing and treating the FIRST strep infection would prevent or decrease the severity of the cascade of events that takes us down this horrible path? See below (treating populationcohorts) http://www.ispub.com/journal/the_internet_...atic_fever.html Anyway, I have so appreciated listening and learning from everyone on this forum... sometimes we have felt so very alone through all of this, just knowing you are out there has been such a comfort; hopefully this can help someone just starting down this path... jt