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

You will find a wealth of information at: www.pandasnetwork.org

You might try soft chocolate truffles (Whole Foods sells some). They are soft enough to dig a small hole into the round chocolate ball... then slide the crushed pill into the hole, pinch it closed and tell kiddo not to chew it... just swallow it down. (if it is too big, can cut in half and mold it into a smaller ball.) Could practice with the probiotics and/or Advil first, in case it doesn't work... that was a great suggestion. Good luck.

I did send you a private message, but here is more information: http://www.webmd.com/a-to-z-guides/mesenteric-lymphadentitis jt

I should also add that you should consult with your own MD if you decide to try ibuprofen long-term. It also inhibits COX-1, which can be hard on the stomach over time.

Oops... I meant to copy this link, too -another omega-3 article: http://www.thorne.com/altmedrev/.fulltext/8/4/410.pdf

We use Nordic Naturals EPAxtra 4:1 EPA:DHA (no omega 6= proinflammatory) Interesting article on omega-3 oils and inflammation: http://www.hindawi.com/journals/cpn/2009/725310.html

Many neurological studies are showing that COX-2 inhibitors (ibuprofen) close the blood-brain barrier (in PANDAS it is suspected that the blood-brain barrier is open, allowing malfunctioning antibodies to cross over and attack the basal ganglia). We have seen dramatic improvement since starting daily ibuprofen in December. It does affect platelets and can increase bleeding and bruising; cannot be taken in the weeks before surgery. Our ds had chronic abdominal pain over the past 2 1/2 years (full GI workup, scope/biopsies- found nothing; doc suspected his repetitive strep infections were causing it), so we worried about giving ibuprofen. He had a Z-pack (azithromycin) in November (5 day course) then, started ibuprofen in December. Now, all stomach aches/pains are GONE (didn't worsen on ibuprofen as we worried it might) and everything has gotten better; not perfect, but dramatically better. We give 200 mg twice a day (ds around 80 lbs.) -ONLY on a FULL stomach -PLENTY of fluid intake!!! (is cleared through kidneys) If symptoms spike (when he had sniffles for a few days), we add a middday dose after school. jt Studies, for those who LOVE reading this stuff... Blood Brain Barrier and Ibuprofen (note: NOT PANDAS-specific studies): http://www.nature.com/jcbfm/journal/v28/n2...l/9600525a.html http://www.nature.com/npp/journal/v30/n6/full/1300668a.html http://thejns.org/doi/abs/10.3171/jns.1986.65.2.0233 http://arxiv.org/pdf/0708.0181 http://www3.interscience.wiley.com/journal...=1&SRETRY=0 http://www.jni-journal.com/article/S0165-5...0114-5/abstract http://www.flocel.com/posters/Flocel%20Imm...Human%20BBB.pdf

30 minutes prior to bedtime, we give our 10 year old son (80 lbs): -Melatonin 3 mg -L-tryptophan 500 mg -Advil 200 mg We started Melatonin 1 year ago; made huge difference with sleep onset, less need for elaborate rituals, less "bad thoughts" as he was falling asleep; but still not a simple bedtime. Added L-tryptophan in November for sleep and mood. We added Advil in December, and it has made the biggest difference of all. He had a horrible relapse after H1N1 in October- 6 weeks later it still hadn't resolved and we were finally coming to the conclusion that this might be PANDAS. We gave him azithromycin (5-day Z-pack) and then started Advil, and we've had the best 3+ months we've had in 3 years! He's had 2 small colds with a brief spike in all behaviors and complaints (including more trouble falling asleep for a few days), but everything is resolved within one week and then he's back to the NEW baseline... which is a boy we've not seen often in 3 years... just calm and lovely!! (hadn't realized that gentle/loving soul was still IN THERE... we'd been mostly dealing with reactive, oppositional, unpredictable boy... apparently, his "Mr. Hyde".) Last night he forgot to take these bedtime pills, and after an hour of trying to fall asleep unsuccessfully, he realized that he'd forgotten and jumped up asking for them! We all see a dramatic difference on the rare occasion that they are forgotten. With the pills, we have 10 minutes to snuggle, tuck him in, kiss, and close the door... within 5 minutes he's asleep... amazing!!

First: From the medical perspective, it is very difficult and heart-wrenching to be unable to offer an answer and a treatment for suffering patients. These physicians face opposition from their peers and are breaking ground with treatment protocols that are not standard of practice. (read: professional isolation). I'm sure it was very difficult/heartwrenching for Dr. L to recognize this family's investment in time/money and trust, only to feel she couldn't help. But, she was honest and giving you her best medical opinion at the time with the best information available. Second: Odds are, some of us might be on the wrong path... OR, some of these kiddos might have another, underlying condition which complicates diagnosis and/or confuses the picture of what is going on. It would be remiss for a physician to ignore her best medical opinion. As a parent, you must also follow your heart: get a second opinion: try to organize your chart/information/symptom summary/timeline/treatments on paper or in a document file; send on to MD prior to meeting so that they can objectively review data in advance. Third: We are desperate to help our kids. We have made ourselves knowledgeable about this area of research. However, we are only looking at symptoms through the PANDAS lens. The docs who BELIEVE in the PANDAS/PITANDS diagnosis are looking with this the PANDAS lens, but ALSO have depth of knowledge in other possible diagnoses and may see things we do not. Devastating as it may be to be turned away, I would want to know WHY. What did she see that made her think it was "not" PANDAS? What direction would she suggest you go next (as far as specialists) based on the symptoms she reviewed/observed. My best question in health care situations is: "What would you do next if this were your child?" The answer is often very different than the "standard of practice" answer. Worn out Parents... you are in our thoughts and hearts...

First, I'd suggest looking at medical intervention ASAP: culture/titers/antibiotics/etc. BUT, you still need tools to deal with the behaviors when they happen. This has been one of the most difficult issues for us. We began working with a therapist a year ago when the pediatrician suggested Bipolar Disorder. Our management of behavior in the middle of the crisis moment has not changed, in spite of the change in our suspected diagnosis. She suggested: 1. during rages: keep everyone safe, be the calmest one in the room, lower your voice, lower the lights/noise level; focus on the immediate goal: calming the emotion. He can be in his room alone, IF HE IS SAFE. 2. firmly, but gently use therapeutic hold child if NOT safe (ie. hitting self, hitting walls, destroying room). (she trained us how to do this safely/gently). We say, "I will hold you until I trust you will be safe". 3. delay consequences overnight. **you are NOT a permissive/bad parent if you delay until everything is calm and all can resume rational thought.** Our ds has deep remorse/self-loathing when rages end- sobs and sobs, says "I'm a terrible person; why do I have to live" (often lasts over 2 hours and usually at bedtime); next day, he is calm and very eager to "make things right". 4. Next day: we discuss in matter-of-fact, NEUTRAL manner: We love you (with a smile and a real hug). But, last night was a bummer and the BEHAVIOR was unacceptable and took a lot of energy; how can you repay our energy? (He feels terrible already, and needs to feel loved; "he" is NOT his behavior!) He needs to have a way to make things right: extra jobs/chores, writing apologies, doing something positive for the family- making a meal for everyone (age appropriate), etc. We relax and read while he is busy, and he really feels like he is taking care of us... he's so eager to make things "right". Then, when it's over, it's over and we never mention past meltdowns. Bygones. We also tell him that we know he has more trouble controlling himself when he is not feeling well, but that he has to begin to monitor his health and emotions; we can begin to help him become self-aware in the hopes that as he gets older he can self-monitor and begin to predict illness onset by his emotional responses. (baby-steps toward future self-control/self-monitoring...) 5. reward self-control and positive behaviors; we use this when things start ramping up and are getting more challenging; during honeymoon phases, we put it away- keeps the novelty factor: we did poker chips with a jar; made a list of most problematic behaviors and rewarded all behavior we wanted to target: brushing teeth, getting up and ready for school on time, kind words to brother, helping when asked, etc; could earn 1-5 poker chips, depending on how much we wanted to emphasize each behavior. Full jar= earn a fun reward (family movie, bowling, small toy/game, sleepover) We tried to pick a jar that could be filled in 2 weeks if all behaviors were done well. We only GAVE chips; never took any away for punishment. This was positive reward only; not bribery, but reinforcing desired behaviors and training these to be more automatic. Cannot overemphasize how profoundly helpful the therapist has been as we've navigated all this. She very quickly told us that he didn't seem to fit the profile of bipolar disorder, which allowed us to consider other possibilities. The parental coaching has been the most valuable and helped us to unify our approach and better support each other when the going gets rough. However, NOTHING HELPS if he's SICK; we just try NOT TO MAKE THINGS WORSE by ramping up with frustration/emotion ourselves. That's when we use the techniques to keep everyone safe until we can get him some antibiotic treatment. Best of luck... JT