airial95

Thanks! This is perfect!! I agree - that being vague is probably more helpful at times. And hopefully - since we SHOULD be dealing with folks who are all at least familiar with PANDAS (and her teacher from last year has been very supportive and will be there) something vague should do the trick. Thanks again!!

My post was meant to be a joke about the ridiculousness of "conversion disorder" - not the request to try to control how summary information was disseminated. Whether we agree or disagree with the request - I think we can all understand the reasoning behind it. I've seen first hand in my profession how easily a single piece of research can be distorted and expanded far beyond what it actually says! Sorry if my little joke was mis-interpreted...

This is absolutely true!!! When we were in Buffalo last visitng my in-laws, we swung by a "famous" lcoal neurologist there who said my 4 yo son didn't have PANDAS at all - it's actually conversion disorder, and his onset at 2 years old was directly related to all of his exposure to social media!!! Sorry - couldn't resist the sarcasm!

Hey - I'm prepping for my daughters 504 meeting next week. Her school has been amazing, and have already put into place most of her accomodations, but this is the "official" meeting with the district to do the formal paperwork. My son already has an IEP for PANDAS through the district, so the battle of "What is PANDAS and does it qualify for IEP/504" isn't something I see happening. I even believe they've assigned the same staffing specialist as my son - so there's familiarity. Additionaly, the school nurse at my daughter's school has had other children in the past with PANDAS, and already had her medical form pre-filled out at our meeting to discuss last year with information like "unlimited bathroom breaks as needed" and "strep notification for adjoining classrooms" before I even got there to explain what PANDAS was - we have been very fortunate. So - what I need for this meeting is just the dr's documentation of the dx. I have the offical diagnosis paperwork from Dr. Murphy's office - but it's very straight forward, simply says dx: PANDAS with presentation of OCD, anxiety, etc... Our pediatrician has offered to give us a letter with the dx as well (he was the first to dx) that has a bit more about presentation in school. He said if I wanted to write the letter, he'd be happy to sign it, if that would be easier. I am all on board with that idea because I can make sure it says what it needs to say. I know others on here have written the doctor's letters for their docs to sign and was wondering if anyone had an example? I looked on the PANDAS network page and found sample letters for the school - but none that were written by the doc. Any help would be appreciated!! Thanks!

We has been patients at Rothman since July 2010. Our experiences have been similar to momtojakes, first appointment was several hours and our son had several assessments done that day to evaluate other needs (OT, etc...) follow up appointments were monthly for a while and then every 3 months. We live in Tampa, so it's local, so I'm not sure how she handles out of towners on follow ups. We have seen Dr. Brown as well as Dr. Toufexis (she's my son's favorite!!) When we had our first appointment with our daughter in January, it was much quicker because she didn't need any of the detailed assessments my son did because of her presentation of symptoms - plus, they also had all of the family history down. I agree with momtojakes assessment on how thorough they are with the records, etc. They know your case when you walk in, and that's helpful. We also have had similar experiences with their responsiveness to email and such - typically within 24 hours. We have also gone in the past, (and are starting again next week) for behavior therapy out there. It has been wonderful, they understand the ups and downs of the PANDAS kids and helped us work with moving targets. Right now, we don't see Dr. Murphy or Dr. Toufexis regularly anymore for either of our kids. After our 3 month follow up from our initial consult with my daughter, they have left her care in the hands of our pediatrician to treat the PANDAS because they support the approach he takes with her (she's mild, is symptom free after 30 day course of abx when she gets strep) and only need to see her if things take a nasty turn (knock on wood!!). As for our son, after seeing them for close to two years, Dr. M and Dr. Toufexis admitted that my son's case has been more challenging to them. He is classic PANDAS, however, our issue is chronic re-infection (20+ positive strep cultures in 2 years). None of his bloodwork indicates any immune deficiencies or reasons for the chronic infections. They sent us to an immunologist at All Childrens (great because she was familiar with PANDAS - and eventhough she found no underlying immune reasons - other than straight PANDAS - for IVIG said she would write the order for Dr. M if that's the direction we all decided was best to treat the PANDAS), who couldn't find anything, and she also sent us to an infectious disease specialist at USF, that was the only doc I haven't liked in my experiences with USF (and I'm an alumni there - so it pains me to say it!) - she just didn't really seem to be searching for the reason behind the chronic infection. She just gave him a course of rifampin to try to clear underlying strep and wanted follow ups every 2-3 months. She wanted him off ALL abx, and lo and behold, the second we did that - my son tested positive for strep. When we followed up with her after the ped put him back on abx, she wanted him only on a short course (less than the standard 30 days my ped always gives as a start for his PANDAS kids) and then off completely. NOT an option for my son with his strep history - needless to say, I never scheduled our 4th follow up. Sorry - I digress. Anyway, after their immunologist was a bust and they referred us out to ID, they also recommended that we consider getting another PANDAS specialist on board, and Dr. Toufexis even discussed with us openly the various options available to us - she was familiar with all the big names, and helped us weigh our choices. Personally, I was very impressed that they openly admitted that we needed another outside opion - it's not something you see with a lot of doctors. They still ask for updates on both kids, and I email Dr. Toufexis regularly and she keeps their records updated with all of the latest information, incase we do need to get in to see them. They have also said that they would be willing to work with whatever other expert we went to (we chose Dr. to assist us locally. Let me know when you're out there - it looks like our regular therapy days may end up being Thursday afternoons - with back to back appointments, I'll be there a while!!

Another thought - since you are still relatively early in this journey - consider logging your son's symptoms daily. We used a methodology that was created by another parent on this forum , where we listed the symptoms and each day recorded a 0-9 based on the severity of that particular symptom each day. We also had his teachers at day care fill it out for us. We then supplementented with notes and other goings-on (change in meds, known strep exposure, positive cultures, etc.) I turned our log into an excel spreadsheet and was able to graph our progress. We added up the scores for each symptom and came up with a "daily score". When we started logging, our daily scores were in the 110-120 (out of a possible 150) range, a little over a year later, we were averaging the mid 40's when out of an active infection. Whenever we saw a score spike significantly, we knew we might be in for a trip to the pedi. It was critical in our meetings with some of the early doctors we went to in getting a proper dx. We knew nothing of PANDAS until our pedi tossed it out as a theory - so we were never accused of "looking" for a dx, but when we saw our neurologist for the first time, while he "believed" in PANDAS, and treated other kids, he was adamant that without elevated titres there was no PANDAS (our sons titres have never been elevated), but changed his tune quickly when he saw our data, and how the sypmtoms spiked with each infection/exposure. Dr. M loved our charts when she first saw them as well. Thought the data was invaluable, and used some of it to write a case history on my son as the youngest documented PANDAS case she had seen at the time (19 months at onset, 26 months at dx, 30 months at our first appt. with her.) It was also helpful for us to identify some key triggers that told us to go straight to the ped to get swabbed (biting, early on, and now wetting the bed - we were always positive when we saw those symptoms present). That alone helped us get episodes under control more quickly. We stopped logging after about 18 months because our son started a special ed program through the school district and no matter how hard we tried we couldn't get the teacher to evaluate him properly. It was hard to keep an accurate daily score without her input - but he started to thrive in her class, so we let it slide. If you'd like a copy of the excel files, PM me your email address and I'd be happy to pass them along. It really was helpful to us early on in our dx to help us figure out exactly what was up.

Much like Julia said, our school district offers the K12 curriculum, and the school district teaches evolution - but I'll be honest, haven't looked into it at that level yet - just trying to keep our fall back positions open. But it's a very good point to make sure the curriculum matches your values as well as the district requirements.

My son's labs actually have been maddeningly consistent - negative for EVERYTHING! Every step of the way. That's been part of our biggest frustration. We have the positive rapids, positive cultures, time and again, the clinical presentation of strep (without the fever or sore throat) but no concievable reason as to WHY he has gotten strep 20+ times in 2 years. Which is why my gut keeps thinking it's my husbands fault after all. (LLM - I like your Typhoid Mary reference - that may be my new pet name for him! ) I was actually mildly relieved when we got the Lyme suspicion - because at least it was a "new" peice to the puzzle. My son has always returned to 85-90% on abx alone, but our issue was constant re-infection before time would allow us to reach 100% - again, major reason to believe Mr. Typhoid Mary! With this new combo - we're actually in pretty bad shape. He's spiralled quickly into more anxiety than we have ever seen of him. Fortunately, it's not a 24/7 deal like it has been in the past, but he gets so anxious about having to take his medicine he's making himself physically ill. Something new for us. The hyperactivity and sleep disturbance has been terrible since he's started the combo as well. Then there's his food OCD - which has morphed slightly into him being overly concerned with wether what he's eating is "healthy" or not, but he's continued to eat well, as opposed to the past where his OCD would prevent him from eating hardly anything at all. (A positive - albeit worrisome - step up in my opinion.) We've been on this journey for almost 3 years now - since he was 2 years old. I just feel like we were doing what was right for our son at the time we started(very young and small, so we opted for conservative treatment), but now we've hit a brick wall with progress. Maybe I'm just having a bad day and need to throw a little hissy fit!

We've looked into the K12 virtual schools for our son as a back up plan if we've ever had to homeschool. Here is the link to some of their options in PA - looks like they have a couple of online charter schools that are tuition fre K-12 PA

Okay, so a month ago I ate crow on here and admitted that we FIANLLY got our son tested for Lyme - something we handn't pursued before since he was a classic PANDAS - history of positive strep coincident with symptoms, and being in Florida - he's not in a Lyme prone area, and has never even been anywhere where he would possibly come into contact with ticks - although we do travel to Buffalo annually (although the most recent trips were in the winter). Dr. B ran the tests through his office as part of his routine testing and he was + on 2 bands using the typical CDC Western Blot. So Dr. B ordered Igenex testing to confirm the positive and test for co-infections. $1200. Woo hoo!!! He also put him on a combo of Azith/Augmentin at that time. Had the follow up yesterday with Dr. B. The Igenex results came back NEGATIVE for Lyme, and ALL co-infections. He did show a response that showed exposure to Lyme (Band 18 and 31 but the bands themselves were negative) - probably upwards of 18 months ago, as his body had created antibodies for it, but no sign of it now. (I haven't seen the actual results yet - expecting them by fax this morning) Okay - so where does this leave me now?? I posted about a week ago questioning if the major backslide we're seeing right now was herxing or reaction to my daughters recent strep infection. Dr. B said that based on the notes that I sent him describing my sons behavior since our last follow up - it sounds like herxing, so based on that he's not sure he "believes the Lyme is really negative." My husbands strep titres and myco p titres were high, so he had been treated with a 30 day course of abx, and Dr. B ordered new labs on him. So his theory right now is that my husband may really be the root of the problem after all (seriously - is that grounds for divorce? ) I'm just flat out confused right now. I've always had a really good "mommy gut". Everytime I suspected strep in the kids, 9 out of 10 times the rapid was positive - on the rare negatives, they had other clinical signs of strep. We took my son in on Monday to get tested for strep - because the behaviors were there, and figured it would be good to rule out before the follow up with Dr. B. I didn't really think he had strep - sure enough I was right - rapid negative, no clinical signs, culture negative. My gut is telling me that it's not really Lyme, and the whold Lyme thing is just a red herring. I didn't really buy it when Dr. B called with the results last month - but accepted that I might be wrong. This new information seems to confirm my gut feeling all along. The only time my son has been 100% was immediately after his T&A - when the WHOLE family, including the dogs, was on abx as a precautionary measure. Which makes me wonder if my husband really may be the missing link. I know Dr. B isn't a Lyme expert, but I'm questioning if I should even try to see a LLMD or if that's just a waste of our time. UGHHHHHH!!!! Why can't any of this be easy!

Just wanted to share our experiences/observations - my daughter has presented drastically differently than my son. She's far more emotional, obsessional thoughts rather than rituals, perfectionism is a big deal. Where with our son it was undeniable that something was going on (hyperactivity, rages, violence, etc...) She was caught early, partly because everytime my son tested + for strep the whole family was dragged in for swabs and more than once she tested positive with no physical symptoms, so she was treated. Like you - I saw it about a year before anyone else was willing to entertain the idea - she was acting out, seeing the attention her brother was getting, I was a paranoid maniac (probably some truth there ) But eventually, it was undeniable. She got dx last year in kindergarten - and thankfully so. We have seen her symptoms more clearly in the academic setting than anywhere else - thankfully her K teacher had a special ed background and was wonderful! We consider my daughter "mild" - she also wasn't severe enough for the NIH trial. On a scale of 1-10 at her worst, she probably ranks a 5. I would describe her outbreaks similar to a teenager going through REALLY bad PMS. (Which makes us dread those years all the more!!!) One of the fellows at Dr. Murphy's office even confirmed that boys tend to present differently than girls. As for catching it early - I feel that we have. And although she got strep 4 times last spring (I think they were just giving it back and forth to each other) and already 1x this fall (first week of school!!) - she tends to clear completely with an extended round of abx (4-6) weeks, with no lingering symptoms between infections. While we're still struggling with my son significantly - we feel that because we were proactive in getting the family tested/treated early on, we helped catch hers early enough that she's a "manageable" case.

Saw something about this in Beth MAloney's email blast, and decided to check it out for myself - seeing as we have UHC and are just considering IVIG for the first time. This is what I pulled out of the 9/12 Medical Policy Update Bulliten For IVIG - effective date 11/1/12 : "Revised coverage rationale; added language to indicate pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is unproven" With this note under "Miscellaneous Uses - Unproven" (where it was reclassifed): "Data from the available studies regarding the use of IVIG for these conditions has either demonstrated no benefit over placebo or the results have been conflicting." Just thought I'd post the heads up!