airial95

Don't have time to read all of the great posts on here, but I thought I'd share my story quickly. My son was classic textbook sudden onset, has been responding wonderfully to abx treatment (85% since January) But ALL of his labs also came back perfectly normal. Like someone else above said - he looks great on paper...it's in person that's the problem. Our pediatrician and Dr. Murphy both agreed that there's less importance in the bloodwork than in the clinical symptoms and dx and his response to treatment. Our neurologist is the only one who seemed to care that the bloodwork was normal. (Tried to tell me this am that since the bloodwork was fine - he doesn't think he fits PANDAS anymore - luckily, we only see him 2x a year now unless there's an emergency and he's not recommending any psych meds so I didn't bother arguing with him...) So - yes - it can still be PANDAS with normal labs. It is for us.

Quick update: We already have an advocate on board - we were proactive in that because even though we're both educated people - my husband and I realized very quickly we were in over our head. She was scheduled to be at the meeting but her daughter got very ill that morning, so she sent us with all the ammo she could. Needless to say, she was not thrilled when she heard how it went. She called the school district, and I think we've already ruffled some feathers. At the meeting last week, it was weekly visits (about 1 hour) to the day care to work with him. This week, it's already a bit different. They were at the day care for 2 hours this morning, and already have 8 more hours scheduled for this week and 8 for next week. We got a call today that the follow up meeting is being scheduled for the week before Thanksgiving, and that the focus of that meeting will be which class setting will be approrpriate (EELP or ET). All of a sudden, after our advocates interference, the line has quickly changed from keeping him in his current setting to needing this 4 week evaluation time to figure out WHICH setting to place him in. It will be interesting to see how this goes when we meet again in 4 weeks

We have the same issue as philamom, if we try to refill to soon, it's denied.

Welcome, I'm sorry that you're going through this - but you've found a very supportive group here that is a wealth of information. The sudden onset of symptoms does sound suspicously like PANDAS. Has she any other symptoms? Seperation anxiety? Rages? or is it just the OCD? How has she responded to the Zoloft? Our son has not been placed on any psych meds, however, many parents on here have noted that these types of drugs often don't work, or may make symptoms worse in PANDAS kids. As for the abx - in our case, we have been on abx since January, with a rapid improvement immediately, follwed by a slow and steady climb back to normal (about 85% of the way there!) I would consider contacting some of the specialists on this board - there is a list pinned in the helpful threads posting at the top of the forum. There might be a PANDAS friendly doctor in your area, however, some of the top practitioners are in NJ, CT and MD - which wouldn't be too far of a stretch for you from SW PA. I think there might be some others on here from the Pittsburgh area - hopefully they'll chime in soon. Welcome!!

Ecmama, I'm in your same boat. My son was dx with PANDAS in January, at age 2 yrs 3 mos. Like you, we had been struggling for a few months with his overnight, very sudden behavior changes. Thinking it was the "terrible twos". We had a very astute Doctor that made the connection for us. We've tried varying doses of abx, but have been on abx consistently since the dx. We saw an immediate improvement on the abx, followed by a slow and steady continual improvement. We're currently at about 85% back to normal. We still have episodes between exposures - but they've become fewer and less intense as we continue treatment. It is very difficult for our kids because alot of the symptoms are developmentally "age appropriate". Like your son, mine presented with all behavioral issues - ODD, ADHD and some pretty stiff OCD (which until we realized what was going on, we just thought the OCD was raging tantrums - turned out the tantrums were the result of him not being able to complete or verbalize his compulsions.) One bit of advice I can share that has been invaluable to us - track your sons symptoms daily. Keep a log or journal. We've created one in excel that I'd be happy to share with you if you want to PM me. It's based on a system another parent here, Buster, created. We ask his teacher at school to score his different behaviors each day so we can track if things are getting better or worse. It's a little bit more objective than just going by our memory. We also use it to note other things that may be contributing - strep in the classroom, didn't nap, etc...since at this age other things may trigger some of the behaviors. It has helped us tremendously, and has come in handy when talking to different doctors, therapists and school administrators. My son will be 3 on Tuesday, and he is looking forward to his birthday party at Pump It Up with his friends (a very small group). A year ago having a birthday party for him with other children around would've been a recipe for disaster - if not a lawsuit!! We're keeping it small, with only families who are intimately familiar with his condition, so if all heck breaks loose they'll understand! One of the good things about our son's ages and catching it young - we have a wealth of information and advice right here on these forums of folks who have been through that age/stage before us! You've found a very supportive community here!

We had our son's first IEP meeting yesterday with the school district. Based on his medical records and the initial assessments he was recommended for EELP Pre-K 3, possibly in the Emotionally Therapeutic classroom. We were given the heads up last week that they were having challenges coming up with goals for him since PANDAS is new to them and unique. Like every other parent here, we did all of our homework, got a special ed advocate to help, and of course collected lots of suggestions from you all and provided this all to them. We walk into the meeting yesterday, and despite most of the team members agreeing that a regular ed classroom setting is the ultimate goal for our son, he's just not quite there yet and the EELP or ETH classroom would be the proper placement right now, the ESE director steamrolled over everyone and said no, he needs to stay in the private day care we're at now, and all they need to do is send an ESE teacher there for one hour a week to provide services, but mainly to "observe and collect data". Seriously??? We've been collecting data on this kid daily for 10 months - what do you want to know? He's also had about 87 assessments done in the last 10 months because of course every new doctor and therapist or program (like Early Steps and now the school district) can't possibly use the information from the previous ones so they have to do their own. Now we're going to start over and observe and collect more data? For 9 weeks? (her original recommendation). The most frustrating things: - this woman had a very preconcieved notion of what was going to be best for our child prior to the meeting, without a clear understanding of what PANDAS is or knowing anything about our son - regardless of what the other folks in the room said, including the 3 psychologists, nurse and ESE teachers, this director ignored ALL of their input, and ours to push her own recommendation - she did this even as she continued to remind us that this is a "team" and we're all part of the "team" and we need to make sure we're considering all "team" members input. Really??? - she said that since they know nothing about PANDAS and he's their first case they have no idea how this will impact him in an academic setting - that's why they need to collect more data. Even though Dr. Murphy sent them over a detailed list and description of how the disease affects the ACADEMIC SETTING!!!! - because of the "infrequency" of his issues (only when exposed or sick) they're not sure how best to deal with that, it may be removal from the regular ed classes during just those times. Okay - first of all, I'm sure if you talked to his teachers now or us "infrequent" would not be the word we would use to describe our situation. Second - the number one reason we want special ed is because the only option they have at his current school is to REMOVE HIM FROM THE CLASSROOM - and this is not working, yet it's her brilliant idea of a solution? - and my personal favorite - because he's developmentally advanced in all other areas other than emotional and behavioral, there's not really that much that they can do until his behavioral and emotional issues begin to affect the other areas. WHAT????????? So we have to wait for him to become so non-functional before we can get services? That is the most idiotic thing I've heard. Shouldn't we be trying to fix his issues BEFORE they affect the other areas??? We did get her to scale back her "observation and data collection" to just one month, I'm sure her 4 weeks of observation will allow her to completely solve the PANDAS puzzle that so many of us have been working on for so many years. We're meeting again next month - and personally I can't wait! Sorry - I just had to vent. I couldn't believe how one woman could so steamroll a process that is supposed to be a "team" effort. AGGGGGHHHHHHH!!!!!!

Sorry you're going through this. One thing to keep in mind as you're looking for a pediatrician: just because he hasn't heard of PANDAS or treated anyone with it might not rule him out as a candidate. Just as important as his experience with it (especially if you're alrady working with Dr. K) is whether or not he's open to following the specialists protocols when needed, and if he's willing to be open and to LEARN what he needs to about PANDAS to help your child and others that follow. Our pediatrician had heard of PANDAS, and treated a few kids before he dx our son. However, what I love most about him is not that he was on the ball with the dx (although that's pretty kick ###### too...) is that he is always asking me at every appointment what else I've read, or learned, or seen or heard. We're now also seeing Dr. Murphy at USF (she's local for us) and even though he gets a report from her office after every appointment, he still wants to hear from me what else she said, her thoughts, planned direction, new issues/research. While it sucks to have your kid be the guinea pig for a PANDAS illiterate dr. All doctors have to start somewhere - and I think being open minded about the dx is just as important as their experience with it. Just my two cents - won't buy you much these days, but do what you want with it!

We have our IEP meeting tomorrow afternoon as well. I think we're approaching it as two seperate issues. The goals and such would be similar to another child with OCD, ADHD and ODD, however, the accomodations required (notification, etc...) will be catered to the health/PANDAS aspect of it. I'll let you know how it goes!!!

I'm sorry to hear about your setback. My son too, is the proverbial canary. Sometimes I think that's the hardest thing for others to understand is how they can react even when they don't have strep. Good thoughts are being sent your way!!!

Based on the way things were explained to me by our pediatrician, I always thought that some how the abx helped the immune system as well. It's the antibodies that are wreaking havoc, not the bacteria. So even after the infection iteslf is gone, the antibodies may still be identifying whatever it is in the basal ganglia that they find offensive as an active strep infection. The long term abx helps keep from reinfection yes - but in some kids (like my son) if you take them off, the immune system ramps back up assuming the BG is actually strep again - even without an active infection. Something about the abx tells the body that it can back off it's attack. I'm not a doctor - so I don't know what or how, but that basic explination always made some sense to me. I too would like to see a poll as to the relationship between time of onset and treatment to how long treatment was needed. We had about 7-8 months from our time of onset until we got treatment (we thought it was the "terrible twos" for quite a while!!) And now we've been on abx for 10 months. We tried taking him off 2x with disasterous results. And like others here, our initial improvement on the abx was amazing - almost 50%, but getting that last 50% has been a long slow climb. We lowered his dose of abx, but he got strep 2x on that dose, so now we've swtiched abx and are back at full dose...we'll see how that goes. But all in all, we're at about 85% now and realize we're running a marathon!

Our blood workup was done after months of abx, and a couple months after that last strep infection. My understanding, as was explained by our pediatrician and Dr. Murphy is that strep titers basically tell you that there was a strep infection present (which we already knew b/c of positive cultures) and that abx treatment can affect them. They both concurred that they are not indicitive of PANDAS or not. I should also mention, that our entire medical team agreed (including our neuro) that my son's titers may not be reliable either because of his age - pre-schoolers tend to not test reliably in that area. I'm not an expert - I know others on here know much more than I about this issue - but thought I'd pass along what I knew.

Like others who posted before me, we have not done OT specifically - we got screened and he was within the normal range on everything - although he was below average on sensory, it wasn't in the range requiring services. However, we are actively doing behavior therapy. That has been a challenge, because while my son isn't back to 100% from his initial exacerbation last year, he's at about 85% between exposures or infections. So we see some dramatic ups and downs - several great days in a row, followed by a rough day or two (but nothing compared to a full on assault!) So ther are days (like this morning) where he has an appointment with the therapist and he is a model child. It's frustrating - but I can tell you that the therapy has helped us in a few ways. It has helped us with the residual OCD, and it's given us and our son better tools to use, and help him self manage, the anxiety when it happens. I hate that half the time I'm paying the therapist for nothing when he's doing well - but we have seen a difference. Our breakfast ritual (the only consistently lingering thing from the original exacerbation last year) was completely eliminated for a while - unfortunately it just ramped up again with a move to a new classroom - but we're using the same tools as the first time and it's working again.

I called to check in and see how it went with the therapist after I left. I jokingly apologized to the director for the near brawl I started this morning (her and I have a GREAT relationship - partly because she's amazing with my son.) When she asked what I meant, I told her what happened. The director's response "You didn't smack her? I would have!" We did have a conversation about if/how it could've been prevented. But I think it's a moot point. This woman is just a witch and even if we weren't discussing my son's issues with the therapist, she probably would've still made a comment. My solace - is that starting on the 28th my son will be at full day Pre-K 3 through ESE with the school district. So I'll be dropping him off there and wont' have to deal with her anymore!!! My son will still be with hers in the afternoon - but I won't have to deal with her - so I'm happier! Although she's not as bad as the parent at our previous day care (were only there a few weeks - it was AWFUL!!) who actually asked the director to see my child's shot records after a bite to make sure they were up to date. Ummmmm - seriously???

Staff has been fantastic with my son, and all of our issues. We have a WONDERFUL child care facility - so there's been very little complaints there. We have a lot of discussions with the teachers and staff in private, however, sometimes out of necessity - the discussions have to take place in the classroom. Since I'm not shy about my son's condition, and will discuss it openly, it's never really bothered me. I have to admit - she's lucky my son was having a good drop off - or I might have released the frustration and stress build up from my son's meltdowns on her "perfect parent" behind!!! I knew you could all relate and wouldn't think less of me for just having to scream and vent!!!

I'll have to double ck when I get home - but we had a completely normal workup on my son (including low titers) and are absoultely 100% sure we're dealing with PANDAS.

This morning, I met with the behavior therapist to work with my son at drop off at school. We had successfully gotten rid of ALL of his drop off/breakfast OCD rituals and anxiety - until he started in a new classroom 3 weeks ago, and then it all came back. Only worse - the rituals weren't the same and I wasn't doing a quick enough job of figuring out what was new (and when he has an OCD related meltdown, forget about him verbalizing it!!) Of course - he was an absolute angel this morning. There were even a few curveballs thrown at him (out of his special milk, etc...) and he took them with a smile. As the teacher and I were talking with the behavior therapist about his issues this past week, another mother dropping her son off overheard us talking about Broderick biting this week and she chimes in (quite nasty) "yeah - he bit my son". Of course, I immediately apologize profusely and reiterate to Broderick that we don't bite our friends. To which she continues that he still has a really bad bruise, she's asked the school to try to keep my son away from hers, he shouldn't even be able to be at school and if I am taking him out I should keep him on a leash(exact words!). Stunned -I apologized again, and tried to focus my attention back onto the behavior therapist - the whole time this woman staring me down with the evil eye. Now - we've been dropping off our sons at the same time every morning for a few months now. She routinely stares down not only me - but any other parent in the room at the time. She'll give you evil looks if you or your child says hello to her son. She sits with him every morning and feeds him his breakfast, he's 3 and she still feeds him like a baby. She also schedules a meeting with day care EVERY TIME her son has any sort of incident at school, for example, if her son hurts himself on a toy - she demands the toy be removed from the classroom. When you look up the definition of "helicpoter parent" there is a picture of her. I've asked the teachers if her son has any issues like Broderick - since I try not to be judgemental anymore - I'm sure I look like one of those parents too with our OCD dances. And was told quite frankly by his teacher that no - the kid is fine, and actually a pretty good kid. Mom is just a giant pain-in-the-butt. What frustrated me the most about her attitude and stare down this morning is that she has been in the room and heard discussions with the teachers, directors, behavior therapists and knows Broderick has issues. She was there, feeding her son his breakfast, when I had the in depth discussion with his 2 new teachers his first week in this new classroom about Broderick, PANDAS, what it is, how it manifests, what to look for, etc... So while I've not had any direct contact with her regarding it - she has been privy to MANY conversations. I seriously just wanted to KICK HER IN THE FACE for telling me my son should be on a leash. It's hard enough for us to deal with him - but for pete's sake - the kids are just turning 3. It's not like biting or hiting or kicking isn't something that happens with the normal kids too at this age. And for her to be such a witch about things (when I was obviously mortified, apologetic, and addressing his issues - ######, the behavior therapist was there!) just pushed my buttons this morning. I know we've all dealt with the looks, nasty remarks, and inferences that there's nothing really wrong with our kids - it's our parenting skills. But it still cheeses me off when it happens!!!! Sorry - just had to vent. Now I can start my day.

I think that it's great that your son is so comfortable to be able to speak out openly about it. I hope some day, when my son is old enough, that he has the courage to be able to communicate that way!

Like the others, I can't give advice, just my personal experience and opinion. Our PANDAS outbreak started with a strep infection in May 2009 - but we didn't get dx until January 2010. (Not the typical no one would listen story - we just thought it was the REALLY terrible 2's). We did get the kids the H1N1 vaccine in October last year because of a planned trip to Mexico (where it was still running wild). We saw a horrible spike in behaviors the week following both shots (we couldn't do the live vaccine since I'm immune compromised myself - so had to do the 2 dose shot). It was terrible. Now that we know what is going on with my son, we will not be vaccinating for the flu. We will just take our chances. That does not change my opinion on the other routine vaccinations. We will likely be still doing those - only on a protracted scehdule (one at a time vs. all at once) to watch for reactions. But after our reaction to the flu shot last year - we're going to pass on that from now on. Just my two cents!

He's not working with an OT - just behavior therapy right now. He passed his OT screening with flying colors - although he was slightly below average on some of the sensory things - but still well within normal range. I actually learned that calming trick reading about calming kids with sensory issues and decided to give it a try. We just ordered one of those sensory swings that are cloth and wrap the kid entirely inside. We're hoping that might mimic what I'm doing enough to allow him to go in there when he needs to and calm himself without mom having to recreate moves from the WWE!

My son's day care has a standing policy about notification of anything contagious in the classroom and then they notify the parents in that class accordingly. However, even the best laid plans don't work if the parents aren't cooperative. Since it's so critical for us to know when he is exposed, we gave the day care permission to notify the parents in our son's class about his condition. They kept it anonymous, and didn't mention what his reaction was. They just stated that there was a child in the class with an autoimmune condition that makes him suceptible (sp?) to strep in particular, they reminded the parents of their already standing policy, and they also asked to be notified even if their child was exhibiting any signs of strep (sore throat, etc...) even if they were not otherwise sick. They reassured the parents in the notification that no childs identieis or medical conditions would be discussed other than to notify our family of possible expsosure so appropriate steps could be taken. At our request, they also notified parents in my daughters room too, eventhough she doesn't have PANDAS - if she's exposed, so is he! All of the families in my sons class have responded very well. Some have asked the director questions, which she politely declined to give details (siting privacy concerns) but she always passed along to me who was asking so if I chose I could have a discussion with them myself. I have had those discussions with some of the parents, and it has gone very well. A few of them even call me personally first when they suspect their child has strep or if they get a positive culture at the doctor's office. I do agree with smarty on one thing - you do have to be careful of who you're willing to discuss this with and how it is handled. There are a few parents who I would probably not wish to discuss this in detail with. While I'm a big proponent of education, and I'll discuss my son's situation openly, there are some parents who will jump off the deep end with not wanting their kid around yours because they don't want their kid to "catch" PANDAS, or they think your child is dangerous. (True story - my son is a biter when he's in exacerbation. The school never identifies which child bites - privacy - but the parent of the child he bit pitched a fit and wanted to see his immunization records to make sure his shots were all up to date - as if he was some sort of pitbull who'd give her kid rabies or something. I wouldn't discuss his situation with a parent like that.) I think notification is fine, but try to ensure anonimity and keep the reasons short and simple.

Stephanie, Yes, we know that it has to be a special needs private school. We're very lucky though, because here in Tampa there are a few really good options for kids like him. There is one that focuses on kids with average to above average IQ specifically dealing with ADHD and anxiety disorders. We've already toured the school and observed classes there, and we think it would be a really good fit for him. We even saw some kids have meltdowns in class and how the staff dealt with them was nothing short of amazing!! There is also a charter school (so we wouldn't need to use McKay) for high function children with autism, sensory and axiety disorders that is fantastic here too. We haven't had a formal visit or tour yet (need to get the IEP first for eligibility) but we've had conversations with the director and it sounds like it might be a good fit for him. A lot of the kids there are Aspbergers and such (which as we all know, has similar challenges to our PANDAS kids). You need the IEP in place to be eligible for the Charter school, and the private school we're considering is over $16k per year, so of course the McKay scholarship would work wonders! That's why we're focusing on all of this now (and going IEP vs. 504) so we can have those options readily available to us if we needed them.

Thank you all so much for the input!!! You've given me some really great ideas. We are lucky, that right now we are at about 85% - with residual OCD and ADHD being our lingering issues. However, when he is even just exposed to strep (and to a lesser extent anything else) everything goes to ###### in a handbasket pretty quickly. His specific issues are: violent aggression to other kids (unprovoked, the child just had to be within reach) Complete inability to make choices Obstinant defiance (adamantly refuses to follow directions) facial tic (not severe) Severe rages and tantrums (usually triggered by the increased OCD anxiety). Your suggestion of goals has really helped. One of the main things we want to get out of this is that when he is in exacerbation or having sever anxiety, that he can "self soothe". Right now, at home, when the rages hit I have to hold him in a wrestling hold and rock him to bring him back. It takes a few minutes - but if I have the hold just right, it works like a charm every time. His teachers aren't going to be able to do that for him in school, and as he gets older, that's not going to work. So we'll need something like allowing him to go to a "special" corner of the room to calm or be alone when he feels anxious. Knowing that the goals they're referring to can relate specifically to his behaviors really helped. I think I was stuck thinking about just academic goals. Thank you all again!!!

When he's not exposed or in exacerbation, his social skills are fantastic. Perfect manners, outgoing, friendly, good at sharing and taking turns. He loves circle time at school, and is very smart and interactive. When he's "off" (as our day care has taken to calling it) he will not go near other children, will not speak, will not respond at all, and refuses to follow any directions or join in any activities. I think that's why we're struggling so much with this - he is the classic textbook case of "sudden onset". He reacts significantly only when exposed or when he catches strep. We are on long term abx because he is very suceptble to catching it - so that has helped immensely, and we have some residual OCD and ADHD issues between flare ups, so on the whole he's about 85% normal right now. But we've gotten it down to only a few "episodes" a week, and then the'ry relatively brief compared to exacerbations (which we all know are 24 hrs a day!!)

I'm so sorry you are going through this. My PANDAS son is still very young, so the extent of our violence hasn't risen quite to this level - but it teriifies me that this is what I have in store. I would have to agree with the parents on here that are suggesting even short term use of the psych meds. The most important thing at the moment is to keep your daughter and the rest of your family safe. Unfortunately, there is no clear cut dx for PANDAS - even titers are inconclusive (my son's have never been elevated, even with a confirmed infection) and the CamK test is still in its infancy as far as a dx tool. Yes, these things are useful, but it sounds like you're in crisis right now and you have to do what you can to take control of the situation. Having said that - knowing that psych meds don't work for many PANDAS kids and only act as a band aid for symptoms on those that they do work on - I would push for your pediatrican to give a trial of abx. Ours did a 30 day trial almost as a dx tool. See what happens - if there's no change, there's not really any harm in a 30 day script. I'm not sure any of this helps, but hopefully it gives you some comfort to know that you're not alone, and everyone is here for you (in a virtual way)! I will keep you and your family in our prayers, and I hope things get better for you soon.

We found out a few weeks ago that our son qualified for ESE pre-K 3 based on his PANDAS symptoms. We have the IEP meeting next week to draft his plan, and the school district called today in total confusion. They've never dealt with PANDAS (not surprising), and they've requested to get additional medical information from Dr. Murphy because what our pediatrician sent was helpful, and qualified him for the OHI designation, but it didn't give them enough information as to how the condition will affect the learning environment - so they need more from Dr. Murphy. OK - fine. Then she proceeded to tell me that they are struggling writing measurable goals for my son since when he's not exposed and under control (at this point which is more often than not) his progress is above average - their normal practice (has to be able to complete a skill 4 out of 5 times for mastery for example) won't really apply, since he'll be able to do that no problem when not sick. (FYI - my son is extremely sensitive to even exposure, and can have several great weeks at a time at about 85% or so, and just has to look at someone with strep to take us tumbling downhill for a couple of weeks - so we know we're going to have a constant up and down struggle with school.) They've asked me for suggestions, or preferably examples, from IEP's of others who have PANDAS. I've searched the forums and found some useful suggestions and tips - but I don't know how to turn those suggestions for accomodations into measurable goals. I was hoping all of the wonderful moms and dads on here could come through (once again!) with some help with this. Our son is only 3, so some of the issues don't really affect him yet (decrease in handwriting, math skills, etc...) so that makes it tougher. I'm very uptight about this whole process, because we really want to make this a solid plan right from the beginning for a few reasons. One is so we have a clear base in place as to his dx, needs, etc... so we don't have to have a "what is PANDAS" discussion every year. But more importantly to my husband and I - if we have a well done IEP and the public school is not able to adequately accomodate our sons issues (which based on our early interaction with them, and the input from our special ed advocate - it's unlikely they will), we will be eligible for a considerable amount of state funding towards private school. We're hoping that the public school will be a good place for him, but we'd hate to have to waste years reworking the IEP and trying for a year each time before we can declare eligibility for the scholarship. (You must have an IEP in place for a year). Any help or suggestions - specifically on "measurable goals" would be GREATLY appreciated!!!! Thank you all!!! I don't know what I would do sometimes without all of the help out here!!