airial95

Take small, baby steps first at home. Start by leaving the room to go to the bathroom alone for 1 minute, then 2, then 3, and continue to increase until you can be gone from her sight for while at home for longer periods. Then start the process at school, same thing. Start by taking her to class, leaving her there for 5 minutes, once she is okay with that, then go for 10, etc....until she's able to stay at school longer and longer periods. Initially, you'll still be at the school, (make sure she knows that) but just not within her sight. It's a long process, and terribly hard because you feel like you're intentionally torturing your child, but it does work. Another suggestion that our therapist gave us is to use humor, we are a very sarcastic family and use humor often, so it made sense. My daughter often seeks reassurance that I love her, sometimes asking dozens of times an hour. We give her a limit on the number of times she can ask that day (initially it's high, like 5 or 10, then we slowly come down to eventually 1-2), each time she asks, we reassure her and then remind her how many times she has left to ask. If she exceeds the number, we're supposed to calmly tell her she knows the answer already. But that would set her off more, so it was suggested to use humor - so now when she exceeds her number I say something silly like "Oh man, you're on to me!!! I've always loved your brother Billy more, but since we lost him in the elephant cage at Busch Gardens we've had to settle for you!" (Billy is a fictional older brother that we made up). Sounds horrible, but it would make her laugh, and diffuse the anxiety. We've gotten very creative with it, and now Billy has legendary status in our family (you often even hear my kids say to each other "well, you're no Billy, but I guess you're alright". I use the same technique with the separation anxiety - ask her what she thinks will happen when I leave the room and suggest the most ridiculously absurd scenario I can think of (being kidnapped by ninja unicorns and taken to Camelot!) Again, it makes her laugh, and diffuses the anxiety a bit - it also gives her something silly to think of instead of the scary things she really thinks will happen. These are just some tricks we learned in CBT that have worked for us.

Rifampin has been a game changer for us. We have chronic strep - it was the first antibiotic to keep the strep at bay (prevent re-infection), and it reduced symptoms almost entirely. When we stopped a course of rifampin, my asked if we could go see the doctor - when we got there, he told him "when I was on the red medicine, Harvey was gone (what he calls his OCD), now that we're all out of the red medicine, Harvey is back. Could you give me more red medicine?" He was 4 years old at the time.

Has happened to us multiple times. We have been on abx consistently for almost 5 years, even on combinations of 2 and 3 anitbiotics. Some strains of strep are resistant to certain antibiotics, so it is entirely possible to get strep while on abx, even multiple abx. A 72 hour culture can be done to determine the specific strain, but they are not always reliable if a good swab wasn't taken.

Kim, no hard feelings at all, like I said, I'm sure you didn't mean for your words to come across the way they did. Kayanne, my son is the first to really present with typical ADHD symptoms, and even with PANDAS treatments they didn't subside until we added an ADHD medication (vyvanse). The undeniable success of the vyvanse in controlling the ADHD is leading our team to think of it separately from the rest of his PANDAS symptoms. (The theory being that if it was caused by the inflammation/immune response the ADHD meds wouldn't have an impact, and would actually compound the issues.) We have tried 3x to take him off the meds with no success even when ALL of his other PANDAS symptoms were in remission. No one else on my mom's side of the family (with the gene mutation) was ever formally diagnosed, however, looking back I often wonder about my sister as a child as well as one of my cousins -

My kids can't have the live viral vaccines because my treatment for AS is immune suppressive, and live vaccines are not recommended for anyone in the household of someone on my meds. So it has nothing to do with their PANDAS, or if they are HLA B27+, but more to do with my treatment. We didn't know about my status until about the time my son was diagnosed - so I honestly can say it wasn't a factor in any of our decisions up to that point. Had we known sooner would it have been a factor? I doubt it, but can't say for sure, it may have affected what additional research we looked at. We did not make the decision to vaccinate our kids lightly - we thoroughly researched the best available data at the time (actual published papers - not summaries or blog posts as I mentioned), and did our own risk/benefit analysis of what was right for our family. And frankly, that's what every new parent should do for their children. I know you probably didn't mean to come across this way, but when you say you know I "don't believe that vaccines played any part in that condition" it sounds very disrespectful and dismissive. You are right, I don't believe it played any part - I KNOW it. Why? Because it's very well documented. We know the exact date (May 19, 2009) and time (2:15 - upon waking from nap at day care) of his onset. We have the incident reports from that day, and every subsequent day after that documenting the increase in symptoms - which at the time we thought were just "terrible twos". We have the emails to the pediatrician asking for information on developmentally appropriate behavior (weekly emails, starting May 22, 2009) and advice. And more importantly, we have the medical records, which show that he was in the pediatrician for an impetigo infection on May 8th, and finished a 10 day course of oral (and topical) abx the morning of May 17th. His last round of vaccinations happened March 17, 2009. We are one of the rare few that have such a detailed history of our son's early onset - most were diagnosed at 4, 5 or 6 and then in retrospect believe it started younger. Because of our (accidentally) meticulous record keeping of both the day care records and correspondence with our pediatrician, his records, and our own data collection prior to diagnosis (attempting to identify patterns and causes of his behavioral outbursts - which we continued after diagnosis), a very clear presentation of his onset -and the causes of it were easy to identify. When Dr. Murphy did her case study, she even took it one step further than we did with a comprehensive review of his medical records going all the way back through my pregnancy records, and even looked at my daughter's records for comparison (she had not had her onset at the time). By saying I don't "believe" vaccines had anything to do with it, it implies that I am just not willing to acknowledge that it is the case, which I'm sure you didn't mean. But it forces me to defend my son, and our parenting decisions - which is counter productive to what we are all trying to do here - which is support each other and share our stories. I do believe that there are kids who are triggered by vaccines - I've said it before. It is just not the case for us. I've read all the links you have posted, and while they are interesting, they don't change our son's medical history.

My son has tested + for strep multiple times while on full strength abx, and even a combo of 2 and 3 abx. When we see a recurrence of symptoms it means 1 of 2 things 1) a new strep infection or 2) he has been exposed to a strep infection. Just because they are on full strength abx does not make them totally immune to picking up new bugs.

I appreciate the additional info, but in my son's case there is absolutely no connection to his onset and vaccines. Furthermore, we have a genetic history of the HLA B27 genetic mutation, which makes our family predisposed to autoimmune and inflammatory conditions genetically, I had chronic strep as a child and our family also has a family history of Rhuematic Fever and strep complications. Two different PANDAS experts have said unequivocally that I had it as a child, and one look at my medical history would leave no one in doubt - my chart reads like a textbook for PANDAS until I was in my early 20's (which is when they theorize that "classic" PANDAS kids may "outgrow" the immune response). To date, there has been no research connecting HLA B27 to PANDAS directly, but there has been research linking it to chronic strep and RF. So while I appreciate all of the additional information. My child was not vaccine injured in any way shape or form, the only way to even make that leap is to ignore all other aspects of his medical history except the age of onset and the fact that he is vaccinated. My daughter didn't have her onset until she was 5 years old, well over a year after her last vaccination. In our family's case there is no correlation. I know that is not the case for everyone, and some have clear connections to their onset related to a vaccine. We do not. We just have the wonderful genetic jackpot that makes my kids prone to strep, and opens the door for this disease. I will add that his strep infection was not strep throat - which is uncommon in children under 2, but impetigo (which can also be caused by staph, but in this case it was strep), which is very common in children under 2 - especially in a daycare setting.

His onset was within days of a positive strep infection - no correlation to the vaccines. His MMR was at 15 months. We put together a very detailed timeline of his onset, vaccinations everything because Dr. Murphy at the Rothman Center published a case study on him as the youngest documented case at the time. So she looked deeply into any - and all - other potential causes. His onset was within 24 hours of finishing a 10 day course of antibiotics for a strep infection. He is textbook. We continued to vax after onset - and even after diagnosis - although on a one at a time basis. He has never had a reaction to vaccines. I will say - I haven't looked at your link yet - but his onset DID look identical to autism. Had we had another doctor - I'm certain he would've been "labeled" and that would be that. What struck our doctor as odd in his presentation was the verbal regression - he was very advanced for his age - well over 50 words at his 15 month appointment and speaking in full, grammatically correct sentences by his 18 month check up. Within a few weeks of the strep infection - he lost almost all verbal ability. Had the regression been less drastic - if he had been on par with his peers verbally and then regressed - autism would've fit. But as our doctor summarized for us - you just don't go from being developmentally AHEAD of the curve to autistic over night - something else was up. He dx us at that point (took us 6 months to seek help beyond thinking it was the "terrible twos") and we started keeping detailed logs that pointed a clear connection to strep and his symptoms - also pointed out to us that our son was asymptomatic to strep and the initial infection at onset was the only time he ever showed tangible physical symptoms. I will also add as it relates to my son - his onset was sudden. Abruptly sudden. I can pinpoint it to the exact day and time - which isn't often heard of in lots of folks who suspect PANDAS in their younger ones. He was a classic textbook as it comes - with the exception of age of onset. Which thanks in part to Dr. Murphy's case study on my son, is no longer a major diagnostic criteria.

My son is 6, in 1st grade. He moved up this year with 7 other classmates, so his grunting tic that came back over the summer is nothing new for them. So he hasn't had problems in class. They all know about "Harvey" (what he calls his OCD/PANDAS). But the other day he said that an older kid said something about it in car line to him. I could tell it bothered him because he told me "Mommy, I know my grunting annoys you and daddy, but it annoys me too. I wish I could stop" (at which point I asked where these feelings were coming from, we aren't annoyed, just worried, etc...and that's when he said an older kid said something). I asked how he responded - he said (quite confidently according to a teacher standing near by) "It's one of my tics, it's just what I do" and just turned around and kept talking to his friend. The older kid didn't say another word. I think that the kids being able to answer confidently - regardless what the tic or the answer is - is huge. It shows them that there is nothing for them to be embarrassed about, and it shows a potential bully that they are not looking at an easy target.

I'm one that you could call "on the fence" Neither of my kids had any negative reactions to the standard vaccines - and my sons sudden onset was directly related to a well documented strep infection (impetigo) so while he was young at onset (19 months) there was no temporal relationship to vaccines at all. (We plotted a very detailed timeline of his onset that included vax info). Now that we know they have PANDAS, we take each shot one by one, evaluating each of them on a case by case basis related to risk vs. benefit for OUR child. And THAT is the key thing that folks on both sides of the debate tend to lose sight of. What is right for one family is not necessarily right for another - there is no right or wrong in this debate, only what is right for your family. As to the research, I'll be honest, we did a lot of homework before we had our first child looking at all of the studies available at the time, and I learned a very valuable lesson - truly unbiased research is a rarity. In addition to reading the studies and assessing their validity - it's just as important to look at the researchers - what other research are they doing? Who is funding their research? Where have they given lectures, etc...? What is their area of "expertise"? We found a lot of disturbing information on both sides of the debate when we looked at that information. For example, our children were born before The Lancet retracted Wakefield's study and it was discredited, but when we read the study (media summaries of any research often adds bias and implies information that is not actually representative of the study itself) and researched who Wakefield was, we saw that among his other research activities in the past he was researching/patenting an alternative vaccine to the MMR. That didn't sit well with us - because it appeared that he had a financial interest in discrediting the MMR vaccine that was currently in use. So we didn't feel comfortable taking giving his study undue weight in our decisions (and at the time, it was still considered the best evidence out there.) Another example is the CANS paper put out by Singer et al, they failed to disclose that their research is funded by the pharm companies that manufacture Tourette's drugs, so they had a vested interest in stating that those medications are appropriate for treatment of PANDAS like disorders. Again, a retraction had to be printed. Both my husband and I are engineers, so scientific research isn't something that's too foreign to us. But one thing I have found, whether it's medical research, or something related to my field, there is always more to the specifics than what a head line implies. And while not ALL researchers have an agenda or financial incentive behind their results, but it's just as important to know who they are and what point of view they are coming from as it does impact how the data they publish is represented.

If he really wants to go to school that badly, he may be willing to do the work that is required for CBT/ERP. It doesn't work for many kids because they just aren't ready for it - either they have not addressed the medical side of it, or they are just unwilling to put in the work required. We were "lucky" in that my son was so young at dx, our initial attempts at CBT were really more of how we should/shouldn't respond to his OCD (his rituals involved us immensely). Was it hard? Yes. Did it suck? Yes. But because of his age, there was never an issue with him complying. He's almost 7 now and compliance is a non-issue. CBT has just been part of the deal so long he's never known life without it. And it's immensely helpful. If he is willing, it might be time to try it. Having a goal that the child wants to reach (like attending school) is a huge motivator for CBT/ERP.

We used an excel spreadsheet and visually graphed progress. It helped immensely to see how quickly patterns emerged based on different treatments, etc... We went even more specific to our chile than the Yale OCD Scale, mainly because when we started our log our son was still a toddler (2 years old - he's almost 7 now) and the typical OCD scales were difficult to apply at that age. We listed every symptom/behavior we wanted to keep track of, and rated them daily on a scale of 0-9. 0-3: Normal age appropriate behavior (because many symptoms can be seen in a normal child as well, just not quite to the scale PANDAS parents see them) 4-6: A step up from normal age appropriate behavior, but no SO disruptive that they didn't recover; 7-9: Completely dysfunctional. We used an numerical scale because it helped us keep the emotion/stress out of the log. For example, after a long day where everything goes wrong at work, a 15 minute tantrum at the end of the day over teeth brushing rituals seems terrible and worse than it actually may be. But when I had to actually grade it on a scale of 0-9, I realized that what totally felt like a 9 to me at the time, was probably more like a 6 or 7 because tantrums for the same thing earlier in the week lasted well over 90 minutes - so objectively speaking, 30 minutes was actually an improvement. Then we would total the scores for the day and graph them. We had a "goal" score range that we were looking to hit with each treatment/therapy, etc... Using this method, we were able to identify several patterns that were huge for us, for example: - when my son is exposed to strep (but doesn't test + himself) we would see about a 20-30 point spike in behaviors for 3-5 days and then steady improvement for another week or so back to what it was prior to the exposure. (This helped us time when to see the doctor for strep checks - if things were still getting worse by day 3-4, we knew it was likely more than just an exposure). - when my son wets the bed, he is + for strep. 100% of the time. Regardless of what/how much antibiotics he is on at the time. This has been HUGE for us in managing subsequent flares. If he wets the bed/has a potty accident - we are in the Dr. THAT DAY. No waiting to see if things get worse. This early intervention has helped us keep flares from spiraling out of control. - napping can help improve his "daily scores" during flares by 10-15%. Continuing naps outside of flares has helped keep exposures to a 1-2 day spike with typically only 1 "major" meltdown. If you're interested in our spreadsheet - PM me your email address and I'll be happy to share. I'll also point out that our spreadsheets (or "crazy mom binder" as my husband called it), helped us convince more than one doctor who was on the fence about it being PANDAS that it couldn't be anything else. The data didn't lie!!

We waited almost 3 years before we decided to put my son on any ADHD medication. We hoped that it was just a symptom of the PANDAS and would resolve itself with all of the other symptoms. It didn't. Finally, at almost 5 years old, we pulled the trigger and put him on Vyvanse. What made the decision for us was his impulsivity had gotten so out of control that 3 times in one week he almost got hit by a car letting go of my hand in a parking lot darting out into traffic. At that point we decided that child on drugs was better than a dead one. We chose Vyvanse because it had a low dose available, and it didn't need to be titrated up or down if we wanted to stop it. The results were amazing. Since he has started the Vyvanse, we have tried twice to take him off. After IVIG, all of his PANDAS symptoms were completely gone - he was 100%. So we decided to try eliminating some abx/meds. We obviously started with the Vyvanse because it was the one we were the least comfortable with. Within 4 days his teacher was calling us telling us something was off, wondering if he (or someone in the family) had strep, she hadn't had any kids out sick but he was starting to call out at inappropriate times, act out, unable to focus or sit in his seat and all of the fun stuff we saw before the Vyvanse (his teacher didn't know we had taken him off. We like to get their objective thoughts). We put him back on. The second time we tried to take him off the exact same thing happened. At this point his PANDAS symptoms are well controlled, but he needs the Vyvanse for the ADHD. Our doctor is of the mindset that because the Vyvanse works so well (most meds won't work if it's just a PANDAS symptom), and because the ADHD is the ONLY symptom that has not resolved (and it has not been his worst symptom by any stretch of the imagination!!) Until something else changes, we will just continue to look at the ADHD as separate from his PANDAS. Considering his ADHD symptoms do not change in a flare (they are pretty constant, no waxing or waning like other symptoms), we don't have too much of an issue with taking that approach for now.

We just went through this when finally getting our kids teeth cleaned/checked for the first time in almost 3 years. (They are both headed for braces, so we felt we couldn't keep putting it off!!!) First off - I agree with the others about talking to your PANS doc/ped about the sedation/NO2. Our doctor used NO2 with no problems, but neither of my kids have MTFHR issues. But I still checked ahead with our doctor. Same thing with upping the abx before the appointment, check with the doctor!! Call the dentist ahead of time and discuss a couple of things with them: First - that your child has PANDAS, describe it as rheumatic fever of the brain if they haven't heard of it. Based on that alone they will know what extra precautions to take (as they also have to take precautions for RF patients). Second - explain to the dentist what happened last time, and that your daughter has anxiety. Our dentist asked me that up front when she found out my kids had PANDAS (she has 3 other PANDAS families in her practice!!). What she has done for other with anxiety is set up a series of appointments, the first one, just gets the kid through the door. Second, maybe they sit in the waiting room for a bit and the dentist/assistant comes out and chats with them. The next time, they go back and just look at the rooms, they continue this progression - all the way up to them watching a cleaning - to get them used to it. It obviously takes some time (they do it over a few days/weeks, and no - she doesn't charge for all of these visits!) But she has had success with it. Almost like mini ERP for going to the dentist (and she has said that she's needed to use it on lots of kids who are scared, not just PANDAS kids). Lastly, we learned something from the dentist when we were there about long term abx and how they affect the teeth. Long term abx will not help prevent cavities, however, once cavities form, they will help "mask" them. When a cavity begins to get infected, bacteria causes pain and discomfort, and that's typically when we go to the dentist. This bacteria can be killed off by the abx, however the bacteria that actually CAUSES the cavities cannot. So, what happens is that the cavity continues to get worse and worse, but the person has no clue because the infection that would normally trigger our need to see a dentist isn't there because of the long term abx. I probably didn't explain that too well, but I asked our pediatrician about it and he basically told us something similar (and also compared it to our need to use a topical abx in the nostrils because oral abx won't always get what's hiding in there). As for the cleaning, it triggered about a 3-4 day rise in symptoms (tics for my son, nervousness for my daughter). They both had cavities that had to be dealt with (on the 13 year molars - still way too far from losing them for us to completely ignore). What was initially thought to only need a filling in my daughter ended up having to be root canaled/capped (because the cavity was much deeper than thought - she should've been in a TON of pain - but no signs of a problem). With the actual dental work, we had the same blip in symptoms, but they resolved again in a few days. We switched up abx a bit to cover the cleaning and dental work and used ibuprofen regularly to get us through.

Keep it simple, and relevant to what will happen in the class room. I always describe it simply as rheumatic fever of the brain - response to infection causes neurological symptoms including loss of fine motor skills, cognitivie abilities, OCD, ODD and ADHD tendencies as well as some vocal and motor tics. Period. And then I move on to what they will see in the classroom from my child and how it will impact their ability to learn. If the teacher is interested and asks for more - great, give more info. But they don't really need to know the different treatments (unless its something they have to supervise in class), the different triggers (other than if you're asking them to notify if others are sick in the class), or anything else about it. My experience has been that providing TOO much medical mumbo jumbo also opens the door to discussing the "controversies" and that will give them wiggle room to deny services/accommodations.

wedge, Where in Florida are you? We have a support group for PANDAS parents in Florida if you're interested, PM me. Not sure how many there are treating it in adults (I think there may be one or two), but they may have some suggestions.

There have been those that have been able to wean their kids off of abx, but I agree with deedee, having a back up plan in place would be a good idea. As for the pneumovax, it really is a personal choice. We have never had an issue with the standard vaccines, though after diagnosis we take each one on a case by case basis, and we chose to do them on a protracted schedule (one at a time with several weeks apart) so we could clearly document issues. That being said, we opt out of things like the flu vaccine because in my mind the risks (potential flare) far outweigh the benefits (maybe not getting the flu). The real question on the pneumovax challenge (which is what your doctor wants to do, vaccinate and then re-test to see if they mount a response. If they don't, they are classified as "immune deficient") is why they want to do it. Historically it has been difficult (almost damn near impossible) to get insurance coverage for IVIG for PANDAS. Unfortunately, it's also been increasingly difficult to get IVIG coverage for other immune deficiencies either in recent years. I've had multiple doctors report (including at the Atlanta PANDAS conference last spring) that insurance companies are increasingly requiring current patients to stop IVIG treatment for 4+ months and "retest" to see if they still need it - and these are patients who get it weekly and some can even die without it - but the insurance company still fights them them to re-test. The pnuemovax challenge is one of the "tests" that the insurance company will accept to get IVIG coverage. So the question you have to ask when deciding how to move forward is: how will the results affect our treatment plan? Are we considering IVIG and pursuing insurance coverage the only way to make it feasible? Have we had chronic illness that would also point to an underlying immune deficiency that we need to address, or is this being recommended simply because of the lab results? Does the benefits of this "test" outweigh the potential risks (of a flare)? Only you can answer these questions, but I thought I would share one of the reasons many doctors now seem to be pushing this vaccine than before.

Just another thought - we are not dealing with Lyme or co-infections (no + or IND bands across the board through Igenex), but my son has had to use many of the stronger antibiotics - our issue was chronic strep (always + swabs). Even when he was on full strength antibiotics he would test + again. When he tested + on a combo of Azith and Augmentin, we added rifampin for 30 days - it completely knocked out his tics and made a huge difference. At the end of 30 days, he asked our pediatrician for "more of the red medicine" because it "made Harvey (his OCD) go away and now that the red medicine is gone, Harvey is coming back". He was 4 1/2 years old at the time - my ped wrote the script without question! My son is now on a combination of 3 abx, and has done 5 IVIG's which has taken us from 6+ new strep infections per year to only 2 since last 12 months. Both of those times came when we tried to lower the dosage of one of the abx. (Last time the strep was in his nasal cavities). My point is - every time we have a ramp up in any symptoms that last more than 3 days (his reaction to exposure is usually 3-5 days, with things improving by day 3) or he wets himself/the bed (+ for strep EVERY TIME this happens) we get the whole family strep checked. It seems unlikely considering the amount of abx they are on regularly - but it has happened - more than once. So it never hurts to check for infection, just because you're on abx doesn't mean you're 100% protected. Our doctor also has us swab muciroprin (topical abx) into the nasal cavities 2x per day for 30 days whenever they are + for strep (or for 10 days when it's just an exposure) because strep can hang out there and cause problems that the oral abx can't quite knock out.

We found sleep to be critical to my son's overall recovery. We found that he was more suceptiblie to exposures and even mild setbacks when he was tired. Mid year last school year I changed my work schedule to have the kids home after school instead of doing after care. He would nap 2+ hours at least 2-3 days per week and the change was astonishing. He had his last IVIG over Christmas and his teacher asked if they used something different because it seemed to last longer this time around - nope, only change was the naps. Our pediatrician explained it to us this way - their immune system is wonky, and because it thinks a protein in the brain is strep, even in the complete absence of strep - the body still thinks it's fighting infection. Lots of the stuff we are doing (abx, anti-inflammatories, IVIG) help, and if we can prevent the antibodies from crossing the blood brain barrier (by reducing inflammation) we can see recovery of symptoms, but it takes time (and the IVIG) to help stop the immune system from thinking there is strep in the body. Basically, the body continues to think he is sick, when he is not. And when you get sick, what does your body need most to recover? Rest. So the more he was getting extra rest, the stronger we saw him become. He had his first strep infection (and subsequent flare) since December a couple of weeks ago - got strep during the week of Vacation Bible School - when he was staying up later (it's in the evenings) and his schedule was fuller than any other week of the summer so he wasn't getting the "down time" he had been getting. So it's very possible that the extra rest is making a difference for you. We are often looking for supplements, abx, oils, other infections, additional testing to help us while sometimes overlooking some simpler solutions that could make all the difference in the world. We've known for YEARS that my son does better when he has additional rest (naps, etc...) We figured that out with our daily logs and journals early on, but as he's gotten older (and better), we moved away from being as diligent about keeping daily scores and notes - we went back to it in the fall when he started Kindergarten, and that helped us realize that the extra rest was something we had moved away from, and it was exactly what he needed.

OCD is often the last lingering symptom for many kids because their OCD rituals, compulsions, etc...have become engrained. Like MomwithOCDson suggested, it might be time for therapy. We found that with our son especially, because he was so young at onset, all other symptoms would significantly improve/resolve within a few weeks of changing up abx with a new strep infection - but the OCD seemed to linger. We started therapy and our first therapist (who was awesome, so sad she got married and moved away) pointed out that not only were we accommodating his OCD (which is often the case to maintain sanity) but in young children especially it can become their "normal". For example, you don't think about washing your hands after using the restroom, it's just something you do because you ALWAYS do it. Same thing for the OCD. Having to line up your trains before leaving the room isn't any big deal because it's just what you ALWAYS do when you leave a room. She gave me an analogy that really resonated with me on the whole "residual OCD" concept. When someone gets a severe injury, they use pain killers to help with the pain. As time goes on, they grow dependent on the pain killers because they remember how awful they felt when they don't take them, and taking them makes them feel good. Eventually it becomes a never ending cycle and you have an addict. Same thing with PANDAS and OCD in young kids. I may have to touch the light switch 3 times before leaving a room when I'm in the midst of a flare because if I don't I have terrible anxiety and worry about whatever crazy thing my OCD is telling me. Once I'm past the flare, I still will continue to touch the light switch 3 times because I remember how awful it was not to, I no longer have the same fears and worries about whatever crazy thing my OCD was telling me before, but now I just don't want to feel "bad" so I'll just continue to touch the light switch. It made a lot of sense to me. And CBT/ERP therapy has really helped both of my kids in the long run. It helps with the residual OCD like I mentioned, it helps my husband and I react/respond better when OCD is in control, and it gave my kids a vocabulary and tools to use even in the midst of bad flares that have helped them maintain functionality. It's hard work, and torture for us parents because part of it is letting your child feel the anxiety and have the meltdown so they can learn that they can come out of it, but it has been worth it for us.

Lot's of us have seen that when our kids actually get fevers, their PANDAS symptoms seem to get better, go away even, only to return when the fever passes.

I hate to say it, but yes - not only is it possible, it's also likely. For a few reasons. First of, Dr. Murphy at Rothman has done research that has indicated a high incidence in siblings where there is a family history of autoimmune disease, rheumatic fever, or chronic strep. The correlation increases when the family history is on the side of the mother. So that makes it not only possible, but likely if you have any of those past issues. One of the other prevailing theories of "classic" PANDAS is that it can be caused by a particularly virulent strain of strep, which is why you may see "clusters" of new cases in certain areas (ie Leroy, NY). If that is the case, unfortunately that also makes it more than possible to have more than one PANDA because let's face it - if one kid gets sick, the other likely has it too. So there is the theory behind more than one - from a classic PANDAS standpoint (folks who deal with Lyme might chime in about congenital Lyme also being a possibility - but I'm not a Lyme expert so I'll let them handle that). Now - for my personal experience. My youngest was the first diagnosed, he had very sudden onset at 19 months old. Unfortunately, while onset was so sudden that we all joked "someone must have slipped him the memo while he napped" - his behavior for months was chalked up to the "terrible twos". Everything he was doing could be explained as age appropriate - frequent urination (he was potty training, liked the attention), OCD tendencies (toddlers trying to control their environment, perfectly normal), picky eating (he's 2, what else is new), rages (not being able to communicate his needs). Well, after 6 months of the most epic terrible 2's ever, we noticed that he lost almost all language, his rages were so beyond control we couldn't leave the house, and even our day care agreed that something was seriously wrong. All his teachers, and even some of our close friends who work with special needs kids automatically thought autism. They were wrong. It was PANDAS. 3 weeks before he "got the memo" during nap - he had a strep infection. Our doc gave us 30 days of abx, and we were on our way down a much different path than autism. As part of our treatment plan, whenever we saw a rise in symptoms or he got strep, we would automatically get the whole family swabbed to make sure no one had strep without knowing. His older sister often was positive. Almost 2 years after my son was diagnosed, we started to notice my daughter getting extremely moody - like she was going through PMS, but at 5 years old. She would cry over nothing, hide in corners and just be very sensitive to everything around her. We started to notice that these "episodes" always coincided with her brother's flares, and subsequently one or both of them having strep. Our doctor would always write her 30 days of abx when she was positive as a precaution (for her brother's sake), and these mood swings would always be over by the time she finished abx. It was difficult to determine if it was really PANDAS related, or just attention seeking behavior because her brother would be in a bat- crazy flare at the same time, drawing most of our attention. Our doctor didn't believe she could have it too at first, agreeing that it was just attention seeking behavior and somewhat PTSD on my part - always waiting for the other shoe to drop and looking for PANDAS everywhere. Just as she started K, my son got strep - again (he got it ALOT the first 3 years), because of school starting chaos, we didn't get our daughter in to get swabbed right away. Over the weekend, her moodiness exploded into outright full blown OCD - no denying it. That Monday, we took her into the ped, she was + for strep, and he was convinced. For almost 2 years - every flare she ever had cleared with 30 days of abx, until last year, she got a bad case and we had to pull out big guns. But it is very possible. My advice to you - keep a detailed log or journal for each child. Document behaviors, moods, meds, foods, etc... We used a numerical scale to try to keep emotion out of it (when I was stressed it always seemed rages were worse, but when I had to empirically rate them, I would realize that it was only 30 minutes this time, vs. 2 hours last time, so it really wasn't that bad). We also tracked when others around them were sick to look for patterns. It was extremely useful and helpful to see exactly what might be going on.

LLM's response was pretty comprehensive, the only thing I will add is to keep a detailed log/journal daily of your child's symptoms, any treatments, even what they ate that day if you start to suspect food issues. It seems like you're already trying to go back and connect the dots, but if you keep detailed records going forward, it will probably help you A LOT for your upcoming appointments. We used an excel spreadsheet and scoring system that another parent here suggested (0-3 = typical age appropriate, 4-6 = difficult/challenging, 7-9 = WTF just happened to my kid???) We listed on the spreadsheet each of the symptoms (specific to each child - we have 2 with PANDAS) and scored them each day. We found using a numerical scale kept us objective vs. just taking notes (we found depending on how emotionally drained, tired, stressed we were impacted how we verbally described the days events - but quantifying it helped keep the emotion out of it - but we also did keep general notes like "didn't nap today, missed morning vitamin, 2 kids out from class sick" so we could also see if other things were affecting symptoms. We were then able to use the log to come up with daily "scores" and chart trends in symptoms, etc.. An example of things we learned specific to our son using the logs: - At 6 yo he still needs to nap every day because we found naps had a HUGE impact on symptom severity when we cut them out. - Wetting the bed = + throat culture EVERY TIME for our son and often precedes other symptoms by a day or two (both of my kids also are asymptomatic to strep, no sore throats, fever, etc...) Now when he wets the bed or has a potty accident, we don't wait for other symptoms to turn up before heading for a strep check. - He will flare from just being exposed to someone with strep, but the symptoms will spike for about 3-5 days, and then subside quickly with no lingering issues after about 2 weeks. I think that our logs were probably our most valuable weapon in fighting this craziness, and keeping our family functional.

I'll also add that having done CBT when new flares come up, while it doesn't eliminate the OCD, it makes it much more manageable. My kids both tested positive for strep about 2 weeks ago, and while we have had some bumps in the road, they have remained functional and the resulting flare no longer controls our entire household like it used to. They were still able to participate in VBS, play with friends, and my daughter even went to a sleep over last night (she has bad separation anxiety). And it's a good part a result of them knowing and using some of their CBT tricks and us knowing how to respond properly. For example, my son's separation anxiety spiked with this infection and for the first time in years, he started being afraid to leave the room alone even to go to the bathroom. After a couple of days we realized how severe it was, and started implementing some of our tricks and language. He would ask me to go to the bathroom with him, I would ask "why", his answer "I'm afraid to be alone". My response "Are you afraid to be alone, or is Harvey afraid to be alone". No answer (which means it's Harvey and my son knows what comes next...hoping if he doesn't answer I won't say it). My response "I thought so, and you know that Mommy doesn't have to listen to Harvey. So I'm not going to go with you into the bathroom. What do you think will happen if you go in there alone? - and here I would ask him a series of rhetorical, increasingly silly hypothetical situations that might happen alone in the bathroom - the sillier the better". Ultimately we find a solution to him being able to go on his own. It might be leaving the door open, or my talking to him from the kitchen while he's in there, or even taking one of the dogs in with him! But we hold firm and don't just give in - even though it's much easier. This wouldn't be possible in the midst of a flare if we hadn't already laid down the foundation through CBT.

There are some doctors leaving with Storch. They are leaving Rothman at the end of July, but the new facility won't be taking new patients until October from what I understand. My daughter's therapist Dr. Nadeau is making the move - that's how I found out about it. The new facility is in Tampa, just over the bridge from St. Pete, not too far from the airport. Closer for us, as we are in the Tampa area. (hoping we don't have a major set back before they start taking patients because my daughter doesn't want anything to do with anyone other than Dr. Josh!!) We have been very lucky with most of the therapists assigned to us, there was only one that we didn't really connect with and we requested a new one and didn't stick with her. We started CBT with my son before he even turned 3, and have done it off and on with both kids since. Most recently, my daughter was experiencing a mild flare from allergies (intrusive thoughts) and ASKED to go see Dr. Josh at the worst of it - so it has been very helpful for us. But even when we started, which was when my son was at his worst and we were still trying to get a handle on the medical side, we found it very helpful for other reasons - mostly because it helped us as parents learn what we should and shouldn't be doing along the way. Typical parenting techniques don't always work with our kids, and the therapists were able to help us navigate some of the issues like discipline, enabling the OCD (with a toddler, most of his rituals were things WE had to do in a specific way...but we didn't know what that way was...talk about a nightmare!) And even more so - it gave my kids a vocabulary to use to help them communicate when things were bothering them. Our son's first therapist encouraged us to give the OCD a name, partly so my son could have a way to communicate about the OCD, but also so we could separate his actions from "Harvey's" actions - he's not a bad kid, but Harvey makes him do things that are bad sometimes (like trying to kill someone because his food isn't lined up properly). 4+ years later and both kids use the Harvey moniker now. (Funny story, we had to explain to his K teacher this year who "Harvey" was so if he told her Harvey was bothering him she would understand and not think he's certifiable. He had a huge meltdown in class one day - turns out the kid next to him had strep - and after I picked him up, some of the kids were asking if he was okay. With my previous permission, she explained a bit about PANDAS and how it makes some things hard for him and all about Harvey - I got multiple calls from my sons friends moms freaking out because they thought I would be livid that the teacher was telling kids my son had a "little friend in his head" and was crazy - until I explained to them that that was how our son came to understand about his OCD at such a young age...we still get a good laugh about that. And the teacher did an EXCELLENT job explaining it.)