airial95

I would also ask that the respect work both ways - for those of us who are not dealing with lyme, respect should be shown for our decisions/approach as it relates to how or why we have ruled it out without judgement.

I'll be the fly in the ointment, I'm disappointed by the decision - but I will wait and see what happens before passing judgment. I think that the topics/knowledge have evolved greatly since the "Lyme Wars" of yore so hopefully that will help. But I will tell you that I stopped posting here as frequently when that happened. As a straight up strep trigger, I found that every question or post I started quickly turned into a full court press as to why I should be looking at/treating lyme, and the support I was looking for was lost. I found myself to often having to defend/explain why we weren't treating/testing Lyme instead of getting help for the questions I had. I always tried to steer clear of the battles, because I encourage healthy debate, Lyme is a trigger for PANS, and it's important to be able to discuss that openly - but after a while, I just stopped coming here as frequently for support, I felt families like mine were getting lost in the sea of co-infections. If we can have happy and healty discussions, great, that remains to be seen. But it starts with respecting others right to treat their children with the best approach for that family. Respect works both ways.

I also likley had PANDAS as a child, and while I have outgrown the "PANDAS" part of it (no longer react to infection), I have permanent, long lasting OCD as an adult. So while the kids may outgrow the immune response - the effects can be lingering beyond that. We have used only abx/probitics with no yeast issues or other problems, but are heading for our first IVIG with my son next week. So I can't offer any advice there - but as someone newer to this, I would suggest keeping a log/journal of symptoms/treatments. Sometimes it can help you objectively see progress, even when you're exhausted and emotional!

My son had sudden onset at 19 months following an impetigo infection. He was dx by the pediatrician at 26 months. (we thought the behavior issues were just the world's worst case of the "terrible 2's!") At 30 months, we went to see Murphy. She did a case study on my son as a classic PANDAS case - meeting all criteria but outside the expected "age of onset". So cobbiemommy - it may be that your child could have had onset at that time. I think one of the struggles with the question of can it be there from infance is the onset criteria. One of the hallmarks of this condition is the fundamental personality change of the child. Although my child was young - his onset was abrupt, and drastic. We used to share a joke with the day care teachers that someone "slipped him a memo" at nap the one day that he could crank it up a notch and he was making the other kids look bad. I still have the behavior report from the day of onset - he woke up from nap and bit 3 different children unprovoked. He had NEVER so much as retaliated against a child previously. How could you tell if an newborn has had a change in behavior? Not to mention the undeveloped immune system making it questionable. Now - that being said, it's entirely possible that there is a similar encephilitis process happening causing issues. I personally think that PANDAS/PANS is just the tip of the iceburg as far as the infection/mental health connection and there is so much more to be discovered. So I would say - no, it's not possible to have PANDAS at birth - there needs to be a triggering "event" of some sort, but there may be something else - like congential lyme - causing the symptoms. But this is just my totally uneducated personal opinion... You mentioned that the baby was sick a lot - what symptoms make you think PANDAS?

I'll post the text of the outline I did for my daughter's 504 below - and I didn't bring any other materials other than the dx letter. Keeping it short and sweet, and within the context of what the school can do is the way to go. We came in overly prepared for my son's IEP meeting 3 years ago and had a similar experience to smarty - but the 2nd meeting was better. I learned this time around. Hope this helps. 504 Outline Information Background Information: McKinley has been diagnosed with a medical condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus), also now being referred to as PANS. This condition is commonly referred to as “rheumatic fever of the brain”. When McKinley becomes ill or is exposed to certain bacteria, particularly strep, her immune system launches an inappropriate response against the basal ganglia in the brain, causing neurological impacts including tics, anxiety, ADHD and obsessive compulsive behavior. Other characteristics of PANDAS include frequent urination, loss of fine motor skills (particularly handwriting), and loss of previously mastered math or language skills. McKinley often shows limited signs of physical infection (fever, sore throat) but does exhibit other clinical symptoms (elevated heart rate, peri-oral pallor) making the neurological symptoms exhibited often the first sign of active infection. McKinley’s symptoms typically subside with 30 day treatment for the underlying infection, however they may resurface at any time, including with exposure to strep without contracting the infection. PANDAS/PANS is a chronic condition and it is not possible to predict with certainty how PANDAS/PANS is going to affect an individual in the future. The pattern of relapses and remissions varies greatly with each patient. Since the start of the school year, McKinley has already missed school 2 times related to strep infections, and had to leave early many others for doctors appointments. McKinley tends to display moderate anxiety symptoms as a result of PANDAS. She enjoys school, and is driven to please her teachers and friends. When in a PANDAS/PANS flare, McKinley is an OCD perfectionist. She will have increased anxiety about her ability to complete the work, often avoiding an assignment if she feels she cannot complete it without error. She can become overwhelmed making seemingly minor decisions with a fear that she will make a wrong choice. She often has other intrusive thoughts that may overwhelm her ability to focus on the task at hand. When in a flare, she often tends to become impulsive and will withdraw from class participation and interaction with her peers. Her anxiety at times will also physically manifest it self through the chewing of her fingers and hair. McKinley is currently under the care of the following doctors for the treatment of PANDAS: Dr. Robert Friedmeyer – Pediatrician, Tampa FL Dr. Tanya Murphy – Psychiatrist/PANDAS specialist – USF Rothman Center, St. Petersburg, FL Dr. Megan Toufexis – Psychiatrist – USF Rothman Center, St. Petersburg, FL Dr. Adam Lewin – Psychologist – USF Rothman Center, St. Petersburg, FL Dr. Jillian Childers – Psychologist - USF Rothman Center, St. Petersburg, FL McKinley currently takes a 30 day course of antibiotics when there is evidence of an active strep infection, along with probiotics and daily ibuprofen as needed to reduce inflammation in the brain. If there is increased risk of exposure to strep, McKinley may be put on a prophylactic course of antibiotics in 30 day intervals as needed. For more information on PANDAS: www.pandasresourcenetwork.com Accommodations: Accommodations that would benefit McKinley in the school setting (those marked with * are currently being implemented voluntarily by the school): Frequent wiping of her desk, chair and common areas with Lysol/Clorox wipes to avoid illness* Limited sharing of common supplies to avoid illness* Frequent use of hand sanitizer or hand washing (particularly after common activities) to avoid illness* Notification when there are high incidences of illness in the classroom, particularly strep* Notification when McKinley begins to exhibit unusual behavior in the classroom* Notification to parents in the classroom informing parents that there is a child with an autoimmune illness and to report illness, especially strep, to the school so the family can be notified. * As needed, allow McKinley frequent restroom breaks* Allow McKinley extended time to complete assignments as needed Modifying assignments to demonstrate mastery of a concept vs. repetition Extended time for standardized testing when applicable Allow the use of dictation or computer written assignments/assessments if grade is not dependent on penmanship Ability to perform homebound work in the instance of prolonged absence due to infection or chronic illness at the school

My daughter only uses cefdinir (omnicef) and we have great success with it. She takes full dose - but typically for only 30 days and she pulls out of a flare quickly. My son (who is a severe case) was on azith for 9 months with limited success, then switched to cefdinir (omnicef) for 11 months prior to switching to augmentin for 8 months to a combo augmentin/azith for 4 months, adding rifampin for 60 days (tested positive on combo), tried cipro for 30 days - but no back on Augmentin/azith/rifampin combo (second month on it this time around). My son has continued to test positive on abx, which is why we've had to keep rotating. The augmentin/azith/rifampin supercombo is the only thing he has not tested + on. We are headed for our first IVIG next week - so I'm not sure I'd use him as a good example!

My 5 year old is video game obsessed - particularly play-station. We have used it as a tool rather than a crutch. We have also had numerous discussions with our ped about the pros and cons, and he's indicated that more and more studies are saying that kids with autism like symptoms can actually BENEFIT from video games. Here were some of the things we came up with: Pros - it has DRASTICALLY improved his fine motor skills. This was a kid who refused to color because he was so far behind, now he's on par with his age. Cons - it does wholly engross him and is a fixation. Tough to get him to go do something else. Pros - it wholly engrosses - when in a bad flare, this can be a lifesaver!!! It can keep him from rages and fixations on things he can't control. Pros - we use it as an incentive. For example - getting dressed in the morning is always a big deal for us (sensory), he is not allowed to play video games in the AM until he is COMPLETELY ready for school - that means, dressed, socks and shoes (BIG deal), breakfast eaten, teeth brushed and all meds taken (even BIGGER deal). Some days it's not much of an incentive (when things are bad) - but we hold fast, have even put him on the bus kicking and screaming becuase he didn't get everything done in time to earn any VG time. This works for other high anxiety times of the day as well (ie meal times) - VG's get turned off until he does whatever task is at hand. So rather than restrict it (which I think would work for older kids) - we make him earn time. Pros - we used earning a handheld as an incentive for taking meds when this was at the height of anxiety for him (he would vomit at the thought - literally). He would earn a star for each med/supplement he had to take throughout the day. When he earned 200 stars, he could get his PS Vita. He was so proud of himself every day for overcoming his anxiety to earn his stars - it really was a good incentive. Pros - we have adapted "themes" from his favorite video games into everyday life to help with tasks. For example - every one of his supplements/meds are named after a weapon in his favorite game "Ratchet and Clank", it was a great learning excercise too, because we named each one based on what the medicine does for his PANDAS. For eample - rifampin = RYNO, the RYNO is the mega weapon that wipes out everything with one shot - the rifampin is the big guns hoping to wipe out his strep. The melatonin = cryotizer (freeze gun), because it "freezes" his brain to help him sleep. Motrin = Mr. Zurkon, the friendly robot that follows you killing bad guys as the pop up - but only if you need him to. Pros - he's learning, even when they're not educational games. It's helped alot with his reading and problem solving skills too. You should see him figure out a challenging level. He has even thought to ask us to google for tips to find things around the game (gold bolts, hidden items, etc...) And on a multiplayer game recently, he figured out a plan, splitting up tasks among the two of us to achieve the goal - and it was complex - something I wouldn't have expected out of a 5 year old (heck, I couldn't really figure it out myself!). And many of the games have a lot of text to read - far beyond 5 year old reading skills and comprehension - yet he does it no problem. For us - the video game fixations come and go. It's really only an issue when he's in a flare. We can tell things are starting to get better when he asks me or his sister to play with him, or offers her a turn entirely. When he's not in a flare, he'd rather be outside or playing something else - will go days/weeks without any video games. So we don't worry too much about it when he's in a bad place. It's a coping mechanism, and we allow it as best we can. We do try to force him to take turns on the TV with is sister, so she can watch some regular TV here or there (otherwise it's nothing but VG's) and that's a good CBT/ERP thing when he's bad, he has to wait til the timer dings before it's his turn again - live with the anxiety of it. It's tough - because it goes against everything we (DH and I) believe as parents, but we're not dealing with normal kids, so we have to abandon some of our ideas of how the world should work! Hope this helps.

Keep a behavior log. It will help you differentiate between PANDAS and just being 3. It helped us immensely when my then 2 yo presented with PANDAS (now 5). It also helped almost 2 years later when his older sister started showing much milder symptoms. We initially dismissed them as attention getting behaviors (all of our focus on her brother) - but the log helped us see a clear and distinct pattern - we ONLY had issues in the presence of a positive strep infection. If your ped will agree - abx is key, and also, I would try giving her motrin to help with symptoms. It really does work well with my kids. Sorry you're looking at a second one with issues - I know what a kick in the gut that feels like!

I think dcmom makes some good points. My son reacts to sugar - he turns into Beavis from Beavis and Butthead - to a T. But, while we limit his sugar intake at home - we allow him some moderation when he's out at parties/with friends. He's only 5, but we did have a discussion with him about how he reacts to sugar, and that's why he can't have too much. We make a big deal when he makes good, healthy snack choices at home. And now we find, more often than not - he heads straight for the fruit tray at parties, rather than the sweets. My son has eating issues related to his OCD - so it's often hard for us to restrict eating further, he hardly eats at all. But my 6 yo PANDAS daughter has taken lately to hoarding food, and hiding in the bathroom to eat things she thinks we are not going to let her have. Hubby and I talked about it this weekend, and realized that this behavior may be just PANDAS, but it may also be to us placing the same sugar limits on her as her brother (eventhough it's not necessary for her) - it's causing her to hide food and eat behind our backs. I think that is presenting a far bigger problem for the future. Like dcmom said - kids are kids, PANDAS or not. I have a friend who has a diabetic daughter who grew up with the dietary restrictions from infancy - yet it didn't stop her from testing her limits and making stupid choices as a pre-teen when mom wasn't looking. It's just part of growing up. As for the creepy guy in the rape van...yeah, my hubs would be camped out on our front porch with a shot gun every time the kids were out until that guy got the message - and our neighbors would all take shifts!!! Has anybody reported it to the police? I would totally file a suspicious activity report.

HLA-B27 is a genetic marker that plays a role in many autoimmune/inflammatory conditions - including Akylosing Spondylitis, uvitis and other spondyloarthopathies. I have AS myself - and carry the marker from my mother's side (she has uvitis, and 2 uncles had AS). Many of the symptoms of AS can overlap other things - including Lyme. The most common presnetation is pain and stiffness in the back and hips, but also includes fatigue as well as artritic symptoms in other joints and extremeties. Many docs misdx AS early on as RA or other types of arthritis, unfortunately AS is degenerative, and ultimately results in fusion of the joints in the spine and hips. While being + for the HLA-B27 marker does not automatically mean you have something like AS - many folks have the marker and are fine - 93% of the population that has AS carries the HLA-B27 gene. I have asked Murphy's team repeatedly if there could be a connection between HLA-B27 and PANDAS, but they don't think that there's any reason to suspect that at this point. As for ID's, we've only seen on for my son, she was referred to us through Murphy's group - so we expected her to be helpful at least. She wasn't a PANDAS naysayer - per se - but working with Murphy, that would be expected. However, she brought absolutely nothing to the table other than her desire to "get my son off of long-term abx". Yes - brilliant - that's why we're here - except every time he's off abx, he pops + for strep within a week, oh, and even full stretngh abx has not prevented him from getting strep. So what's your plan? "We want to get him off abx entirely". Ok, yes, you said that already, but do you have any clue as to WHY he's getting strep so much? Is it hiding elsewhere? "The first priority is to get him off the abx." After 3 appointments of this (during which time my son got strep AGAIN!!! while on abx). I finally felt that I was on some sort of sick twisted version of "Punk'd" and never went back.

We tried multiple times to take a break from abx from my son (has been on since Jan 2010) - it was never successful for us. We often either had a major backslide, or tested postitive again for strep - usually lasted less than 10 days off. Only once were we able to pull of a 5 week break in December 2010 - but he stopped sleeping during that time, and eventually tested positive for strep again. Good luck!

Hey there - just glazed through the responses - but I'll add a few things I haven't seen pop up yet: Omega 3 is a good supplement for inflammation. Dr. M at USF has cautioned against an O-3 supplement that has Omega 6 in it, as O-6 can actually cause inflammation in some people. My son responded well to azith at first too - but each time we initially tried to take him off, within 3 days all of his behaviors came flooding back. Unfortunately - that was 3 years ago. The longest we have ever been able to have him completely off abx has been 5 weeks, typically his symptoms return b/c of another strep infection. They have been chronic with us (even while on full strength abx.) You may want to have her next swab cultured for resistance - it can tell you if possibly the strain of strep she is dealing with is azith resistant - which we have found a couple of times here in FL. On the other end of the abx spectrum - my daughter (also PANDAS) clears completely with only a 30 day course of Cefdinir (allergic to pennicillin) and does not need to be on long term abx, but she has gotten strep a few times a year with her. We did T&A for both of my kids. My son met the ENT's criteria for chronic strep infections (7+ in 12 months was all he needed to see!), however, my daughter was like yours, and didn't. However, the ENT went ahead and removed them as a precaution against the PANDAS specifically. My daughter has gotten strep since, but only 2x, vs. the 3-4x per year prior. My son also has gotten strep since (5x), however his symptoms are less severe than prior to the T&A, and the 6 weeks post op (also on Augmentin) was the 1st time since onset he was 100% symptom free - no OCD or anything. We do CBT/ERP through the Rothman Center (they are local for us) - but we have not done the intensive program. For us, we used CBT first because my son was so young at onset (only 2). It was very important for us to be involved. A good portion of the initial therapy revolved around US and our reactions to his comulsions/anxieties. We learned that in younger kids, often times the compulsions relate to not something THEY need to do - but something the parent/caregiver needs to do in a specific manner, and we needed to learn how to handle that. It was helpful - but like others have said - during a flare, all bets were off. One trick we have used with my younger PANDA (now 5) - was we named his OCD. He calls it "Harvey". This allowed him to identify that some of the "bad" things he did were not because he was "bad" - but because his OCD "Harvey" told him to do it. My 6 yo PANDAS daughter has also adopted a vocabulary to tell us when her OCD is acting up - she'll say she's "stuck". Allowing them a vocabulary to verbalize what's been going on has been extremely powerful. For example, after a rifampin boost b/c of another pos strep infection (while on Augmentin AND azith - told you he's bad), my son asked if we could go to the ped - where he continued to say "When I was on the Ryno (rifampin), Harvey went away. He's back now that I don't take the Ryno anymore - can I have some more Ryno so he goes away again?" No lie - my ped and I both looked at each other with jaws on the floor - he had JUST had his 5th birthday - and he was articulating to his doctor his needs. The strep test that time came back -, but the doc refilled the rifampin b/c for the first time we had hard and fast feedback from my son himself (not just my reporting behvaiors) as to what was happening. Finally - if you don't already, keep a log or journal of her symptoms. I used a numerical scale (0-9) and kept a spreadsheet. Tracking the daily scores and trends helped us see improvement, what was/wasn't working, as well as how he reacted to exposure (strep in others but not him), as well as some key behaviors that were automatic "tells" that he would be positive for strep (ie - every time he wets the bed he's + for strep - like clockwork. Now, when he wets the bed, we don't wait - we go straight into the doc.) Hope some of this helps. I too wanted to get my kiddo off abx as quickly as humanly possible - and I found that it just didn't work for my son that way - so keep an open mind to what's working/what's not. Remember - many rheumatic fever patients are kept on full strength abx almost their entire lives...

I have to agree with JAG 10. Upon seeing the revised warning, I called our ped to discuss the risks. My son has been on azith since last June (combo with Augmentin and Rifampin thrown in for fun from time to time ) He also said that there this is a very rare complication that have other factors at play - none of which we feel my son is at risk for. He also said that if my son was likely to have problems - we would've seen them already. (He was on azith for 11 months in 2010 as well.) That being said - he is referring us for an EKG (my son has never had one), not because he has any of the listed risk factors (that we know of), but because my son is also on Vyvanse, a stimulant, for ADHD. Like other ADHD meds, it also can cause heart complications, and he felt that with him being on the combo - it's worth getting an EKG to be safe. If azith is working for your child, before pulling them off, I would look into getting an EKG to see if they are in the risk pool for the complication. Personally, I'd rather do the test than risk de-stablizing my child's progress by switching meds if there's no real need.

We've done it with Augmentin. Currently on the super combo of Aztih/Augmentin/Rifampin.

We had the whole family checked because of the kids issues. My hubby's came back high. He was treated with 30 days of abx.

My 5 year old has been swallowing pills for some time. Even the giant Augmentin horse pills. We initially used a cup called the Oralflo - you can find it on amazon. It's like a modified sippy cup that you drop the pill into and they drink it down. Worked great - and one day he just decided he wanted to do it on his own. Now he swallows multiple pills at a time. It's great because we can get longer rx's (suspensions only last 10 days), so I'm not hitting the pharmacy weekly. As long as the dosages work for you child. Mine is on Rifampin too - but he's too small for the min dosage that comes in the capsule - so they had to make it into a suspension for him, only med we have a problem getting into him - even though it tastes goood. He just doesn't like to do the liquids now that he can swallow pills.

I'll also throw out there, my son's onset was at 2, and he had 30 strep infections in the course of just about 3 years - similar to yours, however, 2 years in, we got a T&A. He continued to get strep post op. He is asymptomatic to strep - meaning outside of his very first infection (which started the madness) - he has never had a fever, sore throat, or any other symptom of strep. (He also has never had an elevated tire - just loads and loads of positive throat cultures). Even without tonisls - he still cultures positive for strep. With your son's history, it is possible that he continued to get strep post T&A. If you're already getting in to see PANDAS specialists - that's a great first step. However, if your ID is willing to start on abx of some sort, it might not be a bad call either. You may start seeing improvement while you're waiting for your appt with the specialists.

I try not to use too many abbreviations, but if you haven't caught it - there is a thread pinned to the top of the forums that defines some of the common abbreviations that are used. Might be helpful.

We've not seen any difference with the brands of azith. As for ibuprofen, we use it daily when in a bad spot. Our ped has indicated that as long as we don't exceed the recommended daily dose, it's safe for prolonged use. We usually give in the AM, and then redose after school if needed. If we don't redose after school but then find it's needed, we decide based on how long until bed time, if it's 1 1/2 hours or less, we try to ride it out. Dialted pupils - common symptoms in PANDAS kids in a flare.

A side note - what helped us determine we needed long term abx for my son was a detailed log that we kept. About 2 weeks after dx, when we started to see significant gains, we started logging his symptoms on a scale of 0-9. We graphed his progress, and while it was clear there were good days and bad days, there was a steady trend towards improvement. When ever we tried to take him off the abx, he was exposed to strep, or he got a new infection, there was a clear - double digit - increase in his symptom scores. This information really helped our ped maintain the abx, and it helped other specialists we saw understand what was happening. I suggest you start keeping a log or journal of some sort. We used a numerical scale because it was more objective and took the emotion out of it.

I have 2 PANDAS kids - and the answer to the question about their symptoms returning is different for each child. My daughter is a more mild case, caught quickly because her early asymptomatic strep infections were caught and treated b/c of her brother's PANDAS dx. Our ped always put her on at least 2 rounds of back to back abx (min 20 days) initally for her brother's sake. Because of that - after a single 30 day dose of abx, her symptoms do not return. We usually see her back to 100% about 2 weeks into the 30 day course. Our theory is that because she was treated immediately at first onset (although unknowingly b/c it took us 3 infections before we connected her symptoms to the strep) she's an easy case. Our son - not so much. Yes, his symptoms return after a 30 day course of abx. Our ped initially had us returning every 30 days for a ck in to see if we needed to renew. Each time we tried to discontinue abx, symptoms returned within 3 days. As such, he has been on abx almost continuously since January 2010. Unfortuntetly, it has not prevented him from getting multiple strep infections (positive cultures) while on abx. He has gotten to about 85-90% back to normal with abx alone, reached 100% after T&A (still on abx), until 6 weeks post op when he got strep again. YAY!! After 3 years, he is now heading to IVIG the first week in April. With him, it was about 9 months between the infection that triggered onset and his dx. The infection was treated at the time with a standard course of abx, and the behavior changes triggered suddenly one day about a week or two after he finished abx. Because he was so young (only 20 months at the time), we initially attributed his behavior change to the "terrible twos" - but as things progressed and escalated, it was obvious something else was wrong. We got him dx after his day care suggested that we take him to get evaluated b/c something was not right (the directors exact words were "this is not your son - I don't know who he is, but he's not your kid.") Luckily for us, our ped knew about PANDAS, saw that the timeline fit from our initial reports to him about behavior escalating (fortunately I had emailed him within days of his behavior changes asking for tips so he had the date of the sudden onset and could trace it back to a confirmed infection). Now, we see two PANDAS docs - one a neuropsych here in Florida Dr. M (she's more of a researcher, but an expert none the less), and we travel to CT to see an immunologist - Dr. B (that's who will be doing the IVIG). Our ped is still our lifeline, and our rx for abx usually have 3 refills, but he will often refill by phone with just an email or phone call touching base on progress. Honestly - I'm usually in his office before the refills are up anyway for a strep check on one or both of the kids, my son just gets it so often. (Although the T&A has helped) Unfortunately, with PANDAS, it's not one size fits all. Also, something to note, is that some kids respond differently to different abx. For some, azith has been all they need, others cycle through various abx before they find the one that works. As for the neurologist you're seeing, I would ck the thread pinned at the top of this forum for helpful docs to see if they're on that list, also look at the PANDAS Resource Network and Saving Sammy websites to see if that doc is listed there. Many folks often are told that the doc they are schedule with sees PANDAS patients - only to find out that the doc sees PANDAS patients simply to tell them that they don't believe in PANDAS and push another dx. We've been fortunate to not have that experience, Dr. M is local to us and is affliated with the major university in our area, so there seem to be more docs familiar with it than most in my area.

Our pediatrician dx our son with PANDAS at a young age. We too never had any elevated titers (still don't) but symptoms started after a documented strep infection - so the pieces fit. He started us with a 30 trial of abx. For us, we started to see a change after 7 days, but real improvement after 10-14 days. For many kids, a typical 7-10 day course of abx is just not enough. My daughter was dx with PANDAS almost 2 years after my son - because she never had an untreated strep infection (we always get the whole family tested when my son flares, and she often tested positive with no physical symptoms), she clears within a few days of a course of abx, however our ped still gives her at least 30 days. While nickelmama is right - many don't get help from their local peds, if you have a ped that is open-minded and willing to learn, keep them on board. Our ped has been our lifeline, and while we do see PANDAS specialists - it's nice to have the local doc be available when the need arises. When we first started on our journey, our ped had also only treated a couple of kids for PANDAS, and my son turned out to be his most complex case, but he has learned so much from working with our specialists, and has been focused on helping our children that he is now one of the "goto" docs in our area/state. Both specialists that we work with often ask what our ped has said last time he saw our son because they have admired his approach to treatment. My daughter only had 2 appointments with the specialist because her case was so mild - we were told they didn't need to treat her because our ped had it handled, so unless something changed for the worse or our ped needed help - we didn't need to come back. He too made us bring in our son for each abx refill in the beginning - he wanted to be able to track progress and see what was happening. While it seemed like an inconvenience at the time - it really was helpful because it allowed him to see the various changes in behaviors and how my son progressed. I wouldn't automatically consider your ped wanting to see your daughter again for a refill as being a negative thing - it wasn't at all in our case. I'm not saying you want to be a guinea pig for your ped - and getting a specialist on board will help immensely - but all to often we throw away our local docs if they don't immediately "get it" - even if they are willing to learn, and I fear that it doesn't help our ultimate goal to get more medical professionals on board to help our children.

Don't know about the ENT in Philly - but ours took out both of my PANDAS kids tonsils - my daughter's b/c of PANDAS only (didn't have as many strep infections as they ususally "like" to do a T&A). He did the abx protocol - before-during-after, although he only gave 7 days abx post (our ped and Dr. M extended that for my son, thankfully!!) His name is Dr. Wade Cressman, this is the website. I know Dr. T has a detailed protocol that he tells his patients to request for T&A - but I don't know what it is.

Yay!!! We took the kids camping this weekend (and it was very cold by Tampa standards!) just to force my son out of the house and off of his video games (he did manage to sneak his PS Vita into the car - but he managed to play outside some.) It was a small victory - like yours, but those are the ones that are so much more valuable!!

I'd just like to shre with you that our son's story is very similar to yours. He was developing normally - far ahead of the curve than other children his age. After a strep infection, he also regressed verbally. He started having violent rages and tantrums as well. It was beyond what is age appropriate. When we had him evaluated, the pediatrician said that he met many of the standard criteria for autism - however, because he had been developing better than average prior to that - it couldn't be traditional autism and suggested PANDAS. My son started antibiotics that day - within 2 weeks we saw a significant difference. He is now 5, and while he still has issues - he no longer shows any signs of autism and is even being tested for the gifted program for his Kindergarten. It sounds like you did have some infectious thing at work (either bacterial or viral) that could be the culprit. I think you're on the right track looking at a PANS diagnosis. Powodzenia!