airial95

If he does say we're taking them out, I know to ask for abx before, during and after the surgery. But I'm curious if there's anything in particular I should be asking about as it relates to if we should have it done or not? When I asked Dr. Muphy about it last year, she said the resarch was a bit all over the place (about 50/50) and it's not really a "cure" for PANDAS, so she wouldn't recommend it unless there's another reason for it (chronic infection). Our pediatrician was of the same mid set, but a little bit more open. With this last strep infection a couple of weeks ago, that makes 7-8 postivie cultures in 21 months - our pediatrician sent us off to the ENT thinking it makes sense to get rid of them. We saw the immunologist for the first time last week too. She said that it's likely he will need them out in the future, but she didn't see the need right now, and since there's only a 50/50 shot of it helping the PANDAS, it's something we need to decide after we consult with the ENT. I'm of the midset - if it has even a 50% chance of helping, 50% is better than 0%. Those are decent odds. I know some folks have mentioned that their kids have gotten WORSE after the surgery, but I don't think they had the abx protection that I would insist on in order to agree to it. Thoughts on things I should ask?

I'm sorry that you're dealing with so much, with your husband too. Our thoughts and prayers are with you. My son's tics do "morph" over time. He seems to rotate between 3-4 familiar tics that we've seen, alwyas only having 1 at a time. I don't know what makes one of his tics more prevalent than the other, but one usually fades out as another sets in. I don't know if others have had the same experience, but we have seen the same thing you have as far as one tic replacing another.

Thank you all for the support. It means slot. It's different to suspect, with the small hope you're wrong. Thank you all.

We have suspected in the past that our 5 yo daughter be mild PANDAS, she does get very hyper-sensitive to things (especially her brother touching things) when she's sick, but she always goes back to normal once the infection clears. She's always been a very sensitive child (a drama queen if you will - the world revolves around her and she lets you know it!!), but at times she over-reacts, even by her standards. I mentioned the possibility to our awsome PANDAS friendly pediatrician about a year ago, and he mentioned that often parents of very sick kids start to project symptoms onto their healthy children because they're over-vigilant. (I think we can all relate...we see PANDAS everywhere!!) My husband agreed with the Dr that I was seeing things. We started taking notes though, and at that point, eventually I reluctantly agreed there was a possibility I might be overreacting. In February, she tested positive for strep with no symptoms (we swabbed her b/c our PANDAS son was positive). We noticed the hypersensitivity again, some seperation anxieity, espcially at pre-K and my hubby and I both started to think maybe there's something to this...after a 10 day course of abx - she was fine. (Which is NOT the case with our son) In July, she told us one day that her throat "tickled" (didn't hurt, just tickled). Sure enough positive culture - this time, she wet the bed, only once, but at the time she had strep, and she hasn't done this since she first came out of pull-ups at 2 1/2. Also, the same hyper-senstivity to anything that went wrong. Now, my husband was more convinced - as was I. At this time, she also started to get a loose tooth. I know symptoms flare with that, so this was even one more piece to the puzzle that she may may have it too. My PANDAS son got strep (again) a couple of weeks ago. For the first time, we haven't seen any improvement on the abx. We ALWAYS get her (and us for that matter) tested when our son comes up positive. For some reason, this time we didn't. (I have no idea why - it wasn't until we realized she might have strep that we realized we didn't have her checked!) In the meantime, we started to notice our daughter was becoming hyper-sensitive again. On Saturday morning, my son was wigging out over breakfast (common when he's in an episode) and my daughter started wigging out because her brother touched her chair. She couldn't sit in that chair now, and she couldn't eat her breakfast. Having them both freaking out at the same time convinced my husband beyond a doubt she was PANDAS. We gave them BOTH a dose of motrin. It worked like a charm on my daughter. Yesterday she was a sobbing mess the whole time at the bus stop because I had already left for work. That sealed the deal for us. I went into the pediatrician yesterday after school to have her tested, and have my sons abx extended since he's not doing well. I was prepared to fight with him about the fact that she IS PANDAS, and I was going through why we thought it as he was examining her. He didn't say much. He did a throat culture, even though he didn't see any other signs of strep, just to be sure (no elevated heart rate, enlarged tonsils, etc...). As we waited for the culture, he examined my son and we kept talking. He wasn't saying here or there whether he agreed with me, but I did mentioned Dr. Murphy's assertions that it is common in siblings. When he looked at the culture, the look on his face was pure shock. She was positive. He said that based on her last three asymptomatic infections, and the descriptions I was giving him of her behavior this past week, and in the past, he no longer has any more doubts...he thinks we're dealing with PANDAS in her as well. I'm not crazy. He gave her a 30 day rx, and suggested that at our next appt with Murphy we see if we can get her in too. Now, I have suspected this for a while, I've posted about this on the forums before. So why does it feel like I just got punched in the stomach? Is it terrible that I'd prefer to be seen as some crazy mom sho sees PANDAS everywhere than actually be right and have to deal with it in BOTH of my kids?? She pitched a hissy about school this morning, didn't want to go to the bus stop, even if I took her (taking the bus has been her favorite part of Kindergarten so far). I ended up keeping her home with me because she was so freaked out (and technically, she hasn't been on abx for 24 hours...but it's a catch 22. I want to keep her out until she's "safe" to go back, but that just feeds the school refusal and seperation anxiety...the dilemma of all PANDAS parents I guess!) Ironically, I called last week to set up a meeting with her school to discuss getting notified of strep in her class because of my son...I guess I'll be changing the agenda of that meeting a bit!!! Last night I just cried after they went to bed. My husband kept reminding me that it could be worse...there are kids out there suffering with far worse than what our kids have, and we've done a good job of handling it so far, we'll just have to keep on keepin' on. To make matters worse, my mom called, and just like she (initially) did with our son, she said that there's nothing wrong with my daughter, all kids behave differently when they're sick. She's fine, stop making a big deal of it. I reminded her that she said the same thing about my son until the day she had him running naked through her house peeing all over the place...but it didn't matter. I eventually just had to get off the phone because the last thing I needed was her lack of understanding. (My favorite line - "When your uncle was here from Spain (he's a well known geneticist) he said that he didn't see anything wrong with Broderick at all, he looked fine." DUH!!! Of course he did, he didn't have strep then!!!) At this point, I've rambled so long, I'm not sure what I'm even venting about anymore. I'ts just been a rough couple of weeks...

We handle things similarly to dcmom. We try to keep a healthy lifestyle, while not trying to go too overboard on hand washing/sanitizing etc...so as not to create an OCD monster. We also try to encourage as much of a normal social life as possible. Birthday parties, outings, etc. Does everything always go to plan? No, not at all. Are we more careful? yes always. Our close friends are aware of what is going on, and have often cancelled outings with us at the last minute because one of their kids is sick, has strep (but is already on abx), etc. They always notify us and give us the choice to participate or not. They are also very understanding if we back out of something at the last minute.

I would try a different antibiotic. Many have had luck augmenting, we've used cefdinir(Omnicef) and azithromycin with success. If your doctor is willing to try various hints, I would push for a different antibiotic before psych meds.

I have a right arm, and a left I'd like to offer for a year remission . We are an abx only family. Our son comes back almost 100% with abx, it's the recurring infections that are a problem. He has no immune deficiencies either. I'm with Vickie, I would go to your ped, get a throat culture and titres run to see if there is/was a recent infection. And get abx!!!

I also echo Mathis post. Our son was 20 months at onset and 26 months at dx. He was speaking in full sentences at 15 months, and regressed verbally significantly after onset. Because it was so sudden and so drastic of a regression, our ped doubted autism, but did suspect that we may see Aspbergers (can't confirm til they're older though). My son will be 4 next month, and we're struggling more with preventing strep than anything, but he also shows no signs of ASD at all with nothing but abx.

We're patients of dr Murphy's as well, we're in the Tampa area. She does prefer Omnicef as her abx of choice, but she'll use something else if he can't have it. For our initial consult, it only took 2 weeks tonget the appointment, so hopefully it will be quick for you as well. We were also going tom therapy there, and it was very helpful. Her office also just referred us to immunologynas well, and the immunologist she recommended was very PANDAS knowledgeable as well. I'm not sure where you are in Fl, but we also have a very PANDAS friendly pediatrician whom will prescribe abx based on PANDAS symptoms, even with a negative culture. In the meantime, try giving him some ibuprofen. It can help reduce the inflammation to the brain and can offer some relief of symptoms. It's a miracle drug for us!

We have the exact same scenario - 8 positive cultures, never a rise in titres and annoyingly normal immune panels. We went to the immunologist yesterday for the first time ton see what the he'll was up. She was referred to us by Dr Murphy's office and was AWeSOME! My son is in full flare right now and was in rare form (the type of thing you want when you're in a skeptics office!). She understood PANDAS, and described my sons situation this way: his immune system is functioning normally, he mounts a proper response to strep, and since it's doing it's job, you won't necessarily see a rise in titres, the problem is that the strep antibodies he produces are "defective" in some way, which is why they misdirect to the brain. Unfortunately, there's no test for defective antibodies, just if you're not producing enough or too many. She said his immune system looks great, we're "just" dealing with PANDAs ( that's a pretty big "just" if you ask me). At this point she's indicating that we might need tonsils out in the future (ped just recommended that last week, so we see the ENT next week). It made sense to me when she was explaining it, I'm sure I didn't donut justice here.

This is a struggle we deal with regularly, and the truth of the matter is, your gut instinct is the best way to tell. Our son was around 20 months old when he woke up one day suddenly the spawn of Satan. It was so sudden, we all made jokes that someone must have slipped him "the memo" that his terrible twos have arrived! All of his initial symptoms, the speration anxiety, tantrums, aggression, particular about food were ALL developmentally appropriate. We struggled for 6 months letting everyone convince us that it was the terrible 2's and that boys are just "harder" (we didn't have issues like this with my daughter). He'll be 4 next month, and we still second guess normal vs pandas. Looking back, it seems so obvious now, but we still struggle as his symptoms change - and they do, as he becomes more aware and verbal, the aggression has subsided somewhat and he's more verbal about what's wrong (not that it can always be fixed, and there's still tantrums...they're just more verbal.). We started looking at it on a scale of 0-9. For example, several of his issues revolve around food. His food has to be on his plate in a particular way, most 4 year olds don't like their food "touching" so no biggie right? A "normal" kids reaction to his food touching might be on a scale of 0-3, no big deal, or a little upset but they get over it, especially if you fix the problem (3 being a particularly challenging "normal" child. A 4-6 might be an extended tantrum, even if you fix the problem, lasting well over a "normal" tantrum, even if you ignore it, don't give attention, etc. This is already NOT normal. This is where my son "lives" when he's exposed to strep or coming down from an episode. A 7-9 is full blown "crazy" as we call it (not quite PC I know, but hey) - complete refusal to eat from that plate, the food needs to be thrown away, and in the cases of a 9, won't eat even a brand new plate of food offered to him. These are the rages that usually turn violent (although we see some in the 4-6 range) and can last until he just passes out from sheer exhaustion. Basically, for the younger set, a lot of the symptoms are developmentally age appropriate behaviors, just jacked up on steroids with a red bull chaser. We describe his hyperactivity as equivalent to freebasing pixie sticks. Simple things like bedwetting is questionable in our kids, many folks would say lots ofm4 year olds wet the bed occasionally. And that's true, but you know your kids best, and in our case, our son never wets the bed...ever. Every time he starts wetting the bed, he has tested positive for strep ( it's been one of our most reliable markers since he's asymptomatic) I would start logging some of her more quirky behaviors, be honest and see where you'd rate her. (PM me if you want a copy of the spreadsheet we used to do this). Compare her reaction (and how you handle it) compared to how a friends child would react in the same situation. We struggled at first because we found ourselves doing all sorts of jumping through hoops to prevent tantrums, so we had to stop so we could really evaluate. I'm sorry that you're going through this, but it does sound to me like a case of PANDAS. It's tough on all the families here, but it is especially tough for the younger ones where their behavior changes aren't as clear cut. I think that's why so many kids are missed early on, because it can look like "normal" behavior. Good luck, and we're all here for you! (typed on my iPad, so please forgive the typos!)

Baylor, My son had symptoms for over 6 months before we sought treatment as well. Don't beat yourself up. We let everyone convince us it was just the "Terrible 2's" and that "boys are harder than girls" and the like. Deep down, we knew in our guts something was wrong. And the same day we went into our pediatrician, we were dx. (Our pediatrician took the apporach - I can refer you to a ped. psych, but they're going to drug your kid, or we can try 30 days of abx for this weird thing called PANDAS and see what happens, he had impetigo right before you started having problems - worst case, we're no worse off than where we are now. I'm VERY thankful for what we came to call the "spaghetti diagnosis" - throw it against the wall and see what sticks!) Our son is now almost 2 years into his journey, and it hasn't always been easy for us, but I can say that so far abx alone has gotten us back to almost 90% at times (chronic re-infection - even on full strength abx is our battle). We know he can come out of it - if we can only keep him from getting strep in the first place...I probably wouldn't be hanging around here as much!! After our dx, it took us around 9 months to get a full team of doctors together - the pediatrician, behavior therapist, specialist and neurologist. A side note - our neurologist is somewhat skeptical of PANDAS - he believes there's something to it, but is of the mind you HAVE to have elevated titres for it to be PANDAS (which my son has never had - even with postivie cultures). He doesn't disagree with our current treatment approach, since my son clinically has had documented strep, but I actually like having the silent skeptic on our team - it keeps us from forcing symptoms to fit the PANDAS dx that may be an indicator of something else (PANDAS aside). Good luck!!

I think everyone agrees you need a specialist on board, and shoot for appointments with both of them, and see which pops up first. (Getting on the cancellation list is key - I've done it with our neurologist and immunologist and cut the wait time down from 3-6 months to a couple of weeks - you just need to be able to go on a day's notice.) Having said that, I would also echo what dcmom said, especially about having a doc to get to quickly. If you have a good relationship with your pediatrician, I would try to work on getting them on board. Even if they're not 100% there, if they're willing to work with the other specialists, it's always handy to have someone close by. An open-mind is the first step. Our pediatrician had treated about a half dozen cases before he dx our son. After 6 months, he admitted our son was the most complex case he'd dealt with, and recommended we see a specialist (right now, we see Dr. Murphy - she's local for us). Even though she confirmed the dx and has helped, our pediatrician is still our first line of defense when we see things flare up. We've had our son in his office within hours of radical changes for rapid swabs (usually positive!!) and an immediate change/renewal of our abx without having to wait on the specialists. I know we're a rarity with an understanding pediatrician, but having that quick response for us has been really helpful. So if your pediatrician (or another pediatrician) is willing to at least be open to the options, it really can be useful.

I also read that some kids have problems with the fish oil based supplements. Our son takes Genesis Today chews. They're like orange starbust, and don't taste too bad. They only have 100 mg O3 in them and he's supposed to have 350mg per day. We also supplement a lot with diet, his regular multivitamin also has 35mg of O3 (not much but hey...we take it whereever we can) Voortman makes a line of cookies with flaxseed in them that have 500 - 750 mg of O3 per cookie (our son likes the oatmeal with 750mg. He thinks he's being sneaky when he eats them, little does he know, we leave them within his reach on purpose!) You might also want to check the label on the new supplement, if it has Omega-6, that might be the problem. Dr. Murphy cautioned us when she recommended the O-3 to check for Omega 6 becaue it may actually cause inflammation. Just a thought! Good luck!!

If inflammation is a problem for your son, I would recommend ibuprofen. It works well for many of the children here. Some folks do a regular dosing (but you have to be careful because it's tough on the liver). We use it sparingly. Only when he's really bad, or sometimes we will do a "preventative" dose if there's something going on (birthday party, family gathering, etc...) It has worked for us. Another thing you might want to try, which was recommended by our PANDAS specialist (Dr. Murphy in FLA) is Omega 3. It's anti-inflammatory. Some folks here have reported having problems with the fish oil based O3, but we haven't seen that. Dr. Murphy did advise us to read the labels carefully on any supplements, because some of them can contain Omega-6, which may actually cause inflammation. We try to give him an O-3 rich diet as well. Sorry you're going through this, but welcome to the forums!!! There are a lot of great folks here who are always willing to help, or just lend a sympathic ear!!

We were originally on azith (don't remember the dosage now) but he was getting strep on that at full dose. We now are doing Cefdinir - 250 mg once a day (he's only 32 lbs, a little guy). We had success with both abx, although our experiences with each were a bit different. On the azith, it was a more extreme wax/waning pattern. We saw long periods of solid improvement (days, even as long as a couple of weeks with hadrly a symptom). But when his syptoms would ramp up again they were extreme. He is very sensitive to exposure, and most of his "flares" would happen when he was exposed to strep. After catching strep 3 time while on azith (2x at proph dose and 1x on full), we switched to Cefdinir. Again, we saw significant improvment, however, with the Cefdir, we weren't getting those long, calm stretches. But his symptoms were war less severe when he did have them. On the cefdinir, we no longer had any really dysfunctional days (you know, the kind where you just can't leave the house), but we did have some symptoms present every day (albeit very mild and manageable, this is when the CBT really became useful for us). For us, both abx worked, but in a different way. At first, I missed the long stretches of calm that the azith gave us, but I appreciate more the fact that we're a consistently functioning family on the cefdinir, even if we've topped out at 85% back to normal (for now.)

We see Dr. Murphy as our specialist (she's local for us), and she recommended my son be on Omega 3 supplements since they are anti-inflammatory. She noted though, to look at which supplements we give him because Omega 6 can actually cause inflammation, and some O-3 supplements have both. Also, I know that some parents here have had issues with fish-oil based O-3, we haven't, but I remember it being mentioned on here before. We also try to feed him a diet rich with O-3 fortified foods to help as well. Voortman actually makes a flaxseed cookie that has 750 mg O-3 per cookie. My son loves them, and we leave them within reach, we often see him "sneaking" a cookie when he knows we otherwise wouldn't let him. What he doesn't know, is that we actually WANT him to be eating those, even if it's before dinner!!

I would suggest tracking her progress. Until I started writing down my son's symptoms and recording it, I wasn't seeing improvement that was actually there. I think it's because I was too emotionally involved. If I would see him tic once, it broke my heart just as much as seeing him do it 10 times, so I wasn't noticing that he was only ticcing half the time as when he started the abx. I also agree with what has also been said - ibuprofen does help some kids symptoms - it's our miracle drug. Also, it may take time to find the right abx for your daughter. We've been on both azithrimicin and cefdinir. We saw improvements on both, but in different ways. On the azithromicin, we saw more full recovery, but when symptoms came back, they were severe. With the cefdinir, we don't get as many symptom free days, but the symptoms we do see, even when he flares are far more manageable. What I'm trying to say, is each child reacts to the abx differently. You may need to shop around for one that works well for your daughter. Good luck!!

Hoarding has totally been one of our issues!!! But I'm not sure that's what this is. I started to try to talk to him about why he's going in his room. At first the only answers I could get was because he had to. (He's not quite 4 - so I'm not sure what I was expecting). Well, while he was in the bathtub last night (after he peed in his room again!)We were talking about trying harder to get to the potty, etc. and I asked again why he goes in his room. He told me it was because when he has to go and he's in there, he doesn't think he can make it to the potty so he just goes. (The fact that his bedroom is right next to the bathroom doesn't seem to matter). This was actually a bit of a clue for us. Until he said this, I hadn't noticed, if he's in any other room in the house when he has to go potty, he goes to the bathroom with no problems. It's only if he's already in his bedroom that he'll go in there. Now, I have no idea why - or what the issue is, but at least it's a start! But thank you all for your advice and support, if it wasn't for you guys, I wouldn't have thought that it might be something he was avoiding or thought to ask him why!! Thanks so much!!!

I agree with Nancy on bringing a second person. We did this to all of our IEP meetings thus far and it helped. I'm usually the strong one - a force to be reckoned with (especially when it comes to my kids), but I got so worked up at our first IEP meeting (and emotional), that my husband was the one who ended up picking up the slack for me. At our second meeting, we brought a friend who has a PhD in special education (she's was also the director of our day care so she knew my son's issues first hand). She was AWESOME. We found at our first meeting that they use an entirely different language! I was so hot at the first one I actually had to point out to one of the women who kept talking in educational lingo and jargon that between my hubby and me there were 3 bachelors, 2 masters and a candidacy for a PhD and we couldn't understand a darn word she said!!! So having the impartial set of ears was crucial. They can also provide an alternative interpretation to what was discussed that isn't so emotional. Some of our son's accomodations include a "thinking chair" in the classroom. It's a quiet corner he can go when things become overwhelming or he becomes worked up. It has worked for the rages as well (the few times he's had them since starting in this school.) Right now, he's in a special ed room, but he's still in pre-K. We want to keep him there until he starts K, and then we'll mainstream him. He's not developmentally delayed, it's all behavior, like many other folks here. Another accomodation we have (if your pediatrician is willing) is a written order from our doctor to give him motrin in times of extreme stress. The school hasn't had to resort to it (since he's in the special ed room and they're equipt to deal with these things), but day care has a few times (and they're always amazed at the effect). We also have things related to keeping him healthy - use of hand sanitizer, limited sharing of supplies (tough in the pre-K classroom), a personal water bottle to avoid the drinking fountain, things like that. Good luck! Glad to hear that some of the pieces are finally coming together for you!

Philly - so sorry to hear about what your brother went through!! We're not planning on "bringing it up" with our kids, but I know with more and more discussion about it, and church on Sunday (which my children HATE to miss church) we want to be prepared with questions. We DVR'd the special (it's a half hour) for two reasons, one, we thought it would give us useful ideas on how to explain things to a child (that's what it's for after all) and also for the possibility of my daughter watching it. But we totally only plan on that if they start asking questions. I just thought it was an interesting discussion considering how our kids' brains operate. And dcmom- you're totally right - who knows WHAT they're going to fixate on, we really can't protect them all the time.

We DVR'd the NickNews special last week covering the events of 9/11 that is geared towards kids 6-11. Our daughter (not dx PANDAS, but may be mild) is 5 1/2, and PANDAS son is 4, and both are very advanced for their age, and always asking questions. We haven't watched it yet (my husband and I want to watch it first alone to see if we should let either of them watch it), but with the anniversary this weekend, coverage seems to be everywhere, and we want to be ready to answer questions if they pop up. Our church is also doing a special service on Sunday, which I know will have both of my kids asking questions (we're still debating not bringing them.) Our kids are still a bit young, but it got me to thinking, how are other PANDAS parents handling it? Many of our PANDAS kids weren't born yet, and how do you introduce a topic like this to a group of children who are prone to fixate on fears - both rational and irrational? I'm sure many of the schools will be talking about it this week as well.

My 5 year old spins all the time...but we've always known she was a bit weird Anyway, sorry you're dealing with this. I agree with most of what was said above (especialy the ibuprofen - it's a wonder drug for us!), and will add just a few things. - The charting/logging is essential to helping get good treatment. You can track what abx may or may not be working, or see if there's something else that may be triggering a certain behavior. A parent on this forum named Buster came up with a methodology of rating symptoms (it might be in the pinned threads section). I've taken his methodology and put it into an excel format that will actually chart symptoms. PM me with your email address if you'd like a copy. It helped us immensely on our doctor searches because they were able to see clearly the patterns we were talking about. - I agree with seeing a specialist right away - it will help you in the long run. What I would also say, however, is that if your pediatrician is a PANDAS believer, even if he's not that knowledgable, if he's open to learning and listening to what the specialists have to say - I would consider keeping him as an integral part of the team. We see a PANDAS specialist (we're lucky - we have one local), but our PANDAS friendly pediatrician has really been our lifeline. He readily admits he's not the most knowledgeable, and there's alot unknown, but he's willilng to listen and try things - as long as he doesn't think they'll cause greater harm. It's wonderful to be able to come in on a moments notice for a strep test, or questions, or just to have that quick response you don't always get from the specialists. I know I'm one of the lucky ones with a great ped, but it is nice not to be looked at like a freak show when I come in and ask for an appointment because my 3 year old is "hopping and clapping". Also - if every parent runs screaming from their pediatricians that are willing to learn just because they're not completely up to speed - these folks wil never learn and more kids will have trouble getting help. I'm not saying let our kids be the guinea pigs, but a pediatrician with an active PANDAS patient in his practice is more likely to be looking out for new information (good or bad) because it's relevant, than if they aren't currently seeing anyone. Okay - sorry - that was my personal soap box for a minute. I'm done. - My dx PANDAS son (and my daughter- not dx PANDAS, but we suspect may be mild) are both typically asymptomatic to strep. My son has had 8 postivie throat cultures, 6-9 impetigo infections (we didn't always go in for those) and at least 2 strep infections in the nasal cavities in 20 months. He never had a fever once, and only once had some flu-like symptoms where he vomitted. That's 16 infections in a year an a half and no typical signs of infection. Our pediatrician also advises us to use a topical abx (muciroprin, altabax, etc) applied lightly int he nasal cavitiy 2x a day for several days when we start to see a mild symptom flare. Strep likes to hang out there, and the cultures can't always detect that - and if your kid (like mine) doesn't get strep the normal way... the only way to tell is behavioral. Our son has never had an elevated titre as well...so don't let bloodwork or absence of "normal" symptoms be a defning factor in getting treatment. - since you have a younger guy too - something that has helped us immensely has been a sensory swing. It's a tool used in OT for autistic children or kids with sensory issues. It's like a lycra hammock that hangs from the ceiling from a single hook. (I found one on e-bay). It has been a miracle for our son. It calms the anxiety INSTANTLY when he gets in. How we survived almost a year before we had that is beyond me. But it has calmed even the most intense of tantrums. I hope some of this helps, and know that you've found a very good support group here if you need it!!

Our son is younger still, he'll be 4 next month. Most parents of "normal" kids would say it's common for kids that age to still have an accident now and again - especially at night. My kid does NOT have accidents - especially at night - if he's not dealing with strep or an exacerbation. We keep doubting this fact ourselves. This most recent positive culture (last Monday), we saw 4-5 bedwetting episodes in the previous 2 weeks but dismissed a few because of summertime fun (babysitter letting him drink right up until bedtime, backyard barbques where he drank more than normal, etc...) After an especially hyper weekend and overnight accident again, we took him in and - BAM - postive culture. (we did do a home test on him in the 2 weeks preceeding - but it was negative. I'm fairly certain I didn't get a good swab though - what can I say - I'm a rookie at that.) Since the positve culture, he's had 2 more accidents in bed. We actually finally got him a new mattress because his old one was well...getting kinda gross. This time around, however, he's added some new twists. Twice this week (that we knowe of) he's peed in his room, on the floor. Just randomly. We find out by him casually saying something to the effect of "if someone finds my pee pee in my room I'll get very angry". Which then sends me on a pee-hunt of his bedroom. I have no idea if he's done this more than the 2 times we know about...I just know that I'll be steam cleaning his carpet this weekend. On Sunday night, while we were swimming, he swam over to the steps, and sat down. My hubby noticed it looked like he was taking a poop - so he asked him. He said no, but my husband went over there anyway, and sure enough... That was a new one even for us!!! I'm sure this is probably all TMI, but we're really not sure what to do about this anymore. If we remind him that he has to use the toilet, he gets all defensive and angry. He's been out of diapers and pull-ups since he was around 20 months old or so, so I'm not sure we want to go back to that - even at night, becuase I'm afraid that will send him the wrong message -PANDAS aside. Also, I'm not sure that would help with the random pee locations, since he's already pulling his pants down for that (when we can get him to wear pants...but that's another post!) Has anyone else dealt with these types of issues to this level? I'm sure others have dealt with the nighttime issues - and any suggestions would be helpful. (we already use 2 mattress covers - sometimes it doesn't help.) But what about the urinating (and now defacating?) anywhere but the bathroom?? There was also a odd puddle in our dining room this past weekend that we had assumed was one of the dogs...we're second guessing that assumption now! I wonder how many other times we've blamed the dogs for something tha was actually my son's doing!! (I'm trying to find some humor in this...if not, I think I'll lose it!!!)

I hadn't seen that website - it's great!! Thanks for sharing