airial95

My son is only 3, so we always have the fun experience of trying to figure out what might be symptomatic vs just normal 3 year old behavior. Most often, we have to wait for symptoms to be present for several days/weeks before we can even figure it out. (For example, we started making weird "noises" - like fake one syllable words - always the same. Is this a new tic, or is it just the phase where the kids like to speak their own "language" - my healthy daughter went through that too...don't know, only time will tell!!) Here's the issue, my son seems to be exhibiting new fears. When my daughter was this age, she would often call us into her bedroom at night or naptime and say she was scared. When we'd ask her of what, she would look around the room and try to make something up, since she obviously wasn't scared and just wanted Mommy and Daddy's attention to try to stay up later. She never even acted really scared either - it was all about the attention. My son has started doing something similar, but it's not at any predictable time, it's far more random. (at home, school, in the car, outside playing) He also seems to really show fear, he has a physical reaction that is noticable (which my daughter never had). When we ask him what's wrong, why he's scard, he can't figure it out, so he'll repeat that he's scared a few more times, and then once we've calmed him a bit, he'll look around and make up something random that scared him (the tree, the light bulb). This has been going on off and on for a couple of months now, and I'm beginning to question if it might be OCD, and not the attention getter it was for my daughter. Could it be he's really having fears, but just can't figure out what's he's afraid of, or can't verbalize it so after he's calmed he just makes something up? I'm trying to figure it out. He's not had any major meltdowns as a result of this yet, but there have been tears and crying - but we're usually able to comfort him with hugs and such. Any thoughts?

My son was 19 months old at onset and 26 months old at dx. The reason there was a delay in dx is because we thought many of the things he was going through were just a phase - the "terrible twos", etc... He just turned 3 at the end of October and we've been doing abx since January. We're at about 85% - but the last 15% of recovery is proving to be our most difficult!!

Just sitting in a Starbucks in South Tampa, killing time between meetings, so it's not my "usual" Starbucks and I rand into Dr. Murphy. We didn't have much time to chat since her coffee came just a few minutes after I noticed it was her, there was just enough time to exchange pleasantries. As soon as she walked out I ralized I should've asked her about the white paper and if there were any updates...blame it on the fact that I hadn't had a full cup of coffee yet. But now that I know where "her" Starbucks is, be sure I may be frequenting this one more often in hopes to glean some kernels of information!!

My son is very sensitive to exposure. In a way, that's our bigger battle, everytime we're making great strides, someone ELSE gets strep and sends us backwards again. In our case, it doesn't matter how much time he's spent with the carrier, once exposed the reaction starts, and the reaction is similar (but not quite) in intensity to a full blown exacerbation. That's the bad news. The good news is, with us, the worst never lasts more than 3-4 days. Often, he's already coming down off of the worst of it when we get the call from school, friend, whoever saying that their kid woke up with a fever that day and it's strep, etc... He's truly the canary in the coal mine. After the really bad 3-4 days, we usually see a rapid improvement, and within 1-2 weeks are back to where ever we were before the exposure. You can see how this pattern is a nightmare, he seems to be exposed constantly, and we're noticing he reacts (although not a severely) to other things than just strep. It's during exposures that we use ibuprofen the most, it works well for us. We almost always get a rapid culture done too, just to be sure. In our case, at least half of his exposures this year were from his sister! Hopefully she'll bounce back quickly once you clear up your son's strep.

Vickie, I'm not sure, I'm looking into that.... All I can find is that they'll be looking for "new" and "clear-cut" cases of PANDAS. We are definately "clear cut" - evenin without Cunningham results, but as for "new" - don't think we fit there...it depends on how they define it. If anyone else has any info, I'd be very appreciative!

mom - we've suspected in our daughter multiple times. We started a symptom tracking log with her just like we use for our son. We've been watching her for some time now. We're now convinced she has a mild case. Very mild (fortunately). She seems to have symptoms when she's sick, but as soon as the infection clears, she's immediately back to her old self. We haven't sought treatments for PANDAS specifically for her yet, since it clears when the infection clears. But it has given us a good clue as to when she's really sick or if she's just faking!! (She's a big faker to try to get to stay home from school )

This is a topic that I think we have all had to face on our journies. We have insurance, but our deductibles and out-of pocket maximums increased significantly last year, which has put quite a strain on us. My arthritis treatments went from $100 per month for the rx to $380. That's a car payment!!! Needless to say, I've discontinued my own treatment to make sure we could afford to cover everything needed for our son. I'm sure I'm not the only one here who's sacrificed their own health for that of their child!! Dr. Murphy's office brought up IVIG for our son for the first time this week - my husband has already set out to doing the math on how the heck we'd pay for it!!!

fuelforall, As a someone who grew up in Buffalo NY - we consider it Western New York, as the only thing that we're "upstate" from in Pennsylvania Of course, most people refer to us as Southern Canada

My son is very sensitive to exposures - which is why our recovery has been so slow - every time he's making great strides, someone else has strep which sets us back. These "flare ups" are just about as powerful as an exacerbation. So yes - it is very possible that he's simply reacting to others. I agree with Vickie, try some ibuprofen, or keeping him home. Is he on any antibiotics right now? If he's on a low dose, you may want to consider going to a full dose for a bit until this wave passes.

We use the motrin very sparingly, but are still amazed by how well it works. In therapy we're currently working on our sons fixation on the number 5, so on Thanksgiving morning, he had about a 45 minute tantrum because there weren't 5 pancakes with his breakfast (we are not allowed to give him anything in 5's for the ERP and then we just have to ride it out...love it!) He did ultimately calm himself, was still angry at his breakfast, but eventually after over an hour ate the 3 pancakes. Since it was Thanksgiving, we opted to "motrin him up" him before we left for dinner just to be safe. Good call, because he was great, eventhough he refused to eat anything on his plate because the turkey was "broken" and we couldn't fix it - but it was a calm refusal - no meltdown. (Don't ask me what broken turkey looks like, I still have no clue!) On Friday when I dropped him off at day care, I told the teacher who was there that he was off the day before, and if he starts to give her problems, they have motrin and a dr's order, don't be afraid to use it. (she normally has limited contact with my son, but since it was a holiday with reduced staff, she would have him all day) I swear she looked at me like I had a third arm growing out of my head. When I saw her this morning, she came right up to me and told me how AMAZED she was that the motrin worked on Friday. After chasing him down all morning trying to prevent him from hurting himself or others (his new thing is head butting - always fun) she finally caved and called for the Motrin. She admitted she didn't think it would work, but she was willing to try ANYTHING at that point (haven't we all been there!!) She said within 15 minutes he was a different kid - polite, calm, interacting appropriately with the class and teachers. She was floored. I told her - it was MAGIC!!!

My son's onset was a result of impetigo, an he just recently had an exposure when his sister got it - we're still dealing with that one. How does your son normally deal with exposures? My son is very sensitive to them, and will typically react for several days (tics, elevated OCD and rages)but then will come back to where we started within about a week or so if he didn't actually "catch" the strep. Since its the immune systems response - not the bacteria itself - that causes the problems, we've always had "flares" with exposures. The severe part of our flare ups usually last 2-4 days or so, depending on where the exposure and how often he was with that child (whenever his sister gets strep its usually at its worst). Keep a close eye on your son to see if he shows any improvement now that he's been removed from the source. We usually wait until at least day 3-4 of our "flares" to see the doctor since we've been able to record such a predictable pattern. But ultimately you have do decide if you can "stick it out" until Friday! Good Luck!

We've all been in your boat before, and I'm not sure any of us remembered to bring a paddle!!! I have dragged my son into the pediatrician's office for strep tests more times than I can count - he's so sensitive to exposure. I'm in their so much that his daughter's college fund is named after my son!!! All I have to do is call and tell the receptionist that Broderick bit a child and she responds with "when do you want to bring him in". I have asked my pediatrician point blank if he thinks I'm absolutely insane (he insists I'm not, but sometimes I wonder!) My husband and I have both now suspected issues with our daughter, although not as severe, and I suspect PANDAS in every kid I come accross that has behavior issues. It absolutetely is PTSD. Our children, and families, have been under attack for sometime now. As mothers, we're the field generals, not only calling the shots, but in the trenches fighting the battles that our kids can't fight. I don't think there's enough wine on the planet to make me completely relax (believe me - i've tried ) I'd like to tell you I have answers to any or all of your questions, but if I did, I wouldn't be here myself! But know that you're not alone, we're all here with you!

Vickie, How did decide to use steroids the second time around? I'm beginning to think that we're stuck at 85% - and he's so sensitive to exposure, that I'm wondering if a steroid burst might give us the extra push that we need to break free. I'm not sure Dr. Murphy will be willing, but I think I might be able to convince our pediatrician if necessary. Dr. Murphy wants to try to take him off the abx after the next 30 day course to see where we stand. I'm terrified of that, knowing what's happened the last 2x we tried to do that!! But that might be the opening I need to get our ped to try a steroid burst and continuation of abx.

michele, We switched from the azith on the advice of Dr. Murphy. While most of her research was using Omnicef, it's obvious why she preferred that. But she seemed to think that since we got strep 2x on azith, it might not be the best thing for it. There mustsome pretty azith resiliant strains of strep here in Florida or something!

Vickie - that's really interesting. I used to get strep infections 6+ times per year (turned out my sister was a carrier) and was hospitalized on more than one occasion as a result but our pediatrician told my mom the same thing - that I'd somehow be worse off if we removed the tonsils!

We just started on the 5's thing in therapy this week, so hubby shouldn't have done tooooo much damage there, but it was interesting to see just how he completely gave in to EVERYTHING!!! Vickie - your son was treated with just abx right? You guys didn't do IVIG or PEX?

Thank you all again so much for your support and kind words. It really was a rough week last week. Going out for dinner all by myself with a book on Thursday night really was a nice little pick me up. My husband got back on Friday night, and of course all day Saturday Bummy was just an angel because he was so happy to have Daddy back I think that overrode everything else going on. Yesterday Daddy got a little show of what I had been dealing with all week. And it occured to me why it's so much tougher on me than him. He GIVES IN to everything to prevent the meltdown - even the things we're working with the therapist on (currently speration anxiety about taking the dogs out and evrything being given in "5's"). I watched as my son kicked, punched, hit, pinched and poked my husband yesterday and he just took it, without a word because "he didn't want to deal with a tantrum." Ummmm, HELLO!!! I know that what we're dealing with is different than a normal kid and all, but when - through the entire course of this journey - have we EVER let him get away with being violent? We've always pushed a time out if he was physical - no matter how hard they were, simply to make the point that under no circumstances is he to get violent (the therapist has helped us create a "safe place" where he can go if he feels like hitting - and he get's lots of praise for going if he doesn't hurt anyone - it's starting to work). His response - well, I've been gone all week so you should've just been letting things go. UGGHHHHHH!!!! I'm going to be out of town for the next two weekends - why do I think all of the work that was done with the therapist is going to be out the window when I get back??

We weren't on Augmentin to start, we were on Azith, full dose for 3 1/2 months or so followed by half dose for another 5 or so. While on the half dose, we got strep 2x. Both of those infections we switched to Omnicef (and a shot of Rocefin) and his PANDAS symptoms cleared back to "baseline" fairly quickly (we wern't 100% at the time of reinfection). We switched full time to Omnicef about 2 months ago or so on Dr. Murphy's recommendation. We're still seeing improvement, (we've been hanging around at about 85% or so, with some blips from exposures here and there), but it's different than on the azith. With the azith, we would have stretches of time (a few days all the way to almost 2 weeks!) almost symptom free (his breakfast ritual would always linger), but when he had a small outburst - it lasted for DAYS before we got back to where we started. With the Omnicef, we're not having those long stretches anymore. We're having outbursts avery day/every other day or so, but they're "manageable". If he has an issue in the morning at breakfast, we can bring him out of it, and then he's fine the rest of the day. On the Azith, if he had an issue with his breakfast ritual in the morning, his OCD anxiety and tics were on high for a few days. I sort of miss the stretches of calm, but this new pattern has allowed us to really work on what he's learning in therapy better. Bottom line, if you see results you like with the Omnicef - consider keeping him on it. And I wouldn't be scared of switching it up, most folks on here had to try several with some/limited results until they found what worked for their childs needs.

Thank you all for the warm feelings!! I so felt it! My husband, called our babysitter (from MI) and had her surprise me just as the kids went to bed so I could get out for an hour or so...just what I needed!!! I just needed that vent. Thank you!!!

We've been doing realtively well, so I haven't had too much room to complain. We even hosted the Florida support group meeting at our house this past weekend, and people even commented on how well my son was doing - happy and social! Well - it went downhill very quickly the next morning. An all out battle to get dressed and go to church, followed by some ups and downs the rest of the day. On Monday, my husband had to leave town for work, and left me with a kid on the edge! It was terror to get him to school on Monday, and Monday evening it was all I could do to count down the minutes until bedtime!! Tuesday didn't fare much better - he flipped a gasket at breakfast because there were only 4 donut holes left, and EVERYTHING needs to be in 5's. (Considering I couldn't magically produce a 5th donut, I had to ride that one out - not fun). Just to be 20 minutes late for our therapy appointment that afternoon because I didn't park in the "right place" and I couldn't get him out of the car (he has a new weird obsession about where I park - I have no idea why) Needless to say, day 4 of Daddy being away and it has not gotten any better - only worse. We were in the ped. yesterday and it turns out that both kids have colds, no strep, just the common every day cold, so it must be a reaction to that. Great, knowing it doesn't restore my patience any. Over the course of the last 18 months when all of this started, I have always been the one to show restraint and patience, and only after DAYS of terror would I call for the "tap out" from the hubby. But lately, the last few weeks or so, I find I'm not getting any of that recharge I normally get. I have NO patience, and just lose it almost immediately at the first sign of trouble - which we all know doesn't help. I'm gettting short with my poor daughter too as a result. I've found myself randomly crying also the last few weeks when I look at him, thinking it isn't fair that he has to go through this. I don't know if I've just finally reached a breaking point, or if I've just been keeping myself so busy with research, treatment, etc...that it is all just now hitting me like a ton of bricks. Either way, I find myself dreading 5:00 when I have to leave the office to go pick him up from school. I just want to hide somewhere... Daddy doesn't get home until late tomorrow night - I'm not sure if I'm going to make it!!!!

My son sees Dr. Murphy, he's been seeing her since July. I believe that she only does antibiotics at this point - as that is what her research is primarily based upon. She's been running some clinical trials on Omnicef specifically. She has recommended supplements to our son, specifically Omega 3's to help with the inflammation. We're seeing steady (but slow) progress for our son, at about 85% improvement after 10 months of abx now (8 months on zith and 2 on Cefdinir). He is extremely suceptible to exposure though, which I think it what is making our road so long (strep is EVERYWHERE man!!) Dr. Murphy is local for us, which is why we chose to see her, and at this point the conservative approach works for us. Our son just turned 3 a couple of weeks ago and we're not yet ready to try any of the big guns (IVIG/Pex) since we're still seeing improvement on abx alone. Feel free to PM me if you want to discuss further.

I think the risk isn't that the child becomes resistant to the abx, but that the bacteria does - that's why they don't just pump abx through our water supply! But like peglem said, that's a rare thing. It would take a vast majority of the population to be on a long term antbiotic for that to happen - but as abx get older, there are more resistant strains of yuck out there (think about just plain old penicillin). If your child gets sick while on abx, they likely need to be switched to a different abx. For example - when my son was on azith (prophylactic dose) he got strep 2x, but it was an azith resistant strain - changed the abx, infection taken care of.

Hang in there - like others who have posted already, my son did not present with any tics at inital onset. It was only when he got strep again this summer (1 yr after initial onset) did he have a tic, and it's only one, and so mild most people don't even notice it. If you have a pediatrician in mind who'd be willing to learn and work with you that would be great. Especially if they're willing to consult with some of the specialists. The specialists are great, but it's also wonderful to have a local presence that you can get into see quickly if you need to. Our pediatrician was the one to dx our son - after we dealt with the "crazy" for 6 months. He is the first to admit that he doesn't know everything, he consults with Dr. Muprhy (the neuropsych at USF who is researching PANDAS and is local for us), and often asks me if there's anything new I've seen or read that I could share. Maybe this young doctor would be willing to take the same attitude and learn! They all have to start somewhere, and if you can get one doctor in your area to open their eyes, think of the other children you'll have helped too!!

I'll offer a slightly different opinon - how does your son react to exposure? My son reacts a day or to prior to the physical symptoms in the other child, sonwe usualyybknow there's strep somewhere before anyone else. If your son is similar, and he hasn't reacted to the exposure yet, I wouldn't rule out sending him, but that's a tough call. No easy answer.

Your son may not have the infection, but being exposed to the bacteria has triggered his immune response. My son is very sensitive to exposure, while we're not at 100% like you, we've peaked at 85% a couple of weeks ago (I use the past tense b/c my daughter had impetigo last week, so we've had a bit of a backslide with the exposure). Every child is different, but what we've noticed is that our son will have a very strong reaction for 3 days or so (by very strong I mean off the charts!) follwed by a slow recovery back to where he was before the exposure (in our case 85%). The rebound in our case takes a couple of weeks, and it really sucks! My son will also react with other bacteria/virus exposures too. I think it's anything that heightens the immune response triggers it. Kimballot said what our dr's have told us too - if he's on abx already, he should be protected and it may be a temporary flare up. It took several negative strep tests and countless visits to the doctor during his exposure flares before I finally believed them. (I swear, if I didn't have such a great pediatrician and Dr. Murphy on our team, someone would've reported me to DCF for Munchausen's by now with all the trips to the pediatrician we've taken for every little blip in behavior!) Hang in there - and I hope your other son makes an uneventful full recovery!