airial95

Thanks for the suggestions. My husband and I were brainstorming last night and trying to come up with ideas and an outline. Originally we were trying to do a traditional social story to explain it specific to our child, but we were having a hard time. Once my husband described PANDAS as my son's brain caught in a warzone, and we thought that maybe that might be a way to explain what's happening in his little body and how we know he's not a bad kid - it's the "bad guys". I think this is our outline so far - suggestions and critisisms are always welcome!!! -Our bodies have armies of soldiers to protect us from getting sick (antibodies) - Sometimes bad guys get in and the army helps fight them off (strep) - Our brain is protected by a special fort to keep it safe from the bad guys (Blood Brain Barrier) - In some kids, the fort has a back door that lets some of the bad guys in (inflamation) - When the soldiers try to go in and get the bad guys, they get confused, and sometimes attack the people inside the fort too (autoimmune response) - When the soldiers are fighting inside the fort, it causes all sorts of bad things (OCD, tics, etc...) - We have to retrain the soldiers (medicine, IVIG, etc...) and rebuild the fort(behavior therapy, special ed) - You can help be a good soldier too (talk back to the OCD, good hygeine to keep from getting sick) Obviously as we write it, we're not going to include the actual medical terms, and we'll be using specific examples of his OCD and tics, and specific coping things he can use to "battle" it. We have a cousin who is an artist who illustrates kids books who we're going to ask to draw the pictures for us. Thoughts??

We see Dr. Murphy - she's a neuropsychiatrist at USF who is also very actively researching PANDAS.

My husband and I will be putting together our list for holiday giving here very soon - ACN will be at the top of our list!!!

The ESE specialist who has been working with my son thinks that writing a social story for him about PANDAS and how it makes him "special" might help. He responds very well to social stories (he just turned 3), and eventhough he doesn't know what's going on with him medically (just that he sees lots of fun doctors), he will tell us that his "brain feels yucky" today, and things like that... She thought that helping him understand what was going on might help him seperate himself from the "disease" (He gets very upset with himself when he has rages and meltdowns since he can't control them, which makes things kind of worse). I'm going to be taking a crack at putting one together - any suggestions???

Thanks, although shortly after I posted this - they called and had to reschedule the IEP meeting until after the Thanksgiving break, which means he won't start until a week later...but hey - it should only be a small setback!

Yeah, the potty training thing was our only regret in treating the PANDAS ! He was on 100 mg 2x per day for 3 months (which was a full dose for him at the time, he was a little guy, only about 22-24 lbs), then dropped to half that for the last 5 months. It was on the half dose that he caught strep 2x. When he got it, he was given a shot of rifampin and oral cefdinir the first time, and just cefdinir the second time, with pretty quick results back to our baseline (within a couple of weeks). Dr. Murphy prefers Cefdinir overall, and after the 2nd infection, opted to switch him. He's doing okay on it (he's on 150 mg day at 30lbs). We noticed his behaviors are different though. We're hovering at around 85% back to normal, with OCD being our biggest issue. On the azith, as he continued to get better, he would go days without any real issues (just his 1 OCD ritual in the morning), but then he might have an "episode", (a ritual or compulsion that hadn't been around in a while would suddenly come back - not as severe, but it would be back), or a bad rage, and we'd have a few bad days. Our longest stretch like that was about 2 weeks - just before the first of the 2 strep infections. On the cefdinir, we're not getting any long stretches practically symptom free, but when he does have a meltdown or OCD related anxiety, it lasts only a few hours, and he's able to come out of it. He's not on high alert for days as with the azith. It's an interesting pattern, we don't quite know what to make of it. But we're continuing with the CBT and he's starting special ed pre-K in a few weeks that will focus on behavior and social interaction, so hopefully that will help get us the rest of the way from our current 85%. (although - with his sister having strep this past week, he's having a big backslide, but if it's like other exposures, we'll be back to 85% in a couple of weeks - hope I last that long!! )

Congratulations!! The journey for us has been far easier than any of yours, with an astute pediatrician who recognized it early, Dr. Murphy being local for us, and a neurologist who, while still skeptical, acknowledges that there is something to it and isn't entirely dismissive. But I've always said, and will say it again, if it wasn't for people like you, and the many other hard working parents on this forum advocating for our children, my son wouldn't be getting the needed treatments and making the tremendous progress he is today. So I, and many other parents like me, say a resounding THANK YOU!!! To all of you who have come before us and helped pave the road for our children. We still have a ways to go, the road is still bumpy - but now there is at least a road, created by those who have come before us. Thank you!! (Sorry for the terrible road analogy - it's the traffic engineer in me, can't help it! )

We had the same thought, maybe his upswing is lasting longer cause it's his sister this time. But when she had 5ths disease earlier this year (which is strep related too), his backslide only lasted a couple of days then. But, who knows. We normally have 2-3 days of terror, with a quick, drastic improvemtn, but then a climb back to where we started (85% normal in this case). It will take us a couple of weeks to get back there, if this exposure is anything like the others. As for where she got it - that's anyone's guess. It could have been the bouncy house place, it wouldn't surprise me, but since he started ticcing the morning of (but before)the party, my guess is that she picked it up at school and it took a couple of days for the actual outbreak. The Dr. didn't put her on an oral antibiotic, just altabax, this time since she showed no signs of systemic infection (because we had her in his office within an hour of her showing us the spot! Our Dr renamed his daughter's college fund the "Gorman Family Scholarship Fund" I'm in there so often for strep checks!!) But we've been watching like hawks for anyother symptoms - in either of them. So far so good. We might be on the back side of our days of terror though. He had a HORRIBLE weekend (to the point I had to call my husband home from running errands because I about lost it), and he had a terrible meltdown on our way into day care today. I did get him calm before I left, and when I called to check on him at naptime, they said he was having a good day - no hitting, biting, kicking, etc... Normally, with bad drop offs during an exposure, it's game over for the rest of the day. So hopefully we're already past the worst of it and starting our climb back to baseline!!!

My son was on azith for almost 8 months, and then he was switched to full strength Cefdinir about 1 1/2 months ago - he caught strep 2x on the azith dose so Dr. Murphy thought it best to switch it up. He only has one tic, and in the grand scheme of things, it's relatively mild - a stroke-like facial grimace. His tic didn't show up until he caught strep this summer. His onset symptoms were strictly OCD, ADHD and ODD. His violent rages were what tipped us off to seek help - it seemed a bit much, even for the terrible twos. Ironically, the frequent urination turned out to be a symptom too - we were so proud that we had him almost totally potty trained by age 2 (we were still working on the poopie of course), but once we started PANDAS treatment, we went back to square one. Turned out he wasn't using the potty several times an hour cause he wanted a Skittle like we thought, it was a symptom!

I was here a couple of weeks ago venting about our utterly useless IEP meeting. Since they were dealing with something new and unknown, they wanted to watch and observe my son a while longer, and keep him in his normal daycare setting instead of enrolling him in special ed preschool with play therapy that will address his anxieties. Well, on Friday we had a "education planning meeting" with the ESE teacher that's working with him, the rest of our ESE team, and my BFF in the whole world the ESE director (the one who said that since his PANDAS outbursts aren't affecting him developmentally, since he's likely gifted, we shouldn't do anything at all - WHAT???). About 10 minutes into the ESE teachers report on what she observed in her first interaction, she stopped short and said quite bluntly "Look, the 1 - 2 hours a week I'd be working with this kid just isn't going to cut it, he needs to be in the classroom. He is EXTREMELY teachable, and the little time I've spent with him he has made progress, but it has to be strongly reinforced when the anxiety hits - which isn't always when I'm there, so he needs to be in the specialized setting so we can get him the skills he needs for regular ed by K." THANK YOU!!!! That's what we've been saying all along, but everyone looks at us like we've got two heads! We can't formalize it until our follow up IEP meeting on the 16th, but he'll be starting school the Monday after Thanksgiving break - which is exactly what we wanted. That's the good news. The bad news, we were at 85% or so better about a week ago, dealing with mostly residual OCD. He woke up Sunday (right before his big BDay party) ticcing away, and the Satan switch was flipped sometime Monday afternoon - yet to be turned off. The culprit - his sister woke up Wednesday morning with a "mosquito bite that really hurts" or as the Dr. likes to call it "impetigo". He checked out okay, but he's been reacting really badly to her outbreak. Normally our exposure backslides only last 2-3 days, but this time we're not so lucky - I'm counting the time change as part of the culprit too.

FYI - my son's bloodwork has all been normal as well, however he is a classic case. His biggest catch (other than the normal bloodwork) - the infection that started it all was impetigo, not the typical "strep throat" infection. Our son sees Dr. Murphy, who acknowledged that even with normal bloodwork, it doesn't rule anything out. Clinical presentation is just as, if not more important. The bloodwork just gives them another piece to a very complex puzzle. We've been treating with abx since January, and have seen a very steady, albeit slow, progress back to normal. Hang in there. PS - we haven't done the Cunningham tests yet b/c he's too young...but we plan to as soon as we can!

Hi!! I'm in the Tampa area, and my son also sees Dr. Murphy as well as our fantastic pediatrician in the Brandon area. There is a statewide support group, and we're meeting againg this Saturday in fact, at my house in Riverview. PM me and I'll give you all of the details!! Thanks

I took busters system and made a detailed excel spreadsheet for it - PM me if you want me to send you a copy.

How'd it go today???

I'll add a small dissenting opinion here - my son was only 20 months at his onset, and was dx 6 months later (we thought it was the "terrible twos" at first). Our pediatrician initially did not order any bloodwork - he did a 30 day trial of abx to see what happens (we called it the "spaghetti on the wall dx" - throw it out there and let's just see what sticks). We saw a SIGNIFICANT improvement (over 50%) within 10 days on the abx. Our dr still didn't order bloodwork for one major reason - he said that in very young children some of the ASO titers and other immune work ups can be unreliable. When we saw Dr. Muprhy 6 months later, and she asked if we had titers run, we told her no, and why - she agreed that the results may not be reliable at that age. We did ultimately get them run a couple of months later - just to have them. We have not done the Cunningham test as of yet - we're waiting until he's a bit older and can be included in her research. So I agree - it's important to know what you're dealing with, but in our case there was a reason not to run the bloodwork just yet.

We've gone through a ton of different assesments in the last 6 months - he's tested "far above average" on all of them developmentally. The one assessment summary did say "likely gifted" - which was ironic to my husband and I because that was the one assessment where he was the most uncooperative (not answering questions he knows the answers too, not listening or following instruction.) He was only 2 1/2 at that time. Unfortunately, our biggest problem - trying to get his IEP done for ESE pre-K services with the school district (with the goal of preparing him for regular placement in K) is that because he's so ahead developmentally - his PANDAS obviously must not be affecting his academic performance. (According to my new best friend at the school district anyway). She basically said that since my kid is really smart, the massive defiance, violence, rage and debilitating OCD that we encounter isn't a problem. So it's like if our kid wasn't so smart, we'd have an easier time getting the services that the school district has already identified that my son should have...nice.

I would be cautious about this. I agree with the others, that it does sound like something's up - this focus is unusual for a teenage boy. But while it might be something that is just annoying to you now, this type of obsession can very easily lead to eating disorders, purging, sefl starvation, overexercising and a whole slew of other unhealthy behaviors. I wish you the best!!!

We felt all of your good vibes! He did great! He greeted every one of his guests, and had no issues until cake time. The girl who served it did something "wrong" so his cake was " broken" but we were able to replace with a newpiecw within 5 minutes. Andwhile he greeted everyone,by the time it was over, he couldn't be bothered to say goodbye,but overall it was a greets day, and he went trick or treating - thanks for the energy!!!!!

Wish us luck today. My son has been doing well enough that we decided to do a small birthday party for him (10 friends) at Pump it Up (an indoor bouncy house place). He's been all exicted for weeks, and still is, but he woke up this morning with his facial tic flaring. We've already given him a motrin to head off any problems - but wish us luck! The party starts at 10!

He did a 30 day course of azith straight away and that got him back to about 40-50%. We tried to go off after 30 days and the behaviors were back full force within 72 hours (further confirming to our pediatrician that we were dealing with PANDAS). We stayed on full stength for another 30 days, and then dropped dosage to half. He was at about 70% at this point, and holding well. He was on this dose for about 8 months or so and making slow but steady improvement, but we noticed he was very sensitive to exposure (would have a very systematic 3 day flare of symptoms, followed by about a week or so of trouble before we got back to our baseline). He got strep 2x on the azith, which was treated with 10 days of cefdinir with a shot of rifampin. With the actual infections, the behaviors flared for only a day or two (but were MUCH worse than just and exposure) - they would subside quickly with the abx switch, but we would still take a couple of weeks to get back to baseline. After the second strep infection - Dr. Murphy changed him to full dose cefdinir - we're on our second month there, she's going to do one more and then try to take him off. We're at about 85% right now, and doing well. The pattern of behaviors we're seeing with the cefdinir is different than the azith. With the azith - at our best we would go days at a time without issue (12 days was our best streak), then he would have an small OCD flare up or something would happen to trigger anxiety and we would have a bad day or two. With the cefdinir, we're seeing the axiety a bith more often (a couple of times a week) - but it subsides much quicker - an hour or two vs. days. So I'd say we're doing better on the cefdinir. Our only tick seems to have been about 98% eliminated as well. I know from others on here that it may take a bit of trial and error to see what works for you. Some get no results from azith, but dramatic results from augmentin or others. I wish you the best of luck!!

My son was only 20 months when he had his first onset. And I have to admit, if we didn't have a very astute and observant pediatrician, I'm sure we would've been told he was autistic. Many of the behaviors do overlap - especially in young children, when one doesn't really think of the strep connection yet. (most still associate PANDAS with onset between 3-8, although many of us know better). Because our pediatrician knew our kids so well, he knew that my son's issues were a sudden change. He was speaking in full, clear sentences (even using proper pronouns) at 18 months, and then suddenly he could only speak in short, single syllable bursts if at all. Our dr knew that this wasn't a developmental "delay" since the skills were there at one point. That's one of the things that helped him connect to PANDAS. But many other doctors - especially those in larger practices where the dr you see isn't always the same one - might have very easily gone ASD with us. For several months after our PANDAS dx, our ped was still a bit worried about the potential for Aspbergers - he fit those characteristics to a T - but was too young for a clear dx. The longer he's been on the PANDAS tx, the less and less Aspberger-like he is getting.

OCD, ODD and ADHD have been my son's primary presentations. He did not have tics at all until a confirmed strep infection this summer - and now it's only one, a very mild facial grimace that he does (looks like a stroke). So I would still say that no - we really don't have any tics.

I can't explain to you the science, or why things work - but our pediatrician did the same thing - a trial of 30 days abx (7 months after the last active strep infection!!). The difference was amazing - within 10 days the violence was gone, and within 14 the rages were manageable again. Was he cured in the course of 30days? No - but he did show such a significant improvement that it confirmed to our doctor that we were likely dealing with PANDAS. We've been on abx for 10 months now - and are about 85% back to normal (we did get strep 2x during that 10 months) And for the record - my son's bloodwork has all come back completely normal...even when it was taken immediately after a POSITIVE culture.

Wow - that is just terrible. I'm so sorry that your son had to experience this. I know my instinct would also be to take hold and not let go!! (Although - at this point I'd probably be in jail because there's no way I would've let the cops keep my kid on the bus in view of this...but that's a side note!) Thinking about my reaction also makes me think about what my husband's reaction would be too. (He tends to be the more even keeled one of the family.) He would agree we needed to talk about it, make sure our son was okay, but not go "overboard". He would suggest that "normalcy" would be best for him (that being a relative term) and try to keep his routines and schedules as consistent as possible to keep that stability. My son is very ritualistic - so in his case, that might be the best thing. What I can tell you is that our thoughts and prayers will be with you!!

I'm with Vickie on this one - it's hard enough for folks to understand what our kids are going though to begin with - we usually get the "bad parenting" thing thrown at us or the like. To connect PANDAS to this girl (which I agree - it seems like a likely case) might fuel a fear that our kids are dangerous - which would set us back in the perception of the condition. I'm all for all of the publicity we can get for PANDAS so folks will take it seriously - but in this case, I would think that not ALL publicity would be good publicity.