airial95

The last 5 days alone we've moved up over 2 spots per day, if we keep that pace up - we'll be in the top 10 within a week!!!!!!!

Our son deals most with the OCD and has been on liquid azimuth for some time (our pharm will only give us 10 days at a time too but our ped will keep refills going - the constant copay and trips to the pharmacy is annoying, but it's nothing compared to what we were dealing with before!!). Our son just started behavior therapy to help with the ocd and he told us the biggest challenge with ocd, especially in patients like ours who have a biological reason for the OCD is that it eventually becomes a conditioned or learned behavior. So even after the abx, ivig, or other treatment may have actually worked, they may still have residual ocd more as a learned response. He compared it to like the brain getting stuck on an autoplay loop. He says that the brain needs to be retrained to break the loop. After 4 mo of abx we've got most of the symptoms under comtrol - with the exception of the OCD. Even that, though, is better than before and we're hoping the therapy will be another piece of the puzzle on our path to recovery. Good luck! The folks on these boards have been a Godsend in all of the help and advice, and oftentimes just willingness to listen and commiserate!

This is a fantastic idea!!! Maybe I'll try to get one going in the Tampa/st Pete area!

We need a "Like" button on here just like Facebook! LIKE LIKE LIKE!!! My PANDAS son is only 2 1/2, so I've gone through this repeatedly with my mom who insists he's just 2 and this is how all 2 year olds behave. She'd roll her eyes at me whenever I'd mention a trying day or Dr. appt. or the like. It wasn't until a couple of weeks ago when they had the kids overnight and took them to the park that she finally conceded that something was wrong. One of my son's OCD habits involves rocks - if he sees rocks, he has to pick them up and put them "back". At home, it means taking them from the french drain at the back of the house to the front yard and throwing them in the trash. At a neighbors house - who's garden has all rocks, it's a matter of moving them from one area to another until they're "fixed". He'll even pick up rocks in random parking lots and make you hold on to them until he tells you where to put them. When they took him to the park, he spent the entire time very upset because the rocks were "broken" and "lost" and we have to "save them". They were there for over an hour and he didn't go on the playground equipment once, the entire time was spent searching for and saving rocks. When it was time to go - he obviously wasn't finished and they took him from the park kicking and screaming, which didn't stop until he finally cried himself to sleep at nap time a while later. I got a very quick phone call from my mom at that point that said - "I'm sorry - you're right - that's not normal." As much as I hated to hear about how my little man suffered, I couldn't help but smile when I said "TOLD YOU SO!" Mommies know their kids the best, and if mom says something is wrong - 99% chance she's right.

If we have a goal of moving up just one spot per day -that's 21 spots in 21 days, putting us right in at #10! We've already climbed over 120 spots in 10 days - we can do it!!!!

My husband sent this to his old fraternity mailing list and now has 200 guys checking us out too (and their wives!!!) He said it best when he noted this morning ghat we jumped 120 spots or so in just one week!!! It was the first week, if we can ride that momentum though the end, when others may slow down, we can't be stopped!!! I've posted signs all over my office and the kids day care and left take home cards to remind parents, and my husbands ENTIRE office is voting daily!!!

We haven't had to go the IVIG route yet, thankfully, but I just ckd and there's one near us too!!! This is fabulous information!! Thank you so much

It's been a while since I updated, but I feel like we've been underseige lately. One or the other of the kids have been sick constantly it seems. Our little panda had been doing very well, we were even considering lowering his abs dosage again when his best friend got strep and it's been up and down ever since. I know sawtooth is the name of the game, but it seems more like a really bad roller coaster - you know, the kind when you finally get off you have a terrible headache and want to thow up? Anyway, we've been hunting for a behavior therapist to help him work through his ocd and hitting a brick wall every step of the way. We applied to get an assessment from the Early Steps program at USF and it took forever to get in! We wanted to try to get in their program because they're in the same dept/college as Dr Murphy so we figured we wouldn't be facing the "there's no such thing as PANDAS" run around. After 6 weeks of waiting, we finally had our assessment yesterday! He tested WAY above average verbally, cognitively and developmentally, but failed the hypersensitivity and ADHD tests with flying colors!!! We were immediately accepted into the program and he'll start behavior therapy in the next week or so. We're really hoping that the therapy, combined with the improvement we've been seeing with the azith we'll get a handle on this. But, if there's one thing I've learned on our adventure is just when you think you're in control, you reminded very harshly just how wrong you are!!!! Has anyone else had success with behavior therapy to help with the ocd????

Amber, My son is the same age as your daughter and we were dealing with many of the same issues ( without the autism dx, although our peed just ordered a full assessment b/c he now suspects aspbergers as well"). He's been on zith for about 4 mo now and we've seen about an 80% improvement. We still have backsliding, usually a few days at a time when exposed to something. We saw mild improvements at first, but it took almost 15 days on the zith before we saw anything really significant! So hang in there

Altabax is what our Dr also prescribed for our impetigo breakouts and it always cleared it up quickly. As a matter of fact, when my son was first dx PANDAS, along with the azith that he prescribed, he also had us apply Altabax to the mucous membranes inside his nostrils for a few weeks. Apparently strep bacteria can hang out there and it won't be cleared up by the oral abx alone.

Our son's PANDAS dx was related to impetigo - that's the only type of strep infection either of my kids have ever had. He was just about to turn 2 when the switch was flipped. Like you - we thought he was just being 2, terrible 2 to be specific. But as the rages continued and got worse, we realized something was wrong. It is hard to differntiate when they're that young, but we've noticed that our little guy has a distinct body language when he's having an "episode". He gets a posture about him, and a look in his eye/facial expression that's not normal for him and that clues us in that something is off. He's been on zith for almost 3 months now, with some significant improvement. We were about 80% back until his best friend got strep a week or so ago - now we've been having some bad days the likes we haven't seen in months! I can't speak to the steroids, because my son hasn't had to take them at this point - the azith is working - albeit slowly. But it's slow and steady, which is par for the course! I hope he continues to get better!

My little guy is only 2 1/2, so he's too young for school, but he's always tested above his peers. At his 2 year old ck up he was his milestones were consistent with an average to above average 3 year old! He was using full sentences (4-5 words) before 18 months, by his second birthday he could identify about 20 different dinosaur species (not just the popular ones like the T-rex, but things like the ankylasaurus, archiopterix, and he could tell the difference between various types of raptors), tell you wether they were herbivores or carnivores (and he knew what that meant!), and in some cases what family they belonged to (hadrasaur, therapod, etc...) He's been able to recognize his letters and numbers, even when placed in random order. And just last week he amazed his day care teachers when they were working on recognizing the letters in their own name, he not only recognized his name, he read the names or several classmates without prompting or hints. He even "reads" some of his favorite books - we know that it's mostly memorization from reading them over and over, but he's able to pick up old favorites that we haven't read in quite some time and "read" them word for word so we now suspect that he's picking up some basic reading. He's actually ahead of our 4 year old on many developmental levels. For those of you with talented kids - what type of schools do you have them in? My hubby and I were just discussing last night what we should ultimately do for school for him. It came up since we're chosing a Pre-K for our daughter and evaluating various options for school for her (public vs private vs charter). We're especially sensitive to what is going to be best for him because we don't want his PANDAS to hold him back from the exceptional things we know he can do!

Trust your gut - ifyou think something is wrong - it probably is. You know your child better than anyone else. Our 2 1/2 yr old had some of the same behaviors - the unexplained giddyness, what we call the defiant indecisiveness (like the screaming for Daddy when he's there, but then not wanting Daddy, but Mommy, but really wanting Daddy - maddening!) He aslo severely regressed verbally as well - but we were so focused on the violence of his rages at first it went unnoticed. He's been on abx for over 2 months now and things have improved significantly - we're not there yet, but it's much much better. Hang in there!

My husband and I have totally different ideas as to how open we should be about our son's condition. We both agree that providing details to his teachers and caretakers so they're aware of what they're dealing with is important, however, from there we differ. I have no problem talking about it with friends and aquaintences, especially parents of his playmates. I think that letting them in on our struggles will help them realize that when my son attacks their child when leaving day care because their kid got too close or heaven forbid touched the trains that he has to make straight before we can leave (one of his OCD rituals - will rage for hours if he doesn't "fix them" before we go) it's not because he's a brat and we're bad parents - but more importantly, the more people/parents who know about PANDAS and start asking questions about it, learning more about it the closer we can get to having more people accept the diagnosis and our children. My husband, on the other hand, doesn't seem to want anyone to know that anything is wrong - like it's a big secret that's not their business. Especially since in most social scenarios we've been failry successful in the intricate dance to help our son avoid triggers and meltdowns (although it doesn't always work), and no one other than teachers and caregivers (and some, but not all, of our closest family) should be told. I totally understand part of his point of keeping mum, that he doesn't want others to look at or treat our son differently just because of PANDAS - but I feel the benefits of spreading the word about PANDAS outweigh that, not only for our son but for other children suffering too. Has anyone else had this disagreement? Thoughts?

My guy is still young (2 1/2) and we haven't had to deal with real school yet - just day care, but we've focused on trying to keep his life as normal as possible. Even continuing our normal weekend outings (he gets to pick one weekend, his sister the next) even though they're sometimes very stressful and we feel like we've got a ticking time bomb. Now that he's progressing so well on the abx, we've found that continuing to try to treat him "normal" - not excluding him or rearranging his schedule to accomodate his episodes, has helped him a bit. He likes to tell me how much of a "big boy" and "good boy" he was at school, or on Tumblebus, or wherever. His eyes glow with pride when he has a good day and I think that keeping him in his favoite activities and outings gave him some sort of solace from the craziness I know he was fighting with in his little head. Sounds silly I know, but we felt it was important, and so did our Dr. We just made sure all of his teachers knew about his issues and triggers and gave some tips (whatever few we had - usually just make sure he can't hurt himself or others and let him be) to deal with him if he got difficult.

I'm a mom of one of those little guys - my PANDAS son is only 2 1/2 and his sudden onset came on a month before his second birthday. And for months all we heard is that "he's 2, that's what 2 year olds do." Our son's sudden onset came in the form of biting. My extremely laid back, non-violent toddler became extremely aggressive in the course of a single day. We went from never having any sort of violent incident (not even hitting his sister when she stole his toys), to biting every day at school, sometimes multiple times a day. Just like most parents, we initially thought "terrible twos" and other excuses, like how often he'd been bitten at school, it was just a matter of time until he picked up the behavior. As his behavior escalated, we continued to make "excuses" for him - like he was over tired, sick, his schedule was off, whatever. We did have conversations with the Pediatrician about his behavior, but it was always in the context of "what else should we be doing, our techniques aren't working." Well, they weren't working for a very obvious reason. We were looking for parenting advice, not a reason for the behavior. It took a vacation that my husband and I went on with our entire family for me to begin to suspect that something was seriously wrong - about 2 months after the onset. I'd never seen my little man like that, and it broke my heart. I spent hours each day in the room alone with him while he raged. I started to see something in his eyes and body language that was completely unrecognizeable to me. My husband and family continued to make excuses but I wasn't so sure. It wasn't until another 2 months later when his school, and even a nurse at the Dr's office, reached the same conclusions that something was seriously "wrong" did my husband begin to open his eyes and stop making excuses (and thinking I was crazy). The bottom line is we're parents, we love our children more than anything, and we don't want them to be perfect, we don't want to believe that something is ever seriously wrong, so as long as the excuses fit - his age, developmental stage, rough time at school, etc... we'll keep making them until the pattern becomes so long term and obvious it hits us in the face. I think that's the problem with the sudden onset criteria, it's our human nature as parents to find reasons for our child's behavior, and unless something is painted in black and white, we're reluctant to give in to our fears of something being wrong - so we miss it. It may not be popular to suggest that part of the reason some of our kids don't fit the "sudden onset" criteria is because we as parents were looking at things with blinders on, but I'm sure most parents here have done it - after all hindsight is 20/20. My pediatrician, who we've been blessed to have, diagnosed our son with PANDAS, despite the initial negative throat culture, and has already told us that long term abx is likely in our future. His approach is exactly what we're looking for on this board - let's try this treatment first before we go down the path of psych meds - it can't hurt. Fortunately for us, it's working - I recognize my Bummy again. But our Dr. put it very well when he told us that yes - all 2 year olds are OCD and ADHD by nature at this stage of development, but there's a limit to that OCD and ADHD, and you just "know" when it goes beyond normal, but you have to be open to seeing it. I understand that my view may not be popular, and that our journey to a diagnosis and marked improvement has been relatively short (6 1/2 months so far) may affect my opinion. But it's hard to identify "sudden onset" as a parent if we're not inclined to acknowledge it if we see it. I completely understand if the hate mail starts pouring in!

Thanks everyone!!! Our pediatrician said that my daughter was still contagious for a couple of days after rash, so we've kept her out of school and away from her brother as much as possible. He had a horrible morning yesterday, but after nap seemed to be much better. Had some struggles this morning getting him ready for school but we're keeping our fingers crossed that it was just a minor setback because of his sister being sick!!

Yesterday, my non-PANDAS daughter wakes up with a small rash on her leg. By the time we were ready to leave for day care, it had covered her body from head to toe and she looked like a little cherry tomato - poor thing. Off the Dr, who said she's got 5th Disease and is out of shcool for the week. He told me that she's highly contaigious, and has been for the last 2-3 days, to keep an eye on my son for symptoms. Our Ped is the one treating my PANDAS son, and he asked how he'd been doing and I took to opportunity to gush at how much better he's been, after 2 mo on azith I feel like we're about 80% back to normal! It was great. Until my son got home from day care. His behavior charts (we have school tracking) were off the scales! He had a horrible day, and worse evening, even banging his head against the edge of the kitchen table for no real reason. This morning my hubby took him to school (since I had to stay home with my little tomato) and he finally got a glimpse of what I had been going through daily at drop off prior to the antibiotics - it was a nightmare, almost a full blown regression for him. While he's not showing any signs of symptoms of the rash, and 5th disease is viral - not bacterial - is it possible that since he's been exposed his little immune system is in overdrive because of that, causing a backslide in symptoms? I'm hoping I get a better report today when I pick him up, but I'm not holding my breath!!

If you're not sure what other beh symptoms he might be having, Buster created a "charting" system, where he tracked several common beh issues with a numerical grade 0-9 based on how severe it was that day. (I'd post a link to it, but I'm relatively new here myself and not quite sure how to do it, if I figure it out I'll post - if not, can someone help?) My son is only 2 1/2, so we went 6 months with his complete personality change before getting help because we just thought it was those terrible twos! 7 1/2 weeks on antibiotics and he's closer to the sweet, mild mannered little boy he was a year ago. Our challenge has really been trying to differentiate between the OCD/ADHD/ODD and "normal" 2 year old behavior. We've personalized Buster's system for more age appropriate issues (can't really judge a 2 year olds handwriting!) and have been using it for about 5 weeks now. It's really helped us narrow in on what his issues really are. Once we get enough data we're hoping to try to focus it further and try to identify some of his common OCD/ODD triggers. You don't have to go into as much detail as all of that, but even journaling daily on his ups and downs can help you identify patterns you may not have even noticed were there.

Wornout, We've seen the same thing - last week we had one of the best weeks in forever - until Friday - he was a terror at school, was banging his head on the headboard at bedtime - just a mess. He had a bit of a rough weekend too, but it was still better than Friday. I've personalized Buster's charting system, and set it up to track the whole year. I have day care also "scoring" him so I have a tangible "score" to track his good and bad days. What I've seen over the last few weeks is that his bad days are coming farther and farther apart, and each bad day is somewhat better than the last bad day we had. That helps us alot because even when we're at our most frustrated, we can still see some tangible progress. What we've noticed most about his recovery, is that it's inconsistent as to which behaviors improve day to day. On days when his anger and agression seeming in check, his spatial anxieties can be through the roof. On days when the OCD seems under control, it's the ADHD that's off the charts. What we've noticed though, is that on his good days, it seems that we're only dealing with 1 challenging "behavior" at a time. I'd be happy to share my excel sheet with you, and talk you through how to personalize it for your child if you'd like...It took me a couple of hours to set up, but updating it only takes minutes a day. I've also used it to prepare detailed reports for our Dr. to help him identify how best to renew our abx. (we're fortunate to have a ped who knows about and somewhat understands PANDAS and has no problems with extended abx as long as they're working!) I hope this helps - PM me with your email address if you'd like me to pass along the excel sheet - it's sort of large and I don't know how to post it here.

Fatigue was one of the symptoms we saw (other than the child suddently possessed) that led us to look for a diagnosis. Our son (2) was sleeping 15-16 hours a day including naps, and would wake up with bags under his eyes and was always tired and cranky. Tire and cranky doesn't make most 2 year olds very happy, let alone one in a PANDAS exacerbation! He's been on abx for 2+ months and that's getting better, although on "bad" days, he always does seem a little more tired.

We were pretty overnight. He was always laid back and very mellow, when other children would hit and bite him (which seemed to happen often) he wouldn't even retaliate, just cry and go to the teacher. One day, he bit 2 different kids in one day, unprovoked, and was violent and aggressive all day. This went on daily (increasing in severity) for months. But he went from being a sweet mild mannered child to Damien - literally in the blink of an eye. What kept us from looking for a diagnosis for so long is that we all (including the teachers) kept writing it off to the "terrible twos" coming on, and after all, he'd been bitten and hit by other kids we just thought he was picking up that behavior. It was after a family trip from ###### to Mexico (thank God we brought the babysitter!) and the teachers at school also getting the same feeling that we really thought somehting might be wrong.

Our son showed a resurgence of symptoms after about 2-3 days off azith. It took about 5-6 days back on to get him back to where he was prior to the script running out. We've been fortunate now that our ped hasn't let our script lapse since.

A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain" My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission". The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms. This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".

We have an out of pocket maximum for our insurance too, we haven't run into that problem so far, but then again, we aren't into IVIG or the like yet (thankfully the abx are doing the trick for us so far!) We have hit our out of pocket max every year for the last few years and haven't had any issues with them denying procedures. I think it's going to come down to how the Dr. orders are coded, but I'm not an insurance expert. I also went through something similar with my arthitis medication, after a couple months of (ineffective) treatments it was discovered that I had a rare, genetic form of arthiritis, not the typical RA. Initially, there was concern that the ins would deny the prescription since we hadn't gone through all of the typical "step" progressions through the other (cheaper) options. But since my dr. coded for something other than a type of RA, that hassle was avoided. We're a bit different too because we don't have to get "pre-certified" for a whole lot since our ppo is self-insured. Don't know if this helps or not!