poetmom

>>>It seems that we can put DD on Augmentin and it will clear up the PANDAS symptoms. But she goes off after the course is finished and then gets her symptoms again right away - within a week.<<< Just curious...how long is a the course she's on? With my son, he was on 10 days with each ear infection and showed marked improvement in the PANDAS symptoms, but the day after he went off...it was back to the same old thing. It wasn't until he was on the full strength abx that he seemed to be able to come down to the lower dose, weaker abx we now use prophylatically. For the record - he was off abx for several months, but is back on the abx despite clearly being in remission because doc and I agreed the risk of reinfection and the possible ramifications was too high... prevention, prevention, prevention is my new mantra...

For my son, who was diagnosed in 2007, Augmentin was the key. In the end, he was on it for at least 6 wks, but it may have been 8. We were waiting to get in to see the specialist and our ped took a shot in the dark based on how his PANDAS symptoms (not yet named then) responded to Augmentin throughout various ear infections. Important to note, he used several antibiotics during the ear infections (9 of them) but it was the Augmentin that had an impact on the OCD, mood swings, tics, etc. Once the worst of his PANDAS was past and he quit getting the ear infections, the specialist (infectious disease) put him on simple Penicillin VK - 250mg/5ml 2x day. It has taken a long time to get to where he is now - which is quite unremarkable...meaning, the average person can't tell there was ever anything wrong with him unless you knew him before or know specifically what small remnants to look for. At any rate, we went for his 6mos check up yesterday. We discussed the risk of a future strep infection in the frame of his two small flair ups this year (one caused by an ear infection; one caused by his sister being strep positive) and we determined he will be on Penicillin VK likely until he is 18. I can debate the fear of resistance, break through infections, possible side effects, etc... but at the end of the day, this seems to be working. I'm not going to change something that's working until it's broken or try to predict the future. I have enough to worry about today making sure he just doesn't get strep again!! I don't think I'd have agreed to putting him on Augmentin though. As I understand it, in strength the order goes: Penc VK, Amox, Augmentin... I have to have places to go if this doesn't work. Hope that makes sense and helps. Does your 3yo still have her tonsils? I was a carrier years ago until I had mine removed...

Voting religiously and spreading the word!

I can't get this story out of my head. When I took my ds to school today, I looked for and thanked each and every individual who has been helpful, proactive, curious, understanding, sympathetic and supportive this year. And then I told them about your little girl who was being treated so horrifically. Every one of them, from his teacher, to the school nurse, to the guidance counselor, to the admin assistance, to the principal responded right away with, "THEY CAN'T DO THAT!" They were all indignant. Make noise. My mother taught me, "You will take it until you are no longer willing to take it, and when you are no longer willing to take it... you won't." Don't take this from them. Your daughter deserves better.

Oh! It breaks my heart so hear you and your daughter are going through this. What a horrific response these fools have taken! No desk? No chair? Virtual solitary confinement? What is lunch? White rice thrown in the bottom of her "cage"? While my own choice so far has been to keep my ds in public school as long as it's a positive environment for him, I homeschool my oldest child and would pull my PANDAS-bear out in a heartbeat if I thought it was better for him. SO...if anyone here doesn't homeschool and is looking at the option, I'm happy to walk you down the right paths to help you get started with curriculum, support groups, etc.

oh yeah... oh yeah.... vent, vent, vent and then your kid gets better - actually goes into remission... and then they REALLY start looking at you like you're nuts...like you made it all up. If it's easy for me to want to believe it was all a bad dream how much easier it must be for people who never wanted to believe it in the first place. Surely, he was just shy and has grown out of it. Surely, he was just ill-behaved and I FINALLY have him under control. Surely, my sweet, happy, successful little boy - the one I nursed and co-slept with for 9 months who'd snuggle up next to me like an angel - was never a screaming, biting, insomniac who refused to be hugged... the same 4yr child who spent 45 min of soccer practice never touching the ball, never stepping on the field, screaming like a banshee and refusing to leave... and as we walked to the car said, "Mom, I did good today, huh?" What could I do but ask, "Did you have fun today?" ... "Yeah! I played soccer!" ... so I told him with a broken heart, "You did great today." But surely, I'm nuts. There was never anything wrong with my kid. Just because you look at him now and he seems perfectly normal, I am TOTALLY OVERREACTING when some random kid offers to let him drink after them and I leap a tall building to knock that drink to the ground before it touches his lips! I am TOTALLY OVERREACTING when his sister gets strep, his pediatrician is out of town, and I don't ask but TELL the acute care workers (who've never heard of PANDAS) they ARE going to put him on antibiotics too and "I don't care if his strep test if negative. Here's your choice: put him on antibiotics or sign a letter saying you're taking full responsibility for the neurological ramifications of an eventual positive test tomorrow." I don't play nice anymore. I am TOTALLY OVERREACTING when they announce on the news there is a rise in the number of strep cases in our area and I groan and my aunt rolls her eyes. OR: I could be the best defense God gave my little boy ... just the mother bear he needs, because an ounce of prevention is worth... well, everything we stand to lose. Wow. I didn't even know that was inside me. ;-) I feel so much better, ladies...

Heartfelt and touching. What a wonderful tribute to a beloved mother!

Happy Mother's Day to all of you! Your children are all truly blessed to have mothers who love them fiercely!

I wanted to add an update on the below brief history of our journey through PANDAS and how my ds is doing as this school year comes to a close, in part because I think it is hopeful for others, and in part because I want to stress how close we came to complete disaster. This is what he's like today: My son is a happy, healthy little boy. At 6, he can read and loves to read. He sings. I can freely run my fingers through his hair without him spitting at me - he usually doesn't even seem to notice if I only do it once. He will wear his pants, although he sometimes is picky about how they fit. He still likes tight shoes and owns a pair of leather, lace-up shoes that buckle tightly over the laces, but lately he often just wears normal tennis shoes. He eats normally. He only has bouts of insomnia when someone turns up sick. He no longer has any verbal tics (though one reappeared briefly when his sister had strep a couple months ago). He held the slimy fish at SeaWorld over Spring Break to feed the sealions without freaking out and let the birds land on him to eat nectar. He played soccer last fall and actually got on the field during games. He got up on stage last month at the Kindergarten Circus and performed confidently - as opposed to the year prior when he was supposed to perform and stood plastered against the wall hidden behind my legs screaming bloody murder but not wanting to leave because some part of him actually wanted to perform. *sniff* He can reason out his emotions and regulate them as well as any 6 year old. He is, according to his teacher, above average academically and socially. And as the kid who people avoided because his rages and tics were annoying and scary, I have in the past few weeks had people who've just met him describe him as "the coolest kid". He is, in a word, fine. So I consider the day the doctors handed me an autism assessment packet telling me he was either PANDAS or autistic. I consider the terror I felt filling it out and how perfectly he fit into some of the boxes they were clearly trying to size him up for in order to figure out where he was on the autism spectrum. I consider how I feared he would never be able to take care of himself, never have normal relationships, never want to hug me again, and what would happen to him if I wasn't there to take care of him. I consider how easily he could have been diagnosed as autistic. And then....I consider how quickly he responded to antibiotics. It was a long road back up, but it was clear from the beginning we were on the right path. So today, I consider how many children are diagnosed autistic. In 1980, it was 1 in 10,000. Today, the CDC estimates it averages 1 in 110. How many are misdiagnosed as a product of questions we haven't yet answered? What kind of black hole would could have completely swallowed my son if he'd been diagnosed autistic and never received antibiotics? Would he ever have recovered at all? I have serious doubts. Most doctors and nurses I've encountered don't know what PANDAS is...so they aren't looking for it! You can't diagnose an illness you don't know exists. No one at his school had heard of it (they all did great research and do now!)...so educators aren't looking for signs to alert parents! And parents aren't looking either, because no one knows a simple case of strep might turn your world upside-down. We need research to determine causes and treatment, but we also need education, education, education. I pray every day my son will remain in "remission". I offer hope to families still struggling, and I offer our story to medical professionals, researchers and parents so they might consider PANDAS more often as a possibility. Hugs to all, Robin

I'm baffled still by my son, who was diagnosed 2+ yrs ago. Most people are unable at this point to recognize the lingering symptoms, but I see the continued albeit GREATLY DEMINISHED signs, particularly sensory issues (i.e. his shoes and pants are rarely tight enough to be comfy). And I struggle to figure out the difference between now mild OCD stuff and the drive of a highly motivated, intelligent little boy. Case in point: at 5 he's reading and writing far above expectations... but is it NORMAL for a 5 year old to go through a 400 page book of Pokemon characters and copy down all their names in a notebook??? Is it normal for him to want to sit next to me and fill pages and pages and pages (2-3 hours sometimes) with whatever words he can think of so he can learn to spell them... "let's write words, Mommy!" I asked his Kindergarten teacher about it as a sounding board/reality check to whether other kids do stuff like this to this degree or if this falls in the OCD category (because he doesn't want to do anything else on the days he starts this). I wanted to know if I should be gently steering him in another direction. She was happy and said she wished more of her kids did stuff like that and to just let him. But I can't help like feeling some of this stuff just ain't normal 5yr old little boy stuff. He's come so far and is now interactive, interested, motivated, curious... but I worry you know that I'm going to chalk it up to "weird little kid stuff" and realize belatedly we've spiraled headlong into a full-blown catastrophic episode again. Maybe I'd just like to believe there's more I can do to STOP that than there really is, anyway... Opinions, please.

I got a good chuckle out of the folks at my son's school, who were concerned and interested in his PANDAS diagnosis when he started Kindergarten this year. They did what research they could, listened to my concerns, helped set up a 504 Plan for my ds, and have been very supportive. AND THEN, they saw this show and his principal, vice principal, and school nurse have all stopped me to excitedly ask me if I've seen it. Despite their previous concern and actions, it is VERY OBVIOUS they had their silent doubts but all of a sudden his diagnosis has credibility. I mean, it was on the TODAY show so it must be real!! HA Whatever it takes, I guess...so thanks! Robin

Hi Buster, I'm glad to hear your daughter has come so far. It seems to me if the social implications of being pulled out of class and singled out are the core issue but if you agree she could use the extra study, the simpler solution would be to bring in a tutor outside of school. Somewhere like Sylvan Learning might offer new companionship on a peer level (perception being she's not the only one) and it wouldn't occur as a singular experience in front of an audience of what it sounds like she views as "unequal" peers. Sylvan's expensive I hear, but I'm sure there are others or even something more private. Hope that helps. Robin

My ds is by and large very much past his episode. Someone sent me a private note "it sounds like he might not be PANDAS anymore". I haven't had a chance to email them back, but is that really possible in 2 years from ages 3-5?? I didn't think so, though I would SO like to believe it. I also heard the 2nd and 3rd episode can be more intense --- anyone care to share experiences on this? We've only had one major episode, though little "flair ups" that seem attributed to illness. I'm frankly terrified of something more intense than the last one... With regards to the hair (maybe just sharing some things we've done will trigger ideas for others. I'm always looking for creative ways to deal with the lingering issues), my ds still doesn't like to have his hair brushed. He will, however, oddly allow me to use a comb. At the worst of his fear of water/hair issues, washing his hair was a screaming nightmare...but I discovered by accident that he would sit albeit nervous and uncomfortable to allow a hairdresser to wash his hair. Later, I also discovered that leaning him over the tub or the sink with a sprayer and washing his hair was easier because simply being in the shower or bath cause sensory overload while limiting the water to his HEAD was something he could handle without quite the same level of intensity. Made perfect sense and I could have kicked myself for taking so long to figure out something that simple... ;-) Is there a thread on here I haven't found yet with just little everyday "sanity savers" that people have tried? Also - during the time he didn't like to be touched, he would sometimes give me very strict directions on how to rub his arm or his back - it was essentially a DEEP PRESSURE RUB, not light pressure and in the exact same area, not moving around from one limb to the other, one part of his back to the other. The consistent, deep touch was something he found sometimes (not always) more tolerable, even comforting. Robin

WOW! So much information here and things to consider. I really appreciate everyone who's spoken up to share their thoughts and experience on the matter. I spoke with the school nurse today who told me she'll be at the meeting on Wed, that she didn't really know what a 504 plan was or how to implement it, but would find out prior to the meeting. I kind of expected her to have more knowledge, but am reserving judgement. Afterall, maybe that will work in our favor, right? :-D I also really appreciate the suggestion of Azith, which I will look into. Will keep you all updated on the Wed meeting and progression of the 504 plan so we can compare notes. Thanks, Robin

With my ds starting Kindergarten on Monday, I read with interest a suggestion to get a 504 plan set up for him. I had to research what it was first... I didn't even know such things existed. So my question is who has one and what parameters did you set? Aside from putting him in a bubble, I can only protect him so much... His class is a combined classroom with two K classes. No wall as a barrier, completely open room. In your experience/opinion does one pull them only when several kids in the class are actually diagnosed with strep? Just one? Outbreak in the school? I have two second graders in the same school living with us. If someone in one of THEIR classes is diagnosed with strep, does one pull him? them too? When is it overreacting? He was in preschool, but about the time he quit for the summer he also quit taking the daily penicillin. I see many here have only been on it for a year or so. Has there been consideration to keep them on it indefinitely? My other concern about the penicillin that I need to discuss with his doc is that since his dad and I divorced he doesn't get it realiably during visiting times. Has even told me when I forgot to send it and realized it that evening and called to say I was bringing it over, "He'll live without it for a few days." And I have serious concerns about him being on and off it like that. Theory about enforcement of this is a far cry from reality... Curious to hear opinions and experiences. Thanks, Robin

Vickie, It's surprising to me to hear anyone finds similaries with this story... it's been so hard to explain to people so I'm relieved to have found a "club" though I'm sorry there are members to begin with! It took me a long time to realize this was a tic. It drove me crazy - it was frustrating trying to talk to him and then he'd get so mad not being able to say what he wanted and with me getting frustrated...poor kid wouldn't talk to me at all sometimes because he was so frustrated. :-( Oh...hindsight, you know. Thanks for the warm welcome! Robin

Hi Sam, Great info included here and I'll make time over the weekend to read further as suggested - thanks so much. We have a follow-up appt on Sept 16th and I will definitely ask all about this. I see not all insurances cover these tests, but as I just had an Igg test myself and haven't heard a denial from my plan, maybe our luck will hold... keeping fingers crossed! Thanks, Robin

Suzan, I didn't get a chance yet to read the story on your link but will do so tomorrow. I was able to see the pics and and WOW - I had to show those pics of your dd to my 16yo son and we agreed the one of her asleep next to the snowglobes ... we both have that EXACT image of my son in our heads asleep amid stacks of neatly folded dishtowels! Thanks for sharing. Robin

Fort Worth, TX Dr. Mark Mazade, Pediatric Infectious Disease Specialist with Cook Children's Medical Center 800 7th Ave Fort Worth, TX 76104-2704 - (682) 885-1485 My experience with him is he is gentle and kind. I have been very pleased with him. Arlington, TX Dr. Wilfred Raine, Pediatrician in the Cook Children's group. 848 W. Mitchell St. Arlington, TX 76013 - (817)-795-8498 Dr. Raine is friendly, compassionate, supportive and was the only (of many) pediatricians in Arlington who took me seriously.

Hi Susan, Oddly enough, no one ever mentioned Igg deficiency until I got to talking with my own general practioner about having had CHRONIC strep as a child (anyone surprised here??) only to become a carrier in my early twenties and until I had my mostly mutilated by that point tonsils removed... She suggested Igg and I agreed only thinking of Collin. She also thought it was worth looking at me first before taking blood from him. Mine was normal, but I'm still thinking about it for him anyway. I did not it actually does go along with PANDAS, but makes a whole lot of sense so you may have just tipped the scales on that decision. Once he got on the penicillin twice daily, he only had one more ear infection early on and now...nothing. I had already seen and ENT and only had to schedule the date to put in tubes when *poof* the infections quit. I will be interested to hear how those tests turn out for Meg. Thanks and very good to meet you. Hugs back, Robin

Hi Linda, That's definitely good information to have about Mazade and I will keep it in mind. I think it's been lucky that my son seems to have responded quickly to the antibiotics - a simple solution given how things could be and I hope things don't change. From reading here, I don't think I really realized just because he reacted one way during one episode that it couldn't be an entirely different scenario during a subsequent episode... Thanks Robin

What a relief to read through all your posts and see my thoughts and emotions reflected, that I can continue to tell myself I'm not crazy, and should continue to ignore all the people who say, even after a medical diagnosis, I'm making excuses for bad behavior, I'm reading too much into normal "weird little kid stuff," I'm making a mountain out of a molehill, the doctors are full of nonsense or (my favorite) my kid just needs better discipline. So here's our story whole long story so far: In Dec of 2006 my ds was a 2yo who could write most letters, recognize the word "Mommy" or his own name, sang constantly making up his own songs and memorizing the words to new songs with impressive speed, danced everywhere we went even putting on choreographed shows for the line at Wal-Mart, loved to be read to, loved to color, told jokes, used 5-syllable words appropriately, and spoke so clearly he stopped doctors and teachers in public who'd want to know "just how old is that child?" He was completely potty-trained. We were living in Atlanta, GA at the time. In early Feb of 2007 his father took a new job and moved to TX while me and the kids stayed to sell the house. In late Feb 2007 I took all three kids on a trip to New Mexico where we all returned home sick. Overnight, my son changed. Suddenly, he was angry all the time. He didn't want to color anymore. He wouldn't let me sing or read to him anymore. He didn't want people to look at him in public and would angrily spit "don't look at me!". Until that point his father had been a stay-at-home dad from his birth so it made sense he would be acting out against the sudden change. I didn't think much about the fact that he'd started lining up all his dinosaurs in rows... In mid-March he turned 3 and a two weeks later, at my wit's end trying to deal with his moods and feeling like a failure unable to take care of the kids without their dad, we moved to TX. Since it wasn't the plan, we were all crammed into Dad's tiny little apartment until the GA house sold and we bought one in TX. With both of us working (and ok, because I needed a break from him and hoped it'd be a distraction) I put him in preschool. Let's just say separation anxiety was of universal proportions. Though it broke my heart, I kept telling myself he'll get used to it, this will become routine, he's back with Daddy now, I'll go crazy otherwise, and this is going to fix everything he's feeling about all the upheaval in his life. Oddly, once he got over me abandoning him at school every morning, the teachers told me he acted fine...which only served to reinforce the idea this was all something I was doing wrong... By mid April, however, my son was lining up dinosaurs, lining up cars, had confiscated my dishtowels and would fold and unfold, fold and unfold, fold and unfold them into infinitum in perfectly neat little squares - he'd lay them out in neat rows across the floor, then collect each to fold it again. It was the ONLY game he wanted to play with me - "Mommy, do you want to fold towels with me?" But I folded them wrong and he'd be furious. He hated getting anything gooey on his hands. Or crumbling on his hands. He couldn't stand to have "gross stuff" on his hands... In late April, he quit sleeping. He was only getting about 2-3 hours sleep a night, usually in the early hours of the morning when exhaustion overcame him. Of course, I figured his horrible moods and tantrums were much attributed to sleep deprivation. Having had a diverse diet, he became very picky about what he'd eat. Then he started to stutter - what I later realized was some kind of verbal tic - but rather that a normal stutter, it was like a stroke victim who couldn't get out a complete thought. Instead of, "Mommy, do you want to fold towels?" it was, "Mommy...", "Mommy do you...", "Mommy do...", "Mommy do you want to...", "Mommy..." It drove me nuts because I was used to a highly articulate, very clear speaker and I thought he was just rushing. I'd tell him to Stop! Think about what you want to say! THEN ask me. Oh...if I could only take back so many times I was frustrated and angry with him not realizing he was as frustrated with himself! Then, the end of April, he got an ear infection. The new pediatrician put him on penicillin and with in a few days WHAM! marked improvement. Of course, I didn't put two and two together. He went off the normal course of antibiotics and soon enough reverted back. I just thought we'd had a couple good weeks... But then he got another ear infection... by the time the third ear infection and course of antibiotics rolled around it was clear something was horribly, horribly wrong and that whatever it was antibiotics seemed to be bizarrely helping his behavior. (Never having heard of PANDAS I had no idea why.) Complicating the whole thing were a series of ear infections (9 that year), constant stomach aches, shockingly colorless bowel movements (anyone else seen this? it went away as suddenly as the rest of many symptoms did without diet change!), and a consistent low-grade fever...fever of 99-100 for two weeks straight, none for a few days, then back again. This particular symptom had his eventual pediatrician test him for leukemia early on just to be sure right away. I took what was once a loving, outgoing, interactive child to one pediatrician after the other in my quest to find a new pediatrician - one that would not tell me "he's just a shy kid" when I wanted to scream "No, he's not. He's not MY kid!!" By now my ds wouldn't speak to anyone he didn't know. He would huddle behind me looking at the ground. He was starting to develop sensory issues - didn't want to be hugged or held. He wanted to sleep next to you, but didn't want you to touch him. He couldn't stand to have his hair touched anymore. He developed a terror of water. He couldn't stand to wear pants because the waistbands were "too loose!" or "too tight!" and would throw a fit wearing them out of the house and strip them off the moment we returned home. He couldn't stand the ceiling fan being on because the of air on his skin (i discovered one night as the culprit to a three hour nerve-wracking tantrum). He developed a sudden, piercing, ear-drum shattering screech that nearly caused several traffic accidents and sometimes seem to startle even him! He would flap his arms weirdly. He started holding things a certain way - scarves, barbie dolls, keychains - so they would drape over the backs of his hands because he liked the feel on the back of his hand and would incessently "pet" the scarf. He spent the entire reception at my brother's wedding folding the cloth napkins. He was having daytime and nighttime accidents. Oddly, at school, they continued to tell me he played and talked. They said he was "shy". My (did I mention now "EX")-husband took to telling me I was a bad mother, although my other two children were fine aside from their struggle to deal with a brother seemingly gone mad. (In fact, at one point during the divorce my confidence took a real blow when my ex claimed, despite by then two doctors agreeing it was PANDAS, there was nothing wrong with our ds and that I "broke him.") Finally, at my wit's end, I called our pediatrician in Atlanta and told him everything and asked, "Am I crazy or does this sound to you like something's wrong." Folks, he called it. From 1000 miles away he said, "That is not the child I've known since birth and you have a big problem. I can't diagnose him from Atlanta, but if he were still in my care the first thing I'd look at is PANDAS. You need to find a pediatrician and not stop looking for one until one listens to you. I recommend you consider a pediatric neurologist." Finally, I'm not crazy!! So...I quit taking my son to the doctor and starting interviewing pediatricians without him. If they looked at me like I was crazy, he never even saw them. The one we have now listened to me quietly for a long time and then said, "I wish I could tell you something better, but it sounds like you have a problem. I'd like to see him. Without seeing him, based only on what you've told me it sounds like he might actually have PANDAS or fit somewhere on the autism spectrum. I'd like to go ahead and schedule you immediately to see an infectious disease specialist. Please bring your son to me as soon as possible. How about tomorrow?" At the first appointment, without question, since I had reported a marked difference on antibiotics (one had no effect, only the penicillins did!), because even with his help getting an appt it was going to be 6 weeks to get into the infectious disease specialist, this pediatrician put the child on penicillin indefinitely saying, "It can't hurt. Let's give it a shot." After six weeks of penicillin (that lasted a little over a year) his new pediatrician, walked into the exam room, took one shocked look at my cheerful son who immediately greeted him with a smile and started animately explaining how we'd been writing the whole alphabet on the exam table paper, said stunned, "This isn't the same child." I replied, "THIS is my child. This is what I kept trying to explain to everyone." Now here's the part that really scared me. After everything I'd experienced with him, before the final diagnosis but after finally getting confirmation I wasn't a nutty, horrible mother, after finally feeling like I was moving in the right direction, I went to his preschool and told them, "Look, something's wrong and here's what they think it is..." And they responded, "We had a meeting and were going to approach you when you came to pick him up today. We think he might be autistic." I was stunned. The whole time they had assured me he was shy, but seemed fine. They were concerned because suddenly he wasn't interacting with other children anymore. They said they'd been watching him and he didn't talk to any of the kids. He wouldn't make eye contact with them anymore. He had taken to sitting at a table for hours staring into space. If you approached him, touched him, and he turned to you (no eye contact), only then would he respond. It was all I could do not to break down and cry right there. The infectious disease specialist examined him, did some tests, etc.etc.etc. and determined he did have PANDAS saying, "Many parents of autistic kids come in looking for answers and thinking PANDAS when it's not, but your child fits the classic description of PANDAS more perfectly than any child I've ever seen." Great. Well, at least it was finally an answer. He spent a year and a half on penicillin. He still has symptoms but we are mostly under control. I am holding my breath for what I am led to believe can only be an inevitable repeated episode. When he is ill, his remaining symptoms worsen, but he hasn't had strep again... All in all, I can happily say he can sometimes be "annoying" to some people for the most part people wouldn't currently think there was any serious issue, that he just needs "discipline." He does need structure. He does NOT deal well with change. He is reading simple first-reader books and proud of himself. He plays!! With other children!!!! In fact, until the past few days when he developed a cold, wet the bed, started refusing to wear pants, and played insomnia boy again (yes, I'm holding my breath), he has now been "normal" for so long that I have the strange sensation I imagined the whole thing and he doesn't REALLY have PANDAS. I should be grateful, but it has its own unsettling effect... I do hope this offers some one out there hope, because at one point before I realized there was actually something wrong I would find myself so stressed I was subconciously making excuses to be away from him and would see him in a rage and wonder if this was the child I was one day going to visit in jail for having committed murder... He starts Kindergarten on Monday. I considered homeschooling him (my 16yo ds has been homeschooled the past four years for academic reasons) but I would like to see him in a structured, highly social environment. I was terrified to take him yesterday to meet his teacher. Nearly cried tears of joy when he hugged this complete stranger at her request! THREE TIMES! My heart jumped for joy when he started playing with another little boy while I talked to other parents. Needless to say, I'm a little tentative about this whole thing. The school nurse, prinicipal and teacher are very interested in PANDAS and already showing support and willingness to work as a team. I meet with them Wednesday afternoon to explain in detail what they should watch for as my daytime eyes and ears, what they can expect during an episode, what needs to be dealt with but are most definitely NOT discipline issues. His preschool teachers were wonderful, but watched this evolve with me so had an entirely different and better understanding of the whole thing. He also wasn't expected to sit quietly and do academic work. I read with interest the thread with links to SchoolNurseNews. Any other suggestions anyone might have for talking to teachers, dealing with episodes/symptoms in a classroom, and KEEPING YOUR CHILD HEALTHY (besides a bubble), I am all ears and forever grateful.... Wow - that was a long story, huh? If you made it all the way to the end here, thanks for listening. No one ever seems to really get it. Robin Mother to ds(16), ds(5), dd(3) Aunt to (my half-sister lives with us now) to ds(13), ds(7) and ds(7)

Hi - I'm new to this blog and will post an intro in a minute, but this one caught my eye because we live in the Dallas area. My ds (5yo now) was diagnosed with PANDAS in 2007. We have only ever seen a pediatrician and an infectious disease specialist, but I really, really like both and I have seen my little boy go from a child I know longer knew, understood, or could stand to be around (I'm ashamed to say) to a child who is loving, affectionate and interactive. Anyway, our pediatrician is Dr. Wilfred Raine in Arlington. Our Pediatric Infectious Disease Specialist is Dr. Mark Mazade in Fort Worth. Both are part of Cook Children's Medical Center and both are kind, patient and understanding. Particularly with Dr. Mazade, who is probably one of the gentlest human beings I've ever met, even in the midst of my ds first episode, my son felt comfortable with him [read: looked at him and spoke to him] on the very first visit. I hope this information is helpful to you. Robin