EmersonAilidh

I wish you & your family!!! We'll miss you here on the forums, but it must be happy to be able to say goodbye. Hopefully you'll check in every now & then, but if not.. Good luck with the Lyme fight!! Even if a few hundred miles away, I, & a lot of others, are fighting right along with you. <3

I stopped participating in PE in the sixth grade. So much twitching that running was impossible, & once that became manageable the joint pain set in. I've found that most teachers won't dare argue with something like twitching. Does she tic? If so, that could be to y'all's advantage. & also, has she run before? If so, has she expressed concerns with the coaches or have they noticed difficulties? If she hasn't mentioned it & they haven't been paying attention it could be harder because they could pull the whole "WELL, she's seemed fine so far!" card, which is all too common. -___- With us it was as simple as a note everyday. They knew about my underlying condition, but even on sPed days I would be put in regular PE & I ALWAYS had a note from Mom telling them not to make me participate. I don't know where you guys are but here in Texas PE is barely (if ever) enforced. The second semester of my eighth grade year, my PE credit was "Extreme Cup Stacking". Yes, just as AWESOME as it sounds, hahah. PE typically gets easier as they get older. There are lots of alternatives when it comes to high school (I take Partners for PE where I help the sPed kids with their PE) & more often than not they don't have to do it every year. Here it's only one. In the elementary & intermediate schools they're just trying to drive "PHYSICAL FITNESS" into us & take it a little too serious. More often than not, ESPECIALLY down here, it gets easier as the years go by & the teachers care less & less about actual participation.

Welcome to the forum!!! <3 & preach to the choir all you want, girl. That's what we're here for. I have to go to bed but I hate posting something & getting no replies so I just wanted to say Hello! I hope you get to know all of us on the forum. As they said in Alice in Wonderland, "We're all mad here." ...Some of us moreso than other, hahah. Goodnight SarahJane!

I think most people (docs?) would define a strep carrier as someone who cultures positive (on throat culture) for strep, yet doesn't have typical strep symptoms (sore red throat, fever, vomiting). In other words, they are assymptomatic (do PANDAS symptoms count? don't know). Strep carriers can be positive for a LONG time (months or years, according to one study) if they are not treated with (the correct) antibiotics. So there is no "carrier" test? Is it at all possible to be a carrier WITH P.A.N.D.A.S?? Sorry for all this. :/ I've just never asked about this before. I was positive for strep for literally nine years (5-14), completely asymptomatic nine out of ten times. My pediatrician just started swabbing me everytime she saw me just because she couldn't believe it. The first time I had blood drawn at the BAD neurologist's office, I laughed while I said "Check my ASO, I dare you", but he wasn't laughing when it came back skyhigh & I had NO strep signs. I've had a strep rash ONCE & I get the "sore throat" every now & then (& ONLY when it's going around). The past two negatives have been the past two times when I went in because my throat hurt, ironically enough. I've only had two negative strep cultures, both within the past twelve months. I've also only ever had one negative/normal ASO titer, which was in August. What could all of that mean?? :/

I'd also talk to EmmaLily about this one, since I can't really talk about the benefit of treatment. I'm trying to stay as positive as possible here because I've had a terrible week. Here we go. I agree with MomTo2Pandas. I don't feel like there is anything out there that can fix me. Moreso than that, I feel like letting myself believe that I can be fixed only to be disappointed would be so much worse than to just keep being broken. It's a horrible, horrible mantra, but when I used to be at the hospital multiple times a week I would chant "Hope for the best, prepare for the worst, expect nothing, & you'll never get hurt". I didn't WANT to believe that anyone could make me feel better, just because I knew how much worse I would feel when/if they failed. In my head I figured that if I walked into every doctor's office anything-but-confident, who could break my spirit? As if I had any left. I refused to see any doctor, I refused to even say the word "P.A.N.D.A.S." for about two years, until my Narcolepy symptoms smacked me in the face & I was all but forced to explain what was wrong to people. I don't know what exactly your son has been through, but I'm sure I can speak for him when I say that kids like us, who have been dragged through the dirt by doctors armed with nothing but prescription pads, checkbooks, & agendas, aren't exactly receptive to most in the medical field. Why SHOULD we trust that someone can make us better when so many before them have failed?? This might be a personal one, but I just don't see how someone could ever think it's possible to fix a girl like me. If I go with my old mantra & "expect nothing", no one can hurt me. Another thing is that, if I'm being totally honest, the thought of life without P.A.N.D.A.S. is something totally foreign to us. I say P.A.N.D.A.S. just to encompass everything; Dystonia, possible Epilepsy, possible Lyme, possible who-knows-what-else Syndrome.. I made a PostSecret (I'd highly recommend looking that up if you don't know what it is) a little over a year ago that said "It's all too popular to say 'I am not defined by my disease', but I have completely forgotten who I am without mine". & it's true. IF we allow ourselves to hope for a remedy that even we can't imagine possible, IF we allow ourselves to trust yet another white-coat, IF this miracle treatment somehow fixes what WE ourselves deem unfixable... where are we? Who the H### would I, COULD I be without P.A.N.D.A.S.? I can't imagine anyone who hasn't dealt with this all firsthand really undersstanding this, but you have to realize that this madness is all we know. As terrifying as it is to watch your kids go through their rages, imagine what it's like to feel that angry. Have you EVER been as furious as some of us get? Have you ever been that enraged over absolutely nothing? How about multiple times a day? Have you ever clenched your first until your fingers stuck there? Have you ever beat yourself until you bruised? I'm NOT trying to make anyone feel bad here, but please just think for a moment... Those things are normal to us. Which is not to say that we don't "know better" than to think that everyone behaves in such a way. No, we most definitely see that we're on the abnormal side. But can you imagine being used to those things being your everyday life, & then someone stepping in & saying "I can take all of that away"? & replace it with what, Mr. MagicMan? You say your son's diagnosis was fairly recent, but I don't know how long he's actually been dealing with P.A.N.D.A.S., so once again I can only speak for myself on this one. Personally, I've been fighting this for literally as long as I can remember. Even if it hasn't been years & years & years, this is all we know. Sure, we are all too aware that life sans-P.A.N.D.A.S. would be a breeze compared to the alternative, but just like you guys say you have no idea what your kids go through everyday... WE have no idea what YOU go through everyday. While you wonder what's going on in our minds, we wonder what's going on in yours. What is it like to not be angry?? What is it like to not be afraid of choking everytime you eat? What is it like not to count your steps as you walk?? We are just, if not more, as bewildered by you as vice versa. No one can say for sure, obviously, but I think that trying to imagine life without P.A.N.D.A.S. is JUST as difficult as trying to picture life with it. What is it like to feel better? Sorry for ALL of that.. It's been a terrible, terrible week & it's only Tuesday. :/ If your son's verbal & you want me to talk to him I'll do my best to. I've done it with lots of kiddos on here before. Maybe if you just show him this that would help some? I hope he turns around & accepts treatment. As terrifying as it may be, he has a beautiful, lifechanging opportunity before him that I only wish I had access to. I wish both of you the best of luck!!! <4

I'm glad you found your carrier!! Sorry, I'm a little behind here, what exactly IS a carrier?? My Dad used to call me "carrier monkey" all the time because of how much I had strep. Is it just when you have strep a lot? & can you actually test for it?

I will PM you after school!!! I promise~

What part of Texas are you in? I'm in the DFW area.

The droopy eyelid has ALWAYS bothered me. It's really noticeable.. I don't wanna be like "It's from Hypermobility Joint Syndrome" just from reading this, but that's always been one thing that no one can explain that bothers me a whole, whole lot.. Are there good & bad physical therapists?? Adding one more doctor to my list wouldn't be too terrible of a chore. I 'm already looking into seeing one for the Dystonia in my shoulders, so I'll be sure to at least mention all of this too.

I know a bit about Ehlers-Danlos, & I think that those two are a lot alike.. So forgive me if I'm off base here because I'm just looking up "Hypermobility" on Wikipedia. I used to be able to put my feet behind my head, but now I can't. That's the only thing that makes me think it's not a problem having to do with flexibility or collagen or anything like that. My hips hurt too bad to do it. I've tried, but before I can get my feet far enough my hips POP & I take a tumble. Although, I can bend both of my thumbs back to my forearm, I can easily lock four of my fingers, & I can lock all of them if I try. I always use it to freak people out. I'm not really in any situations to see how easily I'm injured, haha. I'm the least athletic person you'll ever meet. My hips/knees have hurt to bad to run for the past three years, & even then I've only ran ONCE in the past five years. I don't do sports or anything like that. My hips/ankles/now shoulders just pop while I'm walking or doing normal tasks. I also have a droopy eyelid. I'm just matching things up with the criteria now, hah. I don't really understand what "papyraceous scarring" is, but I have scars ALL over my knees.. Can't wear skirts. Too self conscious. My skin isn't very stretchy though.

I don't know much of anything about vaccines, but if you want to know more about that whole connection I'd message Priscilla. There's actually a discussion on here from a couple days ago about the flu/H1N1/MMR shots. I haven't heard of any eye/vision problems with P.A.N.D.A.S., but who knows. & St. Petersburg, like in Russia?? Wow! I hope he gets the abx too. I'm asymptomatic too. I've only EVER had two negative strep cultures, both within the past twelve months. I was always at the doctor quite often even pre-P.A.N.D.A.S. diagnosis (gastrointestinal problems, mouth problems.. I was just a sick kid, haha) & my pediatrician caught on & started testing me for GABHs strep every time I came in. Except for these past two, every single time I was tested I was positive, even if I felt perfectly fine. I switched pediatricians when I was in the third grade, & upon seeing one of my test results in the sixth grade (RIGHT after my "symptom explosion") she said it was the worst infection she had ever seen. But, I felt just dandy (in relation to strep). No sore throat, no swollen glands, no fever, no rash.. Nothing. Just because the symptoms aren't there, doesn't mean that the strep can't be. Lots, I'd probably go so far as to say MOST, P.A.N.D.A.S. kids are just on the sick side. I've had upper respiratory infections, bronchitis, strep (obviously, haha), swineflu, some kind of Mycoplasma infection, & God only knows what else too many times to even count. PITAND is basically P.A.N.D.A.S. associated with an initial infection other than GABHs strep, but I'm not the one to ask about that & I don't know who is. :/ Little edit: GFCFSF, I know gluten & casein, but what is the S? I've been a strict vegetarian since I was nine (about seven years now), & I've been gluten-free for about four months now. I don't eat milk & I rarely eat eggs. The only way that my dietary restrictions have improved my symptoms has been in relation to gastrointestinal problems, which is common among P.A.N.D.A.S. kids. I can't say that it's done much for any other of my symptoms, but I definitely bet that it could help!

You & your blog both already help me immensely! Thank you so much.

I promised to write a little bit. Well, I did. I wasn't going to write until I had a happy ending. Until the hero saved the day, until the prince rescued the damsel in distress, until the sick child got well. Everytime I mustered up the courage to introduce pencil to paper once again, I was faced with a daunting task; to write a story still in the making. Whenever I gathered the strength, motivation, & energy to try, I was confronted by that glaring error, that particularly inconvenient elephant in the room. How do you finish a story that has yet to conclude? It was only after reading the story of a sixteen year old Autistic boy named Josh that i was made aware of that first elephant's uglier, more obnoxious companion.. If I wait around for my ending to find me, it might not be such a happy one. If I don't write it down, who can read it? If I don't shout it from the rooftops, who can I expect to hear me? If I don't make them listen, who will help? By sitting back & waiting for that happy ending to come my way, I was ensuring that countless other afflicted children would be joining me in my wait. But by writing my fifteen years, by making not only my voice but the voice of millions of other children worldwide left sick by a failing medical system heard, I would be helping to ensure that the children of future generations would be able to get what they need, when they need it. I would be doing my part to guarantee that no child has to go through what I & innumerable other kids in your country, state, & city have been forced to endure for the sake of doctor's egos. By sharing, I would be making a difference for those already here, & those to come. I'm no Pamela Weintraub. I don't have the money to fly to join fellow patients in their living rooms, I don't have the resources to interview doctors, & I sure as ###### don't have a degree in science journalism. However, I do have P.A.N.D.A.S., Dystonia, possible Third-Stage Lyme Disease/Epilepsy, God-Only-Knows-What-Else Syndrome, & a drive like you've never seen before. I may not have the credentials, I may not have the experience, but I have a body that's against me & I know better than any textbook or school-made expert. I have what is making so many doctors, congressmen, & parents lose sleep at night. I have it. It has been said that anecdotal evidence is subjective & has been brushed off as practically worthless by most, but personal experience is all I have to contribute. In the beginning, when I was young & still trusted any man or woman with a white coat & a stethoscope, I had this crazy idea that medicine was about healing. That doctors worked not for a paycheck, but just to make their patients feel better. That medicine was all benevolence & philanthropy. Over the years though it has become painfully evident that things are not as they seem on the surface. While pharmaceutical companies stack their dollar bills, we are passing out, staying awake, twitching, obsessing, having seizures, losing our minds, stuck in a ###### unimaginable to any of those fortunate enough to never have ventured into it. While doctor's frame their accomplishments, their degrees & certificates, we are getting sicker. While the CDC, NIMH, & everyone else tells us that nothing is wrong, we are dying. My myriad of both discovered & yet-to-be diagnosed medical problems may not have put me in the grave, but my own defective body has most definitely taken my life, & I'll be d###ed if I sit quietly & watch as so many other children just like me lose their livelihoods to completely treatable conditions/diseases. So, how do I write a story that has yet to finish? I don't know, because I don't have to. This is my testimony, which echoes that of millions of other helpless people all around the world. It's your move, medicine. (Also, just had to add, my handwriting is so "off" that all of that only took the front side of one page, hahah. Now you know why my teachers hate grading my stuff). & a perfect example of what I always refer to as "Narcoleptic symptoms". On Friday night I spent the night with my friend Lauren & slept about nine hours. That's not much at all on a weekend night for me, but it was storming & I just don't do storms (total meltdown. Oh my God), so sleep just wasn't coming like it normally did that night. When Saturday came around we went over to my house, & I took a nap from three to five. She left somewhere during that time, I always fall asleep on my poor friends, hahah. I woke up only to go to a birthday dinner at seven, & got back around nine. My Mom & stepdad had gone out to Dallas for some fun with friends so I had the house to myself & was planning on staying up way late catching up on five episodes of Mystery Diagnosis & three episodes of Medical Incredible. One strange upside to P.A.N.D.A.S., the only thing my parentals have to worry about when leaving me home alone for the night is me watching too much Discovery Health Channel, hahah. I made it through one episode, & woke up half an hour later with the television on that "Your episode is done" TiVo screen. But I hadn't fallen asleep. All too used to this "Where did that half hour go..?" feeling, I just took off my false eyelashes incase it happened again (you can't sleep in those) & started another episode. When I leaned over to check my phone, it was an hour later. 11:30. & the television was back to the "Your episode is done" screen. I started it over & realized that I had seen literally none of it. Whatever, I thought, getting a little frustrated, & I started watching the episode over again. Then I woke up to my Mom walking through the door. I was asleep, somehow on the floor instead of the couch this time, & it was one in the morning. Three hours after I first "fell asleep". When I woke up I was furious & just kept shouting "What the F###" over & over. All I wanted to do was have a night to watch TV. I had already slept eleven hours that day, & I had only been awake for four hours when I got comfy on the couch. When I got up at one & went to bed I was asleep before the previews for the DVD I put in were over & I slept for ten more hours. I don't think "Hm, I'm tired. Maybe a nap would be nice.". I AM ALWAYS TIRED, there's not even any thought about it anymore. It's just.. How it is. The way I explain it is that I don't fall asleep, I wake up.

Hello Cory! I'm the other patient-teen on here. Okay, I'm gonna try to keep this as short & sweet as possible, although I'm not very good at that, hahah. I've had tics since I was four & anxiety/OCD for as long as I can remember. My tics were all minor, mostly in my mouth, & the anxiety/OCD was manageable, so we didn't really think much of it until at eleven years old, about a year after a tick bite, I had my "symptom explosion", where ignorable tics became debilitating & explosive, where panic attacks came every single day, & when my OCD was so bad that it landed me in the Special Ed room off & on throughout my sixth grade year. Just like EmmaLilly, I was completely nonfunctional at this time. I had the waxing & waning initially, but as time went on it gradually grew less & less apparent until the brief periods of remission just went away. I am now fifteen years old in my sophomore year of high school, & eleven years post-suspected-onset, it's thought that I've fallen into chronic P.A.N.D.A.S., but it cannot be said for sure because I've tested positive for Lyme Disease as well five whole years after the tick bite. I've received no treatment, & I see my case as a cautionary tale, in all honesty. Some of my symptoms, like the tics & OCD, have improved dramatically without any treatment besides pharmaceuticals under other diagnoses (which did just about NOTHING positive for me). Others, like my Narcoleptic symptoms & brainfog, which could also be attributed to Lyme (like I said, it's a little blurred :/), have only appeared after all pharmaceutical treatment ended & have all waxed & waned fairly noticeably, but never to the point where they are ignorable or "doing well". My first noticeable period of remission was RIGHT at the mark where I was supposed to get diagnosed with Tourette's, right around the eleven month mark post-Symptom explosion. There's no right or wrong timeline for the ups & downs, all of us are different. & as for the age thing, that question pretty much has the same answer. There is one member on here named MomTo2Pandas who went untreated for about two decades, if my memory serves me right (which it rarely does, hahah), & she made a complete recovery. If you get treatment (antibiotics, PEX/IVIG, steroids... Whatever works for your kids), chances are they'll do just as well as her.. <3

You're definitely not the first Mom on this forum to come to that realization! With the high incidence in siblings & other familyties, I don't think there is any way that P.A.N.D.A.S. can NOT be genetic (although not in all cases). I'm glad to hear about you getting better though!! Gives me hope. & thank you! I love helping. <3 & exactly! I had a math teacher call me out into the hall one time because she was so confused about a test I had taken. I was in Algebra I in the eighth grade at this point. She just looked at me & she was like "Emerson, I know you're not cheating, but I'm so confused. You don't show any work that we actually teach in this class. It's all just simple math." I really just had nothing to say to her, so I just told her that that was the math that I needed to actually "work" to get the problem. As backwards as it all sounds.

Manda ~ I'm doing the best that I can. :/ I've been gfree for about four months now, & I've gotten to go to Whole Foods twice. Not for lack of motivation by any means, but I don't have a car, I don't have money, I can't do it for myself. You buy food & cook gree, healthy stuff for your kids, but that's just not how it is over here. As I've said before.. In this house everyone but me lives off of Chef Boyardee & Ramen noodles. My point being, if I were to try to make my diet anymore restrictive, I'm pretty sure I just wouldn't be able to eat, haha. The day antibiotics come my way, I will ABSOLUTELY cut any & all sugar right out of my diet because it will be beyond necessary, but right now I just can't. I get my license in February (assuming I don't have freaking Epilepsy, in which case I most likely won't be allowed to drive for at least two more years. Please pray for me on that one), & then I can go to Whole Foods as often as I need to. For now, the only places we have down here are Kroger & Wal-Mart. Kroger actually has a little gfree section (much of it requested by yours truly ), but I don't think Wal-Mart likes to acknowledge that restrictive diets exist. Not only do they not carry gfree stuff down here, they don't carry anything vegetarian or vegan either. No MorningStar Farms, Boca, or Amy's Kitchen. I basically just take it as a big middle finger straight from the Wal-Mart corporation to my nutritionally challenged face. The day that I am able to drive (which WILL be in February. I am thinking positive!!) I will open this topic right back up & make a shopping list. For now, what I'm eating/packing is all that I can do & I'm pretty proud of myself. Also, the sugar has nothing to do with the sleepiness. I tried cutting out all sugar in the first semester of my freshman year just to see if it would help me stay awake, & it made literally absolutely no difference. Whether I ate something heavy like bread, light like lima beans, or ANYTHING else.... I'll be asleep within the hour. It's just how it goes.

AmyJoy ~ Your story makes my heart ache, but just remember that's what meant to be will be!!! Is DS verbal or open about his P.A.N.D.A.S.? I'm one of three patients (that I've seen) on this forum, & I talk to kiddos pretty often if they're willing.

I tried doing yoga off & on from the sixth to the eighth grade but my hips just made it impossible. Anytime I tried to stretch... POP. & then just too much pain. Oddly enough I'm weirdly flexible in my knees. I've been able to do the "Butterfly" stretch perfectly (knees totally on the floor) since the first time I tried it, & I used to be able to hook my feet behind my head, haha. I used to do jazz dance, admittedly for not that long, but trying to do a leg bar after my symptom explosion was just.. not happening, hahah. Even if my hip doesn't pop I'm so scared of it popping that I don't/can't exert myself. I help the special needs kids at my school with PE also & I feel bad because I can't run or stretch with them. Once I see this new neurologist (Oct. 13th) that is going to look into the Epileptogenesis I'm going to ask about the Dystonia, too. Physical therapy sounds like it would be a Godsend. Thank you for the ideas & advice!! ____________________________________________________ EDIT: I know Dystonia is muscles & joint pain is different, but I figure a little physical therapy couldn't hurt for either.

Tired of posting so much so I thought I'd just bump this. I packed my lunch today! A cheese stick, a fruit cup, some almonds, some cherry tomatoes, & one little EnjoyLife gluten-free chocolate chip cookie. It was wonderful! I forgot just how much tired I get after I eat though. Picking up my pencil was just not an option when I went back to English class. It was the first time my teacher saw me like that (head bobbing, eye fluttering, pencil dropping) & she was really understanding. Also, a few days ago my shoulders started popping like my hips & ankles do. It doesn't hurt when my ankles pop, which happens literally every couple steps, it DOES hurt when my hips pop (quite so, actually), but oh my God. I was not prepared for my already pained shoulders to join the club. I sit in the desk next to the door in that English class & mustered up the energy to lean back to open it when someone knocked at one point. Bad move. Before my elbow (don't touch doorhandles with my hands, especially in public) could even reach the handle I HEARD it before I felt it. POP. The exact same sound my hip makes before I hit the floor. & oh, my, God, it was like nothing I had ever felt before. My muscles already ache terribly in that area (Dystonic posture), but that was just unreal. My right arm was pretty much dead for the rest of class. Also, has anyone heard of wheat in almonds??? I'm almost positive I'm not allergic to nuts (I LOVE them & have eaten them for years with no problem) but when I got home I read the ingredients of everything that I ate because I felt bad after lunch & found the almonds. Ingredients : Almonds. May contain milk, soy, or wheat. Just thought that was a tad odd. Is this just a result from being processed in the same factory or something?

Forgive me if this is a bit off topic, but I'm a tad confused. After posting about all of my siblings getting The Whooping Cough I decided to read up on it for the first time & stumbled upon the fact that you're supposed to develop an immunity to it whenever you get it. But I can think of at least two or three of them who have had it more than once, including my autistic brother, the oldest of which JUST turned twelve years old.. How could that happen & what could that mean??

Emerson, it is the little things like this that go a very long way in the road to overcoming an exacerbation, thank you very much even for thinking about doing this! Well Mr. C made it to Algebra this morning without having a panic attack!!!! He did get anxious but being in the moment for a hour and a half was a huge step forward, every day is a whole new adventure however, all of my fingers, toes, arms and legs are crossed hoping for slow steady recovery. I described this situation to a co-worker this morning in that every time he falls flat from a PANDAS bear attack it is kind of like rehabilitating him from a brain injury after an accident, his entire thought process is stunted and needs gradual coaching and conditioning to get it back to where it was before. I agree with the many comments regarding finding and ridding him of the current infection. He had blood work done two weeks ago and the Myco P level was still elevated. It's always refreshing to see Dads on here. I sent your son a message a little earlier today, just assuring him that while although I could never say that I knew how he felt because I wasn't him, I had been through the second worst exacerbation of my life in my first semester of freshman year. If stress kicks open the BBB just like an active infection, freshman year must just break it down. Not to mention if you ALSO have an infection!! I got strep more than once that semester & swineflu as well, & you say C might have come down with something.. As if ninth grade isn't already full of enough anxiety & nervousness.. Adding P.A.N.D.A.S. & possible infection on top of that certainly does NOT help any. The only thing that I can recommend for now is just to try to get him to relax, as impossible as that sounds. If you want me to send you the message that I sent him I will. He hasn't replied yet.

Oh. My. God. The tears will not stop coming. That was one of the saddest things that I've ever read, right up there with Jamie Forschner for me. I am so grateful for the health that I do have, & stories like that remind me to count my blessings. God bless doctors like Dr. Kovacevic, Boubolis, Nicolaides, Burrascano, Charles Ray Jones, & everyone else risking it just to fight for us. I swear to you I wrote "our kids" on the first try. Sometimes it's a bit difficult not to feel like a Mom, too. Thank you for sharing that. <3 The only reason that I have yet to write down my experiences with my health (whatever it all is that is at play here) & the world of medicine is because my story has no end. I didn't want to start writing until I could give it a happy ending; me being treated. Me feeling better. Me helping other kids to do the same. But after reading that I think that I'm going to. Granted, there's nothing I can say that could even possibly compare to what Josh & his mother have been through, but I feel like we owe it to brave people like him & his Mom for raising awareness & not being afraid to share their stories. I want to be one of those people. I've talked about it on the forum before, but I'm going to make a difference in the world of P.A.N.D.A.S. (& maybe Lyme too) & that story was the final motivation that I needed. The privatized business that is the vast majority of the medical field needs to be exposed for what it really is; politics & money. People need to be reminded that doctors are meant to HEAL, not charge & treat.. I can't sit by quietly with the thought that I could possibly contribute to help kids all across the spectrum; from myself, to Josh, to every single other misunderstood, afflicted child on this forum & beyond. It's about time we were heard.

PixiesMommy ~ Random factoid, I don't plan on ever having kids but if I did I've always wanted to have a daughter named Pixie Nell. That sounds so much like me as a little one! I hated printing in the kindergarden & first grade just because of how particular I was with the letters (I would erase constantly back then, too. If only I knew that a decade later I'd still be doing it, haha) but when I wrote in cursive it was easier to deal with because it was all one motion so I didn't need to be so attentive about how each letter looked, if that makes sense.. Well, my K & 1st grade teachers were having none of that. We didn't even know anything was wrong at that point so we had no backup besides "She likes to write in cursive" so they just wouldn't grade anything that I didn't print. Funny how they squash advanced kids but cater to the lazy ones in school. AmyJoy ~ Thank you very much! The few friends that I have are all most definitely quirky, haha. I'm very open about the physical part of the disease(s) but talking about the emotional/mental aspects of it is almost impossible. Not even so much that it makes me sad or anything as just, there's no way to make someone understand that. & also, after my years of dealing with all of this I've come to realize that nothing is more trendy than having OCD & Bipolar. Trying to get someone to take those two seriously is quite the task. "& when I say I'm obsessive compulsive I don't mean that I looked it up on Wikipedia & decided that being afflicted made me unique," is normally how I start that conversation off when it does come around, haha. & not yet! Heading over to Target tomorrow to look for one though. Mom was only able to find one gfree soup at Kroger (Lentil something from Progresso) but that's better than nothing & I'm happy that she's starting to learn how to read ingredients! I used to call brainfog "headaches" just cos I hadn't heard the term & really didn't know what it was until July or August. I even have posts on here complaining of "headaches" that were really just intense cognitive blehness. I thought of the best example yet today in class. My friend Chelsea was having some people over to swim. I spent the night the night before & a few other people came over at around ten the next morning. We were all swimming & having fun. It was a very good day as far as symptoms go, there wasn't even any anxiety to be found. Those glimpses of clarity & normalcy are something that I cherish. But anyway, at one point I went inside & upstairs to grab my camera from my bag in Chelsea's room, then came back down & got back in the pool. That's when Lauren looked at me & went "Where's the camera??" It was one of those epiphany moments. Oh my God. In the time that it took me to walk upstairs & back I had COMPLETELY forgotten that I even went inside for the camera. I got out of the pool & looked everywhere. I asked everyone how long I had been inside & they all said barely a minute, but when I came out I didn't have my camera. I checked where it had been before & it wasn't there. Moral of the story is, in the time it took me to run up & down some stairs I not only lost a $200 camera, but completely forgot that I had gotten it in the first place. That's the most prime example of what brainfog feels like that I can think of. It's like someone just stirred your brain up into mush.

I've just been feeling a tad talkative lately. Last week I walked to meet my friend Lauren so that we could go hang out at my house. When we got back, my copies of Cure Unknown & Saving Sammy were FINALLY waiting for me on my porch. I was ecstatic. Lauren didn't exactly understand, but oh well. When I cracked open Saving Sammy, my Grandma was a little less than sensitive. "Why are you reading a book about OCD???", she asked, while I sat there just repeating "S### S### S###" in my head.. At this point my friend Chelsea had joined, & I hadn't told either of them about anything but the physical aspects of the disease(s) that I deal with. So, as calmly as I could, I said "Well, Granny, everyone with P.A.N.D.A.S. has OCD.", to which she replied "Oh, that's cool. What are you OCD about??" What am I OCD about?? Once I got over the initial shock of actually being asked that question, I started thinking. & I realized just how second-nature OCD becomes when you've been dealing with it as long some of us P.A.N.D.A.S. kids have. I thought back to the sixth grade, when desks being arranged in groups of anything but three would send me into a meltdown. When the only reason that I was ever late turning work in was because I would erase it over & over until my letters looked "right". When I would literally spend an hour or more each night "charting" my day; sitting at the computer & making a timetable for everything I had done from brushing my teeth to using the bathroom. Granted, it's not always the case, but I think that after obsessing over these things for so long that you almost stop thinking of them as OCD & more as just, parts of yourself. Quirks, almost. I STILL erase letters over & over until they look right, but when asked why I never respond with "I have OCD". That's just how I do it. I still want everything in threes; six bracelets on each arm, three rings on my fingers, three piercings in each ear... Everything. Our textbooks are numbered, & mine has to be a multiple of three. The other day I got textbook 33 & I was GIDDY. Laughing to myself in my chair over a number... You can just imagine how popular I am. With dates, if I can SOMEHOW add/subtract/divide/multiply the numbers to a multiple of three, it'll be a good day. In my first period classes my peers will see all of this seemingly random math on my paper & ask about it, but my answer once again is never anything about OCD. To me, that's just how I figure out whether today will be a good day or not. For example... 9-21-2010 is an easy one. Just add all the way across. 9 + 2 + 1 + 2 + 1 = 15. So, when asked a question as blunt as "What are you OCD about??", I actually had to think for a moment. & sometimes it's only when we actually sit & ask ourselves, "Hm. What all that seems normal to me is actually crazy to others??" that we realize just how different we really are. I got dumped through a text message last Friday. Real mature, I'm well aware... I was with my BEST friend (Lauren) & two other close friends, but when I opened my phone & saw it I just said "I got dumped", started crying, walked out of the room, & started pacing. At the time, the fact that I was walking laps around my friend's entire house didn't even cross my mind. Sometimes we really have absolutely no idea that what we're doing is abnormal. My friends tried to talk to me but I just wanted to walk. So I walked, walked, & walked until I was so tired that I just laid down & passed out. So, Granny, what am I OCD about??? If only I could begin to tell you. These crazy, crazy things are all I know. Also, ever since the cognitive fog thread I've been trying to pay more attention to mine in effort to explain it better. I think I came up with a good example today. I'm a year or two ahead in math, depending on how you see it, which makes me a sophomore in advanced Algebra 2. I GET algebra, I understand it. Geometry not so much, but Algebra & I are friends. I made a 100 on a worksheet the other day, which was in all honesty a big deal, & the boy sitting next to me couldn't help but wonder.. You see, our calculators don't erase, just in case someone thinks it's funny to type "80085" or something. Anyway, me & this boy ended up trading calculators that day. After I made that 100 he looked at me & said "Emerson, I don't get it. You make great grades but I looked at your calculator & all of the math you've done is single digit stuff that an elementary schooler can do." When I thought about it, it was true. I was the one up on the board showing examples when the class didn't understand, but I had to put four divided by two into a calculator. Negative two divided by two. Worst of all, I had multiplied one by two. It took a calculator to do it. It's hard to imagine until you've experienced it, but plugging things in formulas & equations isn't all that difficult. When it comes to actually processing information though, even imformation as simple as four divided by two, just forget about it. There's no way. It's like your brain is a clock, & when there's a formula & numbers in front of me everything moves smoothly & I can just put them where they need to go & solve it in no time. But give me a fourth grade multiplication problem & all of the gears stick & grind because they actually have to work, even if just a little bit. It feels like as if the hands of a clock just STUCK. Trying to move forward but their defective gears won't let them. I would write more, but I'm already an hour late to bed. You can imagine how cool I am, the sophomore that is asleep by 8:30 every night. Goodnight all! <3