EmersonAilidh

I know of one girl in my school district who supposedly got seizures from the vaccine, but my aunt died from cancer so when it comes down to cancer or seizures (which I arguably already deal with), the choice is obvious to me. I won't even try to act like I'm knowledgeable about vaccination though. All I know is that I see how NOT getting vaccinated has effected my immediate family, & that's all I really needed. Seven kids & two parents all coming down with The Whooping Cough (& as I said, God only knows what else...) multiple times is just not okay. I really want to learn more about Autism. A lot of the kids that I work with, like my brother, are Autistic. I wish that I knew more about it. My brother is the lowest functioning verbal Autistic boy I think that I've ever come across & it makes me so sad. I want to understand. Oh, I totally respect her for taking a stand for her child!! It's nothing having to do with that. I only WISH that we had a celebrity face to paste on P.A.N.D.A.S. & Lyme so that we might get recognition like that. I think that what she's doing is great & if I were in her position I can't imagine doing anything else, but I lost my respect for her the day that I heard her advocating Botox. Injections meant to prevent potentially lifethreatening infections are bad, but injections of botulism meant to prevent less-than-lifethreatening wrinkles are good? Like I said, I don't know as much as I would like to about Autism but I feel like ALL of the furor over the vaccinations is drawing away from researching Autism itself. In my head it's like us worrying about strep more than actual P.A.N.D.A.S. Does that make sense?

Suzan, Mati's Mom, & PixiesMommy ~ Thank you thank you thank you!!! You are all so helpful. All of this reminds me of my post from the summer about my rage attack following a failed fried egg & how everyone joined together to teach me to cook an egg over the internet.

Priscilla brought this article to me. Just wanted to throw out there that my Narcoleptic symptoms came BEFORE the swineflu pandemonium came around. 363 kids got it at the school I was attending at the time, me being one of them. I get ll of my required vaccines because, as I mentioned on the OMS discussion, my immune system does little more than attack my brain. I think it's just totally forgotten that it's supposed to, ya know, protect me?? Also, NONE of my sisters & brothers are vaccinated, & all but one of them, the four months old being the exception but just give her time, has had the Whooping Cough & God only knows what other primitive problems since they don't see doctors.. Point being, lazy immune systems run in my family, & even being around kids as sick as often (& as bad) as they are is reason enough for me to get vaccinated. Now, the day they somehow come out with a strep vaccine will be a happy one..

Priscilla ~ Nope! I actually got H1N1 last November, haha. Didn't even feel all that terrible, just felt like a bad exacerbation along with a "Bleh" feeling. But that's really interesting! I get all of my vaccines just because my immune system doesn't like to do much of anything besides attack my brain & can't attribute any symptoms to any of them. Getting my third Gardasil shot in about five months. My Dad is one of the people that argues that not only is some Autism caused by vaccines, but that the vast majority is. Which I find just a tad odd, since my little Autistic brother has never so much as SEEN a vaccine... I don't know where I stand on that whole anti-vaccine debate (don't know what else to call it). All I know is that I can't stand Jenny McCarthy.

WornOutMom ~ I am SO sorry, I'm horrible remembering which kid goes with which Mom. I will certainly send a message Carter's way once I get the chance. We chatted a bit about how his freshman year was going but he didn't let on that it was going so badly. :/ I'll do my best to help!

I didn't really know what to think of it but I thought that it was worth mentioning. Definitely worth looking into at some point, cos this is the first time I've stumbled upon another autoimmune disease that sounds so similar (although there are some big differences) to P.A.N.D.A.S. In my head all of their crazy cybermoms are joining forces with us, & vice versa, to help eachother out.. I hope your daughter is doing well!!!

I don't have much time to type (SWAMPED with Chemistry homework) but I was watching Mystery Diagnosis while making flashcards & came across something interesting. http://www.omsusa.org/ ^^Opsoclonus Myoclonus Syndrome. (OMS) It's commonly linked to neuroblastoma tumors, but they described it as an autoimmune disease where antibodies attack the brain & screw up nerve/brain cells.... Sound familiar?? Overnight onset of tics, rage attacks, sleep disturbances from insomnia to lethargy, anxiety, eating/sleeping difficulties, "mental clouding"... I don't have time to read as much as I would like to, like to find WHAT antibodies are responsible, but I just thought that was a tad odd & wanted to see what everyone else thought.

Highschool's not easy & we P.A.N.D.A.S. kids definitely get the short end of the stick as far as just how freaky freshman year is, if you ask me. The first semester of mine was absolute H###. I don't have time to say as much as I would like to but it WILL get better!! I know you said he is nonverbal but I would talk to him if he'd be willing to. I've talked to a lot of the kids on here. Just a thought. I hope you start seeing improvement soon!!! <3

Thank you all so much!!!! This is why I love this forum, hahaha. Suzan ~ You have helped so much with me going gfree!! Those all sound yummy, cheap, & easy. I think I can do that! & I can't imagine how anyone couldn't like those bars! I handed a little bit of my PB&J one to a girl at school today going "It's delicious!! It tastes just like a peanut butter & jelly sandwich!" & she just went "This is gross, & you are deprived", hahaha. I think we gfree kids just adapt better than others. Mama2alex ~ Those are all great ideas! & they would all just fit in a tupperware. In a weird way, they kinda all sound good together. I LOVE tomatoes, but only from the Farmer's Market down the street. I hate to be "that" girl but I swear storebought ones just taste different! Do you have any tips for boiling eggs though? Everytime I try they just fall to bits when I try to peel them. :/ & I had no idea about sugar feeding yeast! The only sugar I really eat is in those bars & fruit juice though. I don't eat much cos I buy low/no sugar juice. Also, I have Udi's! It's a delicacy over here though seeing as how we make it to Whole Foods about once every two months so I try to eat it sparingly, most of the time with some Gfree veggie burgers from Amy's Kitchen. EmmaLily ~ I always forget about rice cakes! I found some really yummy cheap ones once & then they just... Escape my mind, I suppose. Peanut butter is my favorite food so that sounds great! PixiesMommy ~ I tried salads last year but the're just too difficult to carry around school. D: The dressing would always leak out of the tupperware, or it would get gross & wilty before I could eat it, or it would just bust open in my bag. All in all.... No bueno. I LOVE salads though, #1 restaurant option, so I wish I could work it out. Stephanie2 ~ I started freezing after being very sad & confused when it went bad so quickly when left out like regular bread the first time. I've been trying to microwave it but it just turns into a giant crouton.. Defrosting would probably be a better idea, hahah. If I can remember to leave it out the night before PB&J's would be great! I'm so sparing with my bread I almost always forget that I even have it, hahah. Almond butter would be great with it too! I don't mind them joking about it every now & then. I know the look on a waiter's face when I start asking a billion questions so i always just start off with "I'm one of those restrictive diet nightmares", hahah. I always make sure to say CAN'T eat blah blah blah... instead of WON'T or anything like that. I've found that people are a lot more receptive when you make it apparent that it's not just some choice. AmyJoy ~ Yogurt & I have a love-hate relationship. It would be worth a try though! I haven't eaten meat in about seven years (& haven't vomited a SINGLE time since I stopped) but I used to LOVE tuna. Are there gfree crackers?? I haven't seen those before! Thermos is a wonderful idea too. I bet I can find a cute, cheap one & soup is about as easy as it gets. & I do eat cheese! No other dairy, though. I'm gonna make a lunch list, & cheese sticks (especially the twisty kinds) & fruit cups will most certainly be on there! & we don't know if it's Celiac's, necessarily. We don't know what IT is at all, actually. All we know is that I hated eating before because of how horrible it made me hurt but, once I went glutenfree eating stopped being a terror. As a wise Mom on here once said... They could call it Sh** On Toast Syndrome for all I care as long as I feel better, hahah. Mati's Mom ~ Oh no, never ever water fountains!! I won't even touch public doorhandles or floors, much less use public bathrooms or fountains. That's been going on since back when OCD was just "germaphobia" to us. & I never ever have time to cook. I wish I did!! I wonder if I beg my Mom if she'll get off FarmVille long enough to make me something, hahah. I always try to make Minute Brown Rice (only comes in short grain. Bleh.) but it always just comes out so... Watery. I guess it's a sensory issue but I HATE boiled rice unless it's done absolutely perfectly because even if there's no water left in the pan the rice is just too... Wet. No matter how long it's left out. Do you have any suggestions?? I used to love just simple rice & beans & cheese but I can't eat it anymore. :/ & we have no lockers at my school. Weird, I know. We have split days. Four classes on "A days", & four different classes on "B days". A days are just one binder, but B days are two binders, two giant textbooks (one of which is for my college history class! So proud. ), three spirals, & sometimes more.. The thought of adding a lunchbox to that load is not a happy one, hahah. Chemar ~ I'm going to buy that book! I bought one gfree vegetarian book but all of the recipes were pretty complicated. We just don't have the time or funds to do all that. Thank you for the links! AmbersMommy ~ I totally forgot about those things!!! I used to eat those back in the sixth grade, when I thought just being vegetarian was difficult, hahah. I wonder if there are some sugarfree ones!

Normally I just eat a Larabar for lunch. Which, sidenote, if you haven't tried, you need to. The only allergen in them is nuts, they are DELICIOUS & come in lots of flavors made for gluten-free people who can't eat desserts (mostly) & are incredibly healthy. The ingredient list on most of them is five items or less & all of the items are REAL foods! Peanut butter & jelly bars, cherry & apple pie bars, lemon bars, coconut cream pie bars, key lime pie bars, so on, so forth. At my grocery store they're 10 for $10, too. That's two weeks of school lunches for $10. My brainfog & morning anxiety have been killer lately, & every single day last week I forgot my lunch. On Friday I was hungry enough to eat a little bit of tortilla at lunch, then got dumped & ate a brownie in a moment of weakness later on. OH boy, as if I needed a reminder why I had to stop eating "real food" (as my family so kindly explains it to confused waiters at restaurants), but I paid for that tortilla & brownie for two days. ANYWAY. I've been wondering if maybe actually having a substantial lunch would help me remember instead of just a little bar that is so easily looked over & forgotten. But I've been trying to think about what I could pack & I'm drawing a blank. :/ We have no access to microwaves or refrigerators at school, & I can't eat meat either. Do any of y'all pack lunches for your kids??

I have my reasons for how I feel towards my Mom, but nine times out of ten when I say things like that it has nothing to do with any of those reasons. I can't help being sick but I cannot stand seeing the toll that it takes on other people, namely my Mom (who admittedly only recently really started showing that she cared). It's frustrating to know that you're causing someone that you care about a great deal of pain & there's nothing you can do to stop it. & that's what I'm on this forum to do. <3 I know that a lot of kids can't share like I do, so I'd like to think that I'm helping share for them. Oddly enough, literally the ONLY time that i talk like this is on here. One mom once said to me "Just remember, every moment we're on here is a moment we're not with our kids". As a general rule of thumb, if I'm on here, I'm feeling better than usual. Above baseline, hah. I have my meltdowns & freakouts & compulsions just like everyone else's kids but I try my best to do my part in helping all of us. Being alone in this for as long as I have has made me all too eager just to contribute my experiences to help all of you guys. I hope you are feeling better!!!

Because we know we're right & we have something to fight for. I feel a bit odd saying "we" when we're in different positions, but we're both on the same side of this battle so I feel like I'm fighting with you guys. I can't speak for your son but I can say that I hate it when I talk like that. We have the flash "rages" but with me I am just ALWAYS ANGRY no matter what's going on, & that oftentimes gets taken out on my poor Mom. We are stressed out, frazzled, frustrated, enraged, annoyed, furious, irritated, & every other angry adjective you can think of at our own stupid bodies more than anything else. I don't like knowing all of the trouble that I cause my parentals as well as every doctor that doesn't know what to do with me, & oddly enough that more often than not gets channeled right back into the very people that I don't want to hurt. We LOVE our parents but on most days I, personally, just hate everything. This sounds negative but it's really not.. All I'm trying to say is that I can't imagine how much it hurts to have your child say things like that to you, but it's not because we honestly think that. I hate myself for all of the stress that I have brought into my Mom's life, & when I do take it out on her it's because I'm angry at myself because there's nothing I can do to make it any easier on her & I know that it's my fault. As far as your neurologist goes.. Don't listen to him. You know your child better than anyone else, & if he's not understanding & not giving you what you both need, find someone who does. I hope you feel better!!!

This board really needs a "Fast Reply" box like the P.A.N.D.A.S. one! Lyme Mom ~ You're telling me! Learning that almost knocked me off of my feet. Out of the frying pan, into the fire. I've found a doctor in the area who HAS third-stage Lyme himself & I believe that he diagnoses but won't treat. That's our next step, along with testing for co-infections (Mycoplasma was already positive) & secondary infections. Time to knock all of this out. I'm in the middle of Cure Unknown & managed to read about Jamie Forschner the day that I posted this. Not exactly the most comforting timing. Unless I managed to have a stroke or some blunt trauma without anyone noticing, this is really the only thing that makes any sense in my head. MichaelTampa ~ Thank you so much!! That was helpful. My Mom's general physician/gynecologist has been involved in our family because of my Mom's problems in that field so I saw him last week & he is Lyme receptive but will not treat. He is helping me find a Lyme receptive neurologist or epileptologist to get to the bottom of all this. The whole time he was suggesting Epilepsy he said he didn't believe that they were triggered by lights or things like that, though. I know just-about-nothing when it comes to Epilepsy, so I don't know if that means anything. :/ SF Mom ~ Thank you! That sounds scary. I'm sorry you had to go through that. JT's Mom ~ My Google skills are lacking. For some reason I only searched "Neuroborreliosis" & not just the regular kind, haha. Thank you for those links! Especially the second one. <3

I typed out something HUGE & then it erased. Good Lord, this poor woman is going to think we P.A.N.D.A.S. people are crazy. JaylensMom, if you don't think that your son's problem is P.A.N.D.A.S. or PITAND related... Then who are we to tell you otherwise?! I think that sometimes we get so caught up talking about symptoms & treatment that we often neglect to take into account the underlying cause... INFECTION. In a child with no history of infection, why would P.A.N.D.A.S. be logical?? I understand that a lack of infection does NOT rule P.A.N.D.A.S. out, but if he's operating within the Tourette's diagnosi & you have already ruled out P.A.N.D.A.S., then why would you be expected to go further down that road?? I think that some of us, including myself - misdiagnosed with Tourette's at eleven years old (& that's only the tip of the iceberg), have been made paranoid by our bad experiences with doctors. & trust me, I do not mean that negatively at all because with what some of us have gone through with doctors, teachers, insurance companies, & everything else.. We do have every reason to be a little paranoid about people being misinformed!! But with almost a decade of experience, I imagine that you are just as (if not more) well versed in Tourette's than most of us are in P.A.N.D.A.S. You don't get on the Discovery Health Channel without connections, people. So, all I'm saying is, if you have reason to believe that your son does not have P.A.N.D.A.S., good for you. "Good for you" always comes out sounding malicious or sarcastic, but I really mean it. None of us know him & can't say what it is, but we are all quick to pull the "P.A.N.D.A.S. trigger" when watching shows like this. I know even I do sometimes. No matter what it is that your son has, Thank you for being another brave Mom fighting for her kid & I hope that the both of you are doing well! <3

Lyme can affect the central nervous system and it manifests itself in many different ways. Didn't you say that your lyme test results indicated exposure to lyme? The test was negative but you had indeterminate bands for lyme specific antibodies, right? You do not need a fully positive test to be diagnosed and treated for lyme disease. I would go see an ilads trained lyme specialist b/c they can really get to the bottom of this and get you on the right combination of antibiotics if they think lyme and or other coinfections are involved. None of us can tell you whether you have it or not but it is extremely common now from coast to coast. You don't even need to have history of a tick-bite either but since you remember a tick bite that makes your history more suspicious for lyme. Good luck! No ILADS doctors in Texas (lucky me...) but I found a doctor that HAS & diagnoses Lyme.. but will not treat it long term. It's completely illegal here. Once we do that, we'll go from there. HOPEFULLY we'll leave with a diagnosis & can pursue treatment out of state; the antibiotics can't be PRESCRIBED in Texas but they can be used. Lyme test was positive, yes. That doctor washed his hands of me (as i've read he's done to others in my situation) the second he saw that though, so I'm waiting for my Mom to get back from Austin to schedule an appointment with this Lyme doctor. Waiting on a recommendation from a general physician to a neurologist or epileptologist that is at least Lyme receptive, as well. So many things on my plate, it's hard to figure out what to tackle first. Thank you for your help!! Does anyone know of any evidence of Epilepsy in Lyme patients?? I haven't heard of it, but I figured the CNS connection couldn't be ignored & I couldn't think of any other possible cause.

FixIt ~ Tics are MUCH less of a bother now, but not totally gone. They have been worse than usual this week. :/ I think I may have caught a bug over the weekend.. I've felt a bit under the weather. So I guess that's why. But yes, main concerns are mostly OCD/anxiety, fatigue/sleep issues, brainfog, & general pain & aches. NeverGiveUp ~ I get asked that all the time, hahaha. But no, I don't. Once all of this over & done with you'll be hard pressed to get me back into a doctor's office for a wellcheck. I wanna be a psychologist.

My SpellCheck does NOT like that title, hahaha. Anyway. Just a thought here.. I posted a few days ago about an EEG coming back "conclusive of epileptogenesis in the parietotemporal focal area of the brain". There was more information but I gave my records to another doctor to review so I don't have the paper on me right now. :/ A few google clicks later I figured out that EpileptoGenesis is the series of events occurring in the brain between when a patient actually GETS Epilepsy & when they have their first seizure. After more reading I kept hearing that the main possible causes were stroke, physical brain trauma, neurodegenerative diseases, & infection. Well, I'd LIKE to think that I'd know if I had a stroke or physical trauma, although it this point I can't say that I'd be too surprised if they told me otherwise. While searching for a doctor to pursue a clinical diagnosis (positive test already in hand) I've been reading about Lyme, particularly in Cure Unknown. & I stumbled upon Neuroborreliosis, where the bacteria can infect the Central Nervous System. Could that possibly be a cause?? I believe I was bitten by the tick in the summer of 2006 (honestly can't exactly recall.. It could have been fall of 2005?), symptom explosion came in fall/winter 2006, & seizures seem to have been on the mind of everyone i've seen. I've never read about Lyme patients with seizures though. Is this uncommon, impossible, or likely?? Just wondering. Trying to pinpoint a possible cause.

NeverGiveUp ~ I was treated for "Tourette's" tics (refraining from saying diagnosis.. some papers say I DID get the dx, some disagree...) for about a year. In all honesty it's difficult to tell which medication was doing what, IF any of them were actually helping, & how much of my improvement was just natural P.A.N.D.A.S. waxing & waning. I take no medication now, but in the past I have taken Aricept, Risperdal, Depakote, Tenex, assorted benzodiazepines/tranquilizers & many others that escape me at the moment. If you're dealing with P.A.N.D.A.S. though I'd recommend antibiotics or steroids or something, just because the whole reason I stopped pharmaceutical treatment was because of the not-so-great side effects. My tics were at their worst when I was eleven in the sixth grade. What I had to do was really just explain it to those who were willing to listen, & ignore those who weren't. My little shpiel generally consisted of "It's not my fault, I can't control it, I would stop it if I would. It's like when you cry or breathe. You don't think about it... But your body does it anyway." I'm fifteen now & I'm used to my peers being less than understanding, & I don't know how new/experienced your daughter is to ticking, but a big part of it is just getting used to it & learning to brush off others' ignorance. The breaking point for me was in the seventh grade, when a substitute teacher, not a student, yelled at me for twitching & mocked me when I told her that I had Tourette's. She went so far as to accuse me of lying & sent me to the office for being disruptive. Well, I didn't go to the office, I went to the bathroom & cried instead. It was then, a little over a year into my real battle with all of this, that I realized that if my body was working against me, there was no point in having ME against me too. It's easier sad than done & I'd be lying if I said that it just magically stopped hurting when people stared at & made fun of me, because it still does, but I just decided that I had enough to deal with & that ignorant people were the last thing that I cared about. My "active social life" consists of four friends & that boyfriend, but I would rather learn to be happy alone than try to deal with people, who especially at our age, aren't exactly receptive of anything "different". I still have NO friends at school, still eat lunch alone & start panicking when the teacher says anything about groupwork, but withdrawing socially isn't for all kids, & that's alright. Really it all just depends on your kid. I hope you & your child are doing well! <3 FuelForAll ~ I'd like to think I would know, hahah. I've got two out of the three myself. I was referring to kids exclusively with Tourette's. We get our array of symptoms from our Basal Ganglia basically just getting confused & messing everything up, but most of Tourette's is thought to be genetic. So why do those three other symptoms occur simultaneously so commonly?

lmkmip67 ~ Let us know how your appointment goes! I wonder why so many kids with Tourette's (& not P.A.N.D.A.S.) also have ADHD, OCD, & anxiety/emotional issues. Hm... Makes me wonder how much of it really is just stress from an initial symptom snowballing & making other minor things big issues. Know what I mean?? Tourette's is very treatable & pretty much totally accepted. Under that diagnosis I never once had a doctor look at me funny & if anything the Tourette's docs main flaw is being TOO proactive, which although not great is much better than the alternative, if you ask me. Tantrums ~ I'm sorry!! That made me sad. :/ I hope you & your little one find answers & peace soon! & oh, I understand that that's how it works! No one (besides us, hahah) would want to tune in to watch a kid with a few little tics here & there. Showing severe cases like that brings attention to the disorder, gets it recognized. Which goes for Mystery Diagnosis, as well. I remember telling all of my friends to watch it & all of them just being like "You're not like that..." & me having to explain that I used to be, but not all P.A.N.D.A.S. kids reached that point. BUT, instead of them seeing someone more functional like myself & then forgetting about it, Sammy's heartbreaking story, & therefore P.A.N.D.A.S., is still with them. & while Tourette's is much more well known, I still understand that they want their message to stick. With all of our different stories & symptoms I bet we could just have our own little sub-Mystery Diagnosis show, hahah.

I don't think that I liked it!!! The whole time I was thinking... "Where are the girls??" Why would they choose four boys?? Also, I understand putting worse cases on television, but my God. Poor new parents who undoubtedly tuned in to that show for a little information only to hear about how medication shows no results for Tourette's.... When more often than not it does. I think they should have showed some more standard, run of the mill approaches & stories as well instead of radical options like Deep Brain Stimulation & (this might tick some people off...) lazy options like just monitoring your child's diet with symptoms that severe. Obviously, typical cases wouldn't make for good television, but for some reason I just felt that the show was lacking. :/ One thing I will say though is that when I was operating solely on the diagnosis of Tourette's (about a year. Before I had ever even heard of P.A.N.D.A.S.), rages were accepted as a symptom. I used to be as bad, if not worse, than most of the children on that show. Until you've experienced tics like we have, in particular those bodyrocking, explosive, way-out-there ones, you can't understand just how frustrating it is. & obviously, you can't get PO'd every single time you tic. For me, I compulsively counted to eight after every twitch. If I do say so myself, twitching is one of, if not THE single most frustrating symptom that I've dealt with. Every tic is a reminder of how your body has failed you, every twitch is a reminder of all the eyes watching you when all you want to do is sit still & be normal. All of that stress alone is enough to cause rages in an otherwise psychiatrically healthy kid.

Try fitting in with other kids, hahaha. I posted a FaceBook status today going "Tourette's Uncovered comes on at eight o' clock on Discovery Health Channel tonight!" for some reason expecting everyone, or at least someone, to be excited to me. It was only when I realized that the only responses I was receiving were all about Tourette's Guy that I remembered "Oh yeah. No one else cares", hahah. Not in a bad way. Or having people accuse me of having an eating disorder because I always say "I'm not hungry" instead of opening Pandora's box with something like "I can't eat bread.", because I've learned better than to expect anyone to even know what gluten is by now, hahah. This week everyone is concerned with homecoming court being announced, & I'm just concerned with staying awake in class (which I royally failed at for all three classes I went to today). My friend called me to tell her about her day the other day, & all I had to say about mine was "Cure Unknown finally came in the mail!!!" while jumping up in down with the book in my hands like a giddy little kid. I don't think that I've ever posted about my boyfriend?? Hahah. Well anyway. I was at his house on Sunday, laying around, watching movies, & when I tried to get up for something my hip popped. & of course it wasn't just a little, ignorable one.. oh no. It was one of those loud, obnoxious ones that could be heard clearly over the movie & in a split second had sent me from the bed to the floor. So while he stared over the edge of the bed, wondering whether to laugh or offer a helping hand, I knew I had a decision to make. I could start shouting a long chain of expletives & cry like I wanted to... Or I could just yell "HELP! I've fallen & I can't get up!!!" to make light of what my friends just call my "old lady hips". Guess which one I chose?? We P.A.N.D.A.S. kids are "weird" enough. More than anything else, I'm thankful that my defective body hasn't robbed me of the ability to laugh at myself. We might be weird, but we're the best Moms & kids out there. <3 If walking down the hallways alone means not having to put forth more effort into staying awake than I already have to for the sake of conversation, then so be it. We do what we have to do to get by, cyberMoms. & guess who's going to be victorious in the end for it?? For now I am more than happy with all of my understanding friends being Moms on a chatroom. My Mom actually knows some of your names now from me going "Well, EAMom said..." or "Look what Worried Dad posted!". If the ACN forums is as close as I can get to a friend that understands.. I'll take it.

Emily ~ Yeah!! That one. It was a goodie. & Parents4Eyes ~ I get that much! I just don't understand how it could be written about for literally YEARS without being so much as mentioned to me. Oh well. It's all in the past now.

WorriedDad ~ Oooh my God I think that I've read that article or at least one very similar to it. It was on some website for women with chronic illnesses. I remember that it had a clever name. :/ I remember that article reinforcing my belief at the time that doctors were inherently good. It was talking about how frustrated they became when faced with a patient that they knew they couldn't treat or make better. It made sense & in a way I did feel bad for all of the doctors who probably really WERE trying, but if you know your limitations, give a referral. Hunting begins THIS WEEK! I am hopeful.

TPotter - You bring up a really good point when you asked if the abnormal brain waves could be caused by the same infection as P.A.N.D.A.S. I've been reading about Epileptogenesis & I keep seeing that it is caused by traumatic brain injury, stroke, infection, brain tumors, & neurodegenerative diseases. Although I'm sure some doctors would be quick to tell me otherwise, I'd like to think that I would be aware of any physical brain trauma or strokes. The two things that I keep thinking of are... The idea that P.A.N.D.A.S. causes brain damage. I know that it's suggesting external physical trauma, but if chronic P.A.N.D.A.S. does exist after all & those antibodies have damaged my brain over the years, could that be a contributing factor or cause? I think that "neurodegenerative diseases" kind of falls in this train of thought. Could untreated P.A.N.D.A.S. wreak more havoc in some than we initially thought?? & also, the idea that an underlying infection is responsible for P.A.N.D.A.S. I know for a FACT that I don't have a brain tumor (incompetent as he may have been I refuse to believe that all those MRIs, biofeedback sessions, & God only knows what else wouldn't make my old neurologist aware of that), but what exactly is an infection in the brain?? Is this the kind of thing that we talk about when debating inflammation vs. underlying infection?

EmmaLily ~ It makes me so happy to actually have another patient out there. I'm glad to have someone who can understand where I'm coming from. Vickie ~ One thing that I said to my Mom last night was that I wasn't sure what was motivating me to feel better more; my own happines & wellbeing, or vindication. The thought of being able to walk into his office & say "Nothing is wrong with me today, & I owe none of it to you" is quite the liberating one. Lori Ann ~ I responded to it!