EmersonAilidh

Not all of us have active parents. :/ Even after dx.

My counselor offered up a 504 plan but my parents have been worried about how it will look to colleges. I imagine they can't discriminate against the disabled but that's something they wanted to confirm BEFOREHAND. Of course they haven't done it yet though. I also posted asking for suggestions about 504 for kids with Lyme (since that's what I'm seeing doctors for lately, could get documented easier, & attribute most of my school difficulties to anyway). They're ALL documented medical absences. I can think of a single exception to that, & that was a day when my head hurt so bad that I could not stand up. I'm going to see if I can talk to my counselor on Monday about a 504. Because failing a sick kid with a 4.0000 for going to the doctor too much just isn't right.

Wouldn't be surprised at this point, in all honesty. -_________- In my school district you can't be absent more than four times per individual class per six weeks without "absence failing". In other words, no matter what grade you make you don't get the credit. I have fifteen (only technically "absence failing" a single class) & we're only going into the eleventh week of school. But why are MY medically necessary doctor visit absences on the same level as kids who are just cutting class? Are they even allowed to fail a kid with a medical condition for going to the doctor or not feeling well enough to go to school? They did this BOTH semesters last year too, my Counselor at the time just went in & put some special code in for all of my absences that magically made them disappear, but I'm so tired of having to deal with this. I'm a sick kid, I go to the doctor all the time (every other day this week, as a matter of fact) & sometimes (RARELY) I physically can't get to school. Can a school district fail me even though I have a 4.00000 despite my disability & absences??? This just doesn't seem right, but as I said earlier, I wouldn't be shocked.

The only way that P.A.N.D.A.S. could help her case would be to plead insanity, which the vast majority of P.A.N.D.A.S. kids I've heard of wouldn't fit. Guilty by insanity doesn't mean "mentally ill", it means not having any concept of right & wrong at the time. I mean, I know a lot of us kids have problems with that regarding when it's appropriate to throw a tantrum or something, but I don't think most P.A.N.D.A.S. kids (MOST, not all) could extend that into actually killing someone. It's already been mentioned, but it was premeditated. It's hard to draw the line for what is someone's fault & what isn't when psychiatric illness is involved, & it's flatout impossible when all we know about the girl is from the internet. I'm with Vickie though, I hope that P.A.N.D.A.S. doesn't get thrown into this story. :/ Also, hiccups can definitely be a tic!!! I get them. Before the P.A.N.D.A.S. dx I was always so weirded out by my random hiccups. Just one, or a couple, & then no more. P.S. ~ Not all P.A.N.D.A.S. kids without an on the ball parent are gonna end up this way! D:

Original major manifestation was tics. Aren't so bad anymore, but are still here. Forgive my ignorance here, but I thought that all P.A.N.D.A.S. kids did it to some degree? & can someone explain the difference between tics & stims, please?

Not trying to be cocky here but didn't want to leave this thread unanswered. All I know is that I was conversing by the time I turned two. Like, had totally finished learning to talk & was forming "perfect" sentences & holding conversations. I also know I weaned myself off the bottle but I'd have to ask my Mom what age... Never made a B, never made anything less than commended on a TAKS test (besides this last writing one. My handwriting has gotten too bad for them to read. :/), & I passed the SAT for the first time when I was in the seventh grade. I can't remember my score but I was in the 87th percentile & made a perfect on the essay portion. The "gifted" school label down here doesn't mean much but I got tagged in the first grade. I've held a 4.00000 for my first year & a half of high school in all honors classes, including two college social studies ones. Personally, for me, it's really hard getting people to understand that KIDS CAN BE COGNITIVELY IMPAIRED WITHOUT MAKING BAD GRADES. Ugh, Is there any general info on how P.A.N.D.A.S. kids develop physically? I know I developed fast in that regard as well.

Stumbled upon this last night... http://www.sleepeducation.com/Disorder.aspx?id=57 & it got me thinking. "Who gets it? In rare cases, people with a disease that affects the brainstem will get this condition. The disease causes damage to the brain system from areas in which dream sleep originates. This results in narcolepsy. Diseases that may cause narcolepsy include the following: Multiple sclerosis Myotonic dystrophy Parkinson disease Sarcoidosis" Well, we've established that Lyme Spirochetes like braaains (can you hear my zombie voice there? ), but my question is... Are they limited to certain areas or is it just a free-for-all once they get in? A better question might even be... Does anyone know??? I've never read a solid explanation for Lyme Fatigue, & if it can affect the brain stem would it be off base to think that Lyme could potentially be a part of that list? Not trying to suggest that ALL Lyme Fatigue is Narcolepsy, by the way. This is all just yet another rambling thought of mine... Keep in mind here that Narcolepsy does not necessarily imply "passing out". The general image of Narcoleptics is someone who goes from feeling just dandy, standing up straight to asleep on the floor. Such is not the case though. The number one Narcolepsy symptom is Excessive Daytime Sleepiness. Hm... Sound familiar? Granted, "sleep attacks" & Cataplexy (sudden loss of muscle tone) are beyond common IN Narcolepsy, but having Narcolepsy doesn't necessarily mean that you should be prepared to randomly drop at any given time.

HealingTheDude ~ Melatonin did nothing for me. :/ but getting to sleep is no longer the problem. Sleep is the problem!! Agh. MomWithOCDSon ~ PMing you right now! PacificMama ~ Money isn't exactly flowing around here. Once I get a job I'll be able to look into to stuff like that but my Mom wasn't too keen on Under Our Skin being $35. I can't imagine $59 going over well. :/ & also, I've heard/read about the Lyme fatigue. We're only pursuing Narcolepsy/Cataplexy because they run in my family & I have actual passing out/muscle tone loss episodes, which I haven't heard much about in the way of Lyme. I'm about to post something over on the Lyme forum about all this though! I found a mention of Narcolepsy being linked to disorders affecting the brain stem. Hmmm?

EljoMom ~ Stoooop it!!! I don't normally post on the Tourette's forum (sorry for barging in here....) but I saw this on the Recent Posts & had to tell you to stop beating yourself up. Take it from the patient ~ MommyStress alone can not cause Tourette's! I'm not gonna sit here & tell you that stress (of ANY kind, not just from you!) can't or won't exacerbate tic disorder kids symptoms, be it P.A.N.D.A.S, Lyme, Tourette's, or whatever else, but blaming your little one's illness on yourself isn't healthy. Now imagine me as that guy from Good Will Hunting... Sitting across the table from you going "It's not your fault. No, it's not your fault. It's not your fault." & get ready to face tomorrow! <3

Can someone PLEASE send me the link to the Stanford article establishing the link between strep & Narcolepsy?! I had a "Sleep study consult" for my MSLT on November 11th today & I didn't want to bring it up to the doctor without any backup... He just kinda nodded when I told him I had P.A.N.D.A.S. (hey, could have been worse) & told me that Lyme was only a Rheumatological condition. I just shrugged that one off since I'll only be seeing him for the followup for this test & once again, had no backup. He said he was aboard the Narcolepsy/Cataplexy train & I'll be taking an almost twentyfour hour sleep study from Nov. 11th, 6:30PM to Nov 12th 5:00PM! Crossing my fingers that I won't psyche myself out to the point of not sleeping like I did with the EEG last November. & on that note, the EEG scheduled for the same day was canceled until we get THESE results, which should be in about four or five weeks. Hate waiting. Until then, I have a Chemistry & a History test tomorrow, so I am headed off to bed for another unrestful night's sleep. I hope you all have a good night! Just a little update to ask that question & let y'all know what was going on. <3

Coconut is my second favorite flavor. Yay me. I'm guessing Almond Joys don't count? (Ha - ha... ) & I don't eat soy anymore! Besides in soymilk. Which is necessary because I find rice & almond milk repulsive, & I don't drink it often anyway. When all of the mock meat products went out the window so did 99.9% of my soy intake. That makes me sad about the soy being similar to wheat though. :/ Part of me is tempted to try it & just see if it makes me feel bad, but we're celebrating Halloween that night so that might not be the best idea.... Hmph. Tofu it is, I suppose. Also, just checking, but Caramel Coloring isn't safe either? Mom's been getting better at checking ingredients (finally realized that it doesn't always say "GLUTEN!" with a bunch of arrows pointing to it) & was nice enough to buy soy sauce without wheat in it, but sure enough there's Caramel Coloring, which I normally avoid.

Expect a prayer from Texas tonight. <333

I don't have any experience with IEP jerks but I'm sorry!!! Just don't give up. My intermediate school (fifth & sixth grade) just kinda stuck me in there on bad days for the sake of the other kids, not myself. I was a "distraction". Funny how quick they are to throw the kids who DON'T want it in there, & deny those who do. UGH. So confusing!!! I don't know exactly how old your kiddo is but maybe getting letters from the other kid's or kid's parents could help? Not trying to make it sound like he's a disruption in class, but if you had other parents/kids from the classroom on your pro-IEP side maybe that would help? Just a suggestion. Don't really know what I'm talking about here though. :/ Tomorrow will be a better day!!!

I'm new to this so bear with me here... But I've heard that congenital Lyme is possible (if that's what you're asking). I'd send you a link but the only ones I've read have been from Google, hahah. Sorry I can't be of much help. :/

That's what I'm saying though. I'm gonna ask the people there, obviously, but I figured someone here might know. Some of their foods have "Gluten" in the ingredients. Most of the ones with soy protein don't. I know I was not a happy camper when I realized MorningStar Farms & wheatgluten were best friends, so I was looking out for it & it's not in the ingredients list. We'll find out Saturday! They have tofu stuff too, I just miss my veggie meat. D: Thank you AmyJoy!

Thank you Linda! & Stephanie too. I'll ask them when I go! Some foods on their online menu actually just say "Gluten" in the ingredients, so I'd think the ones that don't would be A-OK but better safe than sorry.

Mary M ~ I always find it funny when you guys talk about how I verbalize what none of your kids can to you because I know I sure don't say any of this to MY Mom. She's just as in the dark (okay, let's be honest here, a whole lot deeper in the dark...) than any of y'all with your kids. I think it's just easier to talk/vent like that when it's not your parent, ya know? Priscilla ~ I am grateful for being different, &, not to be haughty, but for being bright as well. If nothing else all of this has taught me what's REALLY important & given me a good perspective on everything, better than most girls my age have. I know it will pay off in the long run, but on nights like these past two it's hard to think into the future when the present, well, sucks. Today is a good day though. EAMom ~ I'd teleport you some PinkBerry if I could. I wish there were more people in DFW. I can really only think of three besides myself. D: Vickie ~ I have asked myself that exact same question! Everytime I hear "What doesn't kill you makes you stronger" I just think "Alright... Strong enough now. Don't really want or need to be any stronger. Got more than my fair share. Go ahead & give some to someone else some strength today.." At least I have the "catty teenager" excuse. People y'all's age should know better. If it helps, there's a fifteen year old in Texas who thinks you're pretty great. Tired Mom ~ Bounceback achieved. Reminds me of a quote I love. "You won't get better until you're worse." I think everyone has days like that, it's just not helped by a heap of psychiatric issues & a lack of friends. But, like I said, I have cybermoms. All of my friends' (sounds weird saying that on this discussion but I DO have some, believe it or not) computers have met Latitudes.org. SarahJane ~ I like you. I'm glad you joined this forum & I hope you stick around. I know that being a loner can lead to some great thinking or whatever, but that's no consolation when you're eating lunch alone at school or spending Friday night with a DSM-IV. Every now & then I have good days like today (gfree pasta at Olive Garden? Yesplease. Only a few hours left. ) like today & I realize that in ten years it won't matter who I sat with at lunch or who I spent my Friday nights with. I understand & have dealt with things girls my age could never dream of, & in the end it's true that the meek will inherit the world. Thank you!!!

I'm gfree & vegetarian, not quite vegan (only thing keeping me from that is boiled eggs, pretty much), but they opened a restaurant up the street called Loving Hut that is all vegan & looks awesome. A lot of their food is "mock meat" though, & I had to throw out all of my MorningStar Farms mock meat foods because they all contained wheat gluten. I went online & all of this restaurant's foods just say "soy protein". Is that glutenfree? Or does that have wheat gluten too?? I dunno. I'm confused & I have a feeling that if I asked the people there they wouldn't know, haha.

Lots of LLMDs do ART testing since, as someone said, some kids just don't make antibodies (especially P.A.N.D.A.S. kids who are already immunocompromised) & most blood tests are just crap. I'd wait until seeing the doctor.

I emailed Time three times asking them to do a P.A.N.D.A.S. article.

Hate to break it to you, but there's no such thing as an LLMD in Texas. PM me though, please.

Hopefully you can hear the sarcasm dripping off that title, haha. Third Friday night in a row spent with me, myself, & I. Can you imagine the thrills? Friends suck with P.A.N.D.A.S. I mean, I have them, but they all suck. Just being honest. I think everyone sucks to some degree. Been down all day, seeing the bad in everyone & myself. Day three of a monstrous headache that just won't peak & break. Hip popped so loud in class today (while sitting down, doing nothing) that all the kids freaked out trying to figure out what it was. Has Mom made an appointment with the physician to talk about co/secondary Lyme infection testing? No, of course not. Has she opened Cure Unknown? No. She did read one of two articles that I printed out for her, though. I suppose any progress is still progress. The thing is just that no one thinks like I do. Like we do, I suppose, although I doubt any of us really think like eachother either. Having friends are one of the few "normal" things we can do (I use the term "can" loosely here, because obviously I'm not doing too well), so it's worse than just spending a night alone when I do. It feels like losing that little bit of normalcy I've been whiteknuckling for all these years. No one understands, but after a while you stop expecting people to & so you settle for friends that at least keep you smiling. Mine aren't too good at that. It's not easy being weird.. The girl that can't eat pizza, can't sit through or pay attention to a whole movie, can't throw herself into big social situations like parties. What am I supposed to say when people invite me to the local lake? "No, sorry, can't go today. Too terrified of germs & parasites." *click* On good days I CAN do big social pow-wows. I can light up a room & befriend anyone when I'm myself, which is rarer than you could imagine. But on bad days, which are really just normal days, there's no use embarassing myself trying. It's not like I get invited to anything anymore, but if I did I'd find some reason to say no. Sometimes I'd much rather feel like this on my own than surrounded by people who don't get it, but sometimes I wonder if a "shoulder to cry on" would be nice. & then I remember that I'd never put my head on anyone's shoulder because I don't touch people, & then I remember why I don't have one to cry on in the first place. I lost a friend this week. We've been friends for about seven years, me & that girl. As long as I haven't eaten meat. She told me she was tired of me complaining about "my problems" & offering no solace when she was down. Empathy is not my strength. I'm SORRY that I can't understand what it's like to be upset about so-&-so commenting your boyfriend's picture on FaceBook the same day that so-&-so called your shirt ugly. I'm sure you Moms understand that. I've grown up being worried about my next appointment. How much blood they're drawing this time. By the time I was twelve my main worry was timing my fourteen pills a day right. Making sure I made it to neurobiofeedback on time. Staying up at night researching diseases because no one else was. I'm SORRY that I have absolutely no idea what to say to you when you come to me upset, because all I've ever wanted was to be bothered by the normal teenage things like you are. When my friends are good, they're very very good, & I'd never deny them that much. Every now & then we hang out & laugh & everything is dandy. But more often than not I'm texting them & not getting replies. Getting told they can't hangout. Seeing photos of them on FaceBook at parties on nights they said they couldn't hangout. Reading & hearing about all of the fun stuff they do that I wasn't invited to. I mean, I know I can't & I probably wouldn't have gone, but it would be nice to know someone thought to invite you. Which, I know they don't, but I guess what I'm trying to say is that I'd like the opportunity to decline. That sounds stupid, but whatever. I got a 20% off coupon for a local little yogurt bar thingie. Like Pinkberry, only a knockoff. I invited three people. Two said they would go, one had a date (Remember those things?? Hahah.). The other two never texted me. Well, they texted me to tell me they had gone to do other stuff with eachother & some other people. I didn't get invited, & I didn't go to the yogurt place either because I couldn't bear going alone. It just makes me sad. Sorry for the rant. Bad, bad day. For now, I'll be spending Friday night with Wikipedia, Discovery Health Channel, & my CyberMoms. <3

You're new here, but I already like you a whole lot. Hahaha. Your posts always make me laugh. Where do you live?! Surely there's SOMEONE on here he knows of a doctor in the area. There's a list of doctors by state on here somewhere, but it's pretty disorganized & is rarely added to since it's not pinned. I don't know if there's a specific title needed for IVIG help, but I'd just call every pediatrician/neurologist/immunologist/whateverelseologist going "P.A.N.D.A.S.? P.A.N.D.A.S.? P.A.N.D.A.S.?" (kinda like the seagulls from Finding Nemo? ) until one responds with something other then "Yes, the cute cuddly bears?". Persistence is key. Don't give up! Anyone who knows their P.A.N.D.A.S. ABC's would be happy to help you with a doctor like Dr. K backing you up. <3

Oddly enough, I wasn't the one to bring it up or ask about it, my counselor at school was the one to offer it yesterday. It's more for when I'm going to have to travel for doctors, but I just wanted to see if anyone else had school accommodations for Lyme. I ask because while it's easy to think of the problems, it's pretty difficult to think of solutions (even if temporary ones) for them. He's an extremely understanding man (fairly sure that he's knew & the public school system has yet to break him), & I was just wondering if anyone had suggestions or experiences with what has worked/hasn't worked for their kids. Thank you all in advance! <3 Also, are co/secondary infection tests as inaccurate & unreliable as Lyme testing?? Are they run through LabCorp or Quest, & are they even worth running if they are? Or is this something that you just need to go straight to IgeNeX for? I read about the LymeTAP financial assistance today, & that would make IgeNeX a MUCH better possibility. It would be nice to just get the whole battery done (Anaplasma, Mycoplasma IGM, Ehrlichiosis, Bartonella, Babesia, whatever else...) at once, but is that at all possible? I have a general physician who is very on board with all of this so getting someone to sign off on the tests wouldn't be a problem, I'm just wondering how difficult it would be to actually GET them. Keep in mind that I'm in Texas, where (debatably) Leprosy is preferable to Lyme. -___- __________________________________________________________ Also! Anaplamsa doesn't have to present as pneumonia, right?? I can't find much about that question online but that was my understanding after reading Cure Unknown. A nurse at some doctor's office said otherwise on the phone though. Confused now.

This is awesome news!!!