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Everything posted by EmersonAilidh

  1. Haven't been getting on much lately. It's been a bad time & I've also been SWAMPED with school work. I found out today that I still have my 4.00000 & that I'm 16th (out of 621) in my class. I had one of the top 95 PSAT scores in the district & the district is paying for me to attend a PSAT/NMSQT (National Merit Scholar Qualifying Test. But they're the same test.) prep course because they think I can make National Merit. I also made a poster over Medical Psychiatry (had to choose a health-related career) & my teacher is letting me present it on Rare Disease Day & talk about
  2. Interesting stuff! I wonder if there's some way that we could compile an exclusion list...
  3. Love hearing updates about you & Pixie. Been wondering how you guys have been lately. "Low frustration threshold" is an AWESOME way to put it, by the way! I always have trouble finding the right words to tell people that I'm just perpetually PO'D. Yours sounds much nicer. So glad to hear y'all are getting somewhere with the Lyme treatment & are pursuing the adrenal issues! Leave no rock unturned. That's how the saying goes, right?
  4. We noticed him over on the P.A.N.D.A.S. boards & are all rooting for him. he has Asperger's Syndrome, too!
  5. Haven't been to my pediatrician for anything but strep tests in so long they still had Sydenham's Chorea on my file, hahaha. The well check (because apparently they still do those at sixteen years old...) was with the same nurse practitioner who gave me antibiotics for the "strep" that came back negative on both the rapid test & the culture. She said today that she had literally no idea what it could have been but strep. We talked for a long, long time & she updated my file. She knew about P.A.N.D.A.S.. Said she "hadn't seen it in a while", but did believe in it. She used to work at Te
  6. My Dad & I went out for my birthday dinner tonight. Any of you with Valentine's babies understand why birthday dinners always come the day after, haha. Yay for hummus & red coconut rice curry. Anyway. I started asking about my little sister Millicent's hearing. I know I've talked to Peggie about her, but Millicent basically just speaks really, really weird & has a hard time actually verbalizing stuff. She's three years old & no one can tell whether she's TRYING to talk & just failing or whether she's just not making real words sometimes. Dad told me that hearing was fi
  7. Three P.A.N.D.A.S. kids born on Valentine's Day?! That's awesome!
  8. Thank you all oh so very much. You guys are the best. <3 I made a post about today/other recent update stuff but I will be back on tomorrow to talk more. ~ WorriedDad ; I would bet that I do, hah. In highschool it goes from Cupid jokes to "How can YOU be born on a day like Valentine's?!" though, hahaha.
  9. Today is my sixteenth birthday, & things are looking up. I'm not a fan of speaking too quickly for fear of "jinxing" things, but I'd like to think that this most recent exacerbation is coming to an end. Comparatively speaking it was short (although who knows how long I've really been down with the stupid strep tests...), but it was the second worst one I've ever had overall. As far as all the emotional problems go, these past couple months have been #1, no contest. Although I don't know how much of that is due to the actual intensity/severity of the exacerbation & how much of it co
  10. Never ever had a flu vaccine! EAMom asked me the same thing. Always thought they were dumb. Did get swineflu about a year & a half ago, but no vaccines. Being sick for a week < Feeling like someone's been beating you with baseball bats all night everytime you wake up. Supposed to be getting my license in four days... which won't be happening if I don't have my pills. :/ I slept through school today, got in a car wreck after school (I WAS NOT THE ONE DRIVING!!!), came home & napped. Will probably do about the same tomorrow. Minus the accident, hopefully.
  11. THANK YOU SO MUCH FOR POSTING THIS!!! I have been having a not-so-stellar experience with my new neurologist at Children's! I will definitely be making an appointment with him.
  12. I don't normally but my Mom does & since I didn't have my Nuvigil this morning so I didn't leave my chair in the living room all day. School was cancelled, AGAIN. Thank God. Anyway... There was a guy who auditioned named Jason Durbin, he was diagnosed with Tourette's & Asperger's around the age of nine. Screamed P.A.N.D.A.S. to me but I can't find him on FaceBook. Well, looks like I know who I'll be rooting for this season! This Nuvigil situation is making me very, very mad. When Texas gets half an inch of snow, we stock up on canned goods & prepare for the apocaly
  13. One of my first tics was a kind of grunt. It sounded like a piggy noise. I can do it voluntarily but I don't know anyone else besides my little sister (3yo, barely any speech, has NOT taking to potty training in the least bit. I think P.A.N.D.A.S. or something is up.) who can make it all.
  14. We suspect I was/may still be a carrier. Rapid tested, cultured, & blood tested positive for fourteen years with NO symptoms 80%+ of the time. If you were a strep carrier & felt symptoms, that would be awful!
  15. Whaaat? I am so off!!! I've been avoiding whey this whole time! Wow. Well, I feel totally stupid now. Awesome. Hahaha. Thank you though!
  16. My local grocery store went glutenfree about the same time I did, haha. It was amazingly convenient & completely coincidental. We have a pretty nice sized organic/vegetarian/glutenfree/otherkindsofhealthnutty section, & everywhere else in the store gluten-free items are labeled with a special little tag. Well, the 10 for $10 special on Larabars finally ended ('twas a sad day...) & I was scoping the natural section for a new granola type bar thing. Soyjoys were 7 cents a piece, so I got some of those, but I also grabbed two "Think Thin" bars that were a dollar & not only had t
  17. My Dad lives about half an hour away. The first time I went over there after going gfree he was like "I made sure to get a cheese pizza for you!". Felt SO bad, but the man's just clueless. I gotta cut him a little slack though, when you've got nine kids who basically ALL have medical problems I can understand why you don't have room in your head for all of them, haha. I love my Dad way too much to even explain, don't get me wrong. One time he was on a phone call while I was over there & after he mentioned to the caller that he was with me he looked at me & went "How old are you again?
  18. If it was just a WEEK later I would be out of school & could go. :/
  19. Wait. So, as a patient or just someone who's interested... Can you go to this? You don't have to be a doctor or anything? Sorry for the stupid question. :/
  20. I haven't done IVIG so I can't help you much there. :/ I haven't seen Dr. R yet! Making an appointment once this weather clears. Can't even get a hold of my general & I took my last Nuvigil this morning. D: Seeing Lyme doc March 3rd.
  21. They did one of these on the Pepsi Refresh page & I thought I'd bring it on over here. If I could go back... I'd tell myself that there's no point in wasting time trying to convince doctors who don't even want to believe you. I'd remind myself that I got two tick bites before all of this started! I'd tell myself that if the first benzodiazepine doesn't work... & the second one doesn't work... then the fourteenth one probably won't either. What about you?!
  22. Sorry I'm posting so much but there are just so many stupid comments!!! We had a substitute in 9th grade Biology... I did the worksheet he asked me to, & when I turned it in told me "I can't take this. I can't read your handwriting.", like he was even gonna be the one grading it!!!! Made me stay after class to rewrite the whole thing.
  23. Gotta love Neurologist#1... Neurologist#1 ~ Well, it's not exactly conventional but we're gonna try this pill called Aricept. It's used for Alzheimer's. Me ~ ...did I just hear you right? Me ~ Doctor, I couldn't sleep & nothing helped. Now all I do is sleep & nothing helps. Neurologist#1 ~ I think you have Epilepsy. Me ~ Wait. Are you listening to what I'm saying...? Me ~ I'm not sure how okay I am with the fact that Trazadone metabolizes into mcPP. (the closest chemical piperazine to MDMA/Ecstasy) Neurologist#1 ~ Stay off Wikipedia. Me ~ Doctor, I'm sleeping even l
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