EmersonAilidh
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Posts posted by EmersonAilidh
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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? -
We noticed him over on the P.A.N.D.A.S. boards & are all rooting for him.
he has Asperger's Syndrome, too! -
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 Texas Children's down in Houston, where they tend to diagnose all sorts of crazy stuff at the drop of a hat, so she's openminded.
She completely supported the Lyme & P.A.N.D.A.S. diagnoses (although she admitted she was inexperienced) but didn't think that it ended there. She gave me referrals to my first ENT & my first geneticist. The ENT because she was just dumbfounded as to what was going on in my throat & thought something is wrong with my adenoids, & the geneticist because of all the problems that run in my family (especially the ones in my siblings, some of which I wrote about in the Cholestasis post). I'm also seeing a new neurologist soon (thanks TexasDad!) & hopefully squeezing an appointment with Dr. Rao in before I set off for the LLMD in Colorado on March 3rd.
I'm also really, really needing a psychiatrist right about now... but I'm just so wary of therapists. Yes, I AM crazy! But I'm sick too! Agh. -___- Hopefully we'll find a good one soon? Just a little update.
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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 fine & then launched into a really interesting story that I didn't know about before tonight...
My stepmom has her babies at home. No pain meds, completely natural, the whole nine yards. She's a pro. But apparently when Millicent was born, there was some weird complication & Mihstiegh (my stepmom) ended up having to have her labor induced in a hospital. You can imagine how happy she was about that. When Millicent was actually delivered, the obstetrician found that there was a lot of fecal matter(Meconium) in the amniotic fluid. He said that in twenty years of delivering babies, he had only seen that once before & that the baby died at 8.5 months old. Hardly comforting. They discovered that Mihstiegh had really bad "Itchy Mom's Syndrome" & that her kidneys were failing & had been for quite a while.
When they told her that one of the most recognizable symptoms were hands so itchy that pregnant Moms would scratch them until they bled, Mihstiegh remembered having had that with my ten year old brother Abram (who is Autistic & mentally retarded), the baby before Millicent (who was her only miscarriage after all of these children), &, of course, Millicent. They've had one more child since then, a chunky little girl named Hadassah that we call "Large & in charge". A week before she was born Mihstiegh's midwife realized that she had run the wrong test... & that Mihstiegh did actually have the kindey problems yet again. So far Hadassah is better than fine, though. 9 months old, sitting up, babbling on & on & on...
Could there be a relationship between kidney problems & later developmental problems in kids who make it to birth?
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Three P.A.N.D.A.S. kids born on Valentine's Day?! That's awesome!
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Thank you all oh so very much.
You guys are the best. <3I 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.
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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 could (& admittedly probably is) due to my friend's suicide in December. It's not that I haven't grieved properly or anything like that, it's just that having someone close to you die like that makes suicide a real thing in your mind. It's not just a word, not just syllables & vowels & consonants anymore. It's something that people do. Just like the dishes, just like laundry, just like napping or driving or eating or brushing your teeth. Granted, I certainly haven't tried to kill myself, but although I've buried that thought as deep as I can (& I don't mean that in a bottle-it-up sort of way. Just a not-something-you-need-to-think-about thing) it still manages to rear its ugly head in the dark hours, & it never fails to drag me down a little lower.
The powers that be at the almighty insurance company finally put their foot down & said "No Nuvigil for you!" on Thursday. We've got an appointment on Monday to discuss meds & for me to have an exam. Ovarian tumors & cysts run in my family & I've been having girl problems lately. I'm not too worried though. We had to reschedule a well check that was supposed to be for tomorrow because the DMV couldn't get me in for my license driving test today. I had time, but I was going to be receiving my third/final Gardasil shot, which make my arm hurt. Once your blood pressure is back to normal after reading that YES, I am doing Gardasil, please remember about my families reproductive system problems. I've had no issues that I can directly attribute to vaccines, & as far as I'm concerned this one is necessary for someone at higher risk like me. Not to mention, one of my three bestfriends found out that she has HPV on Wednesday & is currently waiting on an appointment with a specialist because they believe she already has cancer. This is just not a good time for my friends, apparently. :/ Say a little prayer for Danielle, if you would be so kind. <3
My Mom made vegan glutenfree pancakes & cupcakes for my birthday/Valentine's Day. Or, collectively, just "AilidhDay".
We looked at the car I will more than likely be getting this week, tried & failed to get my license, & just had an awesome day. A girl in my art class that I barely knew brought me chocolates. I spent my birthday's eve in Fort Worth at my Dad's house with my sisters yesterday. We took a miniature train ride around the zoo (the nine of us taking up nearly the whole back half of the train, hahaha), ate rice & lentils, & went to the church's evening service. I have a REALLY hard time paying attention in church because it's hard for me to focus on one thing without something else to offset it. For example, I HAVE to have some kind of noise in the background while doing something like reading or even trying to sleep. When a teacher is lecturing, I look like I'm not paying attention because I'm doodling or attacking my fingernails, but it's really quite the opposite. So, in church, when all of those side-thing-a-ma-jigs aren't acceptable, I have a terribly difficult time listening to what the teacher is saying without my mind wandering every other word. One thing stuck with me, though;"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~ Matthew 6:34.
Religious or not, the message is clear. & valuable, at that. Things had been improving at a sluggish pace this past week, hardly noticeable to the untrained eye but hardly ignorable to anyone well versed in P.A.N.D.A.S. & Lyme. After a good day full of family that loves me, that verse really just struck home. I'd love to sit here & tell you all about what it means to me & how it helped to dig me out of that hole, but in all honesty I'm doing my best not to overanalyze all of it. I figure that it's best to just let it be. Besides, as I'm sure the vast majority of you P.A.N.D.A.S. mommies (& Dads, too!) are well aware, sometimes, in fact, MOST of the time when it comes to us P.A.N.D.A.S. kids, things just... click. I don't know why it happens the way it does, you don't, she doesn't, he doesn't, I don't think that any of us do! Something as simple, seemingly insignificant, & completely inconsequential as breaking the yolk of an egg when trying to cook it can send me into a rage that lasts for days. On the same note, something as short & concise as a bible verse can lift me from a months long melancholy. I'm not naive enough to think that this peace is going to last forever or even a long time, but all I know is that I've felt like this all day. I've had a smile on my face from when I woke up in the morning to this very moment, while I lie in bed updating my cyberfamily before I go to sleep.
In a world where the feeling of shoelaces can make you sob, where accidentally touching a doorknob can make you scream, where the color of a passing car can make you downright elated, where every blow of the wind can make you feel hopeless, overjoyed, miserable, panicked, furious, euphoric, hateful, & God only knows what else... just being able to say "I have been happy for the past eighteen hours" (not to mention... I've been AWAKE for EIGHTEEN HOURS!) is the best birthday present that I ever could have asked for.
But, unfortunately, there are still History tests to be taken & I really must be going to sleep about now. I got home later than usual & so now my schedule is all messed up & I'm sure that I'll be paying for it tomorrow. But, if nothing else, I have the hope of today to look back on & get me through yet another day as Emerson.
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No script for Nuvigil yet. Hence the fiasco. :/ bleh,
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I didn't know you had narcolepsy. Did you, by any chance, have a flu vaccine...EVER? The reason I'm asking is that I saw the news last night, and they said that some teenagers are getting narcolepsy from the flu vaccine!!!! Then, they went on to say that "it still helps more people than it hurts!" Can you believe that?
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.
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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.
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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 apocalypse. We got over six inches last week & school was canceled everyday but Monday. We called everyday anyway; they were out of the office. I took one of my Mom's (which are 250 mg, she only had two of a fourteen day trial from months ago left), then only had 75 mg for Friday... then was out. I took the last 250 yesterday because I had a test that I really needed to pass.
Called Monday & talked to a nurse who did NOT seem very happy with us! Mom fielded that conversation so I'm not ENTIRELY positive how it went down... but basically my Mom said we needed my Nuvigil prescription, nurse said we didn't have one, Mom said "Exactly. But she was doing well on them blah blah blah" & this nurse just pauses & goes "She was doing well on them? & how exactly did she get those pills?" in this nasty tone. So glad I wasn't on the phone because I definitely would have been like "Went downtown & some guy in a trench coat gave me some. He looked pretty legit.". She said she didn't see a positive MSLT & told us insurance wouldn't cover it (even though doctor already cleared us...) so she said "He'll call you back." WE called Tuesday only to hear he's "out sick".
If the insurance is going to throw a fit like she said (& which I've heard from many Narcoleptics... The better the medication, the more expensive, the less likely it is to get covered is how their pills seem to work. -___-) should we just say forget it & try a different one? I don't know if I posted about it on here, I know I did on the Narcolepsy Network (only other forum I'm on), but we only got up to one of the lowest dose pills once a day. It made me regain muscle tone & stop passing out, but I was still exhausted. Since it wasn't some miracle cure in a bottle, should I just go a different route & avoid the fuss? I think so.
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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.
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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!
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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!
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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 the gluten-free tag but had "GLUTEN FREE!" right on the package. But when I get home & go to read the nutrition facts while trying to put a lunch together, I saw that "Whey protein isolate" is the third ingredient. Is that okay...?
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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? What grade are you in?" :/ Gotta wonder what it is that makes most Moms & Dads behave so differently.
Stepdad only showed interest when PhilaMom sent us the fliers from the ILADS 2010 conference, but he's been doing much better since then even if, like Mom, he's not doing any research or anything on his own.
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If it was just a WEEK later I would be out of school & could go. :/
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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. :/
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Yes, we're working with Dr. Rao. I talked a bit with Dr. Infante by email, but he is still new to all this & was talking about an approach that was more standardized care & conservative in approach than what I believe we need at this point. And we seem to be a PITAND rather than a PANDAS case - I'm not sure he's there yet.
Anyway, DH & I are still leaning toward just doing the overnight in Dallas - at least for the first one.
Are you still working with Dr. R or are you working exclusively with your lyme dr now?
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.
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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?!
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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.
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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 less than usual. I haven't slept in two days.
Neurologist#1 ~ Well, that's probably from the Risperidone. Insomnia is a side effect.
Me ~ Isn't that what we're trying to get rid of...?
Me, after not having seen him in a year & a half ~ I've never asked you for pills. I've never asked you for help. But I can't stay awake & I need something.
Neurologist#1 ~ Well, stimulants are just not something I just want to throw around & there doesn't seem to be any reason for you to be this tired.
^After having already prescribed me Clonazepam, Klonopin, Xanax, Aricept, Depakote, Risperidone, Mirtazapine, Trazodone, Tenex, & God only knows what else...
Last but not least...
Neurologist#1 ~ You seem well now, so I'm going to run your ASO only because you're asking me to.
Later...
Me ~ How was it?
Neurologist#1 ~ Over double positive. But that doesn't mean it has anything to do with all of this.
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can we print this thread and present it at the next NIMH pow wow??
Can we please?! Hahaha!
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Oh!!!! How could I forget this one?!?! Oh my God!!!
I had a substitute teacher one day in the seventh grade, RIGHT before we discovered P.A.N.D.A.S. & were still operating under the Tourette's diagnosis. I had a twitch with a "bad word" (which is not a common occurrence for me...) & immediately followed it up with the usual "Oh my God! I am so sorry! I have Tourette's!" This sub, who I had literally never met in my life, looked me dead in the eye & said "No you don't."
UM.
DID I JUST HEAR YOU RIGHT?!
The entire class had my back, "No, she really does have Tourette's. Believe me. We all hate it.". But she was unphased & sent me to the office, where I walked in & said "So, apparently I don't have Tourette's....". Never saw that sub working at any of my schools again.
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Another good one!
Very first time I ever passed out was in the eighth grade. Also a substitute teacher. This one was ESPECIALLY awesome because he's notorious for literally not speaking English. No, seriously. Cannot understand it, read it, or speak it. Everyone is thrilled when "Mr. S" comes around because it means we do nothing. Being the cool kid that I am, I was sitting at my desk reading a book when BAM. Out like a light, after at least three years without a nap. I wasn't actually asleep for long, but the first time I passed out also just so happened to be my first experience with sleep paralysis & depersonalization as well. An hour later, I still hadn't moved. When the bell rang & someone shook me to wake me up, I freaked the #### out & started screaming & crying that I didn't know who or where I was... & this substitute just goes...
"Next class."
"WHO ARE YOU?"
"Next class."
"WHAT IS GOING ON?"
"Next class."
"WHERE AM I?"
"Go."
Moral of the story is... subs suck. Well, most of the time.
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?
he has Asperger's Syndrome, too!
Well, looks like I know who I'll be rooting for this season!
Wilson's Disease and neuropsych symptoms
in PANS / PANDAS (Lyme included)
Posted · Edited by EmersonAilidh
Interesting stuff! I wonder if there's some way that we could compile an exclusion list...