EmersonAilidh

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. ____________________________________________ 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.

Me ~ "Do you believe in P.A.N.D.A.S.?" Neurologist1 ~ "The only pandas I believe in are black, white, fuzzy, & live in China." Eleven year old me ~ "I sleep three hours a night, & sometimes not for three days at a time." Neurologist1 ~ "Well, Napoleon Bonaparte didn't sleep much & he was okay. You'll be fine." while handing my Mom a prescription for Klonopin. Me ~ "Well, I've had untreated Lyme Disease for five years." Pulmonologist ~ "Sounds like something you should be telling a rheumatologist, not me." Me ~ "Doctor... I had two chemical burns." Neurologist2 ~ "Yes, I understand that." Me ~ "So... why are you even looking at the results?" Neurologist2 ~ "Because we'll have to redo the MSLT." Me ~ "Why did I get burned?" Neurologist2 ~ "I don't know." Me ~ "Will I get burned again?" Neurologist2 ~ "I don't know." Me ~ "Can you do anything differently?" Neurologist2 ~ "No." & most recent, although not necessarily P.A.N.D.A.S. related... My Mom ~ "Hi, I'm calling to get a note for Emerson. She had a fever yesterday & couldn't go to school today." Nurse ~ "We can't give her a note. We haven't seen her in 24 hours." My Mom ~ "You saw her Friday... & told her she had strep. It's Monday. She had a fever last night." Nurse ~ "Oh, you wouldn't get a fever that late with strep." Me ~ "You seem to think she's asking you a question when we're really just telling you I had a fever." Nurse ~ "Can't give you a note."

I didn't get the vaccine! I just got swineflu, haha. Interesting though!

Things have been worse than usual. I do my best not to post negative stuff on here (although I find so many of my posts starting off with that very phrase...), so I will hopefully be able to share something optimistic by next week. After a weekend in the high 70's, the wind chill is at 0 today. I hate freakish Texas weather.

I don't know what facility Dr. Infant in San Antonio uses, but I've heard great things! Are you seeing Dr. Rao in Dallas?

Dr. Rao also tests for immunodeficiency. Haven't seen him YET but I've never heard a negative thing.

I'm not seeing Dr. L but I just wanted to say that you are the sweetest!

Dr. Infante!!!

I don't think I've talked to you since you told me about this very forum, Stephanie!!! Thank you so much.

I... am very confused about the "strep". I posted about it on the P.A.N.D.A.S. board. :/

I'm on Day 8 of 150mg Nuvigil for the Narco & so far it's not doing much good. I'm not EXHAUSTED (head drooping, slack muscled, falling over, slurring words... THAT kind of exhausted) but I'm still super tired & napping multiple times a day. That is encouraging! & I have gotten to that point too. There's no point in fighting it. I love my Mom.

Throat culture came back today... Guess what? Whatever the #### was at the back of my throat in that photo, it wasn't strep! As a sick kid, I'm really good at knowing how I "feel". For example... My stomach doesn't hurt the same way everytime. When I have stomach issues I can tell if I accidentally ate gluten, some sort of meat product, or caffeine. I posted a little while ago that I was waking up with my stomach hurting in a way I'd never felt before. Since that post, that's been happening all the time, & not only at night. I figured that the way that I've been feeling since Halloween, a new different kind of "bad" entirely, was just how normal kids felt with strep. I guessed that my luck in the "asymptomatic" department had run out. I feel lightheaded & dizzy. For the first time in years, I feel "not here" & have had two real episodes of depersonalization that I haven't told my Mom about. My "throat of steel" burns. Today, the sun was BLINDING. I feel like I just got beaten down by a group of men after running a few miles even though I started a Nuvigil prescription a week ago. I was so sure that I've had strep this whole time, but I'm not too terribly sure why I decided to take a photo of it. I'm happy that I did though, because there's OBVIOUSLY something back there (it's basically gone on day 4 of Suprax), but if it's not strep doing all of this... what is it?

I definitely will keep you guys in the loop. & I haven't gotten worse with the Nadolol. It has made a dent in the headaches.

I tend to hang out too much on the P.A.N.D.A.S. board & forget about this one. Sorry. :/ We have an LLMD appointment on March 3rd! Very excited about that. Going to an extremely P.A.N.D.A.S. savvy immunologist in the area to do an immuno work up sometime before then. He doesn't book far out so we haven't rushed to make an appointment yet. Much progress on the home-front... although I'm unsure how I feel about that. Got my Mom & stepdad to sit down & watch Under Our Skin with me. Did all the discussion questions & everything. It mostly helped them understand why getting treatment is so hard but it also helped them understand just how debilitating it could be. Mostly thanks to Mandy's case. On the downside... my Mom literally immediately after the documentary ended decided that her depression was actually misdiagnosed Lyme. That one was thanks to Dana's case. Far be it from me to doubt the validity of anyone's health concerns, but it's just annoying when you have to fight tooth & nail to try to get your Mom to make you an appointment or to talk to one of the online Moms or to even freaking google something, but when she thinks she suddenly thinks that she has it everything is different. She theorized that we've all had congenital Lyme since my great-Grandma (who had Alzheimer's & Parkinson's. Could have been Lyme but no one knows), although I think I did my very best to assure her that that's really, really, really unlikely since none of us are nearly as disabled as your typical congenital Lyme kid. After four months of asking her to, she's finally picked up Cure Unknown. I'm glad that she's becoming more interested & knowledgeable, but it just really sucks that she only seems to care when it applies to herself. Hopefully everyone can understand why that would be frustrating. I'm not trying to be ungrateful. It's just so aggravating. In other news, 400mg Suprax for ten days thanks to a strep throat. Still taking 40mg Nadolol daily for headaches. Still fully believe they're encephalopathy/Lyme headaches but haven't gotten any answers regarding that. Literally zero progress in regards to the Narcoleptic symptoms. Well, depends on how you look at it. Neurologist was a royal ##### & told me I'd have to take the test again even though they still can't tell me why I got burned & won't do it any differently. General physician prescribed Nuvigil just to keep me awake during school & to make sure that I'm safe driving. So far... still napping. If I'm being totally honest, still miserable & hating everything. Hopefully that's the strep talking, though. All in all, good things are coming. Just gotta wait.

Thank you Nancy! I'll stay away from Bonito (which means pretty boy in Spanish? Haha!) but I will look at some brands! & bananas are a great idea! Colleen ~ I can't gargle. Not like, I think it feels weird & won't do it, I just CAN'T gargle. Believe me. We've tried that too many times to count over the years. I've found that just holding the salt water in your mouth doesn't do much good either. Thank yoU!

I think it would be really hard to differentiate between regular P.A.N.D.A.S. symptoms & Conversion Disorder symptoms, especially if other issues like Lyme are present. Not discrediting it, because it's a really interesting theory! I wonder if anyone on here has dealt with symptoms as severe as some of the typical Conversion ones. I haven't heard of anyone becoming paralyzed (Conversion or otherwise) or anything of the sort, but with the brain involvement & other pyschiatric/mental problems I don't see why P.A.N.D.A.S. & Conversion couldn't be linked! Just wanted to add this. I spent a lot of time Conversion Disorder this past semester with my Psychology teacher, mostly just because it's one of the ones thrown out by ignorant Lyme docs. Like hypochondriasis, Fibromyalgia, & CFIDS. Conversion Disorder is when the mind reacts inappropriately to mental stress. Imagine if someone close to you passed away & instead of making you feel sad or cry or whatever your mind is SUPPOSED to be doing in that situation, it reacted by making you unable to use your legs. It's just like all of your wires are switched & sending the completely wrong signals.

I'm glad to see all of the discussions about using new treatments like this!

I am praying too, Peg! Sending happy thoughts your way. I saw your comment on my post & I was like "Oh no, why is she back on here?" :/

MomWithOCDSon ~ Not dairyfree. Won't drink milk but that's just because I think it's beyond gross. Yogurt is an awesome idea! Do the acids in the fruit smoothie not bother your son's throat? I tried to drink lemonade yesterday... Didn't go too well, haha. & Miso soup sounds like a good one too! Throw some tofu in there. Is that not made with some kind of meatbroth though? I have no idea, just asking. Thank you! Peglem ~ Me & Allie have that in common! I've ALWAYS hated hot drinks. Not just "hated"... literally can't drink them. I have no idea why. At the worst of the Narcoleptic symptoms I would make coffee the night before & then put it in the fridge overnight. Thank you for the idea though! I'll see if I can't figure out something with honey & lemon that's cold. If I do I'll let you know!

Already asked PixiesMommy (my go-to girl for food questions) but figured I'd post on here for more suggestions. Obviously I've had strep a whole whole lot, but I never have to accommodate a sore throat like I do this time! What goes over well with your kids? Cos I'm honestly clueless here. Rice noodles were easy last night, but that's about all I've got.

It is so awesome to see a teacher on here!!! I'm a 10th grade P.A.N.D.A.S. kid. As BrownEyesMom mentioned, does their handwriting have anything to do with it? Most of our handwriting is really weird... I know mine is & I can't think of any others I've talked to who have normal handwriting. Most teachers just whine & moan about it so more often than not if I know a teacher isn't going to read it (which obviously isn't the case with you but just saying) I won't even bother to try. That's because writing is a HUGE anxiety/OCD thing for me & lots of other P.A.N.D.A.S. kids. I don't feel comfortable speaking for others, but for me it's not so much about the actual writing as it is the pennmanship. I'll write a letter & have to erase it three times before it's okay. By the time the paper is ready to be turned in, it's a mess. That sounds so petty, but if you've had experienced with us you know that little things can be a big deal & lead to attacks. I had another OCD problem with writing/reading in elementary school. I would only read phonetically. I KNEW how to say "ship" & "chip" but when I saw it it would be s-hip & c-hip. So I just avoided seeing words for a long time. These very well might not be your student's specific problems, but I hope they provide some insight into their behavior. Thank you for coming on here.

Kbossman1 ~ Sounds exactly like my situation! So strange... I wonder if that's the "old bacteria" part. I've always wondered if I just have some weird chronic GABHs (ALWAYS that kind! ALWAYS. My ped was amazed) infection that used to come & go with the constant positive tests & subsequent antibiotics, but when I stopped going to the pediatrician as often it was allowed to fester, get old, & stop making that stupid enzyme. I mean, seriously. There's no telling how long it's been hiding out in my throat at this point. I have been BAD off since November & I even mentioned my Mom & Grandma getting unexplained strep. When someone in the fam gets strep, we just kind of assume it's my fault. I'm glad my pediatrician is like that too! TamisTwins ~ Same here! I'd go to the doctor... Test positive. Get some antibiotics. Come back. Test positive. What does that mean?! I thought that was all in the past but I know it's not now. Did you ever get any answers? BrownEyesMom ~ It's good to have those little markers! I've always known it's time to get a test whenever my emotions go haywire. I mean, at fifteen my emotions are always pretty out of wack but when I have strep it's just astronomical. I'm glad I know to look for these little white bumps now though! A little more reliable, haha.

PhillyPA ~ The nurse told me that the rapid test checks for a certain enzyme that is a "waste product" of the strep bacteria. She said that sometimes certain infections can be either too new or too old to be releasing enough (or any at all) of this enzyme. She also said that some infections are just weird. & if you're looking for weird infections... I'm your girl, haha. I think mine have turned up negative these past three times because they were too old. I stopped seeing my pediatrician regularly because I started seeing so many specialists, & with how often I'm asymptomatic I can't help but to wonder about how long that strep must have been festering to make my "throat of steel", as the family calls it, hurt. Vickie ~ I know, haha. Strep for fourteen years, remember? Thank you though.

Ope. Well, I feel stupid now.

Got six days of Z-Pack (can't remember what dosage...) for an "upper respiratory infection" (that I'm now sure was strep like I thought it was!) in either late November or early December. No proph. abx after the surgery in late December. They are WHITE! I'm gonna see if I can snap a picture!