EmersonAilidh

Sorry, just now saw this! I'm bad at checking replies. :/ I imagine that the limpness would be common, I know it's a part of my rages, even though I haven't seen it talked about much. I think it's just because, for me at least, I can tense all of my muscles & lock all of my joints for however long the rage lasts. I don't think the limpness is really a symptom in & of itself so much as just a result of how physically (not to mention mentally) exhausting a rage can be. I know that after a bad rage, the ones full of crying & screaming & general chaos, I just... lay there. Not really feeling anything in my head & not very able to move. I imagine my body's just mad at me, haha. I hate saying it so bluntly because it sounds so odd since I normally come off as pretty well rounded on here, but my rages are only taken out on myself. They start with digging my fingernails into my skin, pulling out my hair (head hair, eyelashes, & eyebrows), then get to the joint locking, which is normally in my knees, elbows, & fingers. I can do "finger locking", which is really weird. The joint locking is normally accompanied with really bad neck stiffness. The rage normally ends with hitting my legs. I wasn't able to wear skirts for a while because my legs were so bad off. I've bought fake nails (they're duller & can't do any damage when I rage), draw my eyebrows on, wear fake eyelashes & hair now to try to balance everything out, if that makes sense. & no, I can't talk. Well, I can't like, have a coherent conversation. I normally just run up to my room & whimper/cry/yell. Sometimes it'll be an actual sentence or something, but more often than not it's just mumbojumbo. :/ About to go add a better description to Amanda's "What does a rage look like?" discussion.

I was on way too many meds when I was taking Risperdal/Risperidone to really attest to its effectiveness, but I do remember not having any rages that whole time. It's normally for Schizophrenia, but doctors aren't very scared to prescribe it, especially for tics.

Don't have any antibiotics or dosage advice, but just wanted to offer my condolences!!! If nothing else, I'd try some Valerian root to help her chill out. I used to drink it in a drink so I don't know about the dosage on that one. If the Ativan's not doing the trick though, then I dunno. :/ Feel free to message me anytime you need to vent! I understand rages & following limp stages pretty well, if I do say so myself. I'll pray for you tonight.

When all else fails, CareNow. Depending on your insurance it can be a little pricey but if you're as sure as you are that your kids have strep, it's probably worth it. It might just be the one around here but they'll give you antibiotics without having tested positive for anything. The past two times I've been up there my rapid strep has been negative (Only two negative swabs ever. One negative titer.). The asked if I wanted to do a three day culture, to which I responded "Will it even change the antibiotics I get?" & they've told me no. I've walked away with Azith & Z-Pack both times. Sound like some kind of junkie, God. -____- My advice... DUMP THE PEDIATRICIAN! Sure, more doctors need to be educated about P.A.N.D.A.S., but there's not much point fighting & arguing with a doctor who obviously doesn't WANT to get it! Because, God forbid we're right. It's just not possible. I mean, come on now. A patient knowing better than a doctor? Pffft.. You must be crazy! Have you tried finding a specialist in your area? Even if you have to travel a bit, an appointment far away ever six weeks or so might be worth it if it's a doctor who really understands & knows what he's doing!

I'm so glad you've joined this forum. You are very helpful & full of information. Thank you.

EmilyEmilyEmily. My favorite P.A.N.D.A.S. sister. EKG went perfectly fine! Thank God. Hahaha. Surgery tomorrow at 3:15.

First & foremost... We got a LLMD appointment!!! It's on March 5th. I figure after five years of waiting another two & a half months won't kill me. Thank you oh so very much, Linda. Also, is it "a LLMD" or "an LLMD"? That's always confused me. Oh well. Waiting for the callback from the sleep doctor, but we're going up to the hospital for an EKG today so we're just going to get the results ourselves no matter what. I'm having surgery to remove the ranula on Tuesday, & the EKG is just a pre-op one since I had some Long QT issues that we're never really fully looked into in 2006. Cross your fingers that for once everything is just totally normal!!! Ugh. I don't know if I've mentioned this on here or not, but I went onto the Narcolepsy Network for advice after the disaster MSLT & found five members on there (in my first visit) that had gotten Narcolepsy from Lyme. Just thought that was weird! No one with P.A.N.D.A.S. though, although they do talk about the Stanford Strep article. I feel like a messenger, hahah. After the surgery we have an appointment with the Dallas neurologist on Jan 5th. Don't really know how I feel about her since we've only seen her once, but all I know is that the medication (Nadolol for headaches) is doing a whole lot of nothing. Oh well. Probably going to make an appointment with Dr. Rao in Plano to test for immune deficincies (sp?) before the LLMD. Figured we'd just get that out of the way. I think it was Trudy who told me to do that... So thank you! Breaks from school mean one thing above all else for me; SLEEP. When I don't have to wake up for school, all bets are off. Slept ten hours Saturday night & took two two hour naps after that. Slept twelve hours last night & I'm already ready for a nap after having been awake for two hours. Two days I started crying because we had no soymilk & I was just sitting there thinking "What is WRONG today?!". Then I had some bad motor tics & I knew something was up. So of course, my Mom goes "My throat hurts.." but won't go to the doctor. Ugh. She's been doing a lot better about most things. I've already gotten two upper respiratory infections this winter, pretty sure I'm getting/have strep now. Who knows, with my asymptomatic history I could have been the one who gave it to her. I wish she would just go to the freaking doctor though!!! Oh my God. Whatever. -__- Counselor said we can start on a 504 even with just a Narcolepsy diagnosis. So hopefully that pans out. Can't remember if I mentioned that the doctor who did the ART won't even put into writing that he has the tests, so no Lyme 504 for me as of yet. My Mom owes the psychologist who diagnosed P.A.N.D.A.S. some money & won't ask her for a letter of documentation. Waiting for the LLMD as far as all of that goes. I have been getting out more lately, even if for no other reason than I'm forcing myself. Better than not leaving at all, I suppose. I've hung out with friends two of the past three days. Much better than not leaving the house for six weeks. Granted, these are friends that have been around for a while & know what's up. I don't know when I'll be ready to be in big social situations again. I've been playing the piano again (when my motor tics get bad, the minor ones in my hand go away for the most part), & I asked for a violin for Christmas. I used to play, but I stopped when the twitches came, then my violin broke & I just never got another one. I've continued writing, am currently reading Sybil, & might be getting Osler's Web & a DSM-IV for Christmas. I love medical books. I did even before I really got interested in researching P.A.N.D.A.S. & all that. Being able to read is also a huge deal for me. When my Narcoleptic symptoms started, I didn't read a book for about two years. I'm on my third one this year. I'm pretty proud. I've still got my 4.0000. I suppose one upside to P.A.N.D.A.S./Lyme is not exactly having too many social opportunities to distract you from school, hah. I'm especially enjoying my Psychology class. I have an extremely enthusiastic teacher. You can tell he's actually interested in what he's teaching. It's so much easier to enjoy a class when you can tell that the teacher enjoys it, too. I get to start dual-enrollment at the local community college next year. I'll be finishing my freshman year of college in high school. Then it's off to TCU, then UT Southwestern for my MD. Then y'all can really call me Dr. E. I'm excited for all of the opportunities I have. OCD has been bad, but Anxiety's been good (well. As good as anxiety can get, haha. Morning anxiety attacks are bad, though.) I will do my best to log on more. I just wanted to let you guys know that I haven't disappeared, haha. I hope everyone has a very merry Christmas. <3

As a ticcer myself, there's really nothing we can do. In situations like church most of us can hold them in/muffle them, but it hurts. :/ I think they're louder when we get excited/scared/whatever just cos it's a stronger emotion. I dunno why, but I definitely see what you're seeing! Don't know what you mean by the sound absorbing fabric though...

Stepdad called up there this morning, they said they'd call back Monday. Dunno what exactly was said. We already have all of my medical records as of July of this year! Suppose we need to re-up, hah. Starting with the sleep study. This is the same hospital where the doctor wrote "Has Dystonia" "Has Dystonic posture" "Indicative of Dystonia", etc... all over my records & no one told me until I saw the papers about five years later, so I don't know how to feel about it. Vickie ~ Most definitely. Dad is pretty bad Narcoleptic. :/

So, we had the polysomnography/MSLT on Nov. 11/12th. A couple weeks later we got a call from a nurse saying that everything was all good. They specifically told us they "didn't even warrant a follow-up." I was upset, but whatever. Well, I have surgery to remove a ranula (just a harmless, albeit gross & painful, mouth cyst) on the 21st. Today they called to ask all of their questions for the anesthesiologist or whatever. Any history of seizures, any heart problems, etc... When I told them that the only medication I was taking was Nadolol (blood pressure meds... prescribed for headaches), the first thing the lady asked was "Well what is she taking for her Narcolepsy??" & my Mom just went "...what?". The woman on the phone said "Ya know, the thing that makes her tired all the time?" (ha-ha) & my Mom replied with "Yeah, I know. Where does it say she has Narcolepsy?!" & the woman said "I'm looking at her sleep study results right now. It says right here that your daughter has been diagnosed with Narcolepsy." Um. EXCUSE ME?! A doctor is going to just fail to mention to a fifteen year old girl who's about to start driving that she's Narcoleptic?! That's a TAD important. At first I was like "Well, she could have been looking in the wrong file" or something, but she had already asked me about all of my previous procedures. Unless someone who has also had a ranula removal, appendectomy, EKG, MRI, & EEG, also just so happened to diagnosed with Narcolepsy on the same day as me & it just so happened to get stuck in my file... Doesn't sound likely. I'm pretty unlucky, but come on. My stepdad is going to call tomorrow just to be like "What the ####?", but how do we even go about this??? I am so confused!!! Please help, cyberfamily.

I don't know about big forums, but I'd talk to her!

Thanks for the link! Love your blog too. I have one that I rarely ever get on. :/ EmersonAilidh.Tumblr.Com Are you sure giving them my address & phone number & stuff is safe though?

This post made me cry like a ####ing baby. I've only talked to you once before, but I really hope there's some other way to reach you besides ACN since you're getting off the forum. I hope you have tons of success in Europe. You're an inspiration & I only hope I end up half as well off as you do. I know this forum is depressing & I shouldn't spend so much time on it, but I don't have anything else. I don't take the parent's advice over that of doctors (I say that like I have a doctor), but as pathetic as it is the people I've "met" on here are the only ones that can even come close to understanding. I don't have friends. When I need to talk I come online to vent to a bunch of Moms I've never met before. The more I think about it the more pathetic I feel cos I'm pretty sure even they're getting tired of me. I can't stand myself. Good luck, but I really hope I get to talk to you again.

I don't know why no one's replied to this! Pupil dilation is a common P.A.N.D.A.S. symptom. One of those specific ones like choking fears where not EVERYONE has it, but a lot of us do. I know I do.

I used to take vitamins all the time. I found my little days-of-the-week pillholder on Saturday & reorganized it so I can get back on track. Ever since Saturday though I've just felt worse. I was sick last weekend, almost positive I'm still sick, but it just got markedly worse with the vitamins... ~65 mg Iron. (Synergistic. Can't do Dessicated Beef Liver) ~500 mcg Vitamin B-12. B Complex : ~180 mg Vitamin C. ~100 mg Thiamin. ~20 mg Riboflavin. ~25 mg Niacin. ~5 mg Vitamin B-6. ~400 mcg Folic Acid. ~30 mcg Vitamin B-12. ~45 mcg Biotin. ~5.5 mg Pantothenic Acid. Calcium : ~400 I.U. Vitamin D. ~600 mg Calcium. Another B Complex : (take so many since I don't eat meat) ~1.5 mg Thiamin. ~1.7 mg Riboflavin. ~20 mg Niacin. ~2 mg Vitamin B6. ~400 mcg Folic Acid. ~6 mcg Vitamin B12. ~35 mg Calcium. ~100 mg 5-HTP with Magnesium, Calcium, B6, & Niacin. ~1,000 mg Flaxseed Oil. (500 mg Omega3, 110 mg Omega6, 120 mg Omega9). ~5,000 more mcg of Biotin. What in there could be making me feel worse?? Also, my blood pressure meds. 40 mg of Nadolol every day.

I have the world's most wonderful Psychology teacher. Makes an already interesting subject even better. Love those teachers. Anyway, we started our unit on Abnormal Psychology today, which basically just covers BiPolar Disorder, Disassociative Identity Disorder, the different kinds of Schizophrenia, & Obsessive Compulsive Disorder. Our textbooks were just totally inaccurate about Narcolepsy (Said that they entered Stage IV sleep too quickly instead of REM, & went so far as to say in bold & all caps "PEOPLE WITH NARCOLEPSY AREN'T SLEEPY!"), so it's probably not hard to believe that infectious triggers are mentioned... Nowhere. But of course the whole time we're watching the Psychiatric equivalent of Trauma : Life in the ER I'm thinking "No one is checking these people for strep!!!". My psychology teacher knows my medical situation & has expressed interest in learning more about it. What would be some good, informative, credible articles to give him to start? He's a busy man so Saving Sammy is a bit much. I have all the Lyme pamphlets & all that, but nothing on P.A.N.D.A.S.. Any suggestions??

Wilma ~ You've just asked one of the most loaded questions on this whole board, hahah. I know of people who have been on antibiotics for years. & some who can't do a month without a break. It all depends on the person, I suppose. But even that's probably up for debate. I obviously can't speak for myself at birth but I can speak for my half-siblings, most of whom I suspect to have P.A.N.D.A.S/PITAND. I made sure to include PITAND on that one since I've never seen Pertussis discussed on here, but they get that all the time. My Dad/stepmom aren't very into medicine or doctors & only go when it's absolutely necessary, so bringing P.A.N.D.A.S. up to them has not proven to be fruitful in the past. I'm not entirely sure where you stand on the Autism-P.A.N.D.A.S. connection, Peggy, but I've talked to you about two of my siblings before. Abram & Millicent. Abram is diagnosed Autistic & mentally retarded, both of which were evident from birth. Well, not necessarily THOSE TWO, but, just that something was wrong. Extremely delayed developmentally in all areas, especially physically & emotionally. I don't remember much from when he was a baby because I was admittedly pretty young at the time (about five years old when he was born when my own P.A.N.D.A.S. was just getting started), but all I remember is just thinking "That's not what a baby is supposed to be like". Never cooing or garbling turned into never speaking. Never speaking turned into rarely speaking, & only in his own language at about three years old. Millicent is three now, & doing the same sort of thing. She isn't AS developmentally delayed; she was speaking before the age of three but not much & she still isn't potty trained, but physically she is better than Abram was. She's not diagnosed with anything, but my Dad & stepmom have expressed concerns that she might be Autistic too. I find it hard to imagine that P.A.N.D.A.S. & Autism can just co-exist in the same family without intermingling. Hmph. Just my two cents on the whole P.A.N.D.A.S. at birth matter. Although, I don't really think anyone can find out, since I've only ever heard of one disorder (Lesch-Nyhan Syndrome) where psychiatric symptoms are undeniably evident in kids that young. You can't really tell if a six month old has OCD or not, & a whole lot of us have had our symptoms "as far back as [we] can remember", so who's to say? Part of me wonders if the brain has to be at a certain point developmentally to even handle something as complex as OCD. Just a thought.

Had them for eighteen months with no problems. Besides that those suckers hurt.

I hate it when I stumble onto an interesting topic when it's already three pages in. :/ I don't think that the White Paper will be GUIDELINES for P.A.N.D.A.S. treatment/diagnosis so much as suggestions. What I'm trying to say, & granted this really is just what I think, is that I don't believe it's going to make anything more difficult, like the Dearborn Criteria or something. I think for the most part it will just be setting a standard of treatment & diagnosis pursuit. I'm sure there are far too many pediatricians, neurologists, & whateverelseists out there who still have no idea that strep can cause these things, much less how to treat it even if they do make the connection. I'm HOPING (& as someone with Lyme I know hoping is a dangerous thing) that this white paper will make P.A.N.D.A.S. easier to diagnose (which it sounds like it will), antibiotics/steroids easier to get, & IVIG easier to get covered by insurance. I don't think they would be including Dr. K, Swedo, & Leckman if they were trying to make this more difficult for us. After the Tel Aviv study (not to mention everything else accomplished in this past year & even before then) anti-P.A.N.D.A.S. doctors are going to have a harder time making their case than we will ours. One of the first things you learn when reading up on P.A.N.D.A.S. treatment is that every kid requires a unique treatment. With P.A.N.D.A.S. savvy doctors working on it I find it hard to imagine that these guidelines/suggestions/whatever-they-are will be too terribly rigid. Trying to stay optimistic over here. Now, it would be AWESOME if they were required to check for Lyme before starting any Prednisone or other steroid treatments, but I think I'm getting a little ahead of myself with that one. :3

What is the "White Paper"?

We're making an appointment with an out of state doctor instead. My Mom finally talked to one of the moms on here (YAY! ) & decided it was about time. Nothing left for us in Texas. You guys on this forum will be the first to know how that goes!

Posted it on FaceBook! So great. I remember years ago when a psychologist handed me a paper & said "I know what you have". I got home that night & Googled this weird, strange new thing called P.A.N.D.A.S. & found a bunch of pictures of bears. Well, I know what those are!!! It seems insignificant, but Google tends to be the first stop for all curious parents/patients (I know it was for me) & it made me happy the first time I googled it & actually found what I was looking for! Progress! You are all awesome! My little online P.A.N.D.A.S./Lyme family is the best.

Rages were the norm for about six years. Crying jags started about five years ago, then replaced rages as the main emotional lability about two years ago. Rages are still here to stay though. Just not as common. When I do it, it's definitely not just for "no reason" but a lot of the times I really don't know why. & sometimes if I do know why, it's something stupid & irrational. That's one of the things my Mom has trouble understanding. Kids with OCD don't make sense!!! It's like mood swings on steroids (although... P.A.N.D.A.S. kids on steroids tend to do better so that phrase is a little confusing, haha). Nothing has to MAKE me sad or MAKE me mad. When we're driving a certain turn can make me sad. Or it's OCD thoughts (thoughts of my Dad dying are most commonly responsible for the crying fits). Or I can just get "stuck". It's when I'll think about something RANDOM, that can have nothing to do with me or is sometimes at least a little related, & the just can't stop thinking about it. Maybe that's an OCD thing too. Wednesday was World AIDS day, & I kept randomly crying because my favorite movie is RENT (it's about AIDS) & I kept thinking of it & how sad AIDS is & would just burst into tears. & then get distracted & move on to some other emotion.

I do my best not to hate them. However, at a store the other day I reached into a bin of the FLUFFIEST stuffed animals (I have a thing for plushes) & reeled & jerked my hand away when I noticed I was petting a panda.