EmersonAilidh

I know this has been posted before but I can't find it, so forgive me. :/ But, my throat is hurting. Which is odd, because the two times that my throat have hurt in the past twelve months have been the ONLY two negative strep cultures I've ever had. That being said, my Mom doesn't like going to the doctor when my throat does hurt since I'm asymptomatic when I do have strep. My glands aren't swollen, I haven't been exposed (as far as I know), & I have no rash, but this random pain did make me want to ask about at home strep tests. Which are the most accurate, how are they used, & where can they be purchased? Also, how expensive are they? We always go to the doctor when someone around me gets strep & as I mentioned, EVERYTIME (besides the aforementioned two) I've been positive with high GABHs levels, but I've never gotten my exact numbers. I was hoping maybe these tests could save us some money in doctor's visits.

If only, if only. All of you have a great time & keep us posted on how the conference/dinner goes! Especially Dr. K's "big announcement".

Thank you so much for all of your kind words! I live with my Mom & my stepdad. My stepdad has been around since I was two & a half, so basically my whole life. I love my "parents" to death for everything they've done for me, but I know that they would never cut out meat or gluten, much less both. I don't expect them to, either. Avoiding meat has become second nature after all these years but being gluten-free has proven to be much more difficult. My family doesn't cook at all, unless it's just "firing up the grill", so it's been really difficult for me to eat well. I think it was you that just posted on my "Vegetarian gluten-free diet" post so I'm trying not to repeat myself here, haha. I have a cookbook but we haven't gone to the store yet to buy anything for it, & even when we do I'm pretty scared that I'm gonna be expected to cook for myself. I'd love to have sit down family dinners.. But that's just not going to happen anytime soon. I'm proud that I even got them to taste things like rice macaroni & cheese (thank you very much, Amy's Kitchen!), I'd never dream of having them join me on this diet, no matter how awesome that would be. All I'm trying to do right now is get them to at least help me a little more, because I've seriously gone through two boxes of mashed potatoes this week (don't recall the brand, but made sure they are gfree) & I know that's not healthy.

This post made me sad because it sounds like me. :/ I didn't realize it was called "chronic". That just sounds so bad. I've had compulsions & one twitch my entire life. My family thinks that I've had P.A.N.D.A.S. since I could talk (about two), but I wasn't treated until I was ten or eleven. Glad to hear about your daughter responding well!

Pixiesmommy - I take flaxseed oil! Where could I get the omega 6's though? & I am sure to get lots of protein. Six years into my vegetarian diet, I know the importance of beans & nuts. I used to get a lot of soy protein, but sadly enough I can't do that anymore. So yummy. I miss it, hahah. & Kaki - We actually found a GREAT cookbook at our local bookstore! We found two that I could use, a vegetarian gluten-free one & a vegan gluten-free. We ended up going with just the veg one because the vegan one was too fancy. Mom hasn't cooked anything out of it yet.. God bless her, she's trying to be as supportive of this diet as she can but I've been practically living off of mashed potatoes & fruit this whole time. She stood up for me during a family dinner fiasco, which was very nice. But my family normally NEVER ever cooks. Everyone microwaves their food. So I'm just having a hard time trying to convince her to cook now.

My eyes are really really dark so it's pretty difficult to see my pupils in photos, but here are two. The first is from last March, about a week before I had my first cataplectic, sleep paralysis, & depersonalization episodes. (I'm on the left) The second is from November, when my Narcoleptic symptoms were at their absolute worst. Staying home from school multiple times a week because I couldn't wake up & passing out in class when I did go. My pupils have always been pretty big.. This actually makes a lot of sense now. http://sphotos.ak.fbcdn.net/hphotos-ak-snc...7_1102633_n.jpg http://sphotos.ak.fbcdn.net/hphotos-ak-snc...5_5095052_n.jpg _______________________________________________________________ Quick edit. Just read the post about the "chronic" girl. When exactly does P.A.N.D.A.S. become "chronic"?

I normally post on the P.A.N.D.A.S. board but I happened to stumble upon this.. I used to take Clonidine when my twitches began four to five years ago. I'm now med-free, but at the time pharmaceuticals did work miracles when it came to managing my twitches. Mine were more severe than blinking (screaming, flailing, hitting, you name it.. I did it), but I wouldn't rule out Clonidine automatically. You might not want to pursue pills since your son's tics aren't too severe, but, I'm just saying that Clonidine did help me. I've heard of people seeing success with Melatonin, if you're looking for a more natural route. It didn't do much for me (but, as I said, mine were out of control) but it might help your son if you'd like to look into it. Also, it's good for little ones because it's soluble under your tongue & you can buy peppermint flavored ones.

Could ALL of that really be cause by a red #40 dye allergy?? I have a brother who is mentally retarded, severely autistic, & very allergic to red #40 dye, & we don't see symptoms THESE bad when he occasionally comes into contact with it. I'm ignorant on the subject, but that's just my two cents. I'm a fifteen year old girl with P.A.N.D.A.S. It's hard to say whether or not something "sounds" like P.A.N.D.A.S. just because no two of us are the same, but it's definitely something that I would look into if I were you. I don't know much about Lyme Disease or Candida problems so I can't really say much as far as either of those are concerned, but I would pursue all possibilities at this point. Just start ruling things out, like others have said. I hope your son gets better!

What exactly is your question, though? My thing is silence. I can't be in a quiet car/room/etc... It drives ME insane & makes me tic. We can't help it. :/

I've just understood it to be a "migraine thing". I guess I've been lucky...no side effects from the imitrix! This link says the morning headaches could be related to restless leg and/or sleep apnea. http://themigraineheadachecenter.com/what-...he-morning.html I saw that website! That's actually the one that made me wonder about sleep apnea. Earlier I asked if it was possible to not wake other people if you had it. My Dad has horrible sleep apnea & Narcolepsy, so it's not out of the question since I have Narcoleptic symptoms. Scared to get tested for apnea after seeing the affect it's had on my Dad though. He was hospitalized some twentyfour times last year? *shiver* Oh well. Talking to my Mom about scheduling the appointments next week. Then we'll know a little bit more! Or, at least be closer. Since I don't sleep much when I have my RLS while menstruating I really can't report any headaches during that time though! ANOTHER RANDOM UPDATE. Called Dr. Kovacevic's office about changing my appointment to a phone consultation. In-office appointment would have cost $35 with my insurance, but apparently an hour long phone call is $500? The receptionist told me that & I was just like "Yeahhhh.... Go ahead & just cancel the appointment." Disappointing, but oh well. Ah, insurance will not pay for phone, only exam. Sorry to hear that, maybe you'll get a chance though, with your aunt living there. About the aspartame....really think you should reconsider, apartame is famous, very famous for causing headaches, among other things. Have you tried taking ibuprofen as a prevention before you go to bed? I'm sure I will too! This just wasn't the right time, I suppose. & I'll look into that! & Ibuprofen really does nothing at all when I take it when I wake up, do you think that it would be any different if I took it before bed?

I've just understood it to be a "migraine thing". I guess I've been lucky...no side effects from the imitrix! This link says the morning headaches could be related to restless leg and/or sleep apnea. http://themigraineheadachecenter.com/what-...he-morning.html I saw that website! That's actually the one that made me wonder about sleep apnea. Earlier I asked if it was possible to not wake other people if you had it. My Dad has horrible sleep apnea & Narcolepsy, so it's not out of the question since I have Narcoleptic symptoms. Scared to get tested for apnea after seeing the affect it's had on my Dad though. He was hospitalized some twentyfour times last year? *shiver* Oh well. Talking to my Mom about scheduling the appointments next week. Then we'll know a little bit more! Or, at least be closer. Since I don't sleep much when I have my RLS while menstruating I really can't report any headaches during that time though! ANOTHER RANDOM UPDATE. Called Dr. Kovacevic's office about changing my appointment to a phone consultation. In-office appointment would have cost $35 with my insurance, but apparently an hour long phone call is $500? The receptionist told me that & I was just like "Yeahhhh.... Go ahead & just cancel the appointment." Disappointing, but oh well.

Haha, thank you! Posts like this make my day.

In all honesty, with all of the things I can't eat (meat, gluten, caffeine, etc..) I think I'm gonna wait on seeing a doctor to add another one to that list, hahah. & I get that! But why would the headaches come when I wake up? Am I anxious in my sleep or something? Hahah.

Ingredients : Water, honey, green tea, black tea, citric acid, aspartame, natural flavors, ginseng extract, potassium sorbate & sodium benzoate (to preserve freshness). So, I don't believe so? That's the green tea one, there's a blackberry kind & a lemonade kind (yes, lemonade tea. So delish. ) that I can't seem to find right now, but they're all made by the same brand & everything so I can't imagine that they'd be any different. Our AC has been broken on & off since the summer began. What a time to break, right? One week it works.. the next it doesn't. You never know. My room is the hottest in the house though since it's right above the garage. I don't think the heat has too terribly much to do with it though just since, well, it's ALWAYS hot. If you grew up here you understand that period from April to September where having any fun outside is pretty much just out of the question. & hm.. If that's true then I'll just wait to see my new neurologist. I really want to know how anxiety/OCD have been linked to morning headaches, but all I can find online is references saying just that. "Morning headaches are often associated with OCD & anxiety disorders." Okay. Well, thanks. But how..?

I have a hard time imagining a day when we can ever fully encompass P.A.N.D.A.S. For now, if I think it's a possibility & I research it a bit & it seems plausible, I go with it. That being said, it makes more than a little sense to think that the Basal Ganglia becoming inflamed could put pressure on the Globus Pallidus or the Thalamus. (http://upload.wikimedia.org/wikipedia/commons/1/1b/Basal_Ganglia_and_Related_Structures.svg) Bustin out my Wikipedia sources, hahah. The Basal ganglia is responsible for things like cognition, motor control, & general coordination (also motivation & dopamine transmission if I'm reading correctly?). The Globus Pallidus is most directly associated with regulating subconscious movements, & the Thalamus is responsible for "signal relaying & prioritization". The Thalamus is also part of the Limbic system, which is in control of "emotions, memories, physiological autonomic regulators, hormones, "fight or flight" responses, sexual arousal, circadian rhythms, and some decision systems", (http://www.wisegeek.com/what-is-the-limbic-system.htm) all of which are most definitely affected by P.A.N.D.A.S., if you ask me. But.. Maybe I'm totally off. I've always read that P.A.N.D.A.S. attacks the Basal Ganglia. Does this mean the Basal Ganglia SYSTEM, which includes the Globus Pallidus & Thalamus, or just exclusively the Basal Ganglia, which does not? Also, my main reason for not believing that it's the bacteria causing the problems is that I have strep insanely frequently, but don't have exacerbations as often. I've had TWO negative GABHs throat cultures in my entire life (thankfully enough, both were in the last year! Maybe seeing a change here?). I'm completely asymptomatic when it comes to strep, so I only even know to get tested when I see my friends starting to get sick. Nine times out of ten.. It's from me. Here's where I would put an audio clip of all of my friends going "THANKS, Ailidh...", hahah. There was one time in the seventh grade where my boyfriend at the time & bestfriend both had to miss two weeks of school because I gave them such bad strep. I had to stay home too, but I was feeling fine while they felt horrible. I felt so sorry. That's how it's been since elementary school. Someone gets strep, I have to go get tested. That's the only way I found out that I have it, & as I said earlier.. I ALWAYS do. Those are all just little rambling thoughts.. but I hope they helped a bit! & don't call yourself stupid. I promise we've all had questions just like these.

The funny thing is, I rarely ever have any headaches that start during the day. Just always when I wake up. Maybe I could take something before I go to sleep? & I have heard all about the Imitrex side effects from my Mom. She told me that they are worth it though. Still have to talk to her about it but maybe it would be worth a try if it could steer us in the right direction! & I cut out caffeine a few years ago, with the exception of the occasional cup of coffee before school on especially bad days. It hurts my stomach worse than anything else. Really not too much sugar, either. I drink sugarfree juice & tea all day everyday. My family jokes that I always have a cup in my hand. & this is July in Texas. Humidity ABOUND. Can't be avoided, can't be escaped. I never thought about that, but that could be why they've been worse lately! Thank you!

Thank you! I am too.

I don't have light sensitivity, although sometimes strong perfumes can trigger a headache for me. Have you told your doctor? Maybe try imitrix? Does advil etc. do anything? Advil/Tylenol do NOTHING. & I have been pretty anti-doctors for quite a while now, but I'm planning on making an appointment with a NEW neurologist soon. I'm just trying to get an idea of what all to bring up & suggest when I do. My Mom takes Imitrix whenever she gets bad migraines (used to be pretty frequently, isn't all that often now). Would it be safe to try some of hers just to see if it makes a dent in the pain? With her permission, of course.

Well well well. Guess who got to the barbecue place only to discover that it was closed down? Must say, I felt pretty vindicated walking into P.F. Chang's. I understand what you mean about not expecting people to accommodate me. I would have been fine with eating a salad/sides (I did just that at the family dinner on her first day in town) if when I asked her to change the restaurant her response was something polite instead of "Well, I'm craving barbecue, soo.." Also, P.F. Chang's gluten-free menu is AWESOME. It's got an entire page on their menu! Says "Gluten-free" right at the top. Yummy & filling. They even had a little dessert, but I was way to full to try it. I also read online that Olive Garden has some gluten-free pasta. Just trying to spread the word, haha. & my vegetarianism isn't entirely for animal rights reasons. I stopped eating meat when I was nine (six years ago. I ate it chicken once six months in but that was it). I used to be sick ALL the time. It wasn't even so much "being sick" as just randomly feeling bad & vomiting. My Dad's side of the family (who don't believe much in modern medicine, & consequentially P.A.N.D.A.S.) are all about home remedies & things of that nature, & they were the ones to initially suggest cutting out meat, although I had already been interested in it for a while (cows have always been my favorite animal. Couldn't stand eating them, haha). When I stopped eating meat, I stopped vomiting. To such a dramatic extent that.. I haven't vomited a single time in six years (even when I had the swineflu). I think that's quite a feat even for someone who wasn't dealing with what I was before I dropped meat. In all honesty I can't remember how I felt before I cut out meat too terribly well since I was so young & my appendicitis ordeal was RIGHT before I went veg. But even though I still have stomach pains, cutting out meat, by no exaggeration, eliminated ALL of my vomiting. Now that that little shpiel is over.. Thank you all for your kind words! So encouraging, I swear. I'm still new to being on a restrictive diet, so I'm hoping it'll get easier. Mom's taking me to Whole Foods tomorrow to buy some "snacky" gluten-free things. I am so excited!

After I found the connection between my RLS & menstrual cycle I tried to find one between it & the headaches, there wasn't one. My Mom used to get really bad migraines. I think my Grandma might have too.. I haven't noticed any light sensitivity though, which was my Mom's big issue. Could that still be a migraine?

make me sad. My aunt & her son (from Chicago) have been staying with us for a couple of weeks now. Her boyfriend from Chicago came down to visit her & she was organizing a big "family dinner" thing for everyone to meet him. She told us today that dinner was tonight at six at a restaurant called Red, Hot, & Blue. I can't eat meat or gluten.. I asked her to change the restaurant to P.F. Chang's, since they're pretty gluten-free friendly, & her response was "Well, I'm craving barbecue." She told me that if I was "going to be like that" & couldn't eat anything there.. Then just don't come. Looks like someone will be spending another night with Amy's Gluten-Free microwave meals & TiVo. Thanks, P.A.N.D.A.S. Does anyone else have problems explaining that their gfree diet isn't just a preference when you don't have a diagnosis besides P.A.N.D.A.S. to back it up? Everyone just thinks I'm a picky eater & it really bothers me..

Also, on a bit of an unrelated note, my Chicago trip was cancelled. That means no Dr. K visit. I've been calling to see about changing my appointment to a phone consultation but just keep getting the answering service. I'll update everyone when anything new happens.

Googling "morning headaches" turned up 859,000 results with suggestions ranging from certain types of epilepsy to anemia, so I figure that I'm just gonna wait to see the doctor on this one, hahah. But one result that did stick out to me a bit was that morning headaches could be a result of anxiety & OCD. What? How? Mine are flatout disorienting. It can make walking difficult, I can't understand when people are talking to me, much less respond with anything coherent. This can last for two hours or all day (although if it goes on longer it does get less & less severe). It's in no specific place in my head, it's all over. I have both anxiety problems & OCD, so I was just wondering how these could be linked to waking up with a headache. Also, is it at all possible for people with Obstructive Sleep Apnea to NOT wake their bed partners during an "episode"? Sorry, I don't really know what to call it.. I ask this just because my doctor has suggested it before but I've always brushed it off since I have friends spend the night often & I also used to share a bed with my bestfriend & no one has ever reported anything. My Dad has it, so I know how disruptive it is when he wakes up, but I was just wondering if it was at all possible for it to go unnoticed.

I cried when I read #46. I couldn't help but to reply. Dear Cappucina1. I don't have the time to read every single comment on here, so forgive me if I'm repeating anything. P.A.N.D.A.S. can also stand for Pediatric Autoimmune NEUROLOGICAL Disorders Associated with Streptococci. It goes above & beyond psychiatric problems. I have had symptoms my entire life but was only diagnosed four or five years ago (added note, diagnosed by DOCTORS, not by parents or the internet). P.A.N.D.A.S. involves a process called molecular mimicry, making it so that our brains, confused by the onslaught of antibodies, begins to mimic disorders that we don't necessarily have. While I do agree with you that too many parents do look to the medical community to explain their children's problems like OCD & bipolar disorder, it's a little hard to believe that patients like me would be able to play up heart problems, possible Crohn's Disease, & Narcolepsy. Passing out is something that cannot be faked. I'd like to see how that fits in with your "mythical illness" theory. It would be extremely difficult, if not impossible, to encompass the entire disorder in any article or website. That being said, I wouldn't doubt something that affects so many people the way that P.A.N.D.A.S. does until you have experienced it like we have. P.A.N.D.A.S. has robbed me of the vast majority of my childhood, so until you know what it's like to be in special ed, until you know what it's like to not have control over your body's wakefulness or movements, until you know what it's like to spend cumulative years of your life in a hospital, I wouldn't go calling it "mythical" or comparing it to a food allergy. I am the proof that P.A.N.D.A.S. exists. I am the evidence.

Worried Dad - Glad that you were finally diagnosed & could get some help! Even though the neurology department there doesn't support P.A.N.D.A.S., the hospital that I go to is absolutely wonderful & is great at getting to the bottom of things. Hopefully I'll be able to figure something out soon! KeithandElizabeth - Any connection between those other bacteria & P.A.N.D.A.S. too, maybe? I don't know what most of them mean but the strep antigen levels are really interesting.