EmersonAilidh

Gatito - Me encanto tu username. & no, I really haven't! :/ I want to be an editor at a publishing company. I LOVE words. I do plan on volunteering at my hospital when I get a car though. Even though it's not really "my" hospital anymore, I still feel a loyalty to Cook's Children's & all of it's patients. LLM - I guess you're right about there being no normal. BUT, some of us are closer than others. When I was crusading for Pepsi votes a boy from my Geometry class said "You have this?" & I said "Yes." & he said "Well, if it made you you then I'm thankful for it; it can't be that bad." While I was actually pretty offended by that comment in particular, I DO love myself & when I call myself a freak or weird or anything like that, I might mean it at a bad time, but at the end of the day... I AM a freak, & there is nothing wrong with that.

My timeline is a little, well, screwed. We suspect initial onset to have been at two years old - 1997. After eight years of unnoticed episodes, I believe I went chronic when I was ten - late 2006. Actual diagnosis - 2008. My parents say that I've had two minor motor twitches since the day I could talk. -Mouthing what I say right after I say it. People have thought that this is a compulsion, but I am NOT aware of it at all. (Still) -Lip twitches. Curling up like a smile, but then spazzing out. My arly compulsions weren't really disruptive, either. -The number three. Many little subcompulsions. (Still) -NOT matching clothes. -Getting shoelaces "JUST right". (Still) As of 2006 (& up until 2009) I had NEVER ONCE had a negative strep test (specifically with high GABHs). I was completely & totally asymptomatic every single time, so we had no idea if & when I had strep. It was & still is just generally assumed that I ALWAYS do. None of my initial symptoms were even seen as symptoms, just quirks, & couldn't be tied to any strep since we were never sure of when I had it. My only guess as to the episodic-chronic transition is that I must have been exposed to that one strain of strep at school & it was the straw that broke the horse's back.

I could help with the P.A.N.D.A.S. kids part! We could do it by stages... Or just by characteristics. Taking certain symptoms? Or by going "Beforehand" "Onset" "Remission" "Flareup" "Treatment" etc.... Or, ya know, everyone could just contribute something. It doesn't have to be sectioned thematically.

Send a letter to "letters@time.com" urging them to do a feature on P.A.N.D.A.S. Yes, I got the idea from Beth Maloney's email, but I hadn't seen it mentioned on the forum yet! This would be a GREAT way to reach millions of people across the world! We deserve it. This is the first draft of my letter. Comments/ideas would be appreciated. I'm a fifteen year old girl in Texas living with an autoimmune disease called P.A.N.D.A.S., or Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus. I'm writing you to ask about possibly doing a feature/story on the condition. Right now, we are trying to get the word out about our condition because it is not nearly as well known as it should be & is commonly misdiagnosed when it could be treated & relieved easily. Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus is an Autism Spectrum Disorder that occurs when strep antibodies (specifically GABHs - Group A Beta-Hemolytic streptococci) misfire & attack the Basal Ganglia in the patient's brain instead of bacteria. The Basal Ganglia is responsible for motor control, learning, cognition, & many other things. This onslaught of antibodies irritates & damages the neuronal cells in the brain, leading to OCD & Tourette's like twitches in ALL patients. For the vast majority of patients, "flare-ups" of these two symptoms can be directly linked to strep throat infections, but it gets much more complex. P.A.N.D.A.S. also involves a process known as molecular mimicry, where these neuronal cells basically make the antibodies think that they're attacking strep bacteria & in turn make our confused brains show symptoms of disorders/conditions that we don't necessarily have. Personally, I have dealt extensively with Narcolepsy, although I have also had experience with Depersonalization Disorder, Cataplexy, Sleep Paralysis, extreme anxiety, Hypnagogic Hallucinations, ADD, & anorexic tendencies. Other symptoms include, but are certainly not limited to, assorted sleeping disorders, behavioral regression, aggresiveness/uncontrollable rage, inattentiveness, dilated pupils, enuresis/frequent urination, non-specific gastrointestinal pain, & last but not least, an abrupt, strange change in handwriting. P.A.N.D.A.S. typically has an overnight onset during adolescence, meaning that children go to sleep one night perfectly fine, & wake up afflicted. My family can recall symptoms from when I was two years old with my first motor twitch & compulsions. They thought nothing of these "quirks" until I woke up with explosive, debilitating twitches when I was ten years old in the sixth grade that landed me in the special ed room when my school didn't know what to do. About to enter my sophomore year of high school, I have still received no real treatment because the lack of information/recognition among even doctors. Traditional pharmaceuticals (which I received an absolute ARSENAL of while misdiagnosed with simple OCD & Tourette's) do not have an affect on children with P.A.N.D.A.S. since the mechanisms causing our symptoms are not the typical ones. It is incredibly important that children with P.A.N.D.A.S. receive diagnosis & treatment early on because if you catch the disorder early enough it can be treated with antibiotics or IVIG (IntraVaneous ImmunoGlobulin)/PEX (Plasma Exchange). If not, it is suspected that every antibody onslaught left untreated causes more & more damage to our brains, inflaming the Basal Ganglia so much that it can affect even the Thalamus & Globus Pallidus or cause brain damage. I am a perfect example of someone who could have been saved by a correct diagnosis/treatment early on. With a suspected thirteen years worth of untreated episodes, I have lapsed into what is known as "chronic P.A.N.D.A.S.", where at fifteen years old I have not grown out of a disease not expected to last through puberty. I experience my symptoms all the time, instead of exclusively when exposed to strep (although they do become exponentially worse when I am). Because of what these antibodies have done for my brain, there is little to no hope that I will ever be "normal" or really feel "better". By getting the word out about this disorder, we are trying to save children from that fate. We are also trying to make sure that schools & teachers are understanding & accommodating with P.A.N.D.A.S. patients, that doctors are equipped to recognize P.A.N.D.A.S. & treat it accordingly instead of wasting precious time with mis diagnoses & ineffective treatments, & above all else, to make sure that every child with P.A.N.D.A.S. knows what it is that is happening to them. I am one of the few people in the P.A.N.D.A.S. community who writes from the patient's point of view. I am not a concerned parent, I am not a doctor, I am a fifteen year old girl who will never get to experience a fully normal childhood thanks to my defunctive antibodies/lack of treatment. I'm writing this letter to you, asking you to publish an article just to inform the public on even the existence of this disease, because, quite frankly, no child deserves to go through what I've been through, & if caught early on enough, they can be saved from years of mental & physical ######. I would be more than willing to contribute if/when you do the article. In fact, I would LIKE to. Many patients' P.A.N.D.A.S. manifests more autistically than mine, making it hard for them to reach out & explain to strangers. Also, unlike many (maybe even most cases) that last nine months to a few years, I have been experiencing symptoms for as long as I can remember. I have more than my fair share of experience with P.A.N.D.A.S., although my case is definitely not as severe as it can get. Many of us want to hide our disease in an attempt to salvage what little normalcy we may have left. We think that if we deny it, if we don't acknowledge it.. Then it might as well not be there. I lived with this mentality for years, but now I realize that we cannot afford for our condition to be kept a secret. People need to know about P.A.N.D.A.S., & all of us in the P.A.N.D.A.S. community believe that your magazine would be a great venue to reach millions of people. Thank you for listening, & PLEASE consider this. ~Emerson Ailidh. (I included my last name. Didn't want to post it here.)

I would be more than happy to contribute!

Small victory! Got my Mom to watch the P.A.N.D.A.S. episode. It actually ended up being pretty emotional... Not what I expected. During this week where we're pretty positive (I wish we could be TOTALLY positive -__-) that my house is just teeming with strep, I've noticed that besides my tics (including the return of a chihuahua sounding sneeze twitch), my irritability & my anxiety (which has gone through the ROOF), I haven't seen nearly as much change as I was expecting. I was only really looking because as I've said, I'm not used to knowing when I have strep AT ALL. When they briefly mentioned the brain damage in the episode, I told her about "chronic P.A.N.D.A.S.", because she was confused as to why when I WAS prescribed antibiotics for strep when I had it (except for this time) I didn't get too noticeably better, like Sammy's miraculous recovery on the show. I explained to her as best as I could. My entire family has agreed that we can remember symptoms back from when I was two years old. It wasn't until I was ten or eleven (sixth grade. Honestly can't remember which age it was) that I received ANY treatment, & you can hardly call pharmaceuticals treatment. Well, besides the occasional antibiotics when a strep test came up positive. If it's suspected that every episode wreaks a little havoc on the brain.. What is suspected to be about thirteen years (& counting) of these episodes left untreated have made it to where I just.. always feel "off". It was really hard to talk to my Mom like this, but I'm glad that I did. One common symptom that never really fit me was the seperation anxiety. I'm surprisingly independent, I LOVE being alone. So to sit my Mom down & tell her all of this, explaining titers & PET scans & IVIG & PEX, it felt really good. It felt like the first time that my Mom acknowledged that even though my tics are no longer incapacitating, I am still very sick. When she expressed interest in getting on antibiotics to make me "all better", I told her quite bluntly that he was diagnosed & treated fairly early, & that even though treatments saved Sammy that I don't think there will be anything that can save me. I'm come to terms with it. There was one time about a month ago that she walked into the house to find me circling the dining room table mouthing to myself (talking without words. My VERY first twitch that has gradually become a compulsion as well. If that makes sense). When she saw me she laughed innocently & said "What are you doing??", & I was just immediately SO embarassed, told her "Nothing", started crying & ran upstairs. Tonight I got to explain to her that my pacing is not just a little quirk. I finally confessed that when her & my stepdad go to bed, I will pace for HOURS without stopping. That I can't help it when I cry when I wear shoelaces & that there's a reason I always paint my nails three colors. My main problem with P.A.N.D.A.S. is vocalization. Until two years ago, I told NO ONE. If they saw me doing a behavior I would laugh it off, & if they saw me twitch I would just lie & tell them that I had Tourette's. This constant, well, basically denial has admittedly spread over to how I act around my Mom. I feel SO bad that my Mom can't just have a normal kid, like all the other Moms she knows that don't have to worry about panic attacks or random rages. But I think tonight was a gigantic step in her understanding. After we were done talking, she mentioned that she had noticed me ticcing, which meant a lot. She even noticed something that I hadn't, that my voice has gotten consistenly deeper & raspier over the past month. Knowing that she IS paying attention was so good to hear. Sorry for the long update, but I figured that with all of the discouraging posts I have contributed to this forum, I owed you guys an uplifting one.

Nope! They won't go! & honestly I don't even have my pediatrician's number, or else I would have by now. We suspect the infection set in this past Thursday, so I've been given the "OK" to leave the house since they don't think that I'm contagious anymore. Spent today out & about in Dallas with my Aunt & Mom, honestly feeling quite guilty for even being outside. I KNOW that I'm more prone to infect others than to infect myself.. But it was a family-oriented thing & they told me to go. My Mom is VERY bad at scheduling things.. . Still no appointments with either of the doctors that I sent her TWO MONTHS ago. It's very frustrating, but her work schedule is not consistent so I can't make the appointment myself since I don't know when she will be working. & no, I have never emailed Dr. T. How would I go about that??

Who is this mystery emailer?! I am so lost. D:

Well it's good that you've stopped! I tear at my eyelashes, never my face though. That sounds so sad. I'm glad you decided to open up to us! <3

So happy for you!!! Only up from here.

Thank you so much. I love my little online P.A.N.D.A.S. family.

Mkur - Thank you! Hahaha. Posts like that are why I love this forum. I think that I'm just gonna avoid eggs at least until this infection is over. My house is walking on eggshells (no pun intended) right now, I don't wanna have another blowup... LLM - Haha! That made me laugh. & yes, I got an appointment! Originaly for July 16th, then rescheduled for July 20th. Then my entire Chicago trip was canceled.. I was planning on doing a phone consultation, but as soon as I heard $500 that plan died, hahah. I hope to see him eventually though! Maybe next summer.

I don't know if it's common but it's definitely a problem for me! Every now & then something comes out totally high pitched & squeaky & I'm just like "Woah, was that me???" or I don't even realize that I'm practically shouting when spending time with friends until they tell me to quiet down.

I'm trying to fry them! Not exactly the healthiest, but hey. I can't even imagine trying to boil them, hahaha. I think that would just lead to a nervous breakdown. Thank you though! & I have been sitting on my back porch every now & then. Mid-July in Texas & our AC is broken. Outside is actually cooler than inside! Bleh.

Haha! I think she has it Tivoed. She's just a tad obsessed with it. My rages are all taken out on myself. My Mom is a pretty tiny woman at 5'10" & just over 100 pounds. Metabolism of a RACECAR, I swear! She can eat whatever she wants & it just doesn't show at all. But, that being said, I'm pretty sure that me beating on her would not go too well. I used to beat myself when I got overwhelmed, ESPECIALLY when I was dealing with depersonalization about a year & a half ago. Honestly it was when the trichotillomania (excuse me if I butchered that spelling...) came about eleven months ago that the self-abuse stop. Not that I pull my hair when I get overwhelmed & go into a rage, but it helps me to be less anxious. Although, at first I was pulling from the top, which earned me a bald spot both quite impressive & quite noticeable. I used to straighten my hair, & everytime I got frustrated I would run my fingers through my bangs or over the top of my head & pull out the ones that I could feel curls in. Around November/December (at a school that I HATED) it got to be an obsessive thing. When I put my hands down from pulling my hair out in class they would HURT until I did it again. My bald spot could be seen in photos by April, & it was when I saw a photo of me & my friend Heather that I made myself start pulling from the bottom. It has gotten MUCH better though.. http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs141.snc4/36391_134999723193312_100000498556822_315528_875815_n.jpg (photo of the bald spot^) One of my weirdest & least understood compulsions came about in June of this year when RaceTrac (a gas station) came out with the "FreeFill" cups. You bought this big cup for $7.55 & got free refills all summer. But they were only on sale for about a week & a half, so everyone was stealing eachother's cups. I started keeping an eye on mine. Then I started carrying it around.. Now, I can't go anywhere without my cup. They aren't even getting stolen anymore, I just have to have my cup with me. The upside to this compulsion is that whenever we just so happen to pass a RaceTrac, I'm ALWAYS ready for a free refill, hahah. Sorry, I don't know why I'm talking so much.. :/

After my throat hurting for a few hours two days ago & yesterday, my Mom is now couchridden (she's very thankful for Judge Judy marathons right now) & stepdad might have to come home from work his throat hurts so bad. 3/4 people in the house (not to mention my two bestfriends, who are also stuck at their houses) with strep. Or, so I assume since I asked my mom to schedule an appointment with my pediatrician three days ago & she never did. With my history it's a pretty safe bet though. I suspect that this is day three or four of the infection. Now, for some reason, cooking eggs is one of THE most anxious activities for me... If I break the yolk, I freak out. But I need them (along with nuts & beans) for protein, so even though I knew it was probably more risky than usual, I decided I wanted an egg this morning. Only to break not one, but TWO yolks. It was like opening a floodgate. I was hoping this infection would go by somewhat peacefully.. But no. I started calling myself stupid (admittedly with a few more obscenities involved), threw the eggshells, & started crying. My Mom swooped in & cooked me an egg, which only made me feel even more stupid. I'm fifteen years old & my Mom has to cook my breakfast because I'm a freak & have a meltdown everytime I try. Now, I'm just sitting in my room. I can't remember the last time I felt this angry. It's SUMMER. I want to be out swimming with my friends! Not sitting in my room wallowing in anger. It's been almost two months since I sent my Mom the two doctors in Dallas who are P.A.N.D.A.S. supportive. I could be on antibiotics right now. BUT. I'm signing off because this is not the place to vent. Sorry.. I just had to get a little of that frustration out. :/ Needless to say... I think I'll just be eating a lot of peanuts this week. No more eggs for me.

My guess would be, if you say melatonin did not help you, is that it was the valerian root that does the trick! Did you ever take valerian root by itself? Allie does valerian root and melatonin every night. The melatonin gets her to sleep and the valerian keeps her that way! Although last night....ugh, lets not talk about that! Getting to sleep is no longer the problem for me, staying awake is, haha. Although I'm sure that's an odd thing to post at 2:42 in the morning. Getting strep yesterday has put me in a downright dismal mood so I stayed up watching musicals to try to make myself feel better. But, if the insomnia ever returns I'll be sure to try that! The drink was before I cared too much about my diet (just vegetarian at that point), & I can walk to 7-11 from my house, so although the Valerian root did cross my mind it wasn't as convenient. :/

I went from pulling all nighters two or three times a week (& only getting three or four hours when I did sleep) to sleeping twelve+ hours a night with multiple naps a day overnight. The insomnia lasted for about four years, this sleep pattern, which looks like Narcolepsy, has lasted about a year. My old neurologist was VERY into off label, somewhat experimental medication (but God forbid he prescribe antibiotics...), & so I ended up taking more benzodiazapines than I can even name (the only ones that did ANY good being Klonopin & Mirtazapine, although the side effects made them so not worth it), & even more off the wall pills like Aricept, for Alzheimer's, & pills for severe Epilepsy & Schizophrenia, all to make me sleep. I tried L-Tryptophan & every other vitamin/supplement under the sun to no avail, even swallowing nearly 30 mg (I can't remember if it was g or mg... Forgive me on that one) of Melatonin when I got frustrated did nothing. Oddly enough, I found relief at 7-11. I've never liked recommending Drank, the "anti-energy drink", just because it's marketed to imitate the effects of a popular hip hop drug called Lean, but there is NOTHING illegal in it & it is COMPLETELY non-alcoholic. In all honesty at that point my Mom didn't really care if I had to drink a can a night to sleep as long as I was sleeping. It worked better than any sleeping pill with NO side effects for me. It tastes good, too, which is obviously a plus for little ones. Like I said though, you just kind of have to ignore the can. It's marketed as an "Extreme relaxation" beverage, & that's exactly what it is. It helped me sleep better than anything else I've ever tried. The can/slogans might lead you to believe that it gives you some sort of intoxicated feeling, but it really doesn't. I'd just have a can on my nightstand everynight & I would be fast asleep before it was even gone. Ingredients : Water, high fructose corn syrup, sucrose, citric acid, natural flavor, sodium citrate, potassium benzoate, potassium sorbate, niaciamide (Vitamin B3), D-calcium pantothenate (Vitamin B5), valerian root extract, rose hips extract, pyridoxine hydrochloride (Vitamin B6), Red 40, melatonin, Blue 1, cyanocobalamin (Vitamin B12). Full 16oz can : 220 calories, 120g sodium, & 54 sugars. Not exactly the healthiest, & a lot of people don't get the good results that I did.. But I'd honestly say it's worth at least a try.

Only bumping this because I really need information on these tests.. Within one day of my throat hurting last night now my Mom thinks she's sick. It's Sunday so we can't get into the doctor. Obviously I can't get the tests delivered in one day, but it's times like these where we need them. :/

It's hard? I've only been to one, & I was recommended to her by my neurologist. Same hospital. Mine was very intent on trying to "hypnotize" me, but was pretty respectful about it when I declined everytime she brought it up. I've never been clear on what exactly acupuncture DOES. Basically... All I know is that they stick needles in you. There's a store in a strip mall down the street with a neon "ACUPUNCTURE" sign & a bunch of botched English phrases written on the windows, so I've always just kind of shied away, haha. Thank you for recommending it though!

Would pacing/walking around a certain "track" in frequently visited areas be part of the "just right" OCD? I've seen a lot of people discuss their children doing this on the board. It's my biggest compulsion, too.

Have you used them before? Are they accurate/easy to use? I never got a positive- only ran about 3 tests and my daughter got into it and dumped the test liquids, so I don't know how accurate, but I think its the same test the docs office uses. I don't know how good I swabbed though- would think a really good, gag the heck out of you swab would be important. Haha! I think I'm used to the "gag the heck out of you" swabs. Thank you for the link, I'll look into them! ______________________________________________ Wait. It says "Professional use only". Do I just.. ignore that?

My coordination is HORRIBLE. Quite literally cannot walk a straight line. My handwriting is so small that it's nearly illegible, too. How long has your daughter been experiencing symptoms? When I was younger (I think eleven, to be exact) I was on an arsenal of pharmaceuticals, so it's hard to say what really made the difference in my motor skills. The one thing that I can say is that the only part of my treatment at that time that I feel did me any good were neuro biofeedback sessions, which oddly enough I have never seen being discussed on this forum.. I have no idea on their availability or anything like that, but it's good for small children since oftentimes the doctor will do the session through what looks like a videogame on a screen. When you look it up online it mostly talks about it helping people control blood pressure, heartrate, etc, etc... but as far as I'm concerned, it just helped me chill out. Now, I'm nowhere near perfect now & I have no idea how severe your child is, but I believe it was those sessions (twice a week) that helped me so much. It's a great way to teach P.A.N.D.A.S. kids how to calm themselves down. _____________________________________________________ Edit: Here's a link on it. http://www.umm.edu/altmed/articles/biofeedback-000349.htm

Have you used them before? Are they accurate/easy to use?