EmersonAilidh

You too! Happy to help. Just a quick note that Dr. Goebel can diagnose but doesn't offer any type of treatment. He diagnosed our daughter a year and a half ago and won't do any sort of prophylactic antibiotics. We see our ENT for those. I've heard good things about Dr. Rao and there are several families in our Dallas area support group who are seeing a pediatrician by the name of Dr. Ashworth, I believe. Well. That's disheartening. :/

And hopefully none of the school officials will take it upon themselves to read up on PANDAS by going to Wikipedia. Grrrr. (That happened to us.) Happened to me, too. :/ But that was back when the P.A.N.D.A.S. page was only a single biased paragraph, haha. How would we go about changing that??

You too! Happy to help.

Is it officially NeuroPSYCHIATRIC or NeuroLOGICAL Disorders Associated with Strep? I've never known. I'm still on the "don't exactly care" side of this name changing debate. As previously stated, they could call it SOT Syndrome & I wouldn't care as long as it got recognized. Does anyone know what became of the "super secret" NIMH conference a few weeks back??

Wait. Are you in Plano or San Antonio?? I live RIGHT by Plano. Dr. Rao wasn't covered by my insurance, so we looked into Dr. Goebel, who is a P.A.N.D.A.S. specialist in Plano. I'm seeing him in six days but I think that he would be a good option.

How old is your son? I know that in my experience it has helped a lot that I am actually able to explain it to my teachers instead of my Mom. On the first day of school I always have identical letters to hand to my eight teachers, & last year I was even able to get the teachers whose classes I had the most problems in in one room to explain it to them. I've noticed that teachers/faculty tend to respond better if it's a group discussion as opposed to a one on one thing. What are your son's main symptoms? I try to draw attention to the ones that are most noticeable/undeniable, which in my case are the Narcoleptic symptoms. Go ahead, try to tell me I'm faking passing out to get special treatment, Mr. Gilbert. Another thing that I always stress to my teachers is that P.A.N.D.A.S. is NOT like every other kids' ADHD, OCD, etc.. etc.. because in all honesty I believe that both of these disorders are grossly overdiagnosed, which really makes it harder for people like us to get teachers to take us seriously. In my district it's called a "Student Support Team", but I have no idea whether or not this is a widely implemented thing, but they made a "contract" to put in my medical file to say that if I fell asleep in class, I was NOT to be woken up, & that I had twice as long to turn in absent makeup work. Even if that's not the name of it, I'm sure they have to have some system like that in other districts.. Also, above all else, I never mention that it's controversial. They don't need to know, & it's definitely not doing yourself any favors by instilling anymore doubt in their minds. School starts on the twentythird here & I am absolutely dreading it. Bells ring at sevenAM at my school, which does not bode well with someone who needs twelve hours a night just to stay awake in the day. Best of luck to you & your little one! Let me know if you need anything else. <3

Can someone please explain the difference between a "complex" & whatever P.A.N.D.A.S. is classified as? I would honestly be a fan of a new name. Lord knows everyone gets SO confused when I say that I have P.A.N.D.A.S.. They're just like "Wait. You can buy those???" Also, is "pediatric" necessary since people like me & Emily Asher have obviously proven that it can extend beyond that age group? That's another source of confusion. Average person - "Pediatric? But you're fifteen." Me - "I... Don't know. I got it as a kid so it's pediatric, apparently." Side note - HELLO EVERYONE! My email change finally went through after many days of refreshing my inbox repeatedly. Sorry for the absence.

I'll admit to feeling a little doubtful when posting this, but I feel like I owe the P.A.N.D.A.S. community full disclosure. I couldn't leave out any details knowing that it could possibly help a patient feel less alone or help a parent understand better. EmmaLily was the very first person to talk to me on this forum. She's one of the few people I've seen with P.A.N.D.A.S. that are older than me, & even though we don't talk as much as we initially did I find her to be a huge inspiration. She's a superhero, as far as I'm concerned. I'm also seriously considering taking up the blogging.. I think that a little day to day "journaling" could be pretty useful. Thank you so much for your kind words! Also, it's extremely difficult for me to establish a correlation between symptom severity & strep infection. I just posted this on Dave's inflammation vs. underlying infection post, which I'm not sure if you're following, so sorry if I'm repeating myself here. Up until twelve months ago I had never ever had a negative strep test, rapid, culture, or otherwise. Every single one that I had ever taken was positive. I've had TWO negative ones this past year, which seems like a good thing. My first pediatrician, who I stopped seeing at the age of eight, was unbelievably confused. She just didn't see how a seemingly otherwise healthy kid (motor tics were all minor & my compulsions were kept to myself at this point) could possibly have this much strep. On that note, however, in the rare occasion that I DO know when I'm experiencing an infection, I can see a definite rise in symptoms. I developed my new choking fears after my (suspected) infection on July 16th.

I'll admit to feeling a little doubtful when posting this, but I feel like I owe the P.A.N.D.A.S. community full disclosure. I couldn't leave out any details knowing that it could possibly help a patient feel less alone or help a parent understand better. EmmaLily was the very first person to talk to me on this forum. She's one of the few people I've seen with P.A.N.D.A.S. that are older than me, & even though we don't talk as much as we initially did I find her to be a huge inspiration. She's a superhero, as far as I'm concerned. I'm also seriously considering taking up the blogging.. I think that a little day to day "journaling" could be pretty useful. Thank you so much for your kind words! Also, it's extremely difficult for me to establish a correlation between symptom severity & strep infection. I just posted this on Dave's inflammation vs. underlying infection post, which I'm not sure if you're following, so sorry if I'm repeating myself here. Up until twelve months ago I had never ever had a negative strep test, rapid, culture, or otherwise. Every single one that I had ever taken was positive. I've had TWO negative ones this past year, which seems like a good thing. My first pediatrician, who I stopped seeing at the age of eight, was unbelievably confused. She just didn't see how a seemingly otherwise healthy kid (motor tics were all minor & my compulsions were kept to myself at this point) could possibly have this much strep. On that note, however, in the rare occasion that I DO know when I'm experiencing an infection, I can see a definite rise in symptoms. I developed my new choking fears after my (suspected) infection on July 16th.

It says that you can't receive any new messages. Could you PM me with the link?

Excuse my ignorance here, but can someone please explain what exactly an ASO is? The one part I hate about this forum is always knowing the least, haha. I think that I'm leaning towards the underlying infection, but I'm not too entirely sure. Could it not just be a combination of both? It took years to get it into my Mom's head that P.A.N.D.A.S. was antibodies, not actual strep, attacking my brain. It got me thinking though, & this is just a totally off the wall idea... Are ALL of our antibodies dysfunctional? Do we not have any that actually know what they're supposed to be doing? I say this because up until twelve months ago I had never, not one time, had a negative strep test. Rapid, culture, or otherwise. Every single strep test that I had ever taken had been positive, & eventually my pediatrician started specifically noticing how "insane" my GABHs levels were in all of them. There was one instance where I woke up with a headache. This is definitely not uncommon for me. This was also when my Narcoleptic symptoms were really making school absolute H*ll, so for whatever reason on that day I decided to play this headache up a little bit so that I didn't have to go. Now, the rule at my house is that if you stay home, you have to go to the doctor. This is especially true in my case. So, true to her word, we tromped off to my pediatrician, who said that I was fine to go to school but that she was giving all of her patients a mandatory swineflu test. Not only did I have strep(GABHs), I had H1N1 without knowing it. The headache that I had was one of my NORMAL morning headaches, & I had no swineflu symptoms the entire time I had it. What I'm asking is.. How does the bacteria get in our brain? & what about those of us who seem to constantly have it in our throats, anyway? In my head I've always imagined having some normal antibodies that try to fight the bacteria & somehow swap it off with the antineuronal ones that in turn carry it to the brain. That's just what I imagine though. The affect that stress has on my symptoms also leads me to lean toward the underlying infection side. Since I never really know when I have strep it's difficult to link the severity of my symptoms to infections. On the other hand, linking them to stress is all too easy. I don't understand the Blood Brain Barrier as much as I would like to, but I've gathered that stress opens it & allows the antibodies to do their dirty work. In this case, would they still attack the brain if there was no infection at all present? Or are they haywire enough to fire off even when there's no infection present? If it's the latter, I find it hard to believe that we could trace their damage so specifically to the Basal Ganglia/Thalamus/Globus Pallidus region. On that note, has anyone done any research as to WHY it's those portions of the brains that got the short end of the stick here? Is there any possibility that they would be more likely to harbor an infection than other portions, possibly?

Emerson, Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price. For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words. There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art. I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem. In all honesty, you blow me away with just how much you know about this. I have been taking flaxseed oil, but I'm not sure of the dose. Animal products do NOT bode well with me at all, so would fish oil still be a good idea? I can eat dairy, but I haven't eaten meat in six years. I just don't want to take it & find out that even though it's relieving the inflammation, it's setting off something else. I had NO idea about the vegetable/canola/etc... oil, thank you so much! I don't eat much cooked with oil since my diet is so restricted but I will be sure to stay away from them now. What is OmaPure? I don't believe I've ever heard of that before. What does it do, where can I get it? Pharmaceuticals for misdiagnoses are a slippery slope. Have you seen any positive results on the Concerta, in respect to attention problems or anything else? & I remember you talking about your wife's lack of support. I'm very sorry. Don't give up your fight! Get custody if at all possible so that your daughter can get better! Parents like you are inspiring. Best of wishes to you & Blake. <3

Hello Dave! Welcome to the forum! I've talked to you on the FaceBook group. I can't contribute much in the way of advice, as you know I'm not exactly too terribly knowledgeable as far as treatments go, but I do wish you & Blake the best of luck! One thing I do around here is talk to the kids. Blake isn't that much younger than me, only three years, but I'd still be more than willing to talk to her if you'd like. Personally I know that when I joined the forum I was so happy to hear from other people with P.A.N.D.A.S. Just a thought!

Made this to keep track of what to mention on the eighteenth. It's quite lengthy, but I wanted to make sure that I covered all of my bases. Feedback would be greatly appreciated. I've never done this before. At first I was trying to keep it professional sounding, but I eventually decided that it was okay to be more personal since I want to get across just how badly I need help. Suspected age of onset - About four. 1999. I've had one specific minor motor tic since I was at least four, but no one can recall when it really began. After saying something I would repeat it without sound, just mouthing it out, immediately after I said it. No one can remember if this was before or after a ranula removal procedure that I received that same year. I was completely unaware that I was doing it until my tics exploded in 2006 & my Mom pointed it out to me. I've had compulsions & anxiety problems for as long as I can remember. Suspected age went chronic - About ten/eleven. Late 2006. In the sixth grade I woke up with explosive motor & vocal tics. Screaming, flailing, you name it. Saw Dr. Ryals within the week of their emergence, who said he suspected it to be Tourette's & started me on what would turn out to be an arsenal of medications that did absolutely nothing but make me feel like a zombie. I honestly cannot recall all of the pharmaceuticals that I've been taken, but I can try my best to remember if need be. After about a year or so of being bogged down by pills I weaned off of all of them to find that my tics had subsided almost completely. At the time I chalked this up to the medication's success. It was a therapist named Dr. Walker-Waitt in early 2008 that told me that I was the posterchild for P.A.N.D.A.S. when I mentioned how much school I missed from asymptomatic strep. I've only EVER had two negative strep cultures, & both have been in the past twelve months. I only know that I'm infected when those around me start getting sick. The positive tests have always been high in GABHs, specifically. The one thing that always struck me as different from P.A.N.D.A.S. cases was that I could see a downturn in the rare instance when I actually knew that I was infected, but when the infection was gone I did get a bit better, but never completely. I am ALWAYS anxious, ALWAYS compulsive, & ALWAYS tired, regardless of infections or stress, although all of my symptoms get noticeably worse with both. Things to discuss: Nonspecific gastrointestinal pains - I've never been stabbed but I seriously imagine that this is what it feels like. The pains can last for a few minutes to about an hour (although they dull over time if it's longer) & they're unbearable & debilitating. Can hardly move during them. Used to be about 1-3 times a day. More often than not it was about an hour or so after I ate but they were sometimes random. Started a gluten-free diet on June 16th which initially eliminated all pain but eventually lowered it to only a few times a week. Haven't vomited a single time since I stopped eating meat about six years ago, but all of my stools are abnormal. It is very rare that I get anything other than constipation OR diarrhea. Narcoleptic symptoms - First time I can remember mentioning what might have been early Narcoleptic symptoms was in 2007 when I confided in my therapist at the time that often when I was doing homework, reading, or doing anything else that involved sitting/laying down, I would look over at the clock & find that, without exaggeration, hours had passed without me noticing at all. In March of 2009 I had my only full on Cataplectic episode where I passed out on my desk in English class. We had a sub who failed to notice so I remained passed out for about an hour & a half before some students shook me awake. This was also my first experience with sleep paralysis, depersonalization, & hypnagogic hallucinations, all of which I have only dealt with a few times since. In June of 2009, after some major family issues, it was like flipping a switch. My insomnia that at times had kept me up for days for about three years gave way & I couldn't NOT sleep for twelve hours a night. & when I woke up, I could still nap two or three times a day. This only worsened when I started high school that August & had to begin waking up at 5:30 AM. I slept through every one of my classes. It was out of my control. I would try to write but I physically couldn't keep my eyes open. So I tried to write with my eyes closed only to find that when I opened them what I had written was either complete scribbles or something entirely different than what I had been trying to write. In one class in particular that I had every other day from 8:45-10:30, the class I had the other day during this time required little writing, holding my pencil was almost impossible. I would be writing & my head would suddenly droop (sometimes to the point where it would smack my desk) & I would just drop my pencil. It would happen over & over & over. It felt like I would just fall asleep for a few seconds at a time. When I did completely fall asleep it wasn't so much just flatout passing out as it was just... Drifting. Without even trying. I only know that I've fallen asleep when I wake up. My Dad has Narcolepsy & mixed Sleep Apnea. This is by far my worst symptom. I used to be out with friends all the time. I was so social. But ever since this has come along I never want to do anything just because I am SO tired. & my friends rarely want to do anything with me because they know that all I'm going to want to do is sleep, & even if I don't actually lay down & try to sleep that I'll just fall asleep if I sit down for too long. Some days are better than others though, & these past two weeks haven't been THAT bad, comparatively speaking. Headaches - After a full night of sleep (which is normally ten-twelve hours if left undisturbed), I more often than not wake up with a headache that can only be described as disorienting. If I keep my head on my pillow, I can HEAR my head throbbing more than I can feel it. It almost sounds like it's throbbing enough to make a sound against the fabric. Tylenol, Advil, etc.. Do absolutely nothing. It can last less than an hour or all day & I can feel it all in my head, not just in one specific spot. Tics - My tics are honestly probably the least of my complaints. At one point they were horrible, but they have all but subsided now. My very first tic, mouthing, still comes up occasionally, although I can't say how often because it's the only tic where I am STILL totally unaware when I'm doing it. Besides that I just have a few in my hands, specifically my fingers, & toes. If I do have a vocal tic, which is the rarest of all, it's just a little bark. No more screaming or shouting. This is the symptom that has approved more than any other over the years. Anxiety - There's not much to be said about my anxiety. However, I will say that it got exponentially worse at the same time that my Narcoleptic symptoms came about. Last summer was the single most stressful time of my life & made my P.A.N.D.A.S. flare up like no other. Before that point I would have anxiety issues every now & then, really nothing too terribly out of the ordinary. I had some major friend issues last summer & my confidence (which was sky-high before then) was pretty much crushed & my anxiety issues that had been ignorable before made themselves known in a very new, undeniable way. They've gone down substantially since then, but they are still more apparent than they were before last summer. It's mostly social anxiety. I went from being a social butterfly to practically a hermit. As I said, this has gotten immeasurably better in this past year. I go out & do things now but not nearly as often as I used to. This is the one symptom that really leaves me at a loss for words, I really just don't know how to describe it. Anxiety is anxiety as far as I'm concerned. Some days it feels like I'd rather die than be around new people. OCD - My OCD mainly manifests through pacing. Like the anxiety, it's really hard to explain. I just can't stay still. If I'm sitting at the computer for too long, I have to get up & do a little lap around the downstairs. If I'm cooking something, I'm walking "laps" while it's cooking. If I'm watching television, if I'm reading a book, if I'm doing anything... I have to get up & take a lap before long. I live with my Mom & stepdad, & whenever they go to bed I'll seriously just walk around the house. Around & around & around the house. I'll get fat if I don't. If no one else is around I talk to myself while I'm walking. My OCD is the only symptom that just makes me feel like I'm crazy. Besides that my compulsions revolve around the number three. This isn't too terribly severe but in the sixth grade, when my P.A.N.D.A.S. exploded, it was bad enough to where I would make my teachers rearrange desks to be in threes. Now it's just simple things like the number of bracelets on my arm or where I leave the volume on the television. We think that I got strep on July nineteenth, although we never went to the pediatrician for a test. I'm asymptomatic nine times out of ten so when I felt "off" one night & then my Mom & stepdad both felt sick the next day it's just kind of assumed. ANYWAY, ever since then I've been experiencing a P.A.N.D.A.S. symptoms that I had only read about previously; choking fears. When I went gluten-free about a month before the infection, my diet mainly consisted of nothing but mashed potatoes. After the infection when my Mom took me to Whole Foods for some REAL food, which I was ECSTATIC about at first, I found that it was really hard to eat. It's not so much mentally thinking "This is going to make me choke" as it is actually feeling the sensation of choking the second the food hits my tongue, which is made especially odd by the fact that I don't think I've ever choked on food before. I'm trying my best to eat the food that my Mom bought for me but sometimes it's hard. The only things I can eat comfortably are Carnation Instant Breakfast & mashed potatoes but I have been pushing myself as hard as I can not to fall into the pattern of avoiding solid food. Praying is also a big compulsion for me. I say the same prayer in my head everytime I eat. "Lord, please bless this food & the hands that made it. Please bless it to my body full of vitamins & minerals & rid it of all germs & bacteria. Please let it multiply to those who need it most. Amen." If I mess up, I start over. I can say this prayer ten times or more before I can actually eat. I've NEVER talked about this compulsion before just because it feels like no one will believe me since I'm not praying out loud & I'm not even really that religious. The same goes for my night time prayer, which I won't type out just because it's longer. I have also been dealing with trichotillomania for about a year now. When I couldn't stay awake when school started last August I started tearing my hair out in an attempt to wake myself up. I straightened my hair everyday so I would comb through my bangs with my fingers & tear out the hairs that felt wrong. At first it was just a little mechanism to wake up, but it got to the point where my hands would HURT if they were not pulling my hair. By April I had a bald spot so big that people noticed it & it was visible in pictures. I started tearing at my eyebrows, which I then started drawing on, & my eyelashes, which I replaced with fake eyelashes. I've stopped with my eyelashes but not my eyebrows, & I don't do it that much now that school is out. I do have pictures of it. Emotions - I am always angry. Always. It's in different degrees & sometimes it's mixed with happy, but I am ALWAYS at least a little bit ticked. I find it so difficult to empathize. My Mom has called me the "Least sympathetic person on Earth" before. After joining the ACN forums I read about so many kids taking their rages out on their parents, but for the most part (although they would argue otherwise since I made sure they never had to see the severity of it) mine have all been taken out on myself. Quite frankly I used to beat myself. I would get furious, oftentimes over nothing in particular or something totally insignificant, & just start wailing on my legs & torso. I honestly don't think that I've done that in about two years though. I've hit myself a few times but not to the extent that I used to. I cut myself once while grounded in 2006 right after my symptoms exploded. I was just young, angry, & it was really barely anything. Just scratches. In June of last year, when as you can probably tell EVERYTHING took a nosedive, I did it regularly. I stopped that August. I never told anyone but my friend Linzee. I am still a very angry person but I am NOT SELF- DESTRUCTIVE at all anymore. I've matured in a huge way since then & would never dream of doing any of that again but I just felt that it needed to be included. Others - I experienced the abrupt handwriting change. My handwriting is some of the weirdest my teachers have ever seen. I have HORRIBLE short term, but incredible long term, memory. I haven't experienced any urinary frequency. I am as clumsy as they get & get asked "Are you okay?" all the time because I look upset when I'm not. My vocabulary is insane, not to mention just flatout weird. Whenever I get interested in something I become FIXATED on it. I can read online for hours about random things like parasites or feminism. I have a really hard time telling when people are interested or not, because I'll go on these tangents where no one is responding at all or showing ANY interest but I think that they're just as interested as I am. Earlier in the summer I gave my friend & some people I didn't know well a half hour speech about the history of Greenland. I don't know when to shutup. But other times I'm terrified to say anything in a social setting, especially when around new people. I can actually sit there, turning a phrase over & over in my head a million times before I get the nerve to say it, & more often than not I'll end up just staying silent & having my own little panic attack. Over absolutely nothing.

Hi Dave!! Glad you joined the forums. Remember me from the FaceBook group?? Few things... First & foremost, I'm a complete idiot. I got my Omegas mixed up & have been searching for lone Omega-6 for weeks now... The inflammatory one. Secondly, this is the first time I've seen Alzheimer's treatments mentioned on the forum. My neurologist once put me on Aricept, another Alzheimer's medication. I can't recall my dose or even really what it did (too long ago & on too many medications at once to attribute any positive OR negative results to any specific pill). I know that it's an acetylcholinesterase inhibitor (thanks, Wikipedia), but beyond that I don't really understand what it does. Just thought it odd that two Alzheimer's treatments had been used with P.A.N.D.A.S. patients. What is she taking the Concerta for? I've been prescribed multiple ADHD medications, but the only one that I can remember the name of is Tenex... As with the Aricept it's really hard to say what side effect came from which pharmaceutical during that period for me, but I do remember it not boding well with me. I didn't have food issues back then but I remember my anxiety & depression being pushed over the edge whenever I was on those types of medicines. Maybe you could try a smaller dose or an alternative pill that inhibits her appetite less? just a suggestion. Besides that, I've been vegetarian for six years & gluten-free for almost two months. If you'd like me to talk to you or your daughter about food issues (I have recently developed choking fears, as well) I would be more than willing to.

Meant to include this in the initial post... How do I change my login email for the forum???

Decided to make a new P.A.N.D.A.S. specific email since the other one was so bogged down with FaceBook updates, spam, etc... I email quite a few of you so just PM me if you're interested. Also... I know a lot of your kiddos have sleeping issues. I found a website two nights ago called SimplyNOise.com that is just a white noise generator. A bit odd but it's been really nice so far. I have a problem with my mind racing as soon as I lay down, so background noise helps me out a lot. Just wanted to throw that out there in case anyone's interested. I'm pretty sure there's an iPhone app, too. I haven't posted in a while just because nothing's really needed my contribution, but I have been doing about the same. A song lyric from Tegan & Sara stuck out to me today ; "Don't be so hard on yourself. You won't get better until you're worse." I liked it & thought I would share. I hope you & all of your little ones are doing well! <3

I'm making a list of things to be sure to mention/ask. Once I'm done I'll post it on here for suggestions & such. That will be on there.

LLM - Hurray indeed! I'll admit I was so happy I cried a bit, haha. Has anyone discussed heart problems in P.A.N.D.A.S. patients? Is that a common thing? I've dealt with it for a long time. My neurologist thought that I had Long QT Syndrome at one point (EKG ruled it out, which dashed my hopes of no more P.E.) & I've always had a heart murmur. It only gets noticed every now & then lately, but when it was first pointed out it was so blatant that the doctor actually called all of his interns/residents/etc... to come have a listen. I was five, so that was pretty terrifying although it's my understanding now that heart murmurs are pretty harmless. I wonder how many patients have dealt with heart issues? I've never seen it mentioned before.

LLM - Hurray indeed! I'll admit I was so happy I cried a bit, haha. Has anyone discussed heart problems in P.A.N.D.A.S. patients? Is that a common thing? I've dealt with it for a long time. My neurologist thought that I had Long QT Syndrome at one point (EKG ruled it out, which dashed my hopes of no more P.E.) & I've always had a heart murmur. It only gets noticed every now & then lately, but when it was first pointed out it was so blatant that the doctor actually called all of his interns/residents/etc... to come have a listen. I was five, so that was pretty terrifying although it's my understanding now that heart murmurs are pretty harmless. I wonder how many patients have dealt with heart issues? I've never seen it mentioned before.

EAMom- That sounds really plausible, but I don't think so for me. I think that it's more like the sensation of choking, if that makes sense.. Because like I said, I really can't recall ever having choked on food or having had gagging problems. I haven't even thrown up in six years since I stopped eating meat. I don't think that I've ever had any problems with urinary frequency either, although I might have had them as a kid & just can't remember them now. Currently & from about the time that I was ten when the P.A.N.D.A.S. really made itself known, I can't say I've had any experience with it. Whenever explaining it to teachers I say the same thing. If you can think of a symptom, at least one P.A.N.D.A.S. patient has probably experienced it before. The little theory that I have going in my head (that has absolutely no backup that I have found or even tried to find) is just that maybe our defective antibodies are more haywire than we give them credit for. I've always wondered if things like the urinary frequency & nonspecific gastrointestinal pain could be from our antibodies wreaking havoc there. Or, specifically with the gastrointestinal pain as I've discussed in a previous post, just different dysfunctional antibodies.

As of this morning I have an appointment for August 18th! With a man named Dr. Goebel. He's not a neurologist, he's a "pediatric specialist" who deals with P.A.N.D.A.S. specifically. I have really high hopes for this. I found him on the forum list but I don't know of anyone who's had experience with him.. Like I said though. High hopes nonetheless. Physical symptoms are not entirely gone. I'm not sure if the choking fears count as physical, but those are still going strong. The more I think about it the more that I think those had to be a product of my latest strep infection, because it just makes no sense that I would get them this randomly. I really wish my Mom would have taken me to the pediatrician then because I have no idea how long (or even IF, really, although I'm almost positive since my entire house got sick the day after I started feeling off)I was infected. The only physical symptoms that are really persisting are a few minor motor & vocal tics (mostly "chirping", as my friends call it. Thank GOD for these manageable tics <3).

Guess who has an appointment with Dr. Goebel on August 18th? So happy. This doctor said that he treats P.A.N.D.A.S. specifically. Has anyone had experience with him? http://www.psopkids.com/doctors.htm

I've read all of these posts so excuse me for going a bit off topic from the current conversation here, but can someone please just explain chronic P.A.N.D.A.S.? What it is? It was seriously only a couple weeks ago that I had heard of it & in all honesty I cried like a baby when I did. From what I can gather the brain just, gets used to it? I've noticed that I get worse when I have strep since diagnosis about three years ago (although as I've said before it's almost impossible to tell WHEN I HAVE FREAKING STREP), but even then I noticed that when the strep went away there was no clean slate like I had read about. It got a little better, but it definitely didn't go away & everything was still really bad. I've been told that every untreated assault can cause brain damage, is this true too? & are PET scans the ones that show this? We're mainly looking at the Basal Ganglia here, but has anyone seen damage in the Globus Pallidus or the Thalamus regions nearby? Any information would be greatly appreciated. Most of you on the forum know my story but I feel the need to reiterate just in case someone doesn't; we suspect that I've been untreated for thirteen years & counting.

Mary M - Posts like yours remind me of why I come on here. I just wanna help. It's odd, because I really can't recall ever having choked on food before.. I'm not one of those people with a sensitive gag reflex who has to be careful when they brush their teeth either. I've been drinking Carnation all day. My diet is pretty much consisting of mashed potatoes (with salt, pepper, sometimes cheese), mini breakfast burritos (with really small diced potatoes & scrambled eggs. I can tear them up or bite them with the side of my mouth), & some glutenfree cereal. That I am out of as of today. I've been trying my best to keep nutrition in mind while still... accommodating, for lack of better term, my choking fears. Glutenfree products tend to be packed full of all kinds of good stuff, which my cereal is. Mashed potatoes aren't exactly good but they're not really bad though since I use light soymilk & no butter. Breakfast burritos are pretty much just potatoes, eggs, & corn tortillas. Salsa sometimes.