EmersonAilidh

One question. I've always heard the mention of vaginal/perianal strep. As far as I've read, that's group B strep. I thought that GABHs (Group A Beta Hemolytic Strep) was responsible for P.A.N.D.A.S., not group B anything? Am I mistaken?

Sorry, had to post one more time cos I actually just made the Carnation slushie & this is AWESOME. Thank you so much Suzan & everyone else who's suggested it! Goes down so easily. But still yummy & I know it's nutritious.

We called the ENT on the list on the second. Monday, just like stepdad promised. Her nurse said that they had had a few P.A.N.D.A.S. patients but that they typically referred them to another doctor. "Okay, so what's that doctor?" "Oh, we'll call you back with the information." *Click* Oh H### no. I have not waited this long to have a doctor's office HANG UP ON ME. So I called back the next day. & the next day. I had other doctor's, but this one just so happened to royally "tick" (for the sake of the young eyes on this forum) me off & I wasn't about to let them brush me off. While on the phone with the man that I got yesterday I said "Can you just give me the information right now, please??" & he told me that he would call me back in a few minutes. *click*. Needless to say. I don't think that they'll be calling me back anytime soon & I'm calling the pediatric neurologist on the list soon. I didn't want to go the neurologist route just because of my bad experience with Dr. Ryals, but the ENT is obviously not working out. Also, I have been the one doing the phone calls. I enjoy handling it myself but I need my Mom on board to help me with insurance info, scheduling, etc.. etc.. I'm calling the neurologist today, & I will get back to you all! Also, came home to a big tub of Carnation Instant Breakfast sitting on the counter. Guess who's about to make her first little slushie thanks to Suzan?

MomWithOCDSon - Thank you! I might try that. The cereal that I have is in tiny little bits though, so if I eat just a couple little ones at a time it's not that bad. Just very very time consuming, hahah. Mom said she'll buy some Instant Breakfast tomorrow. Yay for a step in the right direction! & hopefully the appointment will be made tomorrow! When it is you bet I'll be letting all of you know. MandyKnowles - I.... don't know. I try really really hard not to think badly of my Mom but at times like these it's difficult not to. Our relationship is definitely unique. We get along for the most part now but that has NOT always been the case. She had me when she was eighteen, so she's still pretty young at thirtyfour right now. I love my Mom to death but sometimes I feel like I'm older than her on the inside. I gave her the list of doctors my very first day on the forum, June eighth, I believe, & I have been SO frustrated for these past two months having to remind her & still seeing nothing. I can't make the appointments myself because I have no way there & her work schedule is weird, & I shouldn't have to anyway. Just a bad time. :/

MomWithOCDSon - I don't think that I can eat oatmeal (gfree), but what exactly is hot cereal? Just boiled cereal? I can't BITE into food either. That has been going on for years though. When I'm eating things like tortilla chips, for example, if I can't just fit the whole thing in my mouth I have to break it by pressing it to the roof of my mouth with my tongue, NOT using my teeth. Worried Dad - I can't wait for that day either! My parents joke that I'm gonna wear a track in our floor, too. Hahah. Disconcerting, but after weighing myself I found that I've lost about twenty pounds since June eighth when I went gluten free. I went from 128 to 110. Not an unhealthy weight, but still weird. Tomorrow is supposed to be the day! I'll be getting onto them about making that appointment until I SEE THEM DO IT. Vickie - You are so encouraging! I bought a bunch of these little "Taste of Thai" glutenfree microwave noodles about a week ago, & with how small the noodles are they go down fairly easy. It's really oily & not exactly healthy though.. Definitely not something I could eat often. People like you are why I love my online P.A.N.D.A.S. family. <3 MomTo2Pandas - That's what I did when I made my appointment with Dr. Kovacevic! (So much for that.) But with this being in town & not a special deal, I have to work around my Mom's work schedule since I really don't have anyone else to take me. She's a model, so her work schedule is ALL over the place, that's why I leave stuff like this up to her because I never know when she'll be working or not. Your post was probably the most helpful thing that I have ever read on this forum. My main issue is how long I've gone without treatment & how more often than not I feel basically like I'm too far gone to be saved. But hearing about how long you had to wait & what you had to deal with from your parents has put so much hope in my heart. Thank you. FixIt - I will ask whatever doctor I see about what treatment would be best for me, thanks for the advice! I will let you know what I hear & how it goes. Suzan - What is Carnation Instant Breakfast? I've read a bit about it on here but beyond that I've never heard of it. I have NO problem with drinking. I can go through a jug of juice a day, without any exaggeration. This sounds like something to look into. I have a list of seven doctors in my area! Five of which are covered by my insurance. One of the ones that is not covered, however, is one of the ones that I really wanted to see. An immunologist. Besides that there is an ENT, a pediatric neurologist, & some others that I can't recall at the moment.... ..

Mary M - I pace because I'll get fat if I don't. But besides that.. I've never experienced eating/eating disorder-esque problems until now. I've actually lost a ridiculous amount of weight going gluten-free, as a matter of fact (not an unhealthy amount though. I was a bit tubby). I was trying to explain it to my bestfriend. It's not that when I put the food in my mouth I think "This is gonna make me choke" so much as it is the SECOND that food hits my tongue I can almost feel myself choking. This is something new & I haven't dealt with any symptom like it before.. That's the only reason that it's scaring me as much as it is. LLM - Sorry, didn't see your post before I responded to WorriedDad's. My stepdad promised to make me an appointment in two days. He is much more reliable than my Mom, so when he says that he will I'm fairly confident that he ACTUALLY WILL. When he does I will be sure to update all of you. I'll be overjoyed, posting something positive for once, hah. Thank you for caring. <3

Your post made me cry. & I like your little picture. I HAVE a list of P.A.N.D.A.S. doctors. There are seven in my area, five of which are covered by my insurance. I gave my Mom the list two months ago & she just still hasn't made an appointment. The list was written down in her personal journal so I didn't want to cause a fight by going through it to find them & make an appointment on my own, but right after this post I went into my living room where my stepdad was sitting (Mom is at a family birthday party), took my Mom's journal off the table, found the doctors & handed it to him. All I said was "Mom hasn't made me an appointment yet." & he told me that he would do it on Monday. I hope that he does. I know I'm going to win in the end! It's just days like these where I feel terrified & lost when confronted with new, increasingly more frightening/weird symptoms. I had strep last week, so my only guess is that the choking must be a combination of that & having hardly eaten solid food for so long.

I went gluten-free ABOUT two months ago. Obviously it pretty much flipped my diet over on its head. Up until last week I pretty much lived off of mashed potatoes since that was the only thing in the house that I could eat. Last week, after a long wait, I FINALLY got to go to Whole Foods. I bought cookies, I bought bread, I bought cereal, I bought noodles, I bought REAL FOOD, & it was awesome. Well. It was going to be. But I started experiencing a symptom that I had only read about previously about a week ago. Choking fears. Now I'm back to eating my mashed potatoes because that's the only thing that will go down, & even that doesn't work all of the time. It hasn't been that long at all but this might just be the symptom that I hate the most in my P.A.N.D.A.S. journey. I can't eat in front of my friends because if something feels wrong I have to spit it out. I eat alone in my room & I'm lucky to get a few full bites down. I have absolutely no idea what I'm supposed to do about this.. My mom still hasn't made an appointment with any of the doctors & I'm just terrified. I've never felt anything like this. The second I put anything in my mouth I almost want to cry I'm so scared. It's not even so much a fear as that I can almost FEEL myself choking before I even try to swallow. I have absolutely no idea what to do. My P.A.N.D.A.S. has just gotten progressively worse & worse over the years & this last strep infection proved to me what I have been fearing for a while now. I do get worse when I have strep. But I don't feel all that much better when I don't. After thirteen years, I don't think that antibiotics will do a thing. I don't even know how to go about IVIG or PEX & our insurance sucks anyway. But treatment options don't even matter when my Mom won't get me in to see the doctor. I've never felt as hopeless as I do right now.

Are prophylactic antibiotics the ones typically used in P.A.N.D.A.S.?

Thank you! I found them on the forum so I think that this particular doctor is interested in P.A.N.D.A.S., that was just the only title that stuck out to me, hahah.

On the list of Texas P.A.N.D.A.S. doctors that I got off of here, there is an "ear nose & throat" specialist. Is this just because strep is in the throat? Does anyone have experience with these kinds of doctors? What exactly can they do? _______________________________________________ (edit) One is a "pediatric specialist", one is a clinical psychologist, one is unlabeled, one is an "allergy, asthma, & immune disorder" specialist, & one is just a pediatric neurologist. Do these titles really matter? Does anyone have any words of advice or recommendations as far as who would be good to see?

I'm not too entirely sure as to what I can/can't say (Marijuana is NOT legal at ALL down here in Tejas), but it DOES help. It helped with anxiety. It helped with the pain I have in my shoulders. It helped me to be social. I haven't used it in a year & four months simply because I got tired of the "stoned" feeling & decided that it wasn't worth it in the long run, & I know it's definitely not for everyone but I wouldn't be so quick to dismiss it. I don't get "silly" with my P.A.N.D.A.S. though, I get angry & withdrawn. So being a little more open & a little more open & bubbly was definitely a welcome change. That being said, I obviously didn't go the "medical" route. Along with getting tired of the "stoned" feeling that accompanied it, I got tired of having to be around shady people. I was sick & tired of not getting support from my family, I was sick & tired of not getting the treatment that I needed so badly, but above all else I was sick of being sick & tired of being tired. At the time, in all honesty, if hanging out with people that I couldn't stand even then (I have always HATED the stoner lifestyle) meant getting to feel a little relief, it was worth it. Now that the EXCRUCIATING pain that I had in my shoulders (by far one of the WORST symptoms that I had ever had, if that was even it) has all but vanished without a trace, I couldn't justify having to deal with people that I hated. When & if medical marijuana is legalized down south, I would be more than interested in trying again. But until then, there will be none for me.

I think that it has to be even smaller than the profile picture!

This is the suggestion that I like the most so far! Although, I think that if we do include the age on onset/diagnosis/etc... we should also include the year.

On that note, with some of the incredibly detailed medical articles that I've seen on Wikipedia, I think ours is in need of a little revamping. I remember the first day I looked up P.A.N.D.A.S. when I was first diagnosed, & the page was practically a single paragraph. It's definitely made progress but I think that there's a lot more information that could be on there, because I know from personal experience that the majority of people visiting that page are googling "P.A.N.D.A.S." for their first time. http://en.wikipedia.org/wiki/P.A.N.D.A.S.

3boysMom & NancyD - Thank you for clearing that up! That's good to know. I've always had Asperger's tendencies (I made a post once after feeling more alienated than ever when I went on a thirty minute tirade about the history of Greenland) but I've never got an answer one way or the other. KaraM - Your letter almost made me cry. Thank you so much for helping! I could honestly see TIME going for this... We just have to get more people to send letters!! Mama2alex - Thanks for offering editing advice! I want to be an editor when I get older.

P. Mom - Do I need a pediatrician to sign off on me purchasing them or anything? & what's a reputable retailer of Ultra Strep by Osom? Thank you for helping!

That made me feel a lot better! Thank you very much for that. I've never looked at it like that before.

Hello Bright One, Loved the letter...Maybe I would leave off: "is an Autism Spectrum Disorder" from your first sentence of your second paragraph. (Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus is an Autism Spectrum Disorder.) Although many seem to find a link, it is not the case for many others. I teach children with Autism and as of yet PANDAS is not on the spectrum. Thank you for all you do to help move this forward! I've always been told that it was! I'm confused now. :/ Thank you though!

Is there anything that I should omit/change/add to the letter?? & thank you both very much! Those posts made my day. I've ALWAYS wanted to write a book, English is my favorite thing on Earth. But I want to get some kind of treatment or something first because right now my story would basically be "One day I got P.A.N.D.A.S... & then it sucked for thirteen years.", haha. & I DO want to be a representative of P.A.N.D.A.S.! I am very aware that I'm fairly high functioning (comparatively speaking) as far as P.A.N.D.A.S. kids are concerned, & I've had far more experience than I should. Also, like I said in the letter, I'm the perfect example of why P.A.N.D.A.S. needs exposure. Someone commented on my attitude towards all of that being "exploitative", but right now exposure is exactly what we need, even if I do just have to send random emails that other people see as saying "I have P.A.N.D.A.S. & you should write an article about it." Although, I will confess that I am MUCH chattier on here than real life. You guys just make it easy, haha.

Haha! I'm sorry, but this made me laugh. I accidentally skipped forward in the conversation & I was like "Wait. Howie Mandel won't return someone's calls? WHAT did I miss?!"

Ok, I am middle aged and way out of touch. So maybe someone can help me understand. To me, the boy's comments sound like he likes you. I'm not getting why you'd be offended. What am I missing? Haha! He might have. But it was still kind of offensive for someone to basically imply that my disease was anything good or beneficial, ya know?

Thank you both very much! Sweet posts like these make my day. <3