EmersonAilidh

I'm running out the door as I post this but thank YOU! You were one of the first people to talk to me on this forum. You have helped immensely.

So glad to hear that, Dave! I've been wondering about you & Blake.

Lots of P.A.N.D.A.S. kids have GI issues. I'm not sure how many of those are due to sensitivities, but I know a whole lot of us do also have sensitivities. I don't think artificial things like dyes & sugars are good for any kid, but I think they're especially worse for kids who have health problems. I try my best to stay away from dyes & sugars, but they're not completely cut out.

Meat & glutenfree. No blood tests. I used to throw up all the time, & cutting out meat stopped that completely (haven't done it a single time in seven years). Cut out gluten when EmmaLilly on here recommended it. It's done WONDERS for my GI issues. Suspected Ulcerative Colitis or Crohn's. No tests yet though.

So happy to hear this! Good luck. <3

Thankfully, & believe me, it feels weird to say this... My family is all kinds of medically screwed up so we're already accommodating Hashimoto's Disease & Diabetes in our holiday meals. Autism would be on that list but since it's a special occasion little Abram is allowed to eat dyes, although we don't use much anyway. SO. My question is... How do all of you on restrictive diets cope?! I mean, I haven't eaten meat in so long that passing up turkey is second nature, but what about stuffing & pie & green bean casserole? Obviously I don't expect my whole family to go gfree for the holidays, but I was just wondering about how everyone else introduced their diets to the family at first. My aunt & Grandma, the two who host both holidays, haven't been involved in the Lyme part of this. Like, at all. Do I just call them up & go "Heeey, guess what?!" On that note, does anyone have good glutenfree holiday recipes?! My friend wants to be a pastry chef & agreed to help me bake my own bread, make my own stuffing, & bake a pie with EmersonAilidhFriendly crust. I thought it might be cool to include my family in the glutenfree vegetarian cooking. Maybe go over the day before with my own cookware & show them that glutenfree-dyefree(yes, that one is new)-vegetarian doesn't have to be synonymous with nasty? Please get back to me! Recipes would be most appreciated. P.S. ~ For all of y'all worried about my sugar intake (*coughcoughPIXIESMOMMYcoughcough* ), I have all but cut it out of my diet, with the exception of fruit & last week's FORCED candy binge. Cutting out all artificial sugar & dyes has made a difference already these past few days.

I have missed you, Laura!!! I imagine breaks from the forum are nice though. I don't think I could take one, haha. I am very happy to hear about the progress! I don't know if you were on your hiatus when I had my "Yay, a Lyme diagnosis!!! Oh wait... This sucks even more than P.A.N.D.A.S." moment, hah. I'm going to search through my AOL to find your email address & send something your way soon. You've been in my thoughts & prayers! <3 P.S. ~ With Yale's medieval stance on Lyme, how do they view P.A.N.D.A.S.?

What's the difference?? I mean, I know stims are associated with Autism, but is there an inherent difference between the two? Thank you!

I do wear silly bands but I never ever take them off & can't really recall having seen any symptom worsening with them. All of the ones I have are from my brother or the special needs kids I work with. I use them as a little reward system. Have a good day, get a silly band. It works pretty well. FixIt ~ Are there any do's & dont's with probiotics? I'll look into them! Vickie ~ I've never heard of ranulas getting infected, but I know mine doesn't hurt. Although, if it meant antibiotics I suppose it might sting just a little. It's now tripled in size. It's not bumping my tongue yet but I'm sure not sucking on more candy. Mom is supposed to call about it tomorrow. FceFxer ~ I tried Tenex in the beginning. I was on quite the cocktail so I can't really say one way or the other if it did anything for me. No IVIG over here. I wish. No treatment at all yet, but we are waiting on one more set of blood tests & then we're off for antibiotics!!! It might not be IVIG, but it's better than nothing. :)

Not sure about yeast, but I have pinpointed that dyes & sugar don't bode well with me. Never had a doctor order me to eat candy before, but I hate it!!! My aunt had Candida, my Mom has Ulcerative Colitis, & my Dad has Acid Reflux like no other, so I have no idea where the GI issues come from yet. & I'm glutenfree veg, so would I be consuming much yeast anyway? I know you can still have a problem without eating a lot of it, but I just thought it was mostly in bread. No antibiotics, either. I wish. Could only be so lucky. Hopefully soon! I've heard about the yeast complications though. Galbladder ones too. Galbladder problems ALSO run in my family, so I don't imagine I'll do too well in that respect but I don't really care, hah. & I will do that test as soon as I wake up! <3

Three cheers for boredom! Another lone Friday night over here. I'm gonna message you on FaceBook soon, promise!!! <3 My time management sucks. :/

I haven't dealt with vocal tics besides one rare bark in literally three years. Then earlier this week I went to the dentist for the ranula that popped up on Sunday, & she told me to suck on candy for a week to see if that would make it go away. First off... Candy? Really? I've already had to have it surgically removed once & you think some lemon heads are gonna do the trick? & of course now my Mom & stepdad are saying "Well, let's give it some more time to see if the candy is working" even though the ranula has double in size & it's been the recommended 3-4 days. -_____- Secondly.... Candy is the mecca for anything artificial! Sugars, dyes, all that. I think I'm the only kid who would ever be this opposed to being told to eat candy for a week, haha. It's made me straightup sick. Righteous headaches & stomachaches, crying in class, unable to move, the whole nine yards. & then on Wednesday in my English class, I stuttered. It's not a normal stutter, it's a tic. I don't know how to explain this but just trust me. Then the barks started coming more often, & then I had a screaming tic Wednesday. No more screaming tics, thank God, but the barks & stutters are rampant & this has all been gone for three years!!! Someone please gimme some advice besides putting a stop to all the candy!

Fatigue is more indicative of Lyme than P.A.N.D.A.S., or so methinks. The line is so blurred one can't really say one way or the other, but I hear of more P.A.N.D.A.S. kids dealing with insomnia than fatigue. Where abouts do you live? I think things like dye/gluten intolerances & serotonin deficiencies could definitely play a part in your son's symptoms, but I'd look more into the big ones like P.A.N.D.A.S., Lyme (especially with the ticks & if symptoms lean towards physical rather than solely psychiatric) & co/secondary infections of Lyme. The Cunningham test is definitely a good idea! I'm asking for it for Christmas. Also, my GI symptoms started right after an appendectomy & my "symptom explosion" came about three or four years after. I've always wondered if surgeries/anesthetics could be a factor! I'm sorry if you've already mentioned this cos I'm in a bit of a rush to start on homework so I can't read your whole post (but I promise I will later!) but what kind of diet is he on now? I think that's the lowest ASO I've ever seen! Sounds like a negative thing, but I don't believe ASO/AntiDnase-B titers to be diagnostic for P.A.N.D.A.S. If the strep~symptom connection occurred a long time ago, sometimes our poor brains just get confused & start acting like we have strep anyway. "Chronic P.A.N.D.A.S.". It's argued upon & certainly not proven, but more than plausible. Also, even if it's not strep it could be PITAND, which is effectively P.A.N.D.A.S., only with another offending infection. I don't know much about it but I'm sure others on here could fill you in better than me. :/ You say you say Dr. Infante in San Antonio, have you seen Dr. Rao? She's a P.A.N.D.A.S. savvy immunologist in Plano. I live in DFW myself. I haven't seen her (out of network for my insurance) but I've heard great things about her from Moms who've been denied by other doctors. Not sure if she deals with Lyme though. That's a tough one in Texas. :/

We need a "Fast Reply" on the Lyme board!!! Suzan ~ I'm really glad my Mom saw it! I think she might have been a little discouraged if she knew it was Lyme before seeing it, but I think seeing it without knowing it was Lyme helped her understand. Does that make sense at all?? She says that she knows the basics of Lyme (Bacteria gets in your system through a tick bite & screws everything up, pretty much) & that she doesn't want to know any more because the scientific parts confuse her. Can't really argue with that & I suppose it doesn't really matter at this point. They explained the problems with the blood tests a lot better than I could. & I know what you mean about thinking that everything is Lyme! I have to remind myself all too often that not everyone with a little muscle pain has a complicated infectious disease! NancyD ~ I don't think she'd be willing to spend money on a presentation & I sure don't have any, haha. She's basically come out & said that she has no desire to learn the specifics of Lyme, & I'm just kind of shrugging my shoulders on that one. Don't care anymore. I'm asking for Under Our Skin for Christmas, & I know she'll watch that much. I think she'd just be too intimidated by a presentation like that to take it in well, & she sure wouldn't spend money to order it. Oh well. 504 is gonna get scheduled once the co/secondary infection tests come back. We figure it will look better if we're able to put Lyme, P.A.N.D.A.S. + secondary/co infections instead of just Lyme & P.A.N.D.A.S. Plus, I don't want to have to get documentation for the Lyme & P.A.N.D.A.S., & then go through it again to get the co/secondary infections. Figured it would be easier to just get it all done at once, even if it means waiting a couple weeks. I think she has to come to the 504 meeting, but chances are I'll be the one doing the talking, like at doctor's appointments. I don't mind anymore though. I'm okay with it as long as we're getting somewhere!

I left a three part episode of Mystery Diagnosis on the television few minutes ago. Then I hear my Mom going "Ailidh, rewind it!!!" She made me rewind it & watch it, talking about this girl's physical therapy & how this girl sounded "just like me". So I sat, & I watched, listening to this girl talk about her symptoms. My Mom hasn't read much about Lyme, & the look on her face when "LYME DISEASE" came across the screen was priceless. Think she'll be taking me a little more seriously now. All I could do was laugh. <3

Today I talked to a teacher about a 504. She's my AP World History teacher & she's the best. She's a breast cancer survivor, so she's incredibly understanding & she's a great listener. I basically asked her how it would look. I haven't sought help from the actual school since the sixth grade when asking for "an alternative testing room" landed me in the special ed room without them so much as warning me. Anyway, she said that she was shocked I didn't already have one & told me that for the most part, at least in our district, teachers are more than accepting of 504s, especially for students so obviously impaired but who still make good grades like me. <3 After that, went & talked to the counselor who said that as soon as I got letters of documentation for P.A.N.D.A.S. &/or Lyme, we could get the ball rolling & have the plan put into effect in anywhere from two weeks to two months. In my district the meeting is just my counselor, all of my teachers, & my principal. All but my principal are fully aware of what's going on, & my principal is a great guy anyway, so I have very very high hopes. Still need advice for 504 accommodations that have helped all your kids though!! Please get back to me. Last week my Mom & I were sitting in the lab getting my co/secondary infection blood tests drawn & I made a comment about how we've made more headway medically in the past six months than in the past five years. She thanked herself, which I didn't agree with much, & I told her it was because of the forums. If I had never logged on here I'd still be sitting at home, another lonely, confused P.A.N.D.A.S. kids. I'd never have made an appointment with the doctor who ran the Lyme test, I never would have known to pursue Lyme even though the second test was negative, & I never would have had anyone to ask all of my questions to. ######, I wouldn't even know what Lyme WAS! & I sure wouldn't know anything about 504's or anything like that. So, thank you all. We get sad on here a lot, so I thought it was time for an upbeat one. I know y'all have a lot on your plate, but consider me another P.A.N.D.A.S./Lyme/WhateverElse kid under your wing, cos you guys have been awesome Moms to me. <3

Hugs from Texas. <333333333 I know it's discouraging now but every day kids like myself & parents like yourself are helping to transform that "what IF" into a "what IS". Keep your head up, girl. One day P.A.N.D.A.S. will be as common an acronym as ADHD & we will have our resilient selves to thank.

A friend was eating Hot Cheetos at lunch the other day & I really wanted some so I read the ingredients, saw that it was safe, & ate some. That was all I ate that day & I didn't really notice feeling bad. That night my Mom went & bought me a bag of Hot Cheetos, & I ate some once on Friday & once on Saturday. Then on Saturday for lunch two friends & I went to a vegan restaurant in Fort Worth. As most vegan restaurants are it was pretty weird, & the only gfree options they really had were substituting rice noodles for regular pasta. They had "Spelt-Quinoa Bread" & "Seitan", neither of which I had heard of before & the waiter told me they were gfree. WELL WELL WELL.... I basically ate a meal of gluten, & of course this restaurant didn't have a bathroom. Not ten minutes in we had to book it to a gas station, where I made some people very unhappy by cutting the whole bathroom line. & also, for some reason, apparently my school's little fun size bags of Cheetos don't contain Whey but the regular sized bags do? Just checked that. I have NOT been on my restrictive-diet game this weekend. :/ The reason I bring up dye here, excuse me for talking about stool here, but the BM at the gas station was not like my normal bad ones in the fact that it was RED. No blood at all, just... RED. My little brother (severely autistic & mentally retarded) has horrible reactions to Red Dye 40, which I just read in the ingredients list of those Cheetos too. I've never had noticeable reactions to dye before (Anything cherry flavored doesn't bode well with me but since I avoid it now I don't know whether it's necessarily the dye or not), but then again healthnutty glutenfree vegetarians don't exactly come across much artificially dyed food. All I drink is tea, the VAST majority of what I eat is all natural, & I don't have a sweet tooth (besides for Almond Joys. My weakness), so I really can't even remember the last time I would have eaten something with dyes like that in it. I had a HUGE anxiety exacerbation last night, too. I can't think of any other trigger besides having eaten so bad since my GI & anxiety issues are linked in a big way. Anyway. My question really is... Why are dyes bad? I mean, I know artificial-anything is to be avoided if there's an alternative, but what exactly is it about dye that some people can't handle?

Happy birthday & good luck from Texas! <3

Ranula : http://en.wikipedia.org/wiki/Ranula When I was four I had my first ranula. No one can remember whether it came before or after when my tics started that year. It was the size of a golfball when I saw the doctor (Go figure....), & I got it removed. Well, I just woke up with another one, & like we all tend to do I can't help but to try to link this to P.A.N.D.A.S. or Lyme or something. Has anyone else had oral problems besides strep? Ranulas are a dysfuntion of the salivary glands, but I can't imagine having these & it just being totally separate from either Lyme or P.A.N.D.A.S. (more leaning towards P.A.N.D.A.S. just cos it's in the mouth). Any thoughts? :/ ___________________________________ Forgot to mention Tori. http://www.simplestepsdental.com/SS/ihtSS/r.==/st.32219/t.32130/pr.3.html I have three lingual Tori. I know they're harmless but I figured it was a question worth throwing out there just to see if anyone else has dealt with any weird mouth stuff like this.

Alyssa ~ I know they CAN do it, but even for medical absences? & what exactly does "28" absences equate to in just regular high school classes? Would I have to just take the same classes again if I got"held back" a year in high school? Peglem ~ Thank youuu! That is exactly what I needed to know. EmmaLily ~ Thank you too! By the way, sorry I haven't replied to your FaceBook message. :/ I put my response on Word but haven't been on much besides on my phone, which isn't good for actual messaging. You are great!

I can't even imagine!!! I'm so sorry to hear that. If it helps at all, on days like this you can always know there's a fifteen year old in Texas who understands the Lyme fog (not so much the helping children part though) & is always willing to talk! You can send a message my way anytime you need. Don't give up hope. One day we'll all pull out of the Lyme fog. I can't remember clarity but wondering about it always helps me to keep my head up. <3

Never give up hope!!! What is this margin drift??

I emailed him & will probably talk to him on Monday. My counselor this year has been a Godsend. Does anyone know how 504's look to colleges?