EmersonAilidh

I haven't been to him but there's Dr. Rao in Plano, too.

On ThanksGiving I met my aunt's boyfriend, & we got on the subject of Lyme when he asked me why I couldn't eat gluten. Well, randomly enough, he had Ehrlichiosis without Lyme a few years ago. He was treated with over eight months of antibiotics by a doctor who used the Marshall Protocol & who is LITERALLY up the street from me. I could walk there if I wanted to. So we call to register a new patient, & they ask what we'd like to see the doctor for, & my Mom says "Lyme". To which the woman on the phone immediately goes "The doctor is accepting no new patients at this time. All patients are being referred to Dr. SomethingSomething in BlahBlah, Texas." & hangs up. That town was a thirteen hour drive. Might as well just go out of state. What is it gonna take for doctors to stop treating us like we have the Plague? Scratch that, we'd get better & quicker treatment if we had the Plague. I'm knocking on wood as I say that though, hah. :/

Definitely sounds like it could be P.A.N.D.A.S./PITAND! Kinda just mirroring what SarahJane said here... I'd go straight to someone who actually knows something about P.A.N.D.A.S. instead of wasting your time. Has she tested negative for strep before or has she just not been tested? I'd get her antiDnase-B & ASO titers ran. Any P.A.N.D.A.S. doctor would do that. There's a test from a woman named Dr. Cunningham at the University of Oklahoma called a CamKinase-II test, but I don't think they're mailing any of those out until the new year & it's a tad pricey. What state do you live in? There's a doctor's list buried somewhere on this forum... When you have neurological/psychiatric issues going on being a "sick kid" can't be ignored. This is just my little theory, but I think that strep is the biggest trigger, but once our immune systems get confused other sicknesses can cause the same problems. I've got an upper respiratory infection right now. I knew I was going to get sick this week because of how bad my symptoms got exactly a week ago. It amazes me that some doctors don't see the connection between general health issues like strep & not-so-common ones like OCD & sensory issues. Best of luck to you! Let us know what you find out. <3

How exactly would one get included? I mean, if someone were to email & get a response. Sorry y'all didn't get replies!

I don't think I've ever talked to you before! I'm a P.A.N.D.A.S. teen. I'm sure you already know this, but I'm sure I speak for all of us when I say we don't mean to act the way we do. I obviously can't say much as to parenting us (can't even imagine, really), but if you ever need a second opinion or something like that, feel free to bounce any ideas off of me. I love talking.

The National Organization for Rare Diseases includes Lyme Disease but not P.A.N.D.A.S. How could we get on there??

Did everyone have a calm, happy ThanksGiving? Everyone should be out of their L-Tryptophan comas by now. Well, everyone but me & Worried Dad's kid, haha. The Tofurkey I bought had gluten in it! D: I was tempted to eat it anyway since it was a special occasion, but since I wasn't at my house I decided not to. I did the pumpkin pie thing too! I made a gfree pie that one of my sisters swears wasn't horrible, haha. The rest were too scared to try. & mashed potatoes have always been my best friend. Lots of naps were had, lots of kids were watched, & all ###### broke loose when the Cowboys lost. If you don't live in Dallas, you will never understand just how important that ThanksGiving football game is, haha.

I'm thankful for all of my CyberMoms. Special shoutout to PixiesMommy for the glutenfree stuffing, chocolate chip cookie, & strawberry cream pie recipe. & to my puppy for sitting with me in the kitchen while I cook it all. <3 I hope you all have a wonderful holiday! Now get off the forum & enjoy it!

Don't know much anything about C-diff, but just wanted to say that colitis (specifically ulcerative colitis, dunno if that makes a difference) is in the family & we don't see much, if any, nausea or vomiting from that.

I meant the people who took it seriously! There was one girl (18 yo) who LOST IT thinking she had Rett's thanks to FaceBook & Wikipedia.

UGH!!! Did you see the Facebook "Autism Quotient Test"?! Drove me INSANE! Gotta admit... I called out every single person who posted it. So stupid. You know you're a P.A.N.D.A.S. kids when your friends know better than to vent to you. "Ugh, & then Sally kissed Johnny & it was like, so messed up cos like I like Johnny & Sally isn't even cute like & like Sally knew that & like why would she do that to me? Oh my God. I am like... So depressed." ~ Friend. "I've been having a bad day too. The Babesia, Bartonella, Ehrlichia, Anaplasma, & Mycoplasma tests all came back normal the same day I had an allergic reaction to the MSLT glue." ~ Me. "Oh......." ~ Friend. (who probably has NO idea what I'm talking about anyway, haha.) You know you're a P.A.N.D.A.S. kids when your friends call you for all of their ailments. "Ailidh, my eye hurts." "Eat a mango. More vitamin D than a carrot." "Ailidh, my throat hurts." "Rice pudding." "Ailidh, I can't sleep." "Melatonin & Valerian root." They all call me Dr. Emerson. D:

PKM ~ One of my old doctors said that I had Dystonia in my records without actually telling me so for about four years. I'm more than a bit confused on that one... The area in question are my neck & shoulders, just like one of your son's. There are some days when I can barely lift my arms to write in class because of my shoulders. Bleh. Rheumatic Fever, Sydenham's Chorea, & P.A.N.D.A.S. too? Or no? I've only talked to one other parent outside of the country (they were in Denmark). What's it like trying to find a savvy doctor up in Canada? & has your son just taken antibiotics for the Dystonia or has he had Botox or other treatments? I hope others have more to contribute!

You know you're a P.A.N.D.A.S. kid when you check Latitudes more than FaceBook. & when you were too busy reading Cure Unknown & Saving Sammy to have time for stupid Twilight.

Just because I don't believe I've ever seen it mentioned on here before. Who has dealt with it? Who has recovered from it? Dystonia originates in the Basal Ganglia, just like P.A.N.D.A.S., so I'm really surprised we don't see it in more of the kids on here. That being said though, it could just be dismissed as tics. Just thought I'd start a discussion...

Y'all will be in my thoughts & prayers!

Yay!

EmmaLily ~ You are the best. I saw The Dresden Dolls, my favorite band in the whole wide wide world, on their very last tour. D: & normal for an obsessive-compulsive person is better than nothing, I suppose! Haha. Thank you for not saying "OCD person", by the way. It's a disorder, NOT an adjective! I've never expressed my fears to him. He actually is in pretty bad health (just like 99.9999999% of my family) so I feel like saying "Hey. I'm really scared you're gonna die." wouldn't give me the results I want & wouldn't be too nice. He already has his funeral arrangements & everything. We were listening to a song in the car once & he said "Up at BlahBlahBlah funeral home this song is on my funeral list." :/ NYCMom ~ How'd you know I saw the Dresden Dolls?! & thank you. It's nice to know that someone's benefiting from all this, haha. & I don't mean that sarcastically, either. I hope your little one is doing well. On a not-related-to-P.A.N.D.A.S. note... Has anyone been watching the show The Big C on ShowTime? Oh. My. God. It seems like every new episode is the single saddest thing I've ever seen. Makes me grateful to have what I do & not cancer though. The season finale took the cake & stirred all of these feelings up. Saddest thing I've ever seen on television. I don't think I can watch it next season. http://www.youtube.com/watch?v=VQedgzsuGmU

On Friday I handled a concert alone. In the middle of the pit section (no actual mosh pit. Just lots & lots of people) by myself with no panic attacks or anything. My ride locked his keys out of the car, my friend was whining & moaning the whole time, & I kept my calm. I was really really proud of myself. Even stayed up until three in the morning, which is something I haven't done since the summer. Granted, I slept until one in the afternoon, but oh well. Saturday I played piano all day. It used to be something that helped a lot but as the joint pain got worse, piano really just made me feel bad. I pushed through it & got a lot accomplished on Saturday. On Sunday I played more music, & then went to a friend's for a Harry Potter marathon. I didn't even get through the second one. :/ It's really hard to be social when all you want to do is sleep, but it's hard to even want to TRY to put forth the effort to be social when you just end up feeling really bad everytime your friend's night is wasted because of you. Morning anxiety is the worst for me, & after nights like these it's hard to motivate myself to go out because I just wake up hating myself. Today I was really tired so I allowed myself a lazy day. Woke up at noon, got home at one, watched Harry Potter, cleaned a bit, took a nap, etc... I've actually finished THREE books this school year. I've been too tired to read a book for three years now. I tried to read today & it didn't go too well, but I'm just proud of myself for starting to be a reader again. Practically everyone on here talks about/deals with OCD. I feel like a lot of what we talk about & most of how OCD is perceived is the "Compulsion" part over the "Obsession" part. I think about my Dad dying every moment that I'm awake. I cry about it everyday. I've tried to talk to my Mom about it. One day, in some attempt at opening up, I said "Mom, I think about my Dad dying a whole lot." & she said "That's weird.". I kind of gave up at that point. I asked her to get a psychiatrist recommendation but I think she forgot. Today was one of those days where I was alone all day & had nothing to keep my mind off of it. I just feel so stupid. I'm fifteen years old. I should be able to see a Dad on television without bursting into tears. I cry when I'm WITH my Dad because I'm thinking about him dying the whole time. If I'm not occupied, & sometimes even when I am, all I can think about is what songs they're gonna play at his funeral. What I would say if I gave a speech. What I would tell all of my little sisters. I'll just sit in my room for hours, crying about my Dad who isn't even dead. I feel like such a baby & I don't know what to do. ThanksGiving is Thursday & I can't stand to cry in front of my family again.

Absence of proof is not proof of absence! I'd look more into P.A.N.D.A.S. & check into Lyme (+secondary/co infections) as well, especially if she has any physical symptoms & if you live in the New England area. Lyme co/secondary infections are Mycoplasma, Anaplasma, Ehrlichia, Babesia, & Bartonella. Just something to look into! Has the Scrupulosity been the only symptom? If at all possible I'd get into touch with Dr. T. You can also email Dr. Miroslav Kovacevic in Hinsdale, Chicago. He can't tell you much through email, but he can at least tell you if he thinks you're on the right track! For now, I'd just look into some tests & trying to pinpoint any possible infections. Any vaccines recently? I don't have problems with vaccines, but lots of kids on here do. I'm so sorry you're going through this! But, you've got help here. We're our own little family on this forum. <3 Ask me anything you need!

Thank you all! Sorry, forgot to respond. I've decided on making a pumpkin pie, some stuffing, a batch of cookies (just gonna replace flour in a regular recipe for those!), & some blueberry-caramel stuff that doesn't need to be gfree. Thank you all!!! Tampicc ~ I live in Texas. Believe me, I understand about the cornbread being everywhere, hahahahah.

Gat'sMom ~ Haha! Looovely. Whatever it takes, I suppose. Hahaha. FixIt ~ You crack me up. & I sure hope I change my family's luck! We've been all kinds of sick for generations. I'm not having kids, but I know that ALL of my sisters are going to, so hopefully their kids are all well too. EAMom ~ Yes, he's fully diagnosed Narcoleptic. Has been for twenty years or so. He just has his bad days. :/

Everyone's already gotten on this question but I thought I'd chime in.. Lyme came about six years after P.A.N.D.A.S. here. I think they can definitely coexist. Well, obviously they can, haha. I think P.A.N.D.A.S. kids are just more susceptible to not being able to fend off Lyme effectively. Most P.A.N.D.A.S. kids are immunocompromised & I know most of us catch whatever is going around... I'm no tick expert, but I think it's the same kind of reasoning applied to ticks. Not every single person who gets bitten by a Borrelia carrying tick ends up with late-stage, disseminated, neuropsych Lyme, but I know that at least in my case, I'm just not making enough antibodies to fight the #### thing off. I don't know if being immunocompromised is a criteria or just a common symptom of P.A.N.D.A.S., but I think that's why we see the Lyme connection so much. Especially with particularly bad Lyme. I think P.A.N.D.A.S. could definitely play a role in a patient who previously didn't have Lyme, but now does.

Co/Secondary infection tests & PCR came back normal. Doctor is faxing me the results soon. All blood, no urine or spinal fluid. I've read that the tests for Babesia, Bartonella, etc... are all about as accurate as the Lyme ones, although I wasn't too terribly concerned with any of those besides Mycoplasma in the first place. But why would the PCR be normal? When I first started looking into Lyme one Mom on here told me that Lyme was like a snowglobe. When you shake it up, everything (the spirochetes) go swirling around, but sometimes they rest. If they weren't "swirling around", so to speak, could that be why?

Can't read it all right now but that's very interesting! Hopefully by the time that I'm working on my psychology degree, this kinda stuff will be common knowledge!

Bleh. Monday & Tuesday were just normal bad. Wednesday I had a photo shoot & the photographer kept telling me to push my hip out farther in certain shots & it kept popping & by the time I got home walking was no longer an option. Fell into a Laz-boy with a bowl of AilidhFriendly chili & slept for ten hours. Barely made it to school. Then Thursday I had my MSLT. Let me just relay the conversation that occurred at the vegan restaurant me, my mom, & my stepdad went to beforehand... "Okay, I can't eat gluten. Do you guys have rice pasta?" ~ Me. "Yes. Would you like toast with that?" ~ Waitress. "Can't do bread." ~ Me. "We have spelt bread." ~ Waitress. "Is that gluten-free?" ~ Me. "No." ~ Waitress. "Well... then no." ~ Me. I just thought it was funny. I never get mad at waitresses. They have hard jobs. But anyway. Got checked into the hospital, took them two hours to get all of the electrodes & other gear on, & then it was time to sleep. But my ear hurt. Now, we P.A.N.D.A.S. & Lyme kids tend to have pretty good pain tolerances. I don't whine everytime I scrape my knee. My. Ear. HURT. They told me it was normal & to try to ignore it. I woke up four times in the night. I haven't woken up more than twice in one night since the Narcoleptic symptoms started almost two years ago. I kept saying that my ear hurt but they just said it was normal. On Friday morning they sent me a bagel for breakfast (which just boosted my mood even more) & I felt bad for being inconvenient & asking for something else. My ear hurt even worse, & the baby in the room next to me screamed & cried through at least two of the five or so little nap periods. By the third one I was so frustrated with my inability to sleep that I just couldn't stop crying & sleep was hardly an option. It was the third day that I haven't napped since August. THIRD. Ugh! When they unwrapped the gauze from my head & took all of the electrodes off when it was time to be discharged I went into the bathroom to get all the gluey stuff off & noticed something weird behind my ear... A chemical burn. Some of the skin had died. Now it's a giant, nasty, gnarly scab. It was open for nineteen hours. I already have second degree burns on my knees, & this one hurts so much worse. How could I have been expected to sleep?! The nurse said that it had something to do with the salt solution in the glue & how they scrub your skin down before they attach it & then put tape over it. Basically he told us that "It happens" & there's nothing they could do. -___- I got out of the hospital & went out to dinner with my Dad, stepmom, & three of my sisters. I had a great time. But then I had the worst meltdown I've had in years. For no apparent reason, of course. I love being behind all of my little sisters as far as emotional maturity goes. On the way home I just lost it. As if I wasn't already fretting over the whole Narcolepsy deal, my Dad is Narcoleptic, & he kept nodding off at the wheel. He always does it. I've gotten used to just keeping my hand by his arm to slap him when he starts swerving, but I don't know what happened. I ran into my house sobbing & told my Mom I couldn't stand myself, that I felt guilty for being alive & that no one deserved to put up with me. I'm feeling better today, but the twitches are coming back & I'm just in very low spirits. :/