emmalily

I have transient arthritis with this...a couple joints that always have problems and other that flare with exacerbation. I'm only a couple years younger than you from what I can tell and living a pretty normal life with this. Have you thought about contacting Beth Maloney and seeing if you could speak to Sammy? He seems to be doing really well.

I think this is very important and, as the PANDAS patient, I have a very firm opinion on it. *I do not mean to offend anyone and this is only my opinion and experience* Please, please, please consider not forcing the ERP until you are quite sure you have done everything possible to address the medical side. I agree with Sammy, things improved for my family as a whole when they stopped pushing me to master my OCD while still sick and allowed it to play out. Before that life was h*** for all of us because they kept trying to put me in situations I couldn't handle and got upset when it blew up, and I got upset that I couldn't do it. The damage this did to my self-confidence is truly the hardest thing about all of this and I am still recovering from it, even though we all now know none of it was my fault. I could not even begin to address the OCD until my brain was functioning somewhat normally. Think of it this way: ERP tries to use healthy thoughts to control out of control thoughts. This assumes that the brain is capable of producing healthy, helpful, controlling thoughts. But with PANDAS, the brain literally is not functioning enough to produce healthy, normal thoughts. That's the whole point of it--the basal ganglia is irriated, interrupting the thought processes. So I ask you, where are those healthy thoughts supposed to come from? This could be the mental equivalent of asking your child to heal their broken leg by running on it. Therapy of some type, whether done just within the family or with a psychologist, is very important to healing. ERP and CBT techniques probably will have to be applied at some point if the OCD was serious enough. And using some in the middle of exacerbation is great if you can manage it. But, in my experience, there is definite shift between OCD caused by PANDAS and OCD that is habit. They feel very, very different. I understand many of you have young children and that it may be difficult to get answers from them about if things feel different but I would urge you to try that before going into the ERP too strong while they might still be physically ill. Again, I really, really do not want to offend anyone. I just wanted to give the most honest account of my experience as I could. By all means, trust your gut and the professionals you work with; I hope I've offered some insight to bring to those discussions.

Worried--Hi, thanks for the thoughts! I'm 21. Luckily I have come up negative when tested for coinfections, except for mycoplasma igg, which we have treated as if was an active infection (with success at the time--went about a year with OCD after doing so). Defintely believe there could be something lingering though. Your daughter's movements sound very similar to mine. I like your description of "chicken dance." I'm sure I look that plenty of times Tampicc--I'll get in touch with Diana. Thanks so much for that info. Definitely sounds like it could be a possibility.

Hi everyone, I was wondering if anyone whose kids have choreiform movements as a symptom could shed a little light on a problem I'm having: As I've said before, I still have some physical problems left over after PANDAS, one of which my doctors are calling "prolonged dysautonomic attacks" for lack of a better term. With them I have a high heart rate, a very upset stomach (upper and lower GI at the same time) and lots of uncontrollable squirminess and jerking/waving movements of my arms and legs, and violent shaking. They're definitely neurological in nature and I've been told that they will probably go away the longer PANDAS in remission for me. Unfortunately, a couple of weeks ago I realized I needed to go back on antibiotics because I was having a little OCD, mostly food restriction and repetive thoughts. I did so and felt better very quickly. But these attacks I've been having (which I had pre-PANDAS diagnosis, during PANDAS treatment, and still while off antibiotics over the summer in equal strengths) are coming on stronger. I was down to about three a month and this month I have had 14. I started to wonder if this was chorea. I never had overt tics so I've really concentrated on talking to the docs about my OCD. I've told them in detail about these attacks, but I'm wondering if not being able to see me do it, are they not even thinking maybe chorea? http://www.youtube.com/watch?v=RsIQFeYOkAg I look pretty similar to this poor kid, but maybe slightly less active (I try to hold it in). So anyway, my big question is this: with PANDAS, have you seen that chorea is constant for days on end or can it come on for spurts of an hour or so, then disappear and return again a day or two later? Thanks in advance!

Hi Nancy, I had no problem getting accomodations for my ACT's. I can't remember if I based it on PANDAS or just on a medical condition where I would need breaks (may have said "IBS"). I got to test in my own room b/c I was the only student that day who needed these particular accomodations. I got "stop-the-clock" breaks which I could use to relax/decompress or go to the bathroom. They were FANTASTIC. I wish I had known about these during other testing in high school. I had already started PANDAS treatment so didn't have much anxiety left at the time. I used my 504 from high school. It was very, very easy to do--no hassle whatsoever. The people from ACT helped me get it set up. And the teacher I tested with was from a school with mainly autistic students so she was very understanding. I'll try to find my letter of request for you, but I honestly have no idea what I did with it... Tell your son good luck!

Yes, I definitely experienced that as well. Only during my very big exacerbation in '08. Things are pretty blank from midterms (when my high school boyfriend had a strep throat infection) until prom, when I seemed to come out of it for a few weeks. The things I do remember have a dream-like quality. Some are very distorted. I don't know if I have honest-to-goodness memory loss or if I'm blocking it out, but either way I hope I don't ever really remember.

Can you get some anti-inflammatories into him? Aspirin? Curcumin? I personally had great results using curcumin with my second dose of antibiotics right after I got my diagnosis. Wish I had some names for you...but the doctor I see took four months for me to get into him. I can give you the info on him anyway, if you would like. He's in CT.

Sorry, no go folks, I hate medicine haha. But I do have three pre-med friends, two of which I'm talking up to PANDAS to, and one of them is a junior undergrad at Berkley planning on going into infectious disease so...I'm trying

Thanks everyone!

Hi, It's going alright. I'm still sorting out some lingering health issues (GI stuff and some general dysautonomia (both of which my doctors believe are tied to the autoimmune part of PANDAS)) but they are minor in comparison to where I was in the middle of PANDAS. I have been off antibiotics since May 9th, but I have them stocked just in case . I took them with me on vacation this summer, never know when/if something might crop up. At the end of August I had two days about a week apart where I felt some OCD creep in for a couple of hours. At the same time I was broken out in hives and having serious hayfever (all the goldenrod where I live had just bloomed). It went away quickly both times. It had been the first allergy season since starting to treat PANDAS that I had been off antibiotics. I think in the spring when things start blooming I'll just up the antihistamines and that should probably take care of it. I still have some small sensory things, but nothing that really interrupts what I'm doing. I just passed a year from the point where my day-to-day OCD went away. Pretty cool. Turning 21 next month! Thanks for checking in with me. I'm not on as much but I check every once and a while and think about you all. And just a funny story for you guys: I was dreaming this morning that I was back in school and that a teacher kept sending me to the nurse's office to pick stuff up for him. After I got back from the nurse's office I couldn't stop washing my hands. It never felt like it was enough and I was really starting to freak out--and then I woke up. I just laid there in the dark laughing at myself, going, "Phew, glad that wasn't real." It gets funny eventually. What a thing to have a nightmare over. How's it going for you?

Hi, just wanted to give a little update for you guys because I've seen so many of you recently questioning where to go next with your kids and when things are going to get better, and I wanted to share whatever I could to remind you that is so, so, so a fight worth fighting. Anyway, I just finished responding to an e-mail from one of my best friends from high school. She moved across the country after freshman year so we barely see each other, just e-mail a couple of times a month. Lots of times over the last couple of years I've felt kind of jealous about how much fun she's having and how much she's accomplishing at college. And I just got another e-mail from her full of a lot of awesome stuff she's done this summer. But I didn't feel jealous at all because I realized as I was typing my response, I had just as much good news to tell her about how my summer has been going. It was definitely a first. Right now I'm at 11 months OCD free and looking forward to celebrating a year in September (as long as I don't come in contact with any nasty strep between now and then ). I'm not going to lie, I definitely have some residual health issues in the form of secondary dysautonomia (diagnosed by a PANDAS-knowledgable neurologist, not my regular PANDAS doctor; it's currently under control with some herbal medicine) and the mysterious GI problems I've had since the beginning of PANDAS that we're still trying to work out--but it's all so much more doable now. On that note, I just wanted to let you know that I'm going to try not be on the forum as frequently any more as I kind of feel like I don't need to think about PANDAS everyday. But, I know I've talked to a lot of you privately and I hope I've been helpful in sharing my experience so please feel free to message any time you have any questions! I'll make sure I set an e-mail alert on my inbox here. I hope you all know how much of a support you've been to me over the last year and half!

Just wanted to comment on the distraction while doing homework bit--I always needed my music playing loudly to get my homework done. It wasn't defiant, teenager playing her music too loud--it helped me get the work done. It was actually considered for my 504 at one point before I left school that I should be allowed to listen to my iPod during quiet work times and tests at school.

Hi, I'm Kay's daughter (Sorry for post-jacking, Mom, but you're asleep ). The Biaxin really did take away the last of the OCD for me. I stayed on Augmentin just in case until May of 2011 and have been off everything for three months now without anything returning. The Biaxin was definitely important for me to do but we're not really sure why it worked. I did have the myco p igg and that's what spurred my doctor into eventually trying Biaxin after eight months of Augmentin/Omnicef hadn't completely relieved everything. I honestly don't know if Biaxin is better or what than Azith--hopefully someone else will be able to chime in with that.

Just want to say, as someone in remission from PANDAS, your thoughts are so badly scrambled by the OCD sometimes that you don't know what's up or and what's down. What I mean is, it's very, very possible that it is PANDAS keeping her from being able to think logically, not actual "denial." So if it's still the disease keeping her from thinking straight, that may mean there is further infection/autoimmune stuff to uncover. If that's the case, CBT may not be any help whatsoever. At least that was the case for me. I had one CBT meeting after a couple months on antibiotics and I knew that what the therapist was asking of me would be impossible for the place my brain still was. So I decided I would hold off on that until my thought patterns got back in order enough to actually be able to accomplish anything with therapy (but in the end, after the right combination of antibiotics, I never ended up needing CBT). So anyway, my point is, the CBT may not be helpful if her brain (her physical brain, the inflamed basal ganglia, not her thoughts/mind) isn't able to think clearly enough to work with the therapy. Best of luck...hope you find something that relieves this for you and your daughter!

I love that others are experiencing this! (well, not that we have to be experiencing it, but that it's a common thing and not just me). It reminds me of arguments I had with my sophomore and junior math teachers that would go something like this: "I understand that you keep saying it's an irrational number and that I should just plug it into the equation, but why is it irrational?" "It's irrational because it's...irrational." "But why is it irrational?" "Because it is." "But I don't understand why I should treat it differently than any other number." "Just plug it into the equation, you'll do fine." This same conversation was repeated with Pi and imaginary numbers (don't get me started on those!). A serious mental block on it for sure. They never got that I didn't understand meaning of things, even if I got the concept and the general idea on how to play out a problem.

Ah, same with me--that's why teachers could never believe I was having trouble because most of the time I was doing well--I just had no idea how/why/what was going on. There's a serious mental block going on there for me that there never was before age 14 (onset of more serious symptoms). Did you get the math theory but not the execution? I was always fine with theory (loved physics!) but when I tried to work out the problems everything seemed to get tangled up.

Oo, that's great you're doing that! I'd love to help but I'm definitely not even close to fluent right now; I haven't practiced either in about five years. With the Latin, I could probably do it, but I doubt there's any need for that haha. Very cool about your embassy job--hope it goes well for you!

Actually, yeah. I'm not fluent, but I've taken several years each of French, Spanish and Latin, and several courses in American Sign Language and managed straight A's in them all...I pick them up really quickly, but then tend to lose them after a few months without practice. I also had a difficult time with math during PANDAS exacerbation but had been pretty good at it before that. But that seems like a pretty typical thing with PANDAS... Don't know what that would all mean exactly...but interesting that we've both experienced that.

A computer analogy would be really great, because kids really get that. Relating a PANDAS brain to buggy software has always made sense to me: everything's there but it's just not working properly right now.

I just read it online in several different places and was upset because I never thought of myself as having "autism." I understand why that would be upsetting but don't let someone else define PANDAS for you. You know what it's like and if you don't feel autistic, then you're not autistic. I've read that several times too and asked myself the same question, but when it comes down to it it's very obvious that my experiences with PANDAS are very, very different than the experiences of the autistic and Asperger's people I know. Is there some overlap? Sure, as there is with many other "brain disorders" (neurological diseases, mental illnesses, physical illnesses with mental symptoms) and maybe that's why these writers you read online try to "place" PANDAS on the autism spectrum...but I think it's safe to say that if you're only experiencing clear-cut, classic PANDAS, there's no reason to think it's anything beyond that.

Burt's Bees blemish stick. Combo of tea tree oil and some other natural stuff. I do think it contains alcohol, if that's something you're worried about, but it's certainly alot better than some of those acne treatment systems. The blemish stick works really, really well. You can find it at CVS.

Just wanted to let you know Dr. K has some more info on this "adolescent adult variant" on his website.

What does your couselor say about this? If he's completely supportive he should be willing to go fight for you. Can he get you a meeting with your principal? I ended up doing that and it worked a lot out.

Definitely could be thrush (yeast). I have a friend who has chronic thrush thanks to steriods for her asthma...definitely looks like it could be strep pus...kind of slimy white clumps. She can feel them when she swallows...are you noticing that?

I do every 3-4 months...been OK so far and that's on Augmentin 1000 XR for most of that.