MomWithOCDSon

You mean you weren't notified?!?! Shocker!

Johnsmom -- Just another few words of empathy and support. Been there, done that. Even though we don't get a lot of push-back from a majority of the decision-makers in our school district, there's always one person on the other side of the table who's job it is to limit the district's culpability and financial investment in our DS. It's incredibly nerve-wracking and sometimes downright physically painful. No matter how prepared I am for each meeting, and how much I psych myself up beforehand, my throat threatens to close up, my heart rises up into the back of my throat, and my eyes well up when I open my mouth to advocate. I don't have to go to the gym and work out on meeting days because I've already gotten a full-body work-out by the time I walk out of that room! Hang in there! When you can, raise your head to look around the room again, seek out that pair of eyes across the table that express compassion and understanding for your kid. And then reach out to that one person, especially, with your words and your passion. You WILL get what your child needs!

That was great! Laughed 'til my sides hurt! The only thing that dampens the hilarity is the fact that some people actually have to deal with morons like that!

Wornoutmom -- We have the very same thing with movies! I think it is a combination of OCD and legitimate processing differences in some of our kids. In our DS's case, his auditory processing seems to lag a bit, and then the OCD doubting kicks in and he becomes convinced he's missed some key plot device or dialog or character trait. So we pause and discuss, or we sometimes even rewind so he can "catch" what he "missed." As he's improved, we've tried to take a harder line on the pausing/rewinding thing as it seems very closely tied to the OCD but, to be fair, the processing is definitely different. It may also be tied up with short-term memory function; I know I've read several accounts here about how challenged short-term memory function is in some of our kids. Even that trait gets caught up with what's more commonly understood as "ADHD," as in, it's not that they're forgetting . . . it's that they weren't paying attention in the first place. But I know our DS pays very close attention at some points . . . almost obsessively so . . . but is either literally forgetting our so strongly doubting what he remembers, that it's all for naught. From our personal experience, the OCD angle works pretty well with the academic community. There's quite a bit of literature to support the behaviors and accommodations that most "newbies" consider "legitimate" (as opposed to anecdotal, which our school is not especially fond of), and, in the end, you want accommodations that help your child in the learning environment, whatever the seed of them may be. Good luck in your meeting!

I'm not aware of any established opinions regarding reading cognition as a result of PANDAS, but if your DS's PANDAS behaviors include OCD, I can direct you to some professional opinions on related academic conditions, included ADHD-type distractability, and our personal demon, "Obsessive Slowness," which results in his homework taking him much longer than it does a peer of equal academic prowess. This is a very good resource: OCD Chicago - Expert Perspectives

Yes, that's the stuff! We swear by it around here! Really rich, but not greasy. Can get it fragrance free for sensitive noses, and it's also somewhat impervious to water, too, so once it's on, even if a washing compulsion overtakes, the skin is still protected!

First, we worked out a rewards system for DS to reduce his handwashing altogether; first, we would coach him to delay washing for just 5 minutes (which, with the delay, he would sometimes forget about washing them altogether). Once that gained a good foothold, we moved on to rewards for not washing except at meal times or when it was obviously a time that "normal" people would wash. We also use soap with moisturizer in it, like the Soft Soap with aloe in it. And, most recently, I took a Bed, Bath & Beyond coupon and purchased one of those battery-operated, automatic liquid soap dispensers. It has three settings for the amount of soap it will dispense, so we set it on the lowest one to prevent DS from using too much for a single handwashing. That has really helped a lot. Finally, for dry skin on his hands (which our DS is prone to anyway, whether he's in an excessive handwashing period or not -- he had eczema as a baby still has flare-ups on occasion), we've tried lots of things, including Aquaphor and Eucerin. In the end, we've found that DS prefers the concentrated Neutrogena Hand Cream; it comes in a fragrance-free formula, and it doesn't have a slippery, greasy feel that he dislikes. Plus, it's very concentrated, so just a little bit goes a long way. DS puts it on at night, before he turns in, as well as before he walks out the door, into the cold. We keep tubes of it by the door and in his nightstand. Good luck!

Thought I would bump this for those, like me, who were so jammed up with the holidays and business calendar year-end that I could barely see straight! And this got put on the back burner . . . until now. Very grateful to ACN for hosting this forum, and to all the participants who have been founts of information and support for our family. Happy New Year, and the check is really, truly in the mail!

Interesting! We've had no complaints about nightmares, and we've tried everything from 1 mg. to 3 mg. here . . . basically, whatever I could get my hands on at the time. But when taking the 3 mg., I was feeling sluggish in the mornings, so I began to think maybe it was even too much for me. So now our whole family (including PANDAS DS13-almost-14) who's 140 lbs.) has settled at 2 mg. All's well thus far! Thanks for the info, though. Who woulda thought?!?!

Thanks, P. Mom. Another quiver for my arrow!

Emerson, that completely stinks. Can certainly understand if you need to take a break, but please don't "cut off" a source of continued support for yourself! Cyber-moms and cyber-friends will still be here when you're ready to return. Know that we're thinking of you and supporting you from afar.

We've been dealing with OCD in our home for a long time and, initially, with the support of his CBT therapist even, we would do what we called "throwing the OCD a bone." Meaning, while there some non-negotiables (such as those noted previously here -- those behaviors or demands that might negatively impact health or safety), we would pick our battles and sometimes indulge -- or allow DS to indulge -- an OCD thought or compulsion, so long as it was not disruptive. As DS has gotten older, however, and the OCD more insidious, I've come to wonder about our earlier complicity. I know it "helped" us short-term, but did it hinder him long-term? My personal fear is that maybe it did, and we've been unwitting participants in helping the OCD grow and gain a more substantial foothold. I also see and hear what others say about how, unless there's some palpable ability on your child's part to engage in exposure response prevention therapy, expecting him to do so or insisting that he do it may be unrealistic. I know that when our DS was in the depth of his PANDAS, prior to antibiotics, he had a very low threshold for attention, frustration or challenge. Still, at least in his case, there were some gentle ERP exercises and everyday measures that he could take, so long as we made it clear that was the expectation on our part. Also, we moved from our existing CBT therapist to one who is specifically focused on ERP and anxiety disorders, and that additional support for both DS and us as his parents helped tremendously. In the end, I think, past a certain point, you cannot demand that your child complete his ERP exercises or move past his compulsions without engaging in rituals, etc., but you should be able to remove yourself as part of the OCD's scheme. Basically, by joining in his indulgence of the OCD, no matter how much you may verbally eschew it, you're still tacitly supporting it's attempt to control your DS and the situation at hand; actions speak louder than words, especially to bright kids, no matter how overwhelmed they appear to be. So, when the going gets tough in our house these days, we're apt to tell DS, "We're not going to let the OCD boss us around; the choice you make in that regard is up to you." So, we won't rewind the movie for a third time so he can make sure he got every syllable of dialog, and we don't allow him to confess his latest imagined transgression. When he wants to indulge a ritual rather than get his jacket on and out the door to school or an appointment, we tell him, no, it's time to move on. Sometimes it does create more chaos in the short run, but we've seen the long-term gains as he becomes better and better able to recognize that the world doesn't revolve around OCD, and perhaps he's better off if his world doesn't revolve around it either!

I would try the International Obsessive Compulsive Foundation (IOCDF) web site. They have a "Find a Therapist" section. The IOCDF is a great resource for OCD and especially ERP. You may even have a local branch that would be of even more immediate help to you. IOCDF - Find a Therapist Good luck!

P Mom -- Thanks for the post. One of the concepts I'd like to circle back around to here is the whole idea that we should, as adults, responsible parents and caretakers, always "consider the source" and weigh, internally if not externally, the credibility of the sources. Is it surprising that a doctor who specializes in PANDAS will frequently diagnose PANDAS? Probably not. And in the same way, I would be surprised to find doctors who specialize in Lyme who do not diagnose Lyme more often than they declare it definitively to not be Lyme. I think this is particularly true when dealing with illnesses that require clinical diagnoses, and for which definitive testing remains elusive. What impresses me most about Dr. Cunningham's response, meanwhile, is the fact that she is Dr. Cunningham. A researcher. A researcher who began with Syndeham's Chorea, not PANDAS. A researcher who, while she provides testing and testing response for many, has no patient load whom she treats for SC, PANDAS or any other malady. I have seen Dr. Cunningham speak on several occasions and have corresponded with her, as well. In each instance, she has gone out of her way to prevent her research, findings and presentations from being extrapolated outside the parameters to which she can directly attest. She's not about forwarding or refuting any agenda; she's about conducting her research, protecting its credibility, and moving her very defined science forward. And as someone else here said, she's now in consultation with some Lyme experts, so she is clearly continuing on an open-minded though stringently scientific track in terms of her work. For me, anyway, that further supports the credibility of her response. She's not talking without having done her homework or without having any context or framework for her feedback. I have sort of a radical perspective in a way, I guess. There's a lot of talk here on the PANDAS forum that one should seek out a PANDAS expert doctor with whom to consult. And from those who are dealing with Lyme and suspect a broader Lyme element in our children's illnesses, I frequently hear that one should consult a Lyme expert. In full disclosure, we have seen one of the PANDAS experts for our DS, though it was fairly far into the PANDAS experience and did not provide any particular revelations, change the course of our DS's treatment, or radically alter anything about our understanding of the illness or how we would contend with it as time went on. Our DS's treatment has thus far come by way of the skeptical pediatrician and measuredly-responsive psychiatrist we've known for over a decade, informed and supported by the information research provided by the likes of this forum, Dr. C. and others in the field. Neither of these practitioners expected to find PANDAS, but both have been willing to help us treat it based on the evidence presented by our DS himself and the available research. So, while I think it is certainly worthwhile to consult with an expert (or emerging expert) in a field, I'd also like to suggest that there is much to be gained by seeking opinions and/or treatment from practitioners who are open-minded and curious, but perhaps not so set into a given specialty that their perspective is predominantly informed from that narrow field of endeavor. A little skepticism can be a good thing; it can cause us to engage in more critical thinking, rather than allowing our emotions or what we hear in places like this (however well-intentioned) to run the whole show, the whole time. A little "hold on here, give me a minute to process this information" when you share the latest research with your standard pediatrician or immunologist or psychiatrist can be a good thing, provide balance and pace to the treatment response, and actually give your intuition a chance to settle a little so that there's a greater likelihood you really are responding to intuition rather than desperation, frustration or emotional exhaustion.

Joan -- I don't know that this could account for all of this, but our DS always loses weight during exacerbation. We have attributed that to his whole system being "revved up," burning calories at a furious rate with fidgeting, anxiety, etc.

Gosh you guys! Thanks! But honestly, my DS may have only one mom, but over the last year or so, he's gained a couple dozen Cyber Aunts and Uncles! I appreciate your giving me some credit, but without all of you, we would not have arrived where we are now. So thanks to all of you again! Plus . . . DS is a WARRIOR! No matter how much I've wanted to take the pain, grief, and anxiety on his behalf these past months, he's had to do most of the bearing of it all, with me holding his hand through it. He never ceases to amaze me with his resilience, resolve, intelligence and humor. I'm just so happy to see him reap some rewards for all the hard work!

Please forgive a proud mom for a little boasting. After more than a year of PANDAS struggles, we're still in that "delicate balance" stage where everything continues to get incrementally better, but the increments themselves are very small. So, some days, you're just not too sure. But today . . . This was our last day of school prior to Winter Break, and DH and I attended a special science program at DS's school in which DS was giving a presentation and competing in a robotics design, construction and programming display. DS was calm, cool and collected and did a phenomenal job on his presentation . . . not a nerve in sight! On top of that, his teacher pulled me aside to fill me in on another accomplishment. Apparently, DS's eighth grade class voted for their Superlatives this week: "Best ______, Most _______, Most Likely to _______," etc. Apparently, they vote just before Winter Break so that photos can be taken in time for publication in the school Yearbook. DS was voted by his class "Most Likely to Cure a Major Disease." Most of his classmates have no clue about PANDAS, so I don't think there's any intentional irony in that. I'm just so pleased for him that it's not just his teachers who have rallied behind him and his recovery. That even though he's still a little "quirky" and "uncool" by junior high standards, on some level, at least, there is an appreciation of his gifts! Happy holidays, everyone!

We're in the same boat as WD. DS is a straight-A student again, but it is not without a fair amount of both a) struggle and accommodations by the school. I agree . . . those accommodations are key because when he needs them, they're there to support him. When he doesn't need them as much, he doesn't access them as consistently or to the maximum permitted degree. But having that "safety net" is invaluable. Interestingly, our IOCDF newsletter arrived in our mailbox just a couple of days ago, and in it was an article written by a PhD (name's not coming to mind at the moment) titled "Obsessive Homework." DS and I read the article together and were almost bowled over by the similarities described there and what DS experiences, especially when he's not fully healthy. I made a copy of it and routed it to DS's teachers, IEP caseworker, school social worker, etc., I thought it was so great at illustrating what he's dealing with and going through. Speed . . . or lack thereof . . . is our biggest remaining issue, and this article gets to the heart of that, for sure.

Thanks for posting! I had never seen this, and though it has many similarities to the speech I did have a chance to see at the 2010 Autism One Conference, it hits on a number of other items, too, that she was too rushed to give much time to at this later speaking engagement. Now I've recorded the link (and made some notes) to share with our healthcare professionals, as well, since this is, I think, though a bit more dated, a more comprehensive outline of her research and findings.

Thanks for the article . . . interesting. Oddly enough, our DS did not seem to get any positive impact from Prozac, no matter what the dose. We switched to low-dose Luvox this summer after talking with some clinicians at the IOCDF conference, and that's been very supportive at a low dose. I wonder if it also has some anti-inflammatory characteristics?

TH -- No, the germ/contamination fear in PANDAS is really not any different from "typical OCD." For the most part, the distinction between "standard OCD" and PANDAS OCD as of now is about the OCD behavior surfacing on the heels of bacterial or viral exposure, and/or knowing that your child has an auto-immune condition and displays OCD behaviors, versus OCD which manifests completely devoid of any such infectious link or auto-immune conditions. And, of course, if your child's OCD behaviors are due to PANDAS, then medical treatments like abx, anti-inflammatories, IVIG, etc. will improve that behavior or sometimes eradicate altogether. If there's no underlying PANDAS condition, however, those interventions are not effective against the OCD. But the OCD behaviors themselves are identical, in our experience.

Yes, and for some of us, both abx AND low-dose SSRI's bring positive effects, so we muddy the waters yet more still!

It could be that she's being activated by the Celexa, especially depending on the dosage; there's a paper by Dr. Tanya Murphy advocating that SSRI's be used very judiciously with PANDAS kids, when they're used at all. And we have found with our DS that a little goes a long way, and that he has actually fared much better on a considerably lower SSRI dose than his psych originally thought appropriate. Also, can only speak from our experience, but Seroquel was a disaster for us, as was Abilify and almost all of those "anti-psychotics" some psychs add to anti-depressants, supposedly to increase the efficacy of the SSRI. I'd be especially wary of that one, especially if you haven't noticed it assisting her and the troubling behavior is somewhat related to your use of this drug.

I don't know about that. Have you seen this paper? OCD and Ibuprofen Of course, maybe this goes more to say that, in truth, there's no such thing as "regular OCD" versus PANDAS OCD: that ALL OCD is the result of inflammation in certain brain centers as the result of some trigger mechanism, whether that's infection, heredity, stress/cortisol/hormones, or a combination of two or more of all of those.

This is really interesting to me; maybe the study of migraines can shed more light on what's happening inside our kids' brains due to inflammation? I had a similar experience, Smarty, and I'd never put it together in any parallel with what my DS does through during exacerbation, but there are definitely some similarities. Many years ago I had what they initially termed a transient ischemic attack (TIA) and later revised to an "atypical migraine": no pain, but I lost use of my left arm for about 20 minutes, and my mouth would not work. I could hear, I could think, but I couldn't speak. It only happened that one time, never before, and never since, and it's been almost 10 years now. Sometimes DS will report that he just can't "think straight," can't sort out thoughts and ideas . . . it's as though his brain is literally flooded and none of the levees or drains are operational. Sometimes he will report also being physically riveted in place; he claims he feels he can't move. But then, 15 or 20 minutes later, he'll be fine again, and he'll sit down and hustle through some challenging math homework like it's no big deal. PANDAS/anxiety and migraines have something in common, maybe? Aren't migraines like a temporary "swelling" or surging of blood vessels in the brain?