MomWithOCDSon

Well, it worked for us! DS was given an IEP for OCD before we knew about PANDAS or began to treat effectively (with abx). By his "official diagnosis," they knew we were doing everything we could (therapy, psych meds) to meet the situation, basically to no avail, so they basically had no choice but to expand his accommodations and make social services available for him in the school environment, as well. Without the support of abx or steroids, I'd be willing to bet the vast majority of our kids would qualify for accommodations, no sweat! What I'm not sure of is whether or not the schools would specifically accept "PANDAS" as a diagnosis for those accommodations, or if, for at least the next while, we'll have to acquire those accommodations via alternative "labels" like OCD, TS or, as I think someone else mentioned, "emotional lability."

As I understand it, the streptozyme test is actually testing for the presence of strep bacteria in the blood, rather than the antibodies. Since your DH's titers appear low, but the strep is positive, perhaps its a new infection or re-infection? Theoretically, since he's strep positive, the ASO should rise in the next 1 to 3 weeks, and the AntiDnase B should rise within the next 6 to 8 weeks.

I'm just a parent . . . not a teacher or administrator . . . but I've not heard this "interpretation" of the law with regard to 504's. In fact, I just came back from a meeting with my DS's IEP case worker, and there was no mention of any sort of "global shifts" in the world of academic accommodations, whether 504 or IEP, which I recognize are substantially different in their own rights. Is it possible this is just this director's "interpretation" of the law? Frankly, I've never really understood the unwillingness of some districts to agree to 504's (which do not automatically entail special school services and therefore cost the district nothing or next to nothing to grant) or IEP's when a kid obviously needs one to be effective in the school environment. The goal is to help EVERYONE . . . teachers, student, classmates, parents . . . have the most productive, successful school year possible. It really chafes me when bureacracy gets to make decisions of ease and expediency (and thrift) over what is best for the kid.

I like it, Alex. With your permission, I might even borrow it, replace "Dr. Rioux" for "Dr. Schulman" (for Stanford Schulman, Chicago Children's Hospital's infectious disease "expert" who recently panned the entire concept of PANDAS and thus poisoned the lake for a lot us Chicago-area PANDAS folks) and send it on its way to our local papers, as well! Why such obstinance among people who are supposed to have some level of intellectual curiosity?!?! It's appalling.

Cool, thanks again, Vickie. Just by-the-by, if you make any connection with the autoimmune/narcolepsy folks, it might be helpful to mention that there is a strep antibody component to narcolepsy, also! I first heard about it on a Discovery Health show and then was able to find a study about the prevalence of strep antibodies in persons with narcolepsy! Could be an alliance made in heaven! I posted a link to the research paper a couple of months ago on a narcolepsy related thread here, should you need it for some "alliance building." I can also email you a copy of you like.

I'm not disputing what's been said here, as I don't have any inside information, but just for clarification: How do we know for certain that the funds Beth is collecting from sales of the CD's, Toolkit, etc. are NOT going to the PANDAS Foundation? I would want to be 100% certain of that accusation before either accepting it or passing it on, and I'm curious as to how anyone could know definitively that this is the case? Admittedly, if proceeds ARE going to the Foundation, she would be well-advised to make a statement as to that effect on the site and where charges are posted.

My son will bang his head with both fists, one on either side, when he gets exceptionally stressed. I see it as a compulsion, not a tic, because he does seem to be able to control it if I call his attention to it.

Wow. I'm speechless. Well, almost. Grace, sorry you were so misled initially. Frankly, I am very surprised myself. "Saving Sammy" was my first real introduction to PANDAS, and upon reading it and recognizing many amazing similarities between Sammy and my own DS, I reached out to Beth via email; this was shortly after the book was first published, around mid-October 2009. At that time, Beth was amazing; she emailed me back immediately, offered support and advice, and encouraged me to move forward with my DS's diagnosis. And, for the next several months, especially before I found this forum, Beth never failed to respond to an email question or request for her experience or advice. And, no, I was never charged a dime or made in any way subject to quid-pro-quo. I know, also, that there have been other PANDAS families who've had direct and frequent contact with Beth over the last several months and have equally positive experiences to report. That being said, Beth recently also directed me to the "Toolkit" loaded on her web site; she failed to mention there was a cost attached. Most specifically, she said that there is a full, detailed medications schedule loaded there as was implemented for Sammy's "recovery," and I was interested in the timing of changes in dosage. It wasn't until I logged onto the site a couple of days ago that I realized the Toolkit was available at a price. You have found here, however, a treasure trove of experience, information and support; it has been almost my sole "go-to" resource for the last several months. Hang in there, poke around, ask questions, PM a poster when you need something more indepth, etc. We are all here for one another, and now that includes you, too!

I dropped in a fresh thread with an exclamation point on this, but since this is the main thread . . . If you're trying to vote via Internet Explorer, that might be part of the problem. Apparently, some settings in the Explorer gum the site's download up, especially with regard to the comments. So, use Mozilla Firefox web browser instead, and it is QUICK, QUICK, QUICK!!! I was able to place all 10 votes in less than 5 minutes, and I think it only took me that long because I was hunting around for Vickie's "picks"! If you don't have Firefox on your computer, it is a free download; see the other thread for a link for the download.

Folks, my DH, when he was trying to get the PEPSI REFRESH PANDAS link on his website, noted to me that when he navigated to the PANDAS page via Mozilla Firefox, there was no lag time at all . . . no "freezing" while the comments loaded! So, I tried it just now via my own computer, and it held true yet again! So, if you have both Firefox and Explorer, use Firefox for voting, and encourage your friends and family to do the same. If you don't have Mozilla Firefox currently, it is free browing software and can be downloaded from the following link: Mozilla Firefox Web Browser It must have something to do with Internet Explorer's security settings or whatever that grinds the site to a halt! Happy Voting!

Unless your child has another identifiable immune condition (such as immune deficiency), most (dare I say "all" now that Universal Healthcare has changed its policy?) insurance will not accept a "PANDAS" diagnosis as appropriate for IVIG treatment. I don't think it even has a code for most insurance companies, so perhaps that's why prepayment is necessary?

Can I give our pediatrician your phone number so she can set up a "play date"?!

I try voting from my work computer which is brand new, and our internet connection is equally modern, so I don't think it matters what's happening on our end; I think it's the Pepsi end. Also, my DH has tried to drop the "voting widget" onto his own web site so that we could make voting easier for family and friends, and the widget itself is not currently working. He says the coding is bad; he's trying to rectify it with the folks at Pepsi, but it is his impression that their web staff is not entirely up to speed or prepared for the kind of onslaught this initiative would bring. Vickie, I tried that "fast link" you sent me, but unless I have a Facebook or Twitter account, I would still have to click the link and open up the actual page, no? That's the issue I'm running into with some of the "older" family members!

Man, though, I think someone else already said it on another thread, but can we get Pepsi to "wipe" those thousands of comments from last month or something?!?! Not everyone I can get to vote likes or has a Facebook account, and the site just really drags so badly! Thanks again for all your efforts, Vickie and Kelly (and others?!)! Let's hang on to that Top 10 this time through!

Not specifically, but I have seen seasonal allergies increase symptoms. Since allergies are an immune response, it makes sense to me that they are connected.

Do you have a therapist or a doctor who can either appear at the meeting or send along a written evaluation of your son's condition and how it might impact his ability to function in the academic environment? Either of these would add "professional heft" to your position and help assure the school that you're not looking for accommodations that give your son an edge; your looking for accommodations that will keep him on level ground with his classmates.

Good question. And one, unfortunately, no one was able to ask because the session ran full-length and Dr. Swedo took off immediately following; there was next to no Q&A time. If the eight-year study concluded in May, it's entirely possible she has not yet "sifted through" and compiled all of her findings yet. And she strikes me as a very cautious, detail-oriented researcher who is not going to opine prematurely or speak extemporaneously on a topic such as this. Among other things, her reputation is at stake. LLM, did Swedo indicate when the results of the study would be published, perhaps, during the think tank session? Perhaps that's part of what is to be unveiled in Washington, D.C., at the IOCDF conference?

Yes, pretty much all the presenters, beginning with Swedo herself, acknowledged that once the immune system has been "tripped," subsequent infections and viruses (I don't recall allergies specifically being named, but as they are an immune response, I would assume that would be agreed to, as well) can trigger a fresh PANDAS immune response. I think we need to work hard on making some concise, thoughtful suggestions for the NIMH web site, as suggested by LLM and noted by Vickie. It's no so much that we need to convince Swedo, Cunningham or any of the others who've dedicated themselves to this field; it's that the available literature is so far behind the curve, and we need those sources that our general medical community relies upon (like NIMH) to have the "latest and greatest" information. We have to be prepared, of course, that NIMH will more than likely not be willing to publish what it considers to be "purely anecdotal" at this point, without research substantiating most, if not all, of the info.

As for the first note, our psych told us that "OCD is actually one of the best understood and most studied psychiatric conditions of the 20th century," so I think that, when those symptoms seem clear (in our case, DS began the handwashing abruptly in first grade), the medical community has historically felt perfectly comfortable issuing the psych diagnosis, without any concern that they could be wrong. Plus, to be fair, our DS (and perhaps many others, as well?) was not given psych drugs right off the bat. Rather, we were referred to therapy. The drugs came about 16 months later when he had an exacerbation/wax that was too powerful for therapy alone (or, seemingly, the ability of his immune system to "self-rebound" at that point in time) to assist him. So now, we're "muddying the waters" for a lot of medical professionals; they thought they knew what tics or OCD "meant" in terms of a diagnosis, and now we're trying to basically undo/revisit 50 years of "secure" diagnostic history. I don't feel bad for the medical community, but I guess I can understand why some of them are balking. Like the guy who first discovered that stomach ulcers are caused by bacteria rather than "stress," we have some misinformation and long-standing "knowledge" to undo. As for the insurance companies, maybe I'm jaded by personal experience, but I've yet to find a large one that puts its money where it's mouth is when it comes to preventative coverage versus dealing with the "fall-out" when preventative or even non-crisis care is foregone. Somewhere, some actuary has run the numbers and demonstrated, for instance, that for every one person who actually develops colon cancer and will need covered care for the illness, there are 99 who will ask for a colonoscopy at the age of 50 and seek coverage for the preventative diagnostic test, but never actually develop the illness. So, the colonoscopy is considered "routine care," but it is NOT, in our large company coverage, at least, considered "standard of care" as is a pap smear, so it isn't a covered preventative measure! So the company is willing to take the bet that it might have to cover catastrophic illness measures for the one person with the actual cancer, while it saves money by refusing to cover the preventative measure for the other 99. Insurance is about playing the odds, and companies like Aetna, BCBS and Universal have got it down to a science. Until they are compelled by law to make decisions out of conscience, rather than solely finance, I don't believe there will be any real movement there.

I was concerned by what I found on-line, too, but thus far, no problems. I definitely DO encourage DS13 to drink plenty of water, especially on "clay days" (we're only using it every other day as of now), but we've had no constipation issues at all. I get ours from Whole Foods; it comes via a liquid solution in a brown bottle labled "Great Plains Bentonite Clay." There is also the name "Yerba Prima" on red stripes on either sides of the front label, so I'm thinking that might be the brand? Finally, just an experiential note regarding timing. The label definitely recommends taking it on an empty stomach, so we give it to DS before breakfast; however, there just aren't enough hours in the day (especially a school day) to space out the clay, abx, probiotics, supplements, etc. with a couple of hours inbetween each. Thus far, though, we've not noticed any negative impacts by serving him the clay, breakfast, abx and supplements within a relatively short period every other morning before he heads off to school. I suppose I'll research it more and see if we can't spread things out a little more at least over the summer. It might also be that we're not seeing any negative impacts from the clay potentially "washing away" some of the abx or supplements because we're only using it every other day.

I could not agree with you MORE! My son WAS missed, hence my pen-name; he was diagnosed with OCD at 6, after having battled non-stop ear infections from about 14 months of age until past 3! Our PANDAS diagnosis was hard-fought and remains controversial within our core treatment group (pediatrician, therapist -- psych just came around a few weeks ago!). No problem with any of them handing a 7-year-old Lexapro, but a strep test and/or abx? Have mercy!

I'm no techie (what's the opposite of "techie"?), but . . . . Interestingly, at the AO conference, Cunningham repeatedly thanked and credited Swedo for various sera samples, so I know that, at least in part, some of the non-PANDAS groups of materials she's acquiring from NIMH. My presumption was that the PANDAS groups she was getting from many of us.

Vickie, you ROCK!!! Without your dedication and commitment to this, we would never have gotten to where we stand as of now! I trust you implicitly, so what you say, goes, so far as I'm concerned, in this effort. Your every PEPSI REFRESH wish is my command! And I will be ESPECIALLY delighted if we can skip 90% of the "comments" next month; they seem to grind the site to a halt, and I'm sure it is discouraging to voters other than myself! Thank you, thank you, THANK YOU for all your efforts!!

We were motivated because DS has always had some "tummy trouble." Pre-PANDAS, I associated it with his general anxiety and assumed that it was just another arena for his OCD to focus upon and try to cause him trouble. Then, once we'd gone the PANDAS route and I'd tuned in here, I kept hearing things like "Healthy gut, healthy mind," etc. Then our psych actually reiterated the fact that there are serontonin receptors in the gut, and the light bulb just kept getting brighter and brighter (sometimes, my bulb runs a little dim! ). Plus, with the abx, despite some 160-170 billion units of probiotics daily and lots of bananas and apple sauce, DS was still contended with bouts of gas, bloating and diarrhea. So I figured it was worth a try, even if at a very low, slow level initially. It has been nothing short of a miracle for him digestion-wise, and, interestingly enough, he has commented that he began to feel better mentally about the time we began the clay! I honestly don't know if he's had strep in his gut all this time (we've never found it, as he's been classically asymptomatic and negative throat cultures whenever we've had them), or if its that he needed to clean out die-off, yeast, etc. Whatever reason, though, it does seem to have contributed to an improvement.

There wasn't anything too specific in that arena addressed. Obviously, because of Lynn Johnson's experience and the fact that they've identified all 3 of her kids with PANDAS, he is pro-family testing to identify sources of strep in the house. I actually asked a question about clearing carriers, of which, thanks to Dr. Trifiletti's presentation, I now believe my DS to be one. Dr. B. (along with Dr. T., who attended Dr. B. presentation and frequently weighed in on the Q&A from the audience, upon Dr. B.'s request), responded "antibiotics."