MomWithOCDSon

Unfortunately, the presentations were VERY rushed, as in Swedo and Cunningham actually shared a single session of one hour and 15 minutes, and even with that, they did not have time for a Q&A period, and they both rushed out of the room to catch flights immediately following the presentation. A lot of it was "PANDAS 101," basic background, history, theories currently under study, etc. I was told that, because AO was hosting our little corner of the world, some emphasis was to be put on the "basics" rather than some of the more advanced info some of us would like to see because there would be autism folks in the sessions who were new to the whole concept. Swedo did not get into long-term prognosis or about how aging or even puberty play into PANDAS, except to admit, on the heels of another person's question, that some may grow out of it, "we just don't know." Here're the key "new" points I took from Swedo's talk: -- She believes plasma exchange is the best way to address PANDAS and reach cure/remission; however, she knows that there is a perception problem and a cost problem with PEX and that, therefore, many families will not consider it an option. So she indicated that her next recommendation would be IVIG. This marries well with what Dr. K. told me earlier this month in terms of a paper he and Swedo are working on, and a presentation to be made in July in Washington, D.C. -- She acknowledged that once triggered by strep, subsequent exacerbations could be triggered by viruses and/or other infections that drive immune response -- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%). Sorry, I would've gotten all of them if I could've, but the presentation moved at a brisk pace, and so did her Powerpoint slide show! -- She also talked briefly about "Symptom Clusters" in PANDAS. THe on I managed to get down before the slide changed was ADHD with emotional lability and cognitive changes. -- She noted a genetic susceptability component to strep, OCD and tic disorders -- There is a parallel trial of azith versus penicillin currently underway -- Two particular sections of the basal ganglia appear to be impacted in PANDAS: the caudate and putamen. An MRI displayed that the caudate in a PANDAS child was approximately 20% larger than in the normal child -- PEX, she says, reduces antibodies by 90%, hence why it is her first choice for long-term healing Sorry, not much else to report!

I also forgot to mention . . . I found Dr. Cunningham's talk especially interesting, and her Powerpoint presentation had some great slides in it. It's my concern, however, that even on a CD video shot from the back of the room, those slides will not be clear enough. I've emailed her to ask if there's a possibility she would share her Powerpoint. As soon as I hear back, I'll post again!

Okay, I'll try to respond to all: - I tried to get the word out about voting; I wore my PEPSI REFRESH tag all day, both days, and passed out identical cards to folks I talked to throughout the conference. I also handed out badges to other people who expressed interest or who identified themselves as forum members and wanted one. - I have notes from the sessions, but like any note-taker, I was focused on the things that really resonated with me, and not necessarily what might be of importance to all. There were a few new interesting "tidbits" that I picked up there that I haven't heard prior, so I'll try to highlight those on another post. - There are DVD-Roms and CDs available for the conference, but they are not going to make any available for download this year. Video DVDs of the entire conference are $995, and computer DVD-Roms are $575. The nice thing, though, is that you will be able to order just the conference sessions you are truly interested in for $20 each. Dr. Cunningham, Laura Matheos, Dr. Trifiletti and Beth Maloney CDs will all be available at that price; however, these are the only three PANDAS presenters who apparently gave AO permission to tape their presentations, so the others (namely Swedo and Lynn Johnson/Dr. Bouboulis) do not appear to be available, at least not via AO. Today's PANDAS session was limited to Beth Maloney, but like the Lynn Johnson/Dr. B. session yesterday, the highlight for me was the Q&A which followed. Like a living, breathing forum thread! Like I said, I'll try to post some of what I caught as "new" and exciting on another thread, but if you have any specific questions, feel free to post or PM me!

Thanks! I am definitely remedial in this area!

Don't let The Google scare you too much, like it did me! All this talk of "blockage" and constipation! That's what held me back on trying it for a long time, and that's why we've been very cautious and "low dose" about it, too. I'm sure every person is different, and their individual gut issues are probably equally singular. But if our experience is any indication, it's definitely worth considering. Good luck!

I don't know about download, but they are selling DVD sets of the entire conference, which I think are pretty pricey. When I go back tomorrow, I'll ask 1) what the pricing is, 2) if they'll be available for download and 3) if there'll be an opportunity, perhaps, to purchase only the "PANDAS track" as distinct from the rest of the conference. It is a massive undertaking, so I'm betting the full conference DVD's are expensive, but if there's any "sectioning" being offered, that should make it all more affordable. I'll let you know tomorrow.

I just got back home from the Autism One conference a little while ago. I attended all the PANDAS track sessions today, and despite some unscheduled blips in presentors (Dr. Latimer had a family tragedy and could not attend or present), the presentations were very well done and, even to a 6-month-old "ACN hack" like myself, there was new information and some pre-existing information more artfully and clearly presented, as well. Laura Matheos did an excellent job, presenting solo due to Dr. Latimer's absence. And the Q&A following Lynn Johnson and Dr. B.'s presentation was especially informative because we attendees really got a chance to get involved and ask some questions; unfortunately, many of the other presentations ran right up to the allowed minute, so Q&A tended to be either very brief (one or two questions) or entirely non-existent! Dr. Trifiletti packed a lot of information into his presentation, and Dr. Cunningham provided some insights into her research which were novel to me as of yet. I wish the sessions could've been longer, and especially that Swedo and Cunningham could have each had their own hour, rather than sharing one, because the time just flew . . . almost as fast as the technical information they were trying to share! All in all, it was great to hear what everyone had to say and to share with some other families, too.

Our DS had nearly identical tummy troubles, dut. And yes, I think they are PANDAS and may well be strep in the gut itself. We've never tested to see if he's got it hiding there, but I know the same symptoms (nausea, diarrhea, gas, bloating, pain) are associated with gut strep (though so are about 2 dozen other conditions! ). We have moved to fairly high-dose probiotics in conjunction with the abx (about 165-170 billion units per day), but even that didn't set aside all the issues. For about three months, we had DS eating heavily of the BRAT diet (bananas, rice, applesauce and toast), but he was growing very tired of bananas, it still wasn't setting aside all the gut issues, and its not a diet that's reasonable to continue for an extended period of time, either. So, we finally decided to try one of SFMom's favorite supplements: bentonite clay. We are very cautious about it because we do not have the same advantage SFMom has in having a doctor directing and monitoring its use. But the label says "1 tablespoon, once a day, on an empty stomach," so we have been giving DS one tablespoon, once EVERY OTHER day, on an empty stomach. And it has made a TREMENDOUS difference, I can't even begin to tell you! No more gas, no more pains, no more diarrhea, no constipation, no nausea, no complaining! His gut overall seems much happier. Coincidentally, his overall health seems to have taken another "bump" toward the positive in recent weeks, too, and DS has commented that he began to feel better about the same time he began taking the clay. Interesting, no?

Mamakarata -- Your post made me wince and laugh at the same time! Oh boy, can I relate! Our DS13 diagnosed with OCD over 7 years ago! I asked about PANDAS then and almost got laughed out of the pediatrician's, therapist's and psych's offices! It truly is a lonely feeling. But now we have this forum, so even if we're alone in our immediate communities, we're not alone altogether. And we have directions and opportunities presented us for finding new and more qualified medical professionals, thanks to this forum and its members, so if your docs are determinedly set in their ignorance, then you can (and probably should) move on. But . . . if you overall LIKE some of these folks and want to keep them around, you can maybe just add to the array of professionals in your corner and continue to feed info to the existing docs. It will certainly take some time, but you may find that you're able to educate and win over one or two of them. Our psych finally jumped on the bandwagon a few weeks ago, after resisting me for a long time! But thanks to this forum, I was able to bury him in research and information that he just couldn't ignore anymore . . . plus, he actually read it, which our pediatrician has yet to do. Hang in there! You have a virtual community that understands and supports; over time, you may be able to build a local community that will serve the same needs!

Interesting. I know PANDAS comes with food issues for many kids, but we have only nominal signs of it with DS13, and those are mostly "decision-making" issues if I ask him what he would like, rather than just making it and putting it on the table. I will say, though, he remains on a low dose of SSRI (Luvox), and I also know anecdotally that he went from being a petite string-bean kid at 7, when he first started taking SSRIs, to a much bigger kid (both height and weight . . . he really filled out -- not "fat" but no longer "lean," either) within about 18 months. The psych said there's no correlation between the SSRI and his weight, but I do not believe that. Then, when we saw Dr. K. a few weeks ago, he commented on DS's weight and said it is typical of what he sees with kids taking SSRIs. Just another reason we will try to wean him off, I think, as soon as we have the PANDAS in decent control. But it does make you wonder if a low-dose SSRI might not be a positive thing for kids exhibiting both anxiety and eating issues; maybe it would decrease the anxieties about what's okay to eat, when to eat, how much to eat, etc.? Not advocating . . . . just thinking out loud . . . .

While we're not up at SFMom's dosage, we, too, have deliberately upped DS's probiotics unit count over the last couple of months, and it seems to be very beneficial overall, especially with respect to soldiering through the high-dose antibiotics. We give probiotics four times each day: morning, lunch or after school, evening and bedtime. Each dosage is a total of about 65 billion units, a mix of bifo, lacto and sach b. My guess is the Pearls are easy to swallow for kids, and one or two each day might be sufficient for a "normal," healthy person who's not taking antibiotics. But I doubt one or two each day is going to be capable of sufficiently resupplying your son's gut flora.

Our DS is older (13), so when we went off abx (we tried a couple of times since January), it was usually about a week -- 7 or 8 days -- before his negative behaviors were back in a noticable way. Now I will say that HE felt them creeping back earlier than we could see them, and he articulated that, but we insisted on "giving it just a couple more days" to make sure that he wasn't just having a bad moment or two. Your 2-year-old isn't as well-equipped vocally, though, to tell you when and how he's feeling, I'm guessing. We've always used Augmentin, which has a much shorter half-life than azith; I thought azith's half-life was something like 68 hours? Just an additional note, though; we even saw regression with our DS when we merely CUT BACK on his abx dose, without actually ceasing them! Because it wasn't enough? Because the half-life is too short? We don't know. It seems to be, bottom line: when these kids need abx, they need abx.

Colleen -- You say he is currently taking Zithromax, but you think he should be on prophylactic Augmentin? I'm a little confused. If the Zith is working against the strep infection, why not keep him on a prophylactic dose of that? My understanding is that Zith and Augmentin work via two entirely different mechanisms, so switching to another when one is working may not get you the results you want?

Thanks for sharing this! I just downloaded the file and will be adding it to my "arsenal."

Wow, a burping tic! And I keep thinking I've heard it all! If it isn't, by chance, a tic, it might be some of the other supplements. Fish Oil/Omega 3 makes makes our entire family belch like a bunch of hillbilly's after a big Sunday dinner!

I do think the "deep pressure" is a sensory thing. When very small, our DS would beg us to sit on him, or he would bury himself between the couch cushions and then want us to lay down on top of him. To this day, when he gets overwhelmed, what he wants most of all is a crushing hug. I read this book a long while back called "The Challenging Child: Understanding, Raising and Enjoying the Five 'Difficult' Types of Children" by Dr. Stanley Greenspan. One of the five "types" of children he spent a chapter on was the "sensitive child," which I've always associated with DS. He spends a good bit of time talking about how they crave pressure and even "impact." He said that getting these types of children into sports like soccer would feed some of that need for impact . . . like you said Stephanie . . . kicking things, etc. I don't know about your kids, but here's another thing I've just remembered. From the time our DS could walk, he was jumping . . . hard and high! Off of anything he could drawl up on: the stairs, the coffee table, the dining room chair, his bed, etc. He loved the "BAM!" and the shock through his legs when he landed! Nowadays, for a similar feeling, he bounces very hard on my yoga ball!

What new paper??? I don't have all the specifics, but he told me that he is working with Swedo on this paper (I guess they met last month and will be meeting again before the presentation in July). And he indicated that the paper will state that IVIG is the indicated treatment protocol. Sorry I don't know more!

Thank you! Please do! That would be awesome! Feel free to PM me if you would prefer. Much appreciated!

Yes! - tooth problems (not sure what you meant, but my DS's mouth is "immature," meaning nothing fell out when it was supposed to, nothing comes in when it's supposed to, a couple of teeth have been coming in in weird places, rather than in the correct line, etc.) - runs very very hot (and he hates it because he has contamination OCD and sweat is not his friend!) - pronunciation problems ("sowthener" instead of "southener" -- they're studying the Civil War in history -- for instance) - shouts out random words or phrases, completely nonsensical, nosequiters ("Chicken and cheese!") - paces when he talks (it's like he's kinetic . . . he has to do one in order to do the other) - gets suddenly sleepy/tired and will nod off when faced with something he's anxious about I'm sure there are many others, which other posts here will undoubtably call to mind. But we've been living with this for so long, sometimes I forget what's "weird" and what's "normal."

The XR might be more advantageous; at this point, it is strictly anecdotal, but several of us have had better results with the time release version. Plus, maybe because it is time release, or maybe because the clavulanic acid component in the XR is lower than it is in the regular Augmentin, the XR seems to be a bit easier on my DS's gut. The thing about the XR is that, so far as I've been able to discern, it only comes in 1,000 mg. capsules, and they're very large. I'm not sure what your son's age and/or weight are, but if he has trouble swallowing pills, the XR might not be for him; you can, however, break the XR in half, just so long as you give both halves to him at once. Also worth noting, the "adult" dose of XR for infections such as sinus infections, etc. is actually 2,000 mg. of XR, twice daily, so at 1,000 mg., twice daily, despite looking large to the naked eye in terms of numbers/milligrams, this dose isn't all that high. My DS is 130 pounds, but I do know of a couple of boys under 100 pounds who've been given the same dose.

We saw Dr. K. a few weeks ago, and he is one of the providers included within our BCBS of Illinois PPO. So, the consultation was covered. Dr. K. has said, however, that notwithstanding a documented immune deficiency, BCBS will not cover IVIG for PANDAS. Our testing came back indicating no deficiencies . . . just high titers . . . so I guess we'll be on our own if we have to go the IVIG route. Even without an official listing in the DXR, will Dr. K. and Swedo's presentation of their new PANDAS paper, which I understand will set IVIG as a primary treatment protocol, in July in Washington, D.C. put IVIG on the "map" with respect to the remaining insurance companies that don't yet recognize it? If not, I wouldn't even know where to begin to get some forward momentum on that! We don't have a Jenny McCarthy-like celebrity out there pitching or lobbying on The Hill for us in this regard! Aarrgghh!

From what I understand, Zithromax (azithromycin) and Augmentin (amoxy-clav) are entirely different kinds of antiobiotics, with different methods of functioning. So one may work better for some people, while the other may work better for others; I also hear that there are different strains of bacteria in different parts of the country that tend to be more resistant to one or the other. We've used only Augmentin, and, more particularly, Augmentin XR, which is a time-released formulation of Augmentin. Since azith is known to have a very long half-life (I think, something like 68 hours?), it may be that these two drugs' abilities to stay active in the system for longer periods of time is beneficial to our kids. There's also some discussion you can find in the literature about clavulanic acid, part of the Augmentin mix, not only enhancing amoxicillin's effectiveness, but also having some antidepressant characteristics all on its own. Meanwhile, I read somewhere that azith was thought to be more effective in terms of getting to intracellular strep? Maybe that's part of the half-life issue, though.

I'm presuming we'll all (or most, anyway) be at the first PANDAS track presentation? Maybe we can meet there and gather afterward, if anyone's interested? If we can get an actual "body count," and folks are interested in a cocktail or dinner gathering in a nearby venue, I can probably put something together. Holler!

Many of us had chatted here a few months ago about how we would find one another at the Autism One conference at the end of this week. We'd pondered various colored ribbons, etc. . . . . . Well, thanks to Vickie and the high-quality "Refresh the Research - Vote Project P.A.N.D.A.S." graphic she sent me, I will have 2 x 3 badges available for everyone who'd like to sport one at the conference. Now we can show our PANDAS pride and determination, find one another in a crowd, and hopefully get the word out for some last-minute votes, all at the same time! So, if you'd like one, just ask! At least initially on Friday, I'll likely be one of few sporting this snazzy badge at the conference! Please introduce yourself and join the club! Looking forward to meeting all of you can can come!

I will third that motion! Irrespective of the growing list of PANDAS resources in recent years, were it not for all of you here, there'd be a very long list of things about which I would remain ignorant today! Not to mention the value in sharing, laughing, tearing up, and howling in frustration alongside a group of wonderful people who know, almost on the sub-atomic level, what you're going through!! Thanks everybody! Don't say it often enough, so thanks to you, becjonz, for presenting a fresh opportunity!