MomWithOCDSon

Thanks, Dad! This was one of the examples I fired back at our psychiatrist when he first chided me that all the evidence regarding PANDAS was "anecdotal." I almost screamed at him, "And I suppose YOU still think ulcers are caused by stress, huh?!" He seems to have come around some since, though, commenting to DH that he wished he had as much confidence in HIS methods (psych drugs) as I have in MINE (abx)! At least it is heartening to know that the PANDAS experts are getting some time and space at the International OCD Foundation conference, as well as the AutismOne conference this year!

It sounds as though you've caught this relatively early, so, if anecdotal history holds any clues, the abx should give you some results, if the abx you're using is the correct medication for you. Or it's possible that you'll need to try another abx . . . perhaps the infectious agent here needs a different combatant due to its particular strain or whatever. As for the "ants in the pants" component, I know a lot of PANDAS kids have similar behaviors, as do some kids with regular OCD and maybe TS, too. With my DS, I attribute it to needing some sort of physical outlet for his anxiety. It has calmed as he's healed, though, and we also have him on Intuniv, which is a non-stimulant ADHD med which has helped him especially with school demands. He's 13, though, so the expectations for him in school are significantly different than for a 5-year-old. Unfortunately, like I said before, I do know that there are some families here who's kids' primary behaviors have been tic-oriented, and, for whatever reason, the efficacy of abx for tic behaviors seems to be a somewhat trickier proposition. Don't know why. Sorry I'm not of more help. Hang in there, and don't surrender. Keep asking questions, poking doctors and trying solutions until you find something that helps!

Happy Birthday to your DS, then, also! Pisces are some of my favorite people!

Thanks, everyone, for the good Happy Birthday wishes. I've shared with DS, and in true teenage fashion, his response: "Uh, yeah . . . cool. Thanks, Mom."

Sorry, but I'm not sure I remember from previous posts . . . how old is your daughter? Was February the first time you saw the tics, or has your daughter experienced any similar . . . if more subtle . . . behaviors before? For us, we saw some very immediate (48 hours) improvements in OCD behaviors after starting abx, but those dramatic improvements waned and even stepped back on and off again some over the next several weeks. Overall, the "improvements" with abx, at least in our experience, can be pretty subtle and are almost more "atitudinal" and about flexibility and reduced emotional lability than they are about the behaviors themselves. In other words, he still contends with many of the OCD behaviors and thoughts he's had for years, but his ability to "fend them off" or entirely overcome them has improved substantially, as has his distress at their appearance. He's able to just "move on" rather than crumble. From what I've read on this forum, though, the tics behaviors can be harder to overcome; perhaps they take longer to see substantive improvements? My DS has never had significant tics behaviors, so you'll have to look for someone with more experience in this area to chime in here. My main advice would be, don't give up too quickly. Use Buster's chart (on another thread here) or your own journal to keep track of the changes in your daughter's behavior . . . even the subtle ones. Twice we ceased abx because we thought our DS had "plateaued" and was no longer benefitting from the abx, only to be proven wrong by this latest and longest abx regimen (going on 5 mos.), during which we've seen almost miraculous improvement overall, despite some "saw-toothed" patterns and short-term setbacks.

Is he rid of all PANDAS symptoms? I really don't know. I've seen a lot of people on the forum talk about "residual OCD" post-PANDAS, and I guess I'm thinking that's what we're seeing now. Because he's been living with some OCD behaviors . . . however mild they've been at points in time . . . since he was six, I guess I don't expect those behaviors to evaporate entirely. Even with therapy, I expect he will always have a little perfectionism, a little germaphobia, etc. My measure is, is it interfering with his ability to live his life? Does it prevent him from doing something he wants to do? From being who he wants to be? He's doing very well now and, for all practical purposes, back to living his pre-PANDAS life, so that's why I'm thinking we might try stepping him down now, to a lower abx dose. DS13's behaviors are primarily OCD; he has had some minor vocal tics from time to time (throat clearing, repeating words, etc.), but they have never been especially primary or volatile. And finally, yes, we got on abx after "Saving Sammy." Many years ago, when I first heard of PANDAS, I insisted on having DS tested, but when the throat culture came back negative, at that point in time, I didn't know there were any other options or avenues. It wasn't until "Saving Sammy" cemented the concept of a kid being entirely asymptomatic for strep, but still contending with it, that I discovered there was still a possibility and a route to go and push for more answers. An ASO titer test revealed significantly elevated titers which, though i now know is far from a definitive answer, was enough to convince his pediatrician to help us with abx.

We tried stopping altogether. His improvement was dramatic in the first 48 hours of the abx, and then it plateaued after that, right through the 3-week course. So we thought maybe they'd done all they could. Turns out we were wrong, but until I made it a point to track the more subtle improvements/changes (like attitude, ability to recover from meltdowns more quickly, etc.), his progress on abx on a daily basis was tricky to ascertain. It was only in daily tracking and a broader time scope that we were made definitively aware that the abx were continuing to help him. I guess it's sort of like the way you don't realize how tall your kid is growing because you look at him every day. But if you track him (on a door frame), or a friend or relative who hasn't seen him in a while mentions how much he's grown, then your own eyes open up a bit. The journal and some outside feedback (like his teachers and IEP caseworker at school) have helped us in that respect. This time, we won't stop altogether; we'll step it down.

Tomorrow is DS12's birthday, and now I'm going to have to get in the habit of correctly identifying him as a teenager! Honestly, if you'd asked me this past October if we would be looking toward tomorrow with anything other than trepidation, I couldn't have said that we were. But thanks to this forum and all the resources here, along with "Saving Sammy" and Beth Maloney, and our open-minded pediatrician, we can actually look forward tomorrow for fun, laughs, and congratulations to our smart, witty, kind, generous and increasingly happy young man! He's been on abx since October 13, 2009, with two, 10-day breaks off of the abx early on in the treatment, until we finally got a clue and recognized for certain that he needed to stay on them to continue to improve. He's continued on a moderate dose of Luvox, as well, mostly because he'd begun that before we found PANDAS, and we didn't want to change too many variables at once. On October 20th, we switched from CBT to ERP and have continued the exposure therapy relative to OCD behaviors like contamination fears and avoidance of activities (namely school and homework) that triggered his anxiety. December 1, the doctor added Intuniv, a non-stimulant ADHD medication, to the mix. Since then, these meds have remained stagnant and the only additions or "tweaking" has been with respect to probiotics and other supplements. The latest additions, thanks to some experience and advice offered here on the forum, are curcumin and quercitin. DS13's progress has been wonderful since starting the abx, and we are very encouraged that we have found the "magic key" to his full recovery. He's gone from being an absolute sleepless, home-bound mess to going to school full-time (including his advanced classes), participating in outside activities (like swimming, the movies, restaurant meals) and sleeping like a baby every night, waking in the morning with a great positive attitude! He is night and day from the boy last September, and we couldn't be more proud to see him enter his teenage years! That's not to say he doesn't still have his moments, particularly when it comes to homework stress and decision-making. But he continues to gain ground in terms of regaining his composure more quickly and with less outside intervention. He's taking charge of his life again. Thanks again to all of you for all the experience and advice you've provided us in this odyssey that is PANDAS. We continue to learn and try new ideas and look forward to the day when the medical community fully acknowledges and sets a treatment protocol so that all our kids can be made healthy and KEPT healthy!

We tried regular Augmentin (875 mg., 2x daily) first, and then switched to the Augmentin XR after the first couple of rounds of regular Augmentin. We've never actually tried, or felt like we needed to try, anything else. We were led to the Augmentin via "Saving Sammy," which I'd found before I found this forum or knew any other families or their experiences. It appears that we were lucky in terms of finding an effective abx for him, even if we'd been somewhat unlucky up to that point, having the PANDAS identified so late in its progression. I've read that different strains of strep in different parts of the country are resistant to various abx, so sometimes what works for one family won't work for another. But for us, the XR has been a dramatic piece of the healing puzzle, along with ERP, probiotics, vitamins and lots and lots of patience!

That's the $10,000 question! We had our DS12 on abx for a full month, and then we pulled him off, thinking that it was all good; it was only about 8 or 9 days before his pre-abx behaviors started ramping back up again. So we put him back on, and again, the behaviors receded. Once again, we pulled him off after another 30 days, and once again, the behaviors started creeping back up after about 8 or 9 days. So, this last time, we put him on and kept him on for about 3 more months now, hoping this time, he'll be able to hold even once we step down or stop. Beth Maloney told me that she and Sammy had similar experiences, so they let the behaviors be their guide as to when stepping down off abx was possible. I do think it may have to do with age and when/how quickly the strep or other infectiious component is caught and identified. We didn't even try PANDAS treatment until this past year because he'd always been asymptomatic for strep (though his titers, once we finally did test, were extremely elevated), but he was dxed with OCD at age 6 and showed signs of OCD behaviors well before that (around 3?). So, it appears that he may have gone some 6 to 9 years without having the underlying cause treated. So it will take longer intervention for his system to recover? Does that make sense?

We've been on Augmentin XR 1,000 mg. twice daily for almost 5 months now, and we're looking to step DS12 down any day now, as soon as I can get hold of the pediatrician to agree on a new dosage. It'll be a trial, though, and if his behaviors ramp back up, I'll be looking to go back up to the higher dosage for another stretch. I just hope our pediatrician will stay on the ride with us!

We've wondered if Seasonal Affective Disorder (SAD) either plays a part in, or is "inspired" by, DS12's other symptoms and behavior. When initially dxed with OCD, we thought we were seeing a "pattern" of sorts in the waxing and waning that was seasonal. Now I wonder if it is just because he was inside more hours of every day and therefore "trapped" with triggers and re-exposures to strep! Nonetheless, knowing that I get bummed out after day after day of gloomy weather, we purchased a full-spectrum "Happy Light" from Verilux and installed it in DS's room. So, in the morning, especially school mornings when -- even on sunny days -- he's rising before the sun is even really up, we turn the light on and it bathes his room in a very nice white light. Also, the instructions suggest that you give yourself 10-15 minutes with your face basically "in" the light -- 6-10 inches away -- close your eyes, and just take in the light. So, up until this year (he hasn't seemed to need it so much), we would hold the light box in front of his face as he was waking up and sing a couple of verses of "You Are My Sunshine" while he got his "sunshine treatment." Nothing quantitative to say that it actually benefitted him, but it definitely didn't hurt!

Thanks! My local OCD Foundation chapter was supposed to put us on the mailing list for this information, but I hadn't received it yet. And I had thought the conference was in the Spring, rather than summer. I hear really good things about these conferences in general, though we've never been; considering it, though, if affordable. Knowing now that there's a PANDAS track along with the OCD programs is definitely an added "carrot."

We mix up probiotics, also, and go through several cups of yogurt daily, as well. We use FloraStor, Culturelle, Sach B and an "Acidolpholus & Probiotic Complex" by Trader Joe's. Does bring up a question, though. The Trader Joe's mix contains the following: - Lactobacillus acidophilus - Lactobacillus helveticus - Bifdobacterium bifdum AND - Streptococcus thermophilus Should I be concerned about the "strepto" ingredient? I'm feeling pretty stupid that I didn't catch this before , but I'm wondering if there's anything significant here. I'm going right now to look it up, but if anyone knows anything in particular about it, I'd appreciate the feedback!

Thanks, SF Mom. First time I've ever seen documentation that ear infections can be specifically strep-related. Our DS12 had non-stop re-occurring infections from about 18 months until we finally submitted him to tympanostomy at 3.5 years. If he got a cold (virus), he'd have an ear infection (bacterial) within days! Gina -- It's possible that your son's improved attitude (and apparent improvement in emotional lability) is a result of the antibiotics, even if some of the other behaviors do not seem responsive . . . yet. Isn't it possible your son caught a virus, so while the abx isn't assisting him with what that brings, it still is having some impact on the other inflammation triggers? If the virus caused congestion and fluid to build up in the ear, then, from what I recall anyway, the fluid could harbor bacteria (strep?) that would in turn cause the ear infection itself.

Thanks, Wendy. Thus far, I've only taken in the title and glanced at the meat of the article, but I'm looking forward to reading it thoroughly at my first opportunity later today. Wouldn't it be great if some of these probiotics we're giving the kids to quell gut issues actually bring even more to the table?!?!

Hi Lisa -- When the latest exacerbation hit our DS12 last spring, school became increasingly difficult for him. Mostly, he reported stomach upset many mornings to the extent that we wound up letting him stay home from school, not realizing at that point it was 99.9% anxiety. And it just kept building on itself. Because his OCD behaviors were so cranked up when we began school this past fall, we knew that is existing 504 Plan wasn't going to cut it; so I tried to get a meeting in advance of the actual start of school to expand the accommodations in the 504. After hearing me describe the "latest and greatest" issues, the school psychologist actually suggested we transform the 504 to an IEP. However, while we were still trying to jump through all the hoops to get the IEP set up, he continued to deteriorate, and school became almost unbearable for him. Every morning, he begged us not to go, and then he would only be there for maybe an hour before he would go to the nurse's office and call home, begging us to come pick him up. He couldn't make it through a single class at that point (all of this was pre-abx). So, we did pull him out of school for about a month and home school him. It was tough, just because school work and homework in and of itself were huge triggers for him at the time. But because he's academically pretty much at the top of his class . . . once you get past all the anxiety . . . we were able to get through a normal 6-hour school day's worth of work in about 2-3 hours. The teachers would email us his assignments, and we would dole them out as he was able to move forward with them. Meanwhile, we started abx, completed the IEP process and started some intensive ERP therapy for him. The therapist worked with the school on a "re-integration" program for him, and with the IEP in place, DS12 was assigned a caseworker who helped ease him back into his "normal" school life. We started one class period at a time, sometimes taking as long as 2 weeks at each step before introducing yet another class. And we started with his easiest/best liked class first and added on from there. It took about 2.5 months, but he is back in school full time and doing brilliantly. His IEP continues to give him accommodations that are very helpful to him. For instance, he gets to arrive at school and come inside a few minutes before the regular bell so that he has time to go to his locker and get organized before the halls get crazy and crowded. He gets more time to change classes so if he's a minute or two late arriving to a class, he's not marked tardy. He gets additional time for assignments if he needs it. He can take essay-type exams orally or bring them home and do them on the computer, rather than handwriting. He's doing a research project on health/fitness and swimming at least twice weekly instead of attending the school's PE class. If, at any point, he gets too overwhelmed, he can go to his caseworker and talk things out. I think we've been very fortunate to have the school advocates we've found, and the abx treatment has changed his life dramatically, too. I do think becoming "school-phobic" is a real danger that we'll have to monitor should there be any future exacerbations, but it is good to have support from your school community, as well.

Worried Dad & Joan -- Either in keeping with "Saving Sammy" or just on his own protocol, our DS12's doctor prescribed Intuniv -- a non-stimulant ADHD med in the same vein as Straterra -- about 3 months ago. Like your kids, our DS was reporting feeling distracted and jumpy at school . . . having trouble staying in his seat during class . . . even though the anxiety that had previously plagued him has been substantively subdued by the Augmentin XR. I am happy to report that he is doing great. He remains on Augmentin XR and the Intuniv, is in school full time. He's stopped complaining about feeling perpetually antsy, he's doing well academically, completing classwork and quizzes in the alloted time, etc. I do think that the Intuniv has helped him and has worked well as an adjunct to the abx therapy.

My thanks, too! Our DS12 is a BIG handwasher still (one of the OCD habits he's having a harder time breaking, and being as we want to help him stay away from infection, we're not riding him overly hard on it, either), and so many soaps are just too harsh on his skin. We've been using Cetaphil, but even when you buy big at the Costco, it sets you back! I'm gonna try this!

And just like PANDAS, there are many available "variants"! PANDASSUX PANDASSUKS PANDASSUKZ PANDAZSUX . . . . .

Do we really want PANDAS identified as a "mental disorder"? As opposed to an auto-immune of infections disease disorder? Or is it just a part of getting the disorder under more professionals' noses, period, so listing it somewhere that mental health professionals (psychologists and psychiatrists) are more likely to come across it might be of help?

Yes, there has been some evidence (a study by Murphy, I believe) that SSRI's may over-activate PANDAS kids. So many here are wary and/or have had bad experiences. Our experience, meanwhile, has been as follows. Our DS12 was diagnosed with OCD at age 6; we didn't know about PANDAS then. At age 7, when his symptoms became more severe and were interfering with school, he was put on Lexapro. Lexapro is an SSRI which is a different formulation of the same components in Celexa. He did beautifully on the Lexapro for over 4 years . . . so well, in fact, that he demonstrated virtually no signs of OCD or any of the other PANDAS related behaviors we've come to know more recently. Now, whether he was unusual in this respect or not, I don't know. Last May, at 12, he went off the deep end with OCD behaviors and the Lexapro ceased to have any positive impact. For months before finding and pursuing PANDAS, we tried every other antidepressant and SSRI in any way approved for OCD: Zoloft, Prozac and finally Luvox. Nothing gave him any noticable leverage against the debilitating OCD as the Lexapro had years previous. At least, not until we went with antibiotics. Since the abx, he has improved dramatically and has returned to his regular life again. As of today, i would tell you that he is 90% back. And he remains on Luvox, mostly because we didn't want to change anything up when he seemed to be improving. So, is the Luvox helping him? I honestly don't know. But I think I CAN say that it isn't hurting him. And as soon as he's back to 99% and holding, we'll try weaning him off the Luvox and see what happens. Good luck to you!

Wow. Maybe a little too apropos. Sent chills down my spine.

My DS12 PANDAS loves all things blue . . . especially the sort of aquamarine color you see in a Caribbean ocean (not that he's ever seen a Caribbean ocean, but that's the tone he specifically picked out in some new linens for his room). Perhaps most interesting, though, is that he has a thing for tye-dye, and an all-blue tye-dye is his undeniable favorite. The tye-dye pattern can resemble illustrations I've seen of chakras, so that's a little synchronistic, I think. My dad is a registered music therapist and has always been "into" all things new-age with respect to color therapy, color associated with specific notes/tones, chakras, auras, etc. It's my best recollection that blue is supposed to be a "calming" color, restful, etc. Yellow, meanwhile, Michael, is an "intellectual" or "thinking" color. One of my favorites, in home decor, anyway (though I don't tend to actually wear much of it), is lavendar. This is supposed to be a "psychic, intuitive" color, so I hope it's helping my intuition while I sleep in my lavendar bedroom!

Which 19-year-old boy? Sammy Maloney? Maybe it's a combination. Maybe medical interventions helped keep him on the planet initially and gave his own immune system a chance to recover and "stabilize." Hormones certainly do appear to play a role.