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MomWithOCDSon

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  1. MomWithOCDSon

    Cautions Against SSRIs with PANDAS?

    I get that a PANDAS kid has an autoimmune disorder; I'm just trying to figure out if that is truly MY kid's problem, or if his OCD comes via some other agency. Especially when he does well for nearly five years on an SSRI when other PANDAS families report nearly only failures with such meds. Honestly, I'd like to believe it IS PANDAS, because then there could actually be a CURE, rather than just "managing" the condition for the remainder of his life! I've heard of the glutamate drug studies (one at the University of Michigan, I believe) and am encouraged by that, but we're trying every path we can. We DO have him on high-dose antibiotics right now: Augmentin XR at 2,000 mgs per day. I'm just putting it out there for a reality check against all the experience on this forum. It seems a little too coincidental that his near 5-year "remission" was because he got over the infectious agent but then was re-exposed. He attended public school, was exposed to strep repeatedly (I know because we'd get a note sent home, and he'd never develop any signs of it, but I would inevitably come down with strep throat a few days later), I can't remember a single instance of his being put on antibiotics during that time because, beyond the OCD, he's a really healthy kid. And, he was on the Lexapro that entire time. Don't get me wrong: I KNOW PANDAS is real, and I am very cheered and encouraged by all the information and experiences posted here. And I'm not ruling it out for my own son; I'd love to cure him! Just trying to separate the wheat from the chaff. From what I've experienced thus far, medical practitioners who are either dubious or downright anti-PANDAS automatically diagnose my son with OCD, and those that acknowledge and even practice in the PANDAS field immediately diagnose him as PANDAS. But our experience could point us down either road, and everybody has a dog in the fight, know what I mean?
  2. MomWithOCDSon

    Meds for ADD? for PANDAS son?

    If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.
  3. MomWithOCDSon

    Cautions Against SSRIs with PANDAS?

    Okay, so . . . . Is that to say, at least possibly, that because our son DID respond so well, for so long, to Lexapro, that he DOESN'T, in fact, have PANDAS but rather has some other genesis of OCD?! It seems most of you have repeated failings with psych drugs, while we had a very positive response initially. Our failures in that regard have been more recent. There's a part of me that was hoping, not unlike the misunderstanding regarding ulcers that prevailed for decades (that they were caused by stress, rather than by infection, as was finally determined), that ALL OCD may have its genesis in infection that can be treated via abx, thereby eliminating the need for the psych drugs. Also, I will say that while the Prozac did not seem to help and the jury is still out on the Luvox, neither of them appeared to exacerbate my son's symptoms, nor has he ever displayed signs of serotonin syndrome. So, maybe it's not PANDAS???
  4. Well, our doctors, despite living in a major metropolitan area, did not know ANYTHING about PANDAS, so I've been driving all the response via web research, "Saving Sammy" and now forums like this. In other words, I'm ignorant, and our doctors are even MORE so! So, if the ASO titer and DNase are NOT definitive PANDAs testing, what is? This "CAM" I've seen mentioned on this board several times? I'm unfamiliar.
  5. MomWithOCDSon

    Strattera Experiences?

    Do you mind my asking, what exactly is your child's diagonosis? During this latest exacerbation of OCD which began about 8 months ago, we tried both Seroquel and Abilify. Unfortunately can't recommend either, though I know that all depends upon a particular individual's response. Abilify did nothing but turn his stomach inside out. Seroquel, meanwhile, turned him into a zombie and put him to sleep. Is your child taking anything besides Straterra? I'm relatively new here, so I might've missed a previous thread on the topic. Sorry!
  6. That's what I would think, re. the behaviors. I don't know much about them, but I guess I'm just going back to the tests we've all either had or seen referred to on this forum and elsewhere: things like the ASO titer and DNase testing? If the antibodies have diminished, then the strep is under control, no? Honestly, I'm just guessing here, as I'm new to this PANDAS stuff. And I know I just saw another post where a mom said her kid's titer counts were all back in the normal range but her behaviors continued.
  7. MomWithOCDSon

    Strattera Experiences?

    I know that Sammy was still on Strattera when he began his boarding high school, but I don't know if he still takes it now. I get your concern about mixing strategies and then not knowing what's truly impacting. But, I have to say, I'm no scientist, and even if I DID try to conduct things in a "controlled" way in terms of treating my son, our doctors would still refer to it all as "anectodotal" and "untested." So, I guess I'm more bent on helping my son, with anything and everything at my disposal, rather than definitively "proving" the efficacy of one strategy over another. Sammy's was mixed; he was taking Zyprexa and Augmentin and various other meds at various other stages of his recovery. Perhaps some or all of these things assist one another? I don't know. But I do know that I can't stand by and watch my son suffer for the sake of "proofing" one strategy at a time. I'll leave that to the NIMH controlled studies and others who can withstand that kind of rigor. He's just not up to it; it would incapacitate him. So he's taking a number of things, including Augmentin XR and Intuniv. I know others may be reluctant to go this route, but I know it's the right one for us because he's made tremendous progress over the last couple of months. He went from being a home-bound, contamination-freaked, emotional meltdown mess to returning to school for 2/3 of a day, completing all his assignments, able to go to restaurants and malls and have a friend over, etc.
  8. MomWithOCDSon

    Strattera Experiences?

    Dad -- I'm a newbie, so thanks for the background on your son! I'm learning a ton from this forum and all the experiences posted here, and it also helps to realize that my family is not alone in this whole PANDAS experience, though from the way doctors in my area respond to inquiries with regard to it, you'd think I'm from another planet!! Why such a lag in medical curiosity on this topic?!?! Sorry . . . another soapbox, another day! Anyway, I'd noted the Straterra in "Saving Sammy" also and asked our psychiatrist about it. He responded that there's a fairly strong cross-correlation between OCD and ADD or ADHD in kids; however, he said that generally treating the anxiety/OCD was the first line of attack, and you didn't even mess with the ADHD until the OCD was under better control. But what I'd noticed about our son over his 6 years of OCD diagnosis (just discovered PANDAS this year), was that when the OCD was recessive, he was a great, focused student; but when the OCD kicked up, he was all over the place, having trouble sitting still in class or focusing on classwork, etc. We'd thought about ADHD but, frankly, the OCD was such a bigger issue that we just pushed everything else to the side. Until I read "Sammy." So I pushed. I think the initial reluctance to treat ADD or ADHD alongside OCD or PANDAS was because most of the medications were stimulants, and stimulants were counter-productive to the OCD. But now with non-stimulant ADHD meds like Straterra, you don't run into that problem. Our psychiatrist actually prescribed another, newer non-stimulant ADHD med called Intuniv. Our 12-year-old PANDAS son has been on 1 mg. for about 10 days, with only good results. He's more focused, has stopped complaining about being "itchy" and needing to walk around during class at school, etc. The protocol calls for us to step him up to 2 mg. now, but we're going to get his blood pressure tested first. It's only a short history with the ADHD stuff thus far, but so far, so good!
  9. mom, when you say the old behaviors returned, do you mean exactly as they were before, or it seemed worse? I think I have this fear that even if the antibiotics don't do anything 'dramatic' and then you take them off - that it may act as a dam, keeping back some antibodies, which were kind of just hanging around and causing some trouble, so this build up of antibodies is held back by the dam (antibiotics) and then when the abx is taken away, the dam is now overtaken by all the antibodies that have been held back and now rush in double and triple what it was before and this is what makes things worse? is this a bad analogy? its just my own thought. Even tho I see no real improvment on these antibiotics after about six weeks, I have this fear that if I stop, that he will be worse then ever before. is that possible?..... Faith Hi Faith -- I wish I knew! Behaviors worse than before? It's hard to say, really; everything is so MOVEABLE, if you know what I mean?! You know how OCD can be like a game of Whack-a-Mole, and he succeeds in whacking it down in one area of his life, only to have it pop up somewhere else? We're constantly dealing with that. So when a behavior recedes or "evaporates," we're elated for a short time, but then, inevitably, some other behavior that we thought was long gone, or one we've never seen before, pops up. So, let's see. The first thing we saw reduced on the antibiotics were his contamination fears. But we didn't see much of an impact anywhere else. We kept him on them for a solid 8 weeks and then, because he appeared to have "plateaued," we took him off. It took about 7 to 10 days before his behavior began to change again for the worse. But it wasn't contamination that ramped up (he remained generally unconcerned in that arena); it was his general fears and meltdowns associated with trying to avoid everything that made him fearful (namely homework and school). So, after about a 7-day break, we put him on again. Again, we saw almost immediate results, and his meltdowns and avoidance behaviors melted away within about 48 hours. But then he began to have some stomach issues, despite the probiotics we've been giving him, and, again, the improvement plateaued. So we started thinking maybe it was just all psychosymatic and he'd initially improved because he wanted to and we wanted him to, not because the abx was having any real impact. So, once again, after about a week of the abx, we took him off. But after about 10 days, his contamination concerns started creeping back, and while I wouldn't say they are actually WORSE than they were before, they are very close to being as bad if maybe only very slightly lighter than they were before. Because of his stomach issues, we thought we'd try just putting him at a half dose -- 500 mg. of Augmentin XR twice daily instead of the full, 1,000 mg. -- but we went four 4 days with no noticable improvement in the contamination alongside a noticable degeneration of his condition overall: double the daily meltdowns as before! So, beginning this morning, we're back up to the full 1,000 mg. dose, twice each day. We're doing the probiotics on a slightly different schedule, hoping they'll abate the digestive issues and/or, maybe, those digestive issues were unrelated to begin with. Who knows?! I'll let you know if we have another 48-hour Miraculous Re-Emergence of Our Boy Before OCD this time, or if it takes longer, or perhaps shorter! Probably the only way to tell precisely what impact the abx and/or withdrawal of the abx is having on the antibodies would be to constantly monitor things through blood tests, etc. But that just doesn't seem realistic, does it? I guess that's why the behaviors are our guide. I realize it's possible we MAY have done him some harm by taking him off only to put him back on, but I know other families have gone through similar trials, namely because the protocol isn't entirely established, and different kids and docs are trying different abx and dosages.
  10. MomWithOCDSon

    How long for results with antibiotics...

    Hi Michael -- I basically have the same question. From what I've been reading here, it's different responses for different people. And even different responses according to different abx. It seems as though some fail to respond altogether on one abx, but then respond positively to another, etc. Downright confusing! For Sammy, Beth Maloney says he was on abx for 4 years; I've spoken with another mom locally who's son was on a high dose of abx for 1 year, then trailing off to prophylactic dosage for another year after that. My son has been on his for about 6 weeks now. In our case, our son responded almost immediately -- 2 days -- in little ways. His contamination concerns, for instance, fell away substantively, allowing him to undertake tasks and go places he had previously been traumatized by. It was, frankly, astounding. But over time, that significant impact seemed to wane, and even reverse itself to some degree. It's hard to know if we got spoiled by that initial response and just crave more, or if we're on entirely the wrong track and need to try a different abx, or just stick with this one for a longer period. For now, I've decided to adopt Beth Maloney's system. She journaled and documented not just specifics but the generalities: which days were good and which days were bad. And even while on the strict abx regimen, Sammy had some bad days mixed in with the good. But she began to notice that the good days were slowly overtaking the bad quantitatively, that he was having more and more days in succession without meltdowns or huge OCD incidents. So I'm trying that "Big Picture" approach now to document our son's progress. He's still having some bad days, some meltdowns. But if, overall, over the course of a more extended period, we can look back and see that he's had more good days than bad, that the string of consecutive good days has gotten longer, then I think I'll feel as though the abx therapy is working.
  11. Tantrums -- Don't give up hope! Like you, we had that first big "bump" in Return To Our Real Son right after we first started the antibiotics, but the blush came off our rose, too, over time. So much so, in fact, that I began to question whether or not the antibiotics were actually doing anything at all, or if it was all psychosymatic because we all WANTED them to work so badly!! But when we took him off of them after 4 weeks, it only took about 10 days for some of the old behaviors to return in force. In effect, even though his improvement while on the abx had stopped being "exponential" as it had at first appeared it could be, the improvement had nonetheless been there, sneaking in. But it's subtlety was such that we wound up disregarding it. But, true to the idea that sometimes you don't value what you have until you've lost it, when the behaviors began their return when we took him off the abx, we realized we needed to put him back on and keep him on. I even went back to "Saving Sammy" and did some rereading; my dad had read it, too, when we were first deciding to try abx for our son, and I recalled him mentioning that Sammy's return to health was marked by jigs and jags in his recovery, fits and starts. Of course, I had been so encouraged by the overall information and outcome of the book, my initial memory had just sort of ignored the points at which Sammy fell back, lost a little ground, etc., only to come back again and move on. So, long way of saying, don't get discouraged by the backward bumps! It happened to Sammy, the Poster Child for what positive abx intervention can do in these cases, it's happened to my son, and it probably happens to most. I've decided to try what Beth Maloney did; in the journal we're keeping of our son's progress, as well as specifics when I have time to enter them, I'm just noting the overall "good" days from the "bad." When you can see that the "good" days are increasing in frequency versus the "bad," it'll help shore up your resolve, I think!
  12. Hi Faith! Long story short . . . after reading "Saving Sammy," I contacted Beth Maloney and she gave me the name of the two blood tests I wanted to have run: the ASO titers and the DNase test (I'd never even heard of the CAM or CamK stuff until I logged into this forum). At that time, we had our son in an outpatient program at a local hospital, trying to manage his anxiety and OCD because he couldn't function in his regular school. I talked with the psychiatrist at the program and insisted on the blood tests; in the end, though, she only ordered the ASO titers one, and when the results came back from that at signficantly elevated levels, it was enough "evidence" for me to take to his pediatrician and get a prescription for antibiotics. I see a lot of similarities between Sammy and my son, which is one reason I've become so emotionally invested in trying a similar treatment protocol. My son, like Sammy, was a high-functioning math whiz one week, and a total meltdown mess the next. Like Sammy, he's NEVER actually had a strep infection that we know of ("asymptomatic"), but he nonetheless had this extremely high count of strep antibodies, which would seem to indicate either he had one in his body somewhere, somehow, or, as you've suggested, had one or more in the past and the antibodies were still active. This stuff is so complicated!
  13. MomWithOCDSon

    Meds for ADD? for PANDAS son?

    Chemar -- Thanks for the heads-up; we'll definitely be watchful. I know that these various SSRI's can have different affects on different people. Thus far, no ill effects from the Luvox that we can determine. We would be thrilled to do everything the "natural" way, which is why we delayed using any drugs for as long as we could. But his OCD is VERY strong and interferes dramatically with his daily life without any pharmacological assistance whatsoever. He would essentially be room-bound, afraid of contaminants beyond the boundary of his doorway, too uncertain of each and every choice, daily panic attacks, etc. He would be completely incapacitated, in other words. We've tried a number of homeopathic and natural supplements, but they ceased being in any way effective after about the second year of his diagnosis. We've also tried other things that "zombied" him, as you say, but Luvox, at this current dosage anyway, is not one of them. And it hasn't stripped him of any of his more positive personality attributes either. The brain is truly a complex, miraculous organ, to have so many singularities and eccentricities among individuals!
  14. MomWithOCDSon

    Yeast Reaction?

    A few times on this forum, I've seen references to yeast reactions by kids. I'm assuming these reactions are related to giving yeast and other probiotics to PANDAS kids who are on hefty antibiotic regimens? So, I have a couple of questions, as we're relatively new on this PANDAS path and I've been giving my son Flor-Stor (yeast) regularly, since his pediatrician recommended it, saying that the antibiotics won't kill it off immediately like it can other probiotics like acidolpholus. 1) Do I remember correctly seeing references to "silliness" and strange dreams associated with yeast? Are there any other tell-tale symptoms? 2) If the silliness and strange dreams are not at a level that interferes dramatically with daily life or sleep, are there other concerns associated with the ingestion of yeast we should be aware of? 3) If not yeast, and acidolpholus is not a reliable probiotic because the antibiotic can kill it off too quickly, then what? What would you recommend, and can I purchase it in a brick & mortar store, or do I have to go the on-line route? Thanks for your help!
  15. MomWithOCDSon

    Too late for PANDAS dx?

    Thanks for the reply and encouragement. Yes, we've been through CBT and ERP; in fact, we're back in therapy now on a regular basis due to this most recent exacerbation/waxing of the OCD. The skills and techniques definitely help. I think that his dad and I are just flumoxed and perhaps have too high expectations regarding the antibiotics efficacy and timing. When our son was first diagnosed, CBT seemed to work wonders. Then, when his behaviors got "too big" for therapy alone, we moved on to an SSRI -- Lexapro -- and it worked relatively quickly and like a charm for nearly 5 years. But then, with this latest exacerbation, we couldn't find anything that actually worked, and our lives were turned upside down. We had to withdraw him from school, cancel vacations, etc. It's been a nightmare, frankly. Now I finally feel as though he's on his way back, but it is an agonizingly slow and uneven process. So I've not been certain the antibiotics could really work for him. But I'm very encouraged by all I read on this forum, and I am going to reach a little deeper for some more patience! Thanks!
  16. I don't believe I have clinically significant OCD myself (coworkers and family may disagree with that ), but I HAVE noticed for myself that my anxiety seems to diminish overall once I've secured antibiotics for a case of strep. When I get strep throat, I get a really bad case, and it escalates very quickly; now I can see it coming from a mile away. But I honestly never connected my fresh ease with the drugs; I just thought I felt tremendous relief at getting treatment and starting to feel better! As for my husband, I suspect his anxiety may, in fact, be a long-undiagnosed PANDAS situation, based primarily upon the things he's told me about his childhood and how his anxiety/OCD grew in leaps and bounds at a certain point in his life when his family had relocated and he and his brothers kept sharing a case a strep throat for an extended period. He was on antibiotics for a sinus infection just a few weeks ago, and I do believe it had a minor impact on his OCD as well (he just seemed less pent up about things), but it was only a 10-day course, and his OCD isn't at a level where it significantly interferes with his life, so I'm not sure we would treat it pharmacologically anyway, though he does take an SSRI for his generalized anxiety disorder. Would antibiotics help that?! At his age?! Yes, the more adults who chime in on this, the better! Maybe it's not just PANDAS; maybe it's ANDAS!
  17. I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms? My boy is not showing active strep infection, so I'm wondering if its time for me to give up on antibiotics, its been about six weeks (first a month of augmentin 1000 and now azith 250). Thanks Faith Faith -- Our son NEVER had an active strep infection that we could determine; we just finally got his titers tested when all the throat cultures came back negative and found that his titers were way out of whack, indicating a strep infection lurking but asymptomatic. We tried Augmentin 875, twice daily, for the first month. He showed immediate improvement within a couple of days, but then it plateaued. So after that month, we decided to take him off. It took about 10 days, but he started regressing again, with the behaviors coming back. So we put him on again -- 1,000 mg Augmentin XR; he was on that for about 10 days, without any noticable impact other than, despite probiotics, his stomach was really giving him trouble. So, since we weren't seeing any real improvement like the first time, and it seemed to be hurting rather than helping, we took him off again. Four days later, we put him back on because his behaviors became more severe than ever before. I have had an email correspondence with Beth Maloney, Sammy's mom and author of "Saving Sammy" about this very thing; when do you ride it out? when do you know if it's having a positive impact? when do you know if you should decrease or stop? she has said that she would let the behaviors be the guide -- that they will tell us when he's ready for a reduction. But like all of you, I'm concerned it will be difficult to keep him on antibiotics for an extended period, so strong is the opposition to or ignorance of PANDAS. Our pediatrician is riding with us right now under her "do no harm" Hypocratic oath, but if we continue to renew prescriptions, that may not continue to be the case.
  18. MomWithOCDSon

    Too late for PANDAS dx?

    LaurensMom -- I don't think you're too late; the only question families like yours and mine have to answer is, if it is PANDAS, will the standard treatments work? Will they take longer? Shorter? Will they have staying power? My son is 12 and was diagnosed with OCD when he was 6. I'd mentioned PANDAS to his doctors early on in his diagnosis, but I basically got waved off; it was even less recognized and/or respected then than it is now. But after I read "Saving Sammy" by Beth Maloney, I decided to try again. We got an ASO strep titers test at our local hospital. The "normal" level varies according to each lab's parameters, but "normal" generally tops out around 200 or so, from what I've seen. My son's strep titer count was 438, twice the norm, though he's never been symptomatic for any kind of strep infection! So, armed with that information and copies of "Saving Sammy," I went back to our doctors and begged for some medical intervention. Our pediatrician asked if I had any idea what antibiotic protocol to implement, and I pulled out a matrix of sorts that I'd fashioned from Sammy's history. We started on 875 mg. of Augmentin, and we saw positive results in two days, which is to say, it wasn't too late for a PANDAS diagnosis for us! But what I'm not clear on is whether or not this treatment will work long-term, or if going 6 years with the elevated strep antibodies and/or the OCD hasn't perhaps physically altered the structure of his brain to the extent that we can't expect the miraculous response Sammy seems to have had. I'm encouraged by this forum because it seems there are a lot of people who are ahead of us in this journey. Hoping they can help shed light on which step to take next!
  19. My son, too, had a very quick, positive response to antibiotics, but we did experience a plateau. I'm not sure if our expectations were set too high, or if we were just too hopeful after months of dealing with a really nasty wave of OCD behaviors, but it was hard to see the progress slow in about the fourth or fifth week of treatment. Has anyone else experienced this? We actually became convinced that, whatever good the Augmentin was going to do, it had done it. So after 2 months, we took him off. It took about 10 days, but we started to see the behaviors ramping up again, so we put him back on. I have no idea how long we need to do this until we can safely stop, without him backsliding again. I know in "Saving Sammy," Sammy was ultimately on antibiotics for 4 years, and I've talked with another mom who's son was on them for a year before trending off. Do any of you have long-term experience with treating PANDAS with antibiotics? How long?
  20. This is my first time on the forum, and I'm thrilled by all the discussion . . . several heads are better than one! My son was diagnosed with OCD more than 6 years ago; through some web research, I'd come across PANDAS and asked both the doctor about it. He dismissed it quickly, saying that the research (at least at that time) was not conclusive; when we added a psychiatrist to the mix a couple of years later, he, too, dismissed it. Said he'd actually had a conversation with Swedlow (the NIMH doctor who'd led the pre-eminent PANDAS study) and she'd basically said that strep tests should not be standard protocol for children presenting with OCD. So we went 6 years treating the OCD the standard way: therapy and SSRI's. But at 12, the behaviors went off the charts, and he didn't respond to anything. I found Beth Maloney's book "Saving Sammy" and decided, again, to press the PANDAS issue with our doctors. They finally relented, I think more to shut me up than because they believe it to be real. So, we've been off and on antibiotics for the last several months; every time we go on, we get positive results. Every time we come off, the behaviors start up again, so we go back on. Before we started the first course of antibiotics, we had his ASO strep titers tested, and the count was 438, nearly double the normal range. So, while my son is not an adult, he's not exhibiting OCD for the first time, and he's still responding to antibiotics. My husband also suffers from anxiety and OCD, and he had multiple strep infections as a kid. We've talked about having his titers tested to see if they are elevated, but haven't taken that step yet as both his anxiety and OCD are more manageable on a daily basis than are my son's. I would be REALLY interested to hear about adults who a) get titer tests and find they have elevated levels despite no recent strep infection, and those who, even as adults, start antibiotic treatment and receive some relief. That would blow much of the existing PANDAS criteria away, especially with respect to its treatment.
  21. MomWithOCDSon

    Meds for ADD? for PANDAS son?

    Pudgeo -- My 12-year-old has had OCD since he was 6; we've only discovered PANDAS and we are trying antibiotic therapy now -- Augmentin -- in keeping with the "Saving Sammy" regimen. We're seeing some results, so we're somewhat hopeful. He's also always had signs of ADHD, too, though the OCD was so front and center that no one ever got far enough to address the ADHD. Also, it would seem that when the OCD/anxiety was under control or "in remission," the ADHD symptoms like distractability, forgetfulness, hyperactivity, etc. would also recede. We had several years of success with Lexapro for the OCD which, like I said, also seemed to address the ADHD. Now we're trying the Augmentin and Luvox for the OCD, and the psychiatrist just prescribed Intuniv for the ADHD. He's making progress in many ways, but still struggling in others. Just keep fighting the good fight!
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