MomWithOCDSon

My DS12 has always been more of a loner, and as he's gotten older, he's just been very particular about friendships. Yes, he has some "odd," or maybe more accurately described now that he's in junior high, "uncool" behaviors that can make him a pariah with some of the more mainstream kids who form the various cliques at school. What he's been able to do, however, is pick out just a couple of boys his age who either share some of his eccentricities or who are just very naturally easy-going and tolerant of them. One friend he's had since 2nd grade, for instance, is a very easy-going, "normal" kid who treasures DS12's acumen at certain things -- video games, computers, swimming -- and so, on a one-on-one basis, just waves aside some of the odder parts of DS's personality or behaviors. We do, however, outside his friend's hearing, coach him from time to time on how it isn't appropriate to constantly ask your friend if he washed his hands after going to the bathroom or petting the dog, and how it isn't fair to talk his ear off or insist that he watch you "battle a boss" on your computer game instead of letting the friend have some fun of his own with a turn at the game controls! It's almost like, even with a 12-year-old, sometimes you're dealing with the socialization issues of a 4 or 5-year-old; there's just a slower maturation in some ways, I guess because so much of his brain and life experience has been consumed by other concerns. This year especially, though, he's found another boy in his class who is very similar to him; so while this boy will express concern over some of the behaviors he doesn't have himself, he's more tolerant of them and stands by DS12 while he struggles through a compulsion or whatever. Kids can be pretty resilient overall, but I think there's a difference in genders, too. From what I've seen, though I don't have a daughter, girls are maybe a bit more susceptible to feeling the pangs of "not belonging."

Thanks for the recommendation! Hadn't seen this before, but will definitely pick it up now!

Never heard of it. What is it?

Several months ago, when we were first going down this PANDAS route, we had to pull our DS12 out of his private music lessons (viola), his exacerbation and behaviors were so bad. His strings teacher is a registered music therapist, so she is more atuned than many when it comes to a kid's mental and emotional make-up. Anyway, I guess shortly after we'd canceled his lessons, she was relating his story, anonymously, to another parent who's son also studies with her. This parent -- I'll call her Mary -- gasped when she heard about DS12's symptoms and behavior and replied that her older son had gone through something similar about one year ago, it had been diagnosed as PANDAS, and he'd been 100% cured by antibiotics. The teacher asked if she could pass Mary's contact information on to me so that I might touch base with her. So, a few days later, I called Mary and we talked for nearly an hour. Sure enough, her 12-year-old son had gotten sick and she took him to the pediatrician. He was tested for strep and it came back positive, so he was given a course of penicillin. A few weeks later, after the prescription was completed and the strep supposedly gone, she took her son back to the ped because he was "acting weird." His behaviors were almost entirely OCD-related. The pediatrician initially said, "Well, he's been sick. All kids act weird when they're sick." But then Mary described some of the really odd behaviors that had cropped up and the ped scratched his head. They both did some research and came across PANDAS. Then the pediatrician actually called Swedlo and talked to her about it. Long story short, this boy was given Penicillin, first in high doses and then in increasingly lower doses, over a period of about one year. He was never given any psychiatric meds, though they did enroll him in CBT for the year, as well. He has been off all medications -- including antibiotics -- and enrolled in his regular school for the last 12+ months. No PANDAS at all. Sounds like another case of "cured" to me!

Doug -- I live in the area so, though I'm guessing Dr. K.'s office has you pretty well hooked in with respect to whatever you might need, drop me a PM if you need anything; I'm on line pretty much all day for work. The national press pretty much blew the whole earthquake thing out of proportion . . . slow news day? I live only about 20 miles southeast of the epicenter, and we didn't feel a thing. Even at the epicenter, I guess it was more of a "tremor" than a "quake." Pictures fell of walls and vases of mantles, but that was about it. The real story here, as Doug mentioned, is the weather! We've had about 18 inches of snow in the last 24 hours, and it is beginning to flurry again! Aarrgghh!! Best of luck with the IVIG, Doug! Let us know how it goes!

My son has an IEP predicated upon an OCD diagnosis, which is his primary exacerbation symptom set. I would think that an IEP on any terms available to you, even if it is not PANDAS, would be helpful.

He "boards four days a week," so he's attending a school at some distance from your home? It does sound as though his day is demanding; I know that as my DS12 returned to school after we'd taken him out for about a month, the day seemed extremely long and hard for him, at least initially. He needed home to chill and regroup so that he could tackle the next day. Does your son have a 504 Plan or an IEP available to him? If so, then maybe, even if he's away at school, you could arrange for him to slow down a little bit. With my son's IEP, we sent him back to school, essentially one class at a time, over a series of weeks. It sounds as though your son is past that point, but maybe under similar terms, he could have a "break period," once each day or something, at least for a while? And as Vickie asked, is he still on abx or other meds? If his titers are climbing, he may have been re-exposed at school or elsewhere out in the world.

For probiotics, we alternate Culturelle, FloraStor and a Super-Acidolpholus/Probiotic blend we buy at Trader Joe's; the Culturelle and FloraStor, in particular, can be pricey (FloraStor is about $1.00/dose, and Culturelle is about $0.50/dose, in our area), so mixing it up helps it last longer. He also eats at least two cups of yogurt daily. For supplements, we're giving Vitamin D3, a B-complex, a green foods supplement (Trade Joe's "Very Green"), and NAC.

Yes, our son responded that way, especially on regular Augmentin at high doses as compared to the XR version. We answered back with increased probiotics (at least three times each day), and a cup of yogurt and a half-banana every morning;he also eats applesauce and yogurt with his lunch. The banana and applesauce are in keeping with the "BRAT diet," bananas-rice-applesauce-toast that is helpful with gastro-intestinal upset, include diarrhea. Since then, all's well!

I can second Vickie's perspective. Follow your gut. We haven't done IVIG either, but on high-dose abx, we have definitely seen the "saw-toothed" recovery said to be emblematic of PANDAS. I'm learning more and more, though the experiences posted here as well as my own, that we really need to stoke our patience! We're all so hopeful, and so buoyed by any sign of healing, that we tend to want/expect it to continue on, light-speed. Unfortunately, for most of our kids, it just doesn't work that way.

Or white! Pure light, light, light!

We've lived with this for so long, I can't remember when it wasn't a part of our lives . . . guilt about "was that cheating?" "Don't help me, that's cheating!" We call it "OCD Guilt." There is an ironic upside to this: teachers that know our son know that he is virtually incapable of actually cheating, so if/when he has trouble completing a quiz in the classroom, they'll let him bring it home to complete it, confident that he's not going to help himself to his book, the internet or his parents to help him answer the questions. For your daughter, in addition to exploring PANDAS treatment, I would suggest some cognitive behavior therapy (CBT) that will help her think through these concerns, recognize the more readily for the OCD behaviors that they are, and be less stressed by them. It has helped our son over the years.

He was on the penicllin for almost 2 years off for 1 yr and went back on 3 mths ago with PANDAS diagnosis/ they are trying to get the titers down. It is 250 twice a day, asked him Monday to up it, he said no can do! Geesh he has been on the abilify for 3 years- I'll try and search the threads and see if I find anything on this med Our DS12 also presents with OCD, and he's also taken a number of SSRI's since he was first diagnosed (with OCD before PANDAS) at 6. Lexapro seemed to help the OCD behaviors tremendously with no ill side effects. That being said, we tried Abilify for all of 3 days this past spring, when this latest exacerbation sent him ballistic, and it made him NUTS! We will never, ever try that stuff again! The psychiatrist said he had an "akathesiatic" (?spelling?) reaction to it, meaning it activated him, rather than improving the effectiveness of the SSRI (currently Luvox). Nothing "catatonic," though. If your son's been taking it that long without any noticable ill effects, though, it doesn't seem likely he was reacting as our son did.

It seems we all keep running into these issues . . . this PANDAS thing is still so new to many in the medical community, and even to the "experts," their views of what constitutes PANDAS and what doesn't, which treatments are effective and which aren't, and even dosages for treatments (abx and IVIG) are inconsistent and lack a cohesive protocol. It confuses parents, it confuses the medical community overall, and it makes getting effective treatment that much more difficult. That said, I'm not blaming anyone because we are ALL trying to do our best with what we're given and what we know. It's just too early in the evolution of the treatment protocol to have that cohesive answer yet. So I keep returning to a certain theme here: we know our children best. When something doesn't look right, doesn't feel right, doesn't sound right, doesn't smell right, doesn't seem right . . . it probably isn't right. We may not have the medical answers, despite all the research and exploration, but we know when something isn't working for our children. My dad has had a number of tremendous medical challenges over the years: diagnosed with terminal cancer at 22, beat it, much to the surprise of docs at NIH who continue to study him because he is the ONLY living survivor of his particular cancer from his generation; subsequently has lost most of his mobilitity and strength because the massive amounts of radiation he underwent in the 1950s and 60s gave him bones as brittle as a thin, dried cracker. He sees doctors of almost every ilk, several times a week. And one of his mantras is: "You know why they call it PRACTICING medicine, don't you?! 'Cause they're practicing on US!" I carry that around with me, and as a result I am now very proactive, loud (okay, maybe even obnoxious ) when it comes to my healthcare and my child's healthcare. I truly believe it is a little bit of a cop-out, maybe even dangerous, to accept one person's answer for anything, even if that person is identified as an "expert." There are way too many variables involved, and too much unknown. What if genetics play a part? What if the environment plays a part? What if EVERYTHING is part of the mix? At this stage of the game, how can anyone have the 100% correct answers 100% of the time? I'm no scientist and a lot of the more clinical stuff discussed here is way over my head. But, again, one thing I DO know is my child. So I'm following the lead of some others here on the board, as well as my own instincts, and I'm letting his behaviors be my guide. If we try a treatment and he improves, then that treatment is right for him. If he backslides dramatically, then we will go back to the drawing board and try something else. I will try to be patient. And I will try over and over again until we find what works most often and for the longest duration. And if that means I turn to a local, unknown doctor, or an "expert" or whomever, then I will try every resource I can find. I think all these docs . . . known and unknown . . . are doing the best they know how. They just don't know everything. And they don't know our kids like we do. So, it's up to us to keep fighting.

This sounds an awful lot like that "Exorcist" syndrome that Dr. T. posted about here yesterday! Did you see the thread? So sorry you're going through this! I'm not familiar with this sort of aggressive rage as my son's rages are more self-directed so he tends to just sort of "go fetal" and cry for an extended period. That said, I AM familiar with the "I'm bored!" epithet, and that's almost always a sign for me that the PANDAS has gotten more active. He has trouble focusing on activities that would normally engage him; in his case, it is OCD obsessions and compulsions that distract him from the focus.

Thanks, Faith. I hadn't seen this before; it really will be helpful/useful. Wonder if we could get it pinned? Poster name: MomWithOCDSon (Nancy) Location: Suburban Chicago Childs year of birth/present age/gender: 1997/12/male Brief history of symptoms/when they started: Diagnosed with OCD at 6; first full-on, largely uncontrollable exacerbation at 7; latest fierce exacerbation at 12 Any previous diagnosis, i.e. autism, asbergers, pdd: OCD; recently identified as "high functioning autistic spectrum" PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.): OCD, minor verbal tics, general anxiety Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, immunology results, etc.: asymptomatic for strep, ASO titers = 483 Camk number (if done): not yet Antibiotic use history: Augmentin 875 mg. 2x daily for 2 trials of 3 weeks each; within 8-9 days of being off the abx, behaviors returned; most recently on Augmentin XR 1,000 mg. 2x daily for 3+ months and counting Doctor and what protocol they suggested: local pediatrician who has agreed to review material I've gathered for her, "Saving Sammy," etc. and agreed to "Saving Sammy" dosage and protocol, at least for now (uncertain as to whether or not she's consulted with some of the PANDAS specialists with regard to protocol, though I've given her their contact info) Other doctors that were helpful and why: psychiatrist - skeptical but helped order initial titer blood tests and will continue to assist when I press Steroid trials and detailed experience: None Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. Additional therapies sought: Used CBT off and on through September 2009; switched to intensive ERP October 2009 Supplements used: NAC, B-complex, probiotics (FloraStor, super-acidolpholus), green foods supplement, Vitamin D3, melatonin Meds used: Augmentin XR, 1,000 mg. 2x daily; 200 mg. Luvox; 2 mg. Intuniv; Ibuprofen as needed Any 'other' pertinent info: DS12 in public school with IEP in place

I would think it might likely depend on the number of attendees. If it's a small turn-out, there might be more opportunity to do some Q&A, assuming the speakers are willing. I have a list of Q's for Swedo . . . .

I'd like to add my congrats to the pile accumulating here! Isn't it fabulous?!?!?! We should all revel in those moments! And look forward to more to come, as well!

Wow! Lots of questions! I'll try 'em one at a time. Yes, I believe that regular Augmentin at 875 mg. per dose is the next closest to the Augmentin XR dose at 1,000 mg. per. However, because the XR actually has a LOWER clauvanic acid component in it at 1,000 mg. than does regular Augmentin at 875 mg., I'm not sure why he wouldn't be a candidate for the "higher" dose of XR. Also yes, in our experience, the XR has been easier on our son's gut than was the regular Augmentin at 875 mg. per dose; not sure if that's due to the lower clauvanic acid contingent or if it's attributable to the time-release component which more effectively spaces out the medicine hitting his system. Yes, we still do other supplements as well, but we try to space them out so that he's not trying to digest massive amounts of anything at one time. His XR is morning and night, probiotics are throughout the day (before school, after school, before bed), NAC, a B-complex and his other meds (he's still on a low dose of Luvox -- an SSRI, and Intuniv -- an ADHD med) in the morning, then Vitamin D3, green foods supplement and multi-mineral at dinner. Finally, melatonin and his last probiotic before bed. My son had more gut/tummy issues on the regular Augmentin than he has had on the XR, but we haven't let up on the probiotics at all, nonetheless. Plus, yes, he eats lots of yogurt; a cup for breakfast and then a cup at lunch . . . sometimes an extra cup after school or for dessert. He doesn't like Kefir. He also eats a half banana every morning as that helps prevent the loose stools, and he's naturally a little low on potassium levels, too, so this helps. Culturelle is supposed to be excellent as a probiotic; we use FloraStor and a Super-Acidolpholus Probiotic from Trader Joes that also includes some "good" yeast and lactodolpholus, etc. In our case, we saw "results" in about 48 hours, but then he leveled out and the improvements took turns stepping forward and back now and again over time. The key for us, though, was that within 8 to 9 days of taking him off entirely, thinking maybe after 3 or 4 weeks, the abx had done all it could, he would regress dramatically. So we'd put him back on the abx again. Our son has also had it for a long time . . . 6 years, would be my guess . . . so we expect it to take a while to improve in a way that "sticks." We're about to enter Month 4 on the abx. My advice would be to keep a fairly detailed journal about his behaviors. It might not be an entirely horrible thing . . . especially since your son is at least functional . . . if he were to be taken off after that 10 days and then you and the doctor could watch what would happen. Again, in our experience, it took about 8 to 9 days for the old, "dismissed" behaviors to return in full force. At any rate, with a journal in hand, you have more information to lobby for continuation of the abx. With our pediatrician, she can be difficult to reach by phone, and appointments are usually a week or more out, especially if you want to see her instead of one of her partners or a nurse practitioner, so I've taken to dropping her letters every couple of weeks (she doesn't use email, either), just to keep her up to speed on DS12's progress and to reiterate how grateful we are for her continued support via the abx. Yes, we'll stick with the supplements, for sure. As for a restricted diet, I think that goes to quality of life; maybe you can ease up a bit. As for the inositol, do be mindful that this is supposed to work like a natural SSRI, so if he is serotonin deficient naturally, keeping up with that is probably a good idea, as well. I've heard of no side effects associated with it. Good luck!

Yes, I think keeping the meds, probiotics and supplements evenly spaced could consume your entire day! And if your kid is attending school during the day . . . well, some things just don't happen in an "ideal" way, I'll put it that way! My DS12 is taking Augmentin XR, and the pharmacist's directions are that it be taken "with food." That being said, I read somewhere (maybe here -- Alex has done a lot of Augmentin research) that it should be taken BEFORE a meal, but I never went further with the research to figure out how long before a meal it should be given. My guess is there's probably an "ideal," a "reality" and a "whatever works" response to this. It's logical that keeping meds evenly spaced as Beth Maloney did would result in the best "coverage," without gaps in strep protection or fight, right? But especially if your kid is functional, you have to weigh that against his participation in real life, which I would think might require some flexibility. Overall, if your son can tolerate the Pen on an empty stomach, the I would try it. If you're thinking about moving to another medication, you might want to consider something like Augmentin XR or Moxatag, since these are time-release medications, or Azith, which has a longer half-life, so that the precise timing of dosing may be slightly less of an issue.

Do you by any chance keep a journal . . . even a cursory one . . . on a day-to-day basis regarding your son's behaviors? For the first two abx trials we did with my DS12, we perceived a "plateau," seemingly very similar to what you're noting, after 3 to 4 weeks on the abx. So, both times, we took him off, thinking maybe the abx had done all it was going to/could do. And then, both times, after about 8-9 days, he began a backslide that was unmistakable. I took another glance through "Saving Sammy" and realized that, once Sammy was on abx for a longer period of time, Beth stopped noting each and every little behavior that was changing for the better and seemed focused, instead, on how many days he could go without a meltdown, how many meltdowns, etc. So that sort of changed my perspective a little, and when we went back to abx for the third time, I resolved to chronical not just the big, in-your-face changes, but also just note his attitude throughout the day, the meltdowns (frequency, intensity, duration), etc. What I found was that, like Sammy, though the BIG behavioral changes did indeed seem to sort of plateau after a few weeks, the overall improvement was still coming. Most noticably, first his meltdowns were decreasing in intensity and duration, and then they started decreasing in frequency, as well. In the end, I think we were so enthused by the almost instantaneous, big improvements we saw in the first couple of days on the abx, we sort of got "spoiled" and fooled into thinking that that sort of exponential improvement could maintain the trajectory. But it couldn't. In a way, though, I think that's a good thing because some of those bigger behaviors are likely the easiest to dispense with, and then, as the healing continues, your kid has to deal with some of the "deeper," more subtle stuff. So that's a quieter, slower, less obvious improvement trend. So, while it's possible you might need a different treatment, before you abandon the course that's taken you at least SOME of the distance, especially if he's only "plateauing" as opposed to decompensating, maybe try taking a second look at some more subtle signs? Just an idea . . .

Hi Lilyma -- I'm no expert on the diagnostics test list, as we've not had many of the tests conducted that other families go through . . . yet. There're several threads here listing the immune testing that is typical for PANDAS, so you might try scrolling through the forum for those; if I were more adept, I'd post a link, but I haven't gotten that down yet! Anyway, throat cultures are notorious for resulting in false negatives, primarily because they're not always taken properly (there's a thread on this here, as well!). Also, our experience with my DS12 has been that he has ALWAYS been entirely asymptomatic with strep, so throat cultures never came back positive for him at all. I'm not familar with the blood tests you cited above, but I can tell you that the blood tests we sought, on the advice of Beth Maloney of "Saving Sammy" were ASO Titers and AntiDnase. Folks will argue that all these tests do is confirm whether or not there's been recent exposure to strep . . . that they don't really confirm that strep or immune issues are in the mix . . . and I'm sure they're right. That being said, the fact that my DS12's ASO titers came back at about 4 times the normal range ("normal" depends on the lab, but typically tops out at about 200) was sufficient for our pediatrician to agree to abx treatment, and that was what we were after at that point. Whichever route you go, don't take "no" for an answer if your gut is telling you PANDAS is something you need to explore.

I think we could all use a money tree, if you've got some seeds you could share! This PANDAS stuff is expensive! Yes, I'm going. I'm lucky, as this time around the conference is actually a stone's throw away from home, so I just have to swallow the registration fee. I wish we had the space for me to open up Hotel ACN and welcome everyone in, so that costs would be less of an issue for everyone. But you know how it goes . . . a small bungalow with DH, PANDAS DS, etc. . . . the best I can offer would be to see if I could find cheaper hotel digs in my neck of the woods and then offer to drive the carpool to the conference. I'm open to "thinking outside the box," something I'm learning from all this PANDAS stuff! I REALLY feel as though I HAVE to go, especially since I'm a good bit newer to all this stuff than many of you. I'm very interested in hearing the docs on the "Premier List" give their perspectives, see what kind of vibes I get from them, etc. Plus, if I can get Swedo in a corner at some point . . . . . Man, do I have some questions for THAT lady!!!

Also, funny, the registration form itself doesn't detail the "PANDAS Track," but it is laid out in detail on the Speakers List. It looks as though PANDAS events begin Friday afternoon (1:45) with Cunningham and Swedo and extend through Saturday with Dr. K. at 9:00 a.m. and Beth Maloney at 4:00 p.m.

It looks as though the registration for the conference is open! A three-day pass is $295; you can get a "significant other" three-day pass for an additional $145, and your "significant other" doesn't have to be a spouse. It can be a teacher, friend, grandparent, etc.