MomWithOCDSon

As for long-term use of abx . . . Well, for one thing, there is concern about intracellular strep which, as the cell it inhabits eventually expires as all cells eventually do, the strep is released again, essentially creating an ongoing infection that drives the antibody response. If abx continue to be in the system, they can assist in killing off that newly-released strep and help keep the antibodies calm. Prophylactic doses may not be sufficiently strong to deal with this. Another consideration is the fact that some abx are known/thought to have anti-inflammatory properties, which assist in an entirely different way. There was a previous thread here on that. Finally, in the case of a drug like Augmentin or Augmentin XR, with a clavulanic acid component, clav acid itself is now being studied for its potential antidepressant characteristics! Too much we don't know, a little we do. It's really more experiential . . . if it works, it works. If it doesn't, it doesn't.

My frank assessment is, despite being on the cutting edge of the PANDAS field and very responsive via email, Dr. K.'s office is a little "old fashioned" in the way they do things, particularly administratively. Other than email, I don't believe they maintain computer records, Dr. K. is not a "member" of a national lab group (Quest Diagnostics) where we had our lab work done, though most every other doctor in our metropolitan area is, and when we received our bill for the remainder of his fee that went unpaid by insurance, it was handwritten on one of those "triplicate" pads with carbon-copy qualities. Meanwhile, every other medical professional we've seen in this ordeal generates records and bills via computer, etc. That being said, not ONE of our other doctors is reachable via email, and Dr. K. has always been very responsive to us in that regard; I don't believe I've ever gone longer than a couple of days without a response, and that includes the time period before we were even among his official patient load. So, though his administrative staff may not be entirely "modernized," I would take her suggestion to move past her and email Dr. K. directly. In addition, as noted by Lfran, I know Dr. T. is very responsive, also, and might be a good alternative for you. Good luck!

I, too, liked it overall. Despite having read "Sammy" and hearing Beth speak, a few new pieces of info showed up in the piece that I either hadn't heard before, or that I'd forgotten having read or heard. I have one major pet peeve about the program, though: How many times did that narrator have to call PANDAS "an extremely rare condition"?!?!?! I've got to believe Beth didn't have a say in that, given the number of families with PANDAS she's come to know over the last year or so! Still, SO annoying!

My DS is watching it with me after all. I think he is most interested in the "today's" Sammy, since it seems he's fully recovered. He caught something that's bothering me too with the show, though. How many times is this narrator going to call PANDAS "an extremely rare condition"?!?!

We'll be recording it and then offering it to DS to watch when he's ready. For those of you with ComCast or a related cable company, the call letters I see on our digital cable schedule for Discover Health HD are "D-HC." "Mystery Diagnosis" is on right after "Dr. G.: Medical Examiner" tonight.

I think Smarty hit it straight on the nose here. We see a lot of the same things . . . "grown up" a bit given our DS's age . . . but decision making continues to be the hardest part of the whole PANDAS behavioral package. I was going through some of my DS13's school papers the other day, now that his 7th grade school year is over. In early Fall, at the onset of our PANDAS journey, much like Sammy, he had written in barely legible script in his math spiral: "I need help!!!!!!!" It's enough to break your heart.

Thanks for this, Emmalilly. Our DS13 is several years away from college yet, but we're already talking about what he wants to study, where he might like to go, whether he will be ready to live away from home or not, etc. We're in the Chicago area, so it's great to know this option is essentially at our doorstep! Now, if the Tuition Fairy would just pay a visit at some point in the next 4 years . . . . .

Don't know yet, but we should know in the next week or so. When I went to refill DS's Augmentin XR prescription, they gave me the new generic. I am told the time release and the Amox-Clav ratios are identical to the brand-name, so pharmacist says there shouldn't be any difference. Cross fingers he's right. We strat the new script on Tuesday . . . .

We had a similar problem on Augmentin, initially. That's when we ramped up the probiotics and added bentonite clay, as well. I think there was another thread recently about Sach B (a "good yeast") being good in a fight against diarrhea. Not sure if that's the probiotic, in particular, that has made a difference for us, but he takes a 5 billion Sach B capsule four times each day. Plus, supposedly, abx doesn't kill off the Sach B organisms.

There's also something purely "sensory" about the upside-down behavior. Now, maybe the PANDAS is intensifying that or bringing it on entirely, but I have seen many kids, including my own, go through a period where being upside-down brings about some psychological benefit. I can remember myself, as a kid, too, preferring to hang my head upside down off the bed, or sitting in a lounge chair in reverse so that my feet were up and my head was down, especially for reading. The older I get and the more I read in an attempt to "figure out" and help my DS, the more I recognize behaviors and patterns of behavior that I exhibited at his age, and while it didn't thrill my parents (in my case, it wasn't sufficiently "lady-like"), no one ever thought to investigate some organic cause or issue associated with it. The other stuff . . . emotional lability, etc. . . . that does sound more PANDAS like, and we experience sort of "waves" of that in our house. Since DS is constantly on the same abx, I'm attributing it to that "saw-toothed" pattern everyone talks about. I like the idea of filming it and watching it, and contacting your doctor if you see a progression of the behaviors, or a failure for them to "settle out" to a less dramatic level.

Nice! Thanks Matthew!

It's hard to say, I think, because it is not an instantaneous thing; as I understand it, NAC's effectiveness builds over time. Our DS13, 135 pounds, takes 500 mg. twice daily, for a total of 1,000 mg. I do believe it has helped him, but I wonder myself if there would be any benefit in giving him more.

My DS's titers have been climbing, despite being on abx consistently for the last several months. The pediatrician tells me that just being exposed to strep . . . as he undoubtably is at school . . . will cause that to happen, though the abx will prevent him from becoming symptomatic. In PANDAS kids, however, rising titers can sometimes be linked to increased behavioral challenges, so I don't like it, whether he actually "gets strep" or not!

Good question, thanks. I'll try to remember to ask it specifically if and when we get back to Dr. K. Or maybe someone with a more immediate opportunity will ask it sooner. I'm thinking, though, that the answer would be "yes." Since you're introducing a pooled blood product with, theoretically, the "healthy" immunoglobulin of some 1,000+ other persons, all in the interest of "retraining" and "rebooting" your kid's immune system, then it should respond "typically" as opposed to "atypically" to infectious stimuli, no? So, if a majority of the population, when infected with strep, has classic sore throat symptoms, then I guess the new-and-improved PANDAS kid should, also. But, more importantly, if the immune system is corrected by the procedure, then the antibodies won't go into overdrive anymore, causing all the trouble. They'll come out to fight, then get quieted by the abx and fade away: no "self attacking self," no molecular mimicry, no long-term inflammation.

Kelly -- You're nowhere near crazy. You're asking a legitimate question; it's just that nobody here can answer it except possibly Dr. K. From having met with him only once, I do think he truly means "cured" in the pure sense of the word. He told us the IVIG essentially "reboots" the body's immune system, and that only IVIG can do this. He has said that he doesn't consider Sammy Maloney to be "cured" because he still reacts to strep with PANDAS symptoms and must take a course of abx again when exposed; if truly "cured" via IVIG, then the body would respond "appropriately" to an exposure to strep and, with a standard course of abx (10 days), the immune system would behave normally, the strep would be defeated, and there would be no "hyperactivity" of the strep antibodies which leads to the inflammation and PANDAS behaviors. But as JAG has suggested, maybe you should just ask Dr. K. outright. We were very direct (dare I say, "skeptical"?) with him on some issues, and he was patient and straight-forward with us in response. But this was not a question we asked, in so many words. As for the puberty question, I know I've read that Dr. K. feels that IVIG should be conducted prior to, or, at the least, more than one IVIG is likely to be required. That's another question I've not clarified with him at this point, but I certainly will should we find ourselves going down that path more distinctly. Interestingly, for what it's worth, our DS is 13 and was 13 at our appointment with Dr. K., and there was not a single mention of puberty, time constraints, prognosis for effectiveness of a single IVIG, etc. He didn't once even suggest that "timing was of the essence" or anything of that ilk. Not sure if that's because he was reading us, from the questions we were asking, as unlikely to move quickly in this regard, no matter what he might say, or if he was saving that information for if and when we look to move forward. Cured. That's a loaded word, for sure. And is it IVIG that cures? Or is it IVIG and time? Or is it IVIG, time and another 12+ months of abx? Or, is it possible that time and abx alone can achieve the same ends? And chances are, the answer is different depending upon each kid's specific profile. If your child has other immune deficiencies, like Melanie's, then IVIG seems like an inevitable piece of the puzzle, no? But if, like my DS, the immune system appears to be in full swing with the single exception that he appears to have an "allergic reaction" to strep, is IVIG an absolute requirement? Don't know.

Thanks for that!

There are many, many examples here of kids being on abx for extended periods and still, when necessary, responding to it later on down the road. For instance, Sammy Maloney took Augmentin for more than 4 years all told, but he still reaches for it now, several years later, if exposed to strep, and it still does the trick. And RF sufferers have traditionally been given years and years of abx. Another "cinch" for me was that our pediatrician, a "non-believer" in PANDAS, has continually agreed to renew our abx prescription; she's helping us, she says, under her "first, do no harm" Hippocratic oath. I even asked her if we should have liver levels checked, etc., as DS has been taking Augmentin since October 2009. She said no, that she has no concerns about any negative ramifications from either the medicine or the dosage, despite the length of time he's been taking it. I don't know if there's a possibility that abx resistance has been overstated in some cases, or if certain ones are less likely to foster resistance than others, or what. As LLM has already said, however, picking one's battles becomes an everyday conundrum in the PANDAS world. I like to think that sticking with an abx that seems to be working with regard to the PANDAS leaves us with several others in reserve should any resistance develop, and I can't imagine DS getting through his days right now without their assistance. It would seem cruel to remove them at this point.

Dr. K. wrote "strep." Told us to ignore it, but it was to get it all through the lab with no bumps.

I highly recommend Bock's book; he speaks with such depth of experience and conviction; he could probably sell farm land to a fish! Anyway, he thinks the issue is mostly that we've "upped" toxic exposure to such a degree over the last few decades; it's not that we as parents don't share the same genetics necessarily; it's just that our systems have not gotten "topped out" as quickly as our kids have because we grew up in at least a slightly healthier time . . . fewer air, soil and water contaminants, fewer immunizations, fewer things to assault a premature immune system such as our kids have pre-puberty.

Well, they've isolated genes related to other conditions, like TS and narcolepsy. And they've found an OCD gene in dogs. I heard Dr. Kenneth Bock ("Curing the New Childhood Epidemics: Autism, ADHD, Allergies and Asthma") speak at the AO conference, and he referenced a genetic component. His take on it was that some of our kids are genetically predisposed to have inefficient systems with respect to being able to clear out or move beyond environmental toxins and infectious agents, hence making them more prone to various conditions. It make sense to me and, frankly, helps beat back some unenlightened folks' arguments that, well, why don't ALL kids exposed to strep get PANDAS? Why don't ALL kids who are given the MMR vaccine develop autism? Answer: Because, moron, it's just not THAT simple!

Thanks for the jumping off place, Vickie! I've followed on Peglem's heels!

There is a condition in which light . . . especially sunlight . . . induces a sneezing reflex. It's called "photic sneezing," I think. That being said, I was going to come home from a therapy appointment with my DS13 this afternoon and post a new topic on sneezing . . . not a tic, but a genuine "juicy" sneeze . . . and its relationship to PANDAS or an auto-immune condition, in general. Talk about synchronicity! Here's our sneezing scenario. Firstly, yes, DS has seasonal allergies, and our pollen counts are really high right now. But we've been treating him, both with prescription and OTC drugs, as well as supplements like quercitin, and he's been faring well for the last several weeks. But earlier this week he had an "episode" (DH was with him, though, and I didn't see it), and it was repeated today, and it was truly bizarre! While in the office with the ERP therapist, after having been alone together for a bit, the therapist called DH and I in to "wrap up" the session. When he began to summarize one particular therapy goal that DS finds distressing, he started to melt down. All the usual physical behaviors: trying to curl up in a fetal position in the chair, pulling his long hair over his face, and curling and extending his fingers over and over again, all while muttering in a repetitive fashion (this is somewhat new), "I'm stressed, I'm stressed, I'm stressed." The therapist, DH and I coached him through the meltdown, and it was over in less than 5 minutes, despite the fact that it got pretty intense. He pulled it together and walked out of the therapist's office with us, got on the elevator, and we walked to the car. Once in the car, he'd calmed down sufficiently to begin to talk about why he'd reacted the way he did, what triggered the stress and kept it running, etc. We talked about how he was like a hamster that couldn't get off its wheel when he's like that. And then the sneezing began. He must've sneezed 30 times in less than 15 minutes; it was unreal. And these were genuine, snot-producing, shake-the-whole body sneezes. He also noted that his ears felt clogged and his throat was scratchy. It was as though he was having an allergic reaction to something, but he hadn't been exposed to anything except STRESS/ANXIETY! It was though he was mildly allergic to peanuts, and we'd given him a handful. Apparently, he had this same sneezing reaction after a meltdown in front of DH a few days previous, but though they'd told me about the meltdown, nobody thought to mention the sneezing attack until it happened again today. Does anybody know what the physiological process could be behind this reaction? When's he's anxious, is the "flight or flight" causing his body to release something that's inducing an allergy-like immune response?

Sorry Melanie. We can't vote because we haven't done IVIG at this point. I'm REALLY looking forward to seeing the responses, though! Thanks for posting the poll!

Lynn -- So many of the behavioral things definitely have the hallmarks of PANDAS, especially since you've got this combination of tics, OCD, separate anxiety, etc. The fact that they seem to be exacerbated by things like tooth pulling (tissue damage) would seem to play into the possibility that there is PANDAS at play, also. Finally, since allergies are an immune system issue, this, again, points to a possibility. Like your son, my son was never classically symptomatic for strep; also similarly, he's generally been very healthy . . . didn't catch every germ on the block or at school (at least not noticably), wasn't prone to long-lasting illnesses at all and would typically bounce back from a cold or virus very quickly (within 1 to 2 days). Finally, he's highly allergic to pollen, mold and dust. The few times that I knew he had been exposed to strep and I took him for a throat culture, it always came back negative; whether that was because the strep never made it to his throat, or because they conducted the test poorly, I don't know. We didn't know until we had blood tests for strep, the ASO titer and the AntiDnase B titers that he had very obviously been exposed at some point, might be carrying it around elsewhere (gut? sinuses?) and was, at any rate, reacting by producing a record number of strep antibodies, well beyond the lab's "normal" range. Not all PANDAS have elevated titers, but some do, and this was the case for us. With the lab results in hand, we started a trial of antibiotics; when he responded positively to the antibiotics, we felt we had our answer that yes, he has PANDAS. We have subsequently had more labs done and found that all of his standard immune function is average (which we sort of expected given his overall good health and resilience in the face of infection), but that his titers have continued to rise for some reason. Many families also take the Cunningham blood test which measures levels of other substances believed to be indicative of PANDAS; the test isn't yet considered fully diagnostic, but is another tool that many families and doctors use, in conjunction with other information, to clinically confirm a PANDAS diagnosis. There are several threads here about this test, how you can go about ordering it from Dr. Cunningham's lab, etc. So, bottom line is, given your son's young age and history, it would make sense to me that you at least explore the possibility of PANDAS. You might be one of the fortunate families that catches it relatively early, or, at the least, you will have ruled out one possible contributing factor to your son's behavior. Good luck!

Well, I think it depends on the age of the child. I'm guessing that, because you are for all practical purposes now an "adult child," your mom's frustration is tied to not only expecting age-appropriate behavior of you, but desperately wishing that it was possible for you to maintain age-appropriate behaviors, despite your OCD/PANDAS. That's a frustration I think all parents share; it just varies from age to age in terms of what's considered "age appropriate." I can only speak for myself, and my DS13's PANDAS behaviors are 99% OCD in nature. It hobbles him at times from acting like a 13-year-old, probably not unlike yours hobbles you from acting like a 23-year-old. Our DS has been in ERP therapy off and on since he was first diagnosed with OCD at 6, and we've attended much of the therapy, as well due to his age; therefore, we've had an opportunity to build skills and develop tools and techniques for helping him muscle through some of the compulsions, and moving past some of the obsessions, as well. Our mantra in our house is, "I will help you. I will accommodate you. But I will NOT accommodate the OCD." I guess it's sort of a "tough love" thing many times because, in our experience, if you feed the OCD behaviors, they just grow and expand and spread throughout more and more of his everyday activities and choices. Given an edge, it would consume his life. So we can't give it that edge. Very early on in therapy, both we and DS were encouraged to separate the OCD behaviors from the child . . . to blame the OCD, not the kid who has the OCD. He even gave it a name, an alter-ego, so when we felt like yelling out of frustration or snapping because of the pervasiveness of some of the behaviors, we could yell at the alter-ego, blame the alter-ego, snap at the alter-ego and not, in totality, take it out on DS. That has definitely helped him preserve much of his self-esteem and sense of being a good person with a "bad" condition, rather than a bad person. PANDAS is treatable via antibiotics, IVIG, etc. But, especially at your age, those OCD behaviors, IMHO, require therapy. Some of your compulsions and obsessions have likely become routine, habitual, by this point, so the behavioral side of the illness has to be addressed, also. Have you tried ERP? Can your mom attend some sessions with you so that she better understands how she can help you without aiding and abetting the OCD?