MomWithOCDSon

I've always been a little confused about this, and I'm trying to wrap my brain around a basic concept. It seems, from the postings and reading here, that some of our PANDAS behavior kids are hyper-immune (rarely classically ill, asymptomatic for strep -- negative cultures but high titer counts, significant allergies), and some of our PANDAS behavior kids either appear to be, or are confirmed by testing to be, immune deficient (frequently classically "sick," "catching" everything they come in contact with). So, is it appropriate for the treatment protocols to be the same for each classification? Is it a matter of "modulating" the immune system, rather than either specifically calming it or boosting it? Or is it that the hyper-immune kid should or does respond better to one treatment avenue, while the immune deficient kid responds better to another? Again, I am science deficient, so please excuse my ignorance if this is obvious to most of you but remains a mystery to me!

I don't know about that. We've had OCD in our house for the last several year, and it is definitely a double-edged sword when it comes to "tuning in on details." It seems to help to a degree, but then it can become a detriment, at least for our DS13. He will obsess on one particular detail of the assignment or information, and this will cause him to miss the big picture or to forego another corner of the assignment because all his focus goes in that one sector. There does seem to be a correlation between math skills and OCD, though; and math skills (deterioration of) and PANDAS. I've seen those relationships mentioned more than once in the literature.

I'm interested in this, too, as it seems our whole family has . . . in the last 10 years or so . . . become more and more perpetually "stuffy" and in need of help with over-the-counter stuff like Sudafed and Benedryl. I've personally gotten so used to it, that I don't pay much attention to it anymore. But then I see all your posts about strep in the sinuses, and it makes you think . . . . . I had an holistic doctor tell me that strep likes to "hide" in the sinuses very early on in our PANDAS experience, but then I had a couple of subsequent doctors actually chuckle at me when I inquired about it with regard to DS. Guess I shouldn't let up, huh? With all the stuff we're all contending with, though, and having DS on abx almost solid for the last 6 months, how long could that strep survive in there?!?! Maybe a visit to an ENT is called for?

Thanks everyone! Those of you with the idea that allergies are the trigger . . . I'm beginning to think you were DEAD on! DS was in the bathroom this morning, getting ready for school, and I hear him clearing his throat over and over again. So I ask him if he remembered to take his allergy nasal spray (prescription). His response: "I forgot." To which I say, "You forgot whether or not you took it, or you forgot to take it, period?" To which he says: "I forgot to take it, period. And I forgot to take it yesterday, too!" That little varmit!!! He's usually so good about it, we haven't had to issue reminders, but I guess we're back to that again! Thanks, Nancy, for the Home Depot air mold kit suggestion. Definitely going to test that out. We have a dehumidifier running in the basement, 24-7, but you never know!

Hi May -- There's another thread on here somewhere (maybe search "abbreviations") that explains some of the basics in that regard. Meanwhile, when it comes to the "lingo" of PANDAS, I can say that it's something that comes over time, as you read and absorb and participate on these boards. "Sawtooth" is just an illustrative term for the healing pattern many of us have seen in our kids . . . kind of like the teeth on a hand saw, where they are jagged and have peaks and valleys. Typically, by "sawtoothed healing" we mean that our kids will appear to improve for a period of time, but then there may be not just a plateau but an actual reversal in the process, with some of the behaviors you'd thought were abandoned showing back up for a period of time. "Saw-toothed" meaning not smooth, not always on a measurable trajectory, jagged, uneven.

DS's primary PANDAS manifestation is OCD, so he would shower 10 times a day if I let him! Good suggestion, though. He does shower after dinner, before bed, as a general rule. But he's got this long, thick hair right now, so who knows what it harbors between showers! Can't get him to cut it though, and I have to pick my battles.

There's no question about all of that! I did the "spring cleaning" thing two weeks ago and washed every linen, every curtain, etc., and our vacuum has not one but TWO hepa filters on it! We also make sure that DS's bed is made every day to keep the dust out of his sheets. But despite our best atttempts, with the windows open, I can see a fine layer of dust/pollen on our dark furniture. Time to roll up my sleeves . . . AGAIN!

Thanks Chemar, Vickie, Kim and Mati's Mom for all the allergy info. I know that, in the past, his allergies could be especially annoying to him when they were in full force, but this is absolutely off the charts, and so sudden. I never would've thought the impact could be this big. I'll take the suggested steps, though. The windows have been wide open (it's a beautiful, sunny, 70-degree day), but I guess I'll shut 'em and run our newer, hepa-filtered AC system nonetheless and see if that helps him at all. This is just so weird . . . .

Yes, he does have allergies. I guess I would sort of expect a little uptick in behaviors, but nothing this sudden and/or this extreme. Does a sudden and extreme ramp-up in behaviors fit with the TS model? If so, then maybe that is at least part of what's going on here. However, we have him taking curcumin and quercitin, as well as taking a prescription nasal spray (Flonaze); he's not exhibiting any typical signs of being overwhelmed by allergies, though he did have a red eye a couple of days ago. It cleared up with a couple of doses of eye drops. Do you have anything else to recommend for the allergy picture? Thanks!

DS13 has been doing so well, up until about 3 weeks ago. Over his spring break, he had several meltdowns, which we attributed primarily to him being unscheduled and feeling a bit at lose ends. Plus, even though some behaviors seemed to get worse, others continued to improve. We had been slowly scaling him back after 5 months on high-dose abx (2,000 mg. of Augmentin XR daily), on which he had improved tremendously. It was at the point where he was down to 500 mg. of regular XR twice daily for about 2 weeks that we really noticed contamination becoming an issue again, even though he seemed fairly stable emotionally and kept his overall good attitude. But after repeated stalemates over contamination issues we thought we'd long left behind, we called the doctor and stepped back up to the full dose of XR. Within a mere 48 hours, we saw the positive impact, and we were sure we were back on the right path again. But for the last two days, he's been having major homework trouble. . . can't get through it, meltdowns, perfectionism (he's never sure he's answered the questions correctly, or thoroughly enough), dragging the process out so long that there's no way he can finish it and still get a good night's sleep, etc. And he started with the spastic sort of "jerks" and "twists" again (are these "tics"?), as well as the chorea-like fanning and fisting of his hand, over and over again. He went to school this morning, like usual, and everything seemed fine, with the one minor exception that, I realized as I dropped him off, I'd forgotten to give him the Valerian Root we've given him the last two days to sort of encourage his sense of calm, even though the homework sessions the nights before have been tough. He was at school for about 2.5 hours before he called me from the nurse's office. Said he was freaking out in class, feeling very anxious, was jerking and twitching and making little noises (vocal tics?), breaking his pencils, etc., and the other kids were looking at him. I didn't know what was best, but I went over to the school and picked him up, mostly with the thought that I could bring him home for lunch, give him a Valerian, and take it from there. When I picked him up I asked the nurse if there were any recent cases of strep in the school, and she said no; the last one was before spring break (4 weeks ago), and it was in a different grade (those kids are in a totally different part of the building, though they share spaces like the library and the cafeteria). She also acknowledged, however, that, at this age, parents don't always report the strep, though. Still, given the dose of abx he's on, how likely is it that there's been some "breakthrough"? Or could it be another strain that doesn't respond well to Augmentin? So, he's been home for a couple of hours, had lunch, took a Valerian and some more probiotics, and we decided he'd just spend the afternoon here, working on some school work. He cannot get through his math at all; he is trying like crazy to avoid a writing assignment for language arts, even though he can do it on his computer. I gave him a couple of Ibuprofen, also, but it doesn't seem to be helping him in any measurable way. I called our pediatrician who's been prescribing the abx to ask her about maybe going up (the adult XR dosage is double what we're giving him for sinus infections, etc., and he's technically adult-sized) or maybe trying something else, like azith. Also want to ask her to order strep testing (titers) for all of us in the family, since I'm pretty sure swabs/cultures for all of us will come back zip. I also called Dr. K.'s office. We've not gone that route yet, but I'm terrified this is the beginning of the same downward spiral that we began about this same time last year, only now what arrested it a year ago (Augmentin) isn't doing that for us now. Anybody else experienced something similar? Any advice? Can anyone tell me the specific test to request for Myco P, just in case it's THAT this time around instead of strep? Thanks in advance for your help! Nancy

Absolutely, our DS has significant writing issues, especially during an exacerbation. He resists it, it is illegible, he breaks pencil points repeatedly, he snaps pencils in half, etc. From what I've seen on threads here over the months, this is not uncommon in PANDAS kids. I think Dr. K even has something on his web site about it. We've done a couple of things. Frankly, during exacerbation, I'm not sure any attempt to get him actually writing is going to be very successful; it's just too hard for him. But you can ask him to type/word process instead, or you can even ask him to dictate answers to you, and you write them down on his behalf. We even have some software and a microphone set up on the computer so that he can speak what he wants to write, and the computer more or less does it for him. Interestingly enough, once things get more under control with him mentally, he writes without a problem, and it's even pretty legible!

I think around the 14 to 18 day point after commencement of abx is when we saw our first "saw-tooths" in the healing curve. In fact, not once, but twice, it led us to take him off the abx because we thought perhaps they'd done all the good they were gonna do! (We're slow learners, I guess! ) Anyway, the third time around on abx, we finally learned to exercise some patience and ride it through that saw-tooth bump; we DID come out better on the other side, and I'm willing to bet you will, too. It's hard to know what's going on inside their heads, and when the first few days look so promising, it's hard to just sit there and take a setback without questioning yourself, the abx, the kid's commitment to recovering, etc. But, truly, hang in there and keep your eyes, ears and heart open. I am willing to bet that in another day or two, things will start looking sunnier again in terms of her attitude, resilience, mastery of more pieces of the OCD, etc. It is a lllloooonnnnggg road!

I CAN NOT believe you just said that! My son says "I like cheese!" all the time! It's completely random. He also says, "I like soup" or "Eat soup!" for absolutely no reason. The irony is that he doesn't like either soup or cheese! LOL I just relayed this exchange to DS, and he can't believe there's another random "I like cheese-r" on the planet! Thanks for the laugh! Now if too many others chime in with some common experience with that particular phrase, I'm going to start to wonder . . . .

I know we have explored this topic before informally, and I keep running across posts in the forum that seem to indicate that many, many of our kids are bright little boogers! So, I thought I'd start a poll and see if that's a mis-impression, or if it is a real finding. Plus, I know Dr. K.'s web site links mathematic acumen in families with PANDAS tendencies, etc. And then that's led me to want to know something about the science, and I'm hoping some of you scientifically-minded folks can chime in. Certainly, nobody would make the argument that inflammation encourages or feeds intellect, right? So, that's off the table. What might be some commonalities at play, then? Are dopamine, CamKII, or any of the other brain chemicals we associate with PANDAS thought to be associated with intelligence? Or could the blood brain barrier be involved somehow, with "brain food" nutrients more readily absorbed by our kids than the non-PANDAS variety? Or is it all just a coincidence?

I don't know about making up words, but our DS, even at the ripe old age of 12, would blurt out nonsense nonsequiters for no apparent reason; I read it as him feeding off some stress. He knew he couldn't swear, so instead he would blurt out a ridiculous word or phrase like "Chicken!" or "I like cheese!" at the oddest times. As a stress-buster, it almost seemed to work, so long as it wasn't an entirely inappropriate time or place (like in the middle of class at school) because it would usually crack someone up, there'd be some giggling, and then he would just move on.

Thanks for a terrific story with a long-term outlook! It's good to hear another realistic but hopeful and successful outcome, especially for relative "newbies" like my family. All the best to you and your family. May the string of successes continue on and on and on and on and on . . . . .

It makes sense that it varies depending on the child and the issues, and it probably varies according to the location (or at least the location's mindset) some, as well. In our state, the IEP provides for access to special education classes but does not mandate them; in fact, our DS is in the gifted/accelerated program in his school so, for the most part, special education classes would not be capable of providing education in keeping with his level of ability. He does, however, take advantage of one class period each day in the special education classroom as a study hall, break from academics, and a chance to catch up on work if he's fallen behind at all. It is my understanding, however, that the federal laws governing these things requires "the least restrictive educational environment available" for each and every child, so if a kid needs the other IEP services (like a case-worker on site, or the services of the school social worker on a regular basis, or even one period each day for chilling out/catching up) but not the special education cirriculum overall, I would think just about any school would be required to provide such. That's not to say you might not have to fight for it, though! I'm guessing I'm feeling pretty lucky right now to live where we do, in the school district we have!

Chemar -- Curious as to what that means, "doesn't cover the emotional and other health related issues the way that a 504 plan does." We haven't run into any troubles or conflicts in that regard, and the IEP is inclusive of additional services (like a caseworker on site who helps DS advocate for himself, etc.) that the 504 was not. Our classification with the IEP is still OHI, or Other Health Impairment, just as it was with the 504, as well. From everything I've read and heard elsewhere, as well as with our own person experience thus far (though admittedly limited), the IEP seems to help every bit as much as the 504 and then some. Can you give some more specific examples so I know what to be on the lookout for?

My DS had a 504 Plan from 3rd grade through 6th, which we've recently (this school year) found necessary to "upsize" to a full-fledged IEP because of the latest exacerbation and the greater overall expectations in the junior high setting as opposed to elementary school. DS's behaviors were predominantly OCD, though they could devolve into high anxiety, frustration, tears and pretty well-controlled rage (he generally turns his inward, as opposed to outward) if the OCD was active enough. His 504 accommodations were as follows: washroom breaks as needed, with no tardy penalties if delayed getting to next class/activity; untimed testing; additional time allowances for homework and/or long-term projects; exemption from full-school assemblies; subtle, private teacher reminders as needed for focus and participation; permission to keyboard writing/essay assignments rather than hand-write; permission to bring unfinished classroom work home to complete; and availability of alternative activities as appropriate in place of "arts and crafts" projects. Those were modified over time, too, and frankly, most of his elementary school teachers would readily grant him an accommodation now and again that wasn't officially part of the Plan, just because they wanted to help him through the day.

Strangely enough good analogies are hard to create -- Let's try this one. High CaM Kinase II is like a sunburn. When you now take a shower, the shower feels incredibly hot -- you are feeling the same temperature, but your temperature guage is hyper sensitive. Your clothing rubs, the finest piece of sand is agony, everything feels puffy/raw -- everything is now more sensitive. So High CaM Kinase II increases the sensitivity of the bacteria sensors making them create inflammation with the slighted provocation. Hopefully I'll think of a better analogy but that's the one I'm thinking of right now -- and yes, I just got a sunburn :-) Buster This is a great analogy, thanks Buster! And it may just be odd coincidence, but we put DS on taurine (1,000 mg.) two days ago, and his sunburn seems to be settling into a nice tan of late!

And anger is POWERFUL so long as we let it drive us into action, instead of pound us into a frustrated stupor! I think we're all angry . . . I'd worry for our sanity if we weren't!

Okay . . . I'm just going to put this out there because of our experience. Our DS13 is in a public junior high school and we began last year with a 504 Plan in place from grammar school. For his first year in junior high we modified it a bit, but not much, as he was still in a good place. When the s$i! hit the fan at the end of last year with this exacerbation and carried over into this (his 7th grade) year, we wanted to modify the 504 yet again, and the school actually suggested switching it to an IEP instead. The IEP actually categorizes DS as part of the "special education" program, even though DS, like your son, is intellectually gifted. I was initially worried about him being so categorized, and concerned about any stigma that might be attached to it, especially in light of his intelligence, but the positives of going with this plan eventually won me over. Being qualified inside the special education program and granted an IEP means the school had to test him (he was tested by the school psychologist under very low-stress conditions) and they found that not only was he technically gifted, but that he has certain talents (verbal) and certain detriments (spatial), as well. So I didn't have to go to bat with them to make sure he was able to continue with the district's gifted education program, despite the other challenges he might have. The testing also proved to them, emphatically, that what was going on with DS was NOT behavioral, but organic on some level (they saw it as a "processing" and "anxiety" disorder because of DS's strong OCD behaviors, rather than PANDAS, but in the end, who cares so long as he gets the consideration and accommodations he needs to be happy and healthy in school?) So, now DS is in school full time, and his IEP protects him from a lot of the BS. He has a case worker who is WONDERFUL and helps him advocate for himself with the occasional stiff, inflexible teacher, and he gets two weekly social worker sessions, as well: one by himself where he can just rant about his day if he needs to, and one with a couple of other boys in his grade that he can relate to. The schools can be really frustrating and, even with this IEP and some very good people in my kid's corner, I still have to get in there and swing on occasion, and I expect I will have to continue to do that at times, right through the last day of high school. But part of the IEP plan, too, is to teach DS how to best advocate for himself and come to terms with each of the teachers, the academic expectations, the level of accommodations he truly needs as balanced against his intelligence, etc., so that he can mature and look after himself (hopefully with a college future) without his parents' ongoing involvement at a high level. So, I guess what I'm suggesting in short is, the principal's attitude is unfortunate and not serving your son's best interests. That being said, our experience would suggest that you be careful not to throw the baby out with the bath water. The "special education" doesn't have to be exclusive of "gifted education," and it doesn't mean your kid gets stuck off in a corner somewhere with mentally challenged kids or anything else, especially since the law requires that each child be given the opportunity to learn "within the least restrictive environment possible." Maybe if your son can be granted an IEP and have a case worker on site that he knows will back him and is in his corner, he will feel more confident and less likely to display signs of the ODD, which is probably the principal's biggest issue at this point. Just our experience and one point of view . . . . .

Sorry Betty and 3BoysMom -- Haven't responded earlier primarily because I don't have anything very useful to offer. But as I can hear your frustration in your posts, I thought I'd at least offer some solidarity. My DS is 13 and considerably physically larger than your boys, so I don't know that any of what's worked for us will necessarily work for you. He's taking 2,000 mg. of Augmentin XR daily now, and it helps tremendously. Think it may have to do with the time-release qualities of XR as compared to regular Augmentin, but the XR seems to be much kinder to his tummy, though he's on lots of probiotics, also. One thing to keep in mind: the ADULT dose of Augmentin XR for something like a sinus infection is actually DOUBLE this 2,000 mg. per day, or 4,000 mg. daily. So despite the big number and the conceptual "high-dose abx" tag assigned to his dosage, it looks as though DS13's dosage is actually pretty "average." Anyway, it is making a difference. We also give him quercitin and tumeric or curcumin, all of which are supposed to be anti-inflammatories, though none of them will necessarily work quickly enough to take the edge off behaviors instantaneously. Have you tried taurine, which I understand has good results for tics? We've just started using it with the idea that it may help modulate the CamKII in DS's brain, though he doesn't have any major tic behaviors (only very minor ones, like throat clearing, though that has disappeared in the last 24 hours or so, as well). Betty, it seems quite likely that your son has been re-exposed, if not to strep, then potentially to something like Myco P, given the tonsillitis in his class. Little immediate help, I'm sorry, but checking with the doctor to get a fresh strep test and discuss how much of an increase in abx (or possibly a switch, even, if he's gotten a breakthrough strep infection while on the Augmentin) is advisable. Best of luck to both of you and hang in there!

Nita -- We were exactly in your shoes about 6 months ago, with the exception that we had not done IVIG. But DS13 had such uncontrollable OCD with rages and meltdowns that he was 99% non-functioning. We had to pull him out of school. We considered an inpatient program but, frankly, a) wasn't covered by our insurance and like your son, his separation anxiety issues were so big, we weren't convinced it wouldn't do him more harm than good in the end. We found, instead, what we thought was a good compromise: a "partial inpatient" program which was essentially a day program where we dropped him off at 8:30 a.m. and picked him up at 4:00 p.m. He could be with us every night, but he was getting several hours of therapy and drug management every day. Unfortunately, that STILL turned out to be a disaster. The program, though the provider had presented it as being appropriate for addressing anxiety/OCD issues, wasn't too different from what you describe. It was predominantly populated by self-harmers, suicidals, drug-addicted and/or homicidal teenagers; DS was the ONLY kid in the "program" with anxiety/OCD concerns. I hope the Zoloft assists you as it did before, but I can tell you from experience there is a phenomenon known as "SSRI Poop-Out," which you may have heard of yourself. An SSRI seems to assist kid beautifully and yet one day, it just stops working altogether. Our DS experienced that with Lexapro. Despite strep and re-exposures over the years, Lexapro kept him functional for over 4 years (we didn't know about PANDAS and abx or IVIG then); but in his latest exacerbation, it did nothing. So he was switched, first to Zoloft and then to Prozac; neither of them did any good either. He's currently taking Luvox, though we're not convinced that's helping him, either; we're just hoping it's not hurting, and we've begun to wean him off, too. Now our DS13 (about 130 pounds, by the way) is taking 2,000 mg. of Augmentin XR each day. He began that some 5 months ago, and then we began to try to wean him down. His behaviors escalated, though, after about 3 weeks on a reduced dose, so last week we put him back up to the full dose. His positive response has been almost immediate in terms of attitude adjustment and ability to manage the OCD compulsions. By the way, he also takes Intuniv (20 mg.) and has been for about 3 months. It seems to help him maintain focus and not let the OCD "hijack" his focus, particularly when it comes to school work. We haven't undertaken IVIG, but we reserve it as an option should DS's condition not resolve itself and remain manageable. I know that WorriedDad's son is also in our kids' age group, and he has done both IVIG with Dr. K. and is now on the 2,000 mg. Augmentin XR regimen, with good results. I frequently hear of some "healing decompensation" that happens sometimes with IVIG, and maybe this is what Dr. K. is referring to; the kids sometimes have to get a little worse before they get better after the IVIG "resets" their immune system. But perhaps it is worth considering a higher dose abx while that IVIG healing gains hold. I would imagine Dr. K. would be open to that, especially given his level of experience overall and his particular experience with WorriedDad's DS.

What I KNOW is that if you check the AO Conference web site, he's dropped off the list of speakers. What I've HEARD is that he became concerned about an evolving media circus and didn't want to get side-tracked by that. AO Conference Speakers Schedule Since there's no mention of the "Think Tank," per se, I really don't know who plans to participate in that, but I've gotten the impression that Dr. K. is avoiding the entire event. Fortunately, he remains on the speaker list for the International OCD Foundation conference in D.C. in July. IOCD Conference Speaker List