MomWithOCDSon

Are you asking about a supplement that combines inositol and choline? Never tried that; wonder what the choline brings to the picture . .. do you know? We did try inositol for OCD and unfortunately never really saw any positive impact from it. But I know that others here on the forum have used it to good results, so it seems to vary from person to person. Frankly, because my DS was taking SSRIs for years before we found PANDAS and started researching some alternative ways of addressing not just the PANDAS but also the OCD behaviors it brings to the table, we may have impacted his body's way of producing/absorbing its own serotonin to the extent that any positive impact something like inositol would otherwise have had became negated. The other possibility, I'm thinking, is that at the age of 14 and 140 pounds, perhaps we would have to give him an exhorbitant amount of inositol for it to make a dent in his OCD behaviors. What we've found that has seemed to help the OCD notably, however, is another supplement called NAC, or n-acetylcysteine.

Hi Eileen -- Well, the most prominently noted possible side-effect of lamictal is Stevens-Johnson syndrome, a skin infection/condition that's pretty scary to consider. Stevens-Johnson Syndrome Frankly, made us stop and think for a bit. But upon some more research on that particular illness, incidences of it have been attached to everything from NSAIDS to penicillin to anti-convulsants (the class of drug lamictal falls under). Cases associated with these drug uses, however, are generally thought to be associated with high doses administered quickly, as well as in conjunction comorbid conditions. Needless to say, though, I kept an eagle-eye on DS's skin for the first couple of weeks of the medication, just to make sure! More common possible side effects, according to the psych, are headaches and dizziness. Anyway, we started "low and slow" and have seen none of the side effects whatsoever thus far (knock on wood!). No headaches, nothing. We began with only 25 mg., once each day, for 1 week, increasing it to 50 mg. divided among two daily doses. At our last appointment, the psych suggested we increase it another 25 mg. per day, but thus far, we're not willing to go there. Our historical experience has been that "a little more" is frequently "too much" for our DS when it comes to these medications, and his improvement trajectory continues to be upward, so why mess with a good thing?

We're very grateful for the boost the lamictal has given our DS in terms of managing his OCD. I tried, unsuccessfully, to convince our psych to give our DS a try at riluzole or namenda based on the emerging glutamate research. She was reluctant to do so because these drugs, she says, are still being researched and made subject to trials for their efficacy and safety for kids and she's not equipped for monitoring the possible physical impacts of these drugs on an ongoing basis the way the trials are set up to do. So when she offered an option like lamictal with which she was both familiar and comfortable, and it had the glutamate modulatory component, as well, it seemed like a no-brainer. As a side note, our psych has commented that glutamate is becoming the "serotonin of the 2000's," meaning interest in the role of glutamate in brain function is now captivating both consumers and researchers in much the same way serontonin did in the 1980s and 1990s.

Hi EAMom -- The whole glutamate/OCD connection is sort of "pet project" of mine in terms of interest. I think Melanie may have tried Namenda with her son; I'm sure she'll chime in if my memory is accurate. I don't know about the blockers, really. The use of glutamate antagonists, like riluzole, have been widely announced with respect to OCD, and the riluzole trial at NIMH for "treatment refractory OCD" in kids is, I'm told, showing great promise for the drug in that capacity. Dr. Grant is heading up that trial, and I've corresponded with him about some of the "coincidences" between PANDAS kids and "typical OCD" kids, such as the fact that Dr. Rosenberg at Children's Hospital of Detroit has found that the caudate nucleus of kids with OCD tend to have higher concentrations of glutamate in them than do non-OCD kids, and Swedo has found that the caudate nucleus of PANDAS kids is enlarged. He says the possible connection is "intriguing," but I've not heard any follow-up; I think everybody's got their hands full trying to corral their own individual pieces of the research puzzle. Meanwhile, I can say that we're having some good response to another glutamate-impacting drug used off-label for OCD: lamictal, or lamotrigine (generic). Our PANDAS DS entered a fresh, harsh exacerbation in mid-February of this year, and we were having trouble getting the OCD behaviors to recede. Our psych suggested we try a "mood stabilizer" to try and quell some of his distress over the compulsions and rituals. We first tried Abilify, and first it did nothing, and then once the dose was increased, he went bezerk. So we went off that. When she listed a number of other options (neurontin, lamictal, remeron), we did some research so that we could play an active role in the decision. Finding that lamictal is believed to inhibit sodium channels which, in turn, causes modulation of glutamate, sold us on a trial. Our DS has been on a low dose of lamictal since April 22nd, and he has done nothing but improve. His OCD has diminished by . . . I would estimate . . . 60% in the four weeks he's been taking that drug. Now, some of that may be coincidental with overall improving health, lack of re-exposure to strep, etc. It's so hard to isolate cause and effect with these kids! I will also say that we saw a positive difference in our DS on Day Two of adding this medication, though both the psych and web research suggested that the positive impact would build up over time, not unlike the 4-6 week schedule for typical SSRI's. Still, there are some other forums on which lamictal is discussed and some people enjoy immediate relief from it.

What does milk thistle do?

I know it can seem overwhelming, especially changing "horses" in the middle of the stream, as it were. We were in a similar boat a couple of years ago, having been immersed in an OCD diagnosis and all that comes with it for nearly 6 years prior to PANDAS. But it gets easier, and all the folks here on the forum can be great resources for you as they've been for us. As you have the time and energy, I would paw through the Pinned Threads at the top of this PANDAS forum for some of the basic information and some treatment protocols that have worked well for other families. Many others here also use biomed responses to help keep their kids healthy and to respond to strep exposures. Natural anti-inflammatory supplements are also a favorite, and you'll find lots of threads here regarding items like curcumin, tumeric, quercitin, Vitamin D3, fish oil, and probiotics. Good luck to you!

We ran into the same thing with our psych, only her explanation was that, rather than the behaviors always being there and we failed to notice, DS's Aspberger/PDD behaviors were "growing" in frequency and intensity as he got chronologically older and the gap between what was expected of him (especially socially) and what he was capable of widened that much more. I think, especially because she hadn't known him for an extended period and seen how "non-Aspberger/PDD-ish" he generally is outside of an exacerbatory period, she made assumptions about who he is and how he functions. Now that he's coming out of exacerbation again, though, she's come around; we've been able to "leverage" his behavior both at sessions with her and via videotape to demonstrate to her that those behaviors are really just part of the whole PANDAS symptomology. Now she's on board.

I think you'll see many affirmative responses here. Even many of us with reasonably higher-functioning (verbal and otherwise) kids have been through Aspberger and/or PDD diagnoses as a result of PANDAS' ravaging of our kids' brains. My DS's autistic traits fade significantly outside of PANDAS exacerbation, along with his OCD behaviors; abx was a real breakthrough for us, too, despite a long-standing OCD diagnosis (almost 6 years) and a more recent PDD one. Glad you found PANDAS and are being given abx for treatment. The proof is in the pudding. When his doctors see his progress for themselves (video tape it if you can't or don't want to go into the doctor in person), they may look for other rationales, but the temporal connection between his PANDAS treatment and the autism abatement cannot be entirely ignored. And it probably won't be, either, by a doctor who recognizes PANDAS to begin with!

Someone had posted a topic earlier this week about familial history of OCD and/or TS and whether or not that has a link to a current generation of PANDAS kids. Then, in another link, there's been a discussion of a new therapy (TSO) for both autism and PANDAS. That autism/TSO web link led to yet another link that, while perhaps it's been posted here before, I don't recall ever having seen. I knew they'd found an "OCD gene" in dogs; I didn't know they'd found one in mice, as well. But, more than related to OCD, it's related to the immune system, so there's yet another link between immune function (or dysfunction) and OCD: "But animals with a defective version of the gene Hoxb8 groom themselves so much that they tear out patches of fur and develop skin sores. The behavior resembles a type of obsessive-compulsive disorder called trichotillomania, in which people tug out their own hair. The Hox family of genes is best known for helping to organize the embryo’s body, but Hoxb8 has several effects. The protein encoded by the gene functions in neural development, so mice lacking it have abnormal spinal cords and sensory ability, including pain sensitivity. This defect could in theory provoke the rodents to wash excessively, although molecular geneticist Mario Capecchi of the University of Utah School of Medicine in Salt Lake City and colleagues note that Hoxb8-lacking mice also obsessively groom other mice. That suggests that overcleaning is not a sensory problem but a behavioral one originating in the brain. When Capecchi and colleagues began looking for the Hoxb8-making cells in the mouse brain, they expected to find that the source was neurons that control grooming. To their surprise, the only cells producing Hoxb8 were microglia, immune cells that guard against pathogens. Although some microglia start out in the brain, others are born in the bone marrow and move in. Overall, adult mice with faulty Hoxb8 harbored about 15% fewer microglia in the brain than normal." Science Now Article - Immune Gene and OCD Thanks for the previous posts that led to this one!

My DH has subclinical OCD, and I have had my own issues with bouts of general anxiety. As a kid/teenager, i never actively "caught" strep, though my sister had it constantly, so I was constantly exposed. I had a lot of behavioral issues, though, which my parents always classified as "willfulness" and "a phase" I would grow out of. Looking back, I can remember feeling very anxious much of the time, but I didn't know how to express myself in that regard, and my parents were very no-nonsense, "get over it" types. So I became sort of a "rager" to deal with and maybe hide my anxiety. Did I have what's now known as PANDAS? I think, maybe. Interestly enough, I never "caught" strep throat in the classic sense and displayed any of the typical physical symptoms (sore throat, fever, etc.) until well into my 30's, when my DS started attending school full-time and would bring it home with him. Does that mean my immune system "normalized" in some way so that the strep took on more typical symptoms? I will say, I think my anxiety increased with those illnesses though, at the time, I just attributed it to not feeling well overall. In our case, I feel fairly certain that there's a genetic component to DS's struggles. I think he's genetically wired for OCD, and all it took was a "trigger" to set it off. For some people, that trigger tends to be a traumatic event or a catastrophic illness. For DS, it was repeated strep.

My DS, now 14, received all of his standard immunization boosters before entering sixth grade. Let me say, though, that this was before a PANDAS diagnosis, and before the massive exacerbation that brought us to the PANDAS diagnosis. Also, his shots were administered a good 14 months before he "lost his mind," so I cannot connect the immunizations temporily with his PANDAS. That being said, if immune health is about "the total load" our kids are capable of withstanding, then everything we've given him from birth on may have contributed to his current condition, so I'm not ready to take anything off the table. If I had it to do over again, I think I would be much more judicious about it. If your DS has already had a chicken pox vaccine and been exposed, does he really need another vaccine now? I know chicken pox can have some major ramifications for adults, but if you could hold off until his immune system is more mature before "boostering" that, it would seem safer. As for the others, I'm told pertussis is "making a comeback," and I know meningitis is a concern among preteens and teens. I keep recalling what I heard Dr. Kenneth Bock say at the AO Conference last year: "I'm not anti-immunization. I'm for proper, appropriate and timely immunizations." In other words, maybe immunizations would be more beneficial and less toxic to our kids (mercury and thimerasol notwithstanding) if they were administered across a reasonable time frame, instead of having these massive doses lumped together because that's more "convenient" for the pharmaceutical industry and the administering doctors. At a minimum, in your shoes, I would make sure my DS was in good health before agreeing to any immunizations, and then I would probably advocate for taking it slow: one shot at a time, with plenty of time in between to make sure his immune system is not being sent into overdrive by them.

Hey Smarty -- I wish I had a magic formula for "managing" stuff like that, but really, all I can do at this point is commisserate. While we really don't have "tics" per se, DS definitely has some compulsions that, while slower and more controled than I think of in terms of a standard tic, are nonetheless physical, openly apparent movements that can interrupt and interfere with "business as usual." Some of them are receding as he heals from this most recent exacerbation, but some seem to be hanging on more tenaciously than usual. Also, with regard to your reference of Temple Grandin, DS also can display those "autistic" types of behaviors and processing, the more intense his exacerbation. Even 100% healthy, he's got a dose of Aspberger traits himself, despite a willingness to look people in the eye, great oratory skills in groups, etc. But he's generally only interested in what he's interested in, and if he's not interested in what you're interested in, he has no compunction against letting you know it! And his interests are intense and all-consuming. Stuff like that. Anyway, some of his physical compulsions also have sort of "autistic" feel about them; he knows he's doing them, he knows they look odd to the outside world, but he doesn't care enough to stop them. He doesn't care if his peers notice, or if everyone at the dinner table stops and stares while he does this pervasive one: passing his hands over each dish/object at his place setting, like he's "blessing" the fruit, the entree, his drink, etc., before he'll begin eating. It normally takes between 10 and 20 seconds, but they can seem like an eternity when you're at a restaurant! I think he's engaging in some OCD "magical thinking," telling himself that this behavior makes his meal safe to eat. I've tried to get through to him on a basic social/peer level: don't your friends think your doing that is odd? Doesn't it take up too much of your time during lunch at school? Wouldn't you rather not call attention to yourself like that at school? He doesn't care. The compulsion is just too strong, I suppose. Some of his lingering behaviors we have managed to talk him into less attention-grabbing substitutes; for instance, when he was working on a hard math problem, he had a tendency to start rocking in his chair (talk about classic autistic-type behavior!). Knowing how that reads to the outside world in general, whenever he'd start rocking, we'd give him one of those squishy stress balls to squeeze instead while he thought the problem through. Now he's taken to that behavior instead, and the rocking has pretty much stopped. But I can't think of an adequate substitute for the Food Blessing. So, I guess I could suggest substitution as a "management" technique. It's just that some things are hard to substitute.

I decided I could try to satisfy my own curiosity this time instead of sitting idly, waiting for one of you to point me in the right direction! Found a couple of interesting studies regarding EPA: EPA and Schizophrenia Chinese Study - EPA and Suicide Here's one on inhibitory effects of EPA; it's too scientifically dense for me, but as I understand it, EPA and other unsaturated fatty acids can impact a human's ability to synthesize other drugs. Maybe this would have something to do with why some kids tic more with it? Maybe somebody with more savvy can interpret. Inhibitory Impact of Fatty Acids Meanwhile, with respect to a DHA-rich supplementation, this study seems to suggest that DHA-rich supplementation was more beneficial than EPA-rich in terms of lowering inflammation. DHA Study And this one suggests that ADHD symptoms may be managed via DHA use. ADHD and DHA Okay, now I'm more confused than I was when I started! Maybe at our next need to restock, I should switch up the EPA:DHA ratio and see what happens?

I'm curious about this also and look forward to all the responses. There's been a lot of previous discussion on the forum on this topic, too, but some things remain unclear to me. We use Norwegian Gold, Super Critical Omega which is coated to prevent "fish burps" and has the 7:1 EPA:DHA ratio that was recommended here many moons ago as being an optimum ratio for anti-inflammatory properties and brain function. I haven't been able to find any research to support that contention, I'll admit, and I know I've seen a contrary opinion, also: that a higher DHA as opposed to EPA is desirable. I'd love to hear more about that. The 7:1 ratio is rather hard to find (this is the only brand and formula that I could find locally). Ultimately, I've used this particular supplement consistently, and DS seems to tolerate it well; he gets one capsule in the morning and another with dinner, and they're 1,000 mg. each. The only thing that I've read that seems to be consistently upheld and mirrors our experience is that you want a formula that contains Omegas 3 and 9 but no 6; I guess Omega 6 is featured in other fatty acid supplements (like flax seed oil) and is pro-, as opposed to anti-, inflammatory. Since flax seed oil tends to be more affordable, I had tried that for a few weeks early into DS's PANDAS treatment. He seemed to decline pretty dramatically during that period, so I switched back to the fish oil. One important note, though, is that my DS does not have tics . . . never really has, except during very extreme exacerbation. I, too, have read that fish oil can make tics worse in some kids.

Thanks! Interesting. If only it weren't likely to be another decade before they apply what they learn from this mouse model to humans!

Way cool, thanks!

Yes and Yes DS14 has lately complained that I'm "the hardest of everyone" on him and his OCD. I know my fuse has gotten shorter each backslide he's suffered. But, to be fair, my jubilation at his gains and recoveries are equally "lopsided," so I guess, in the end, they all balance out. And as the air gets warmer and the sun shines brighter, yes, DS definitely seems to feel better. Is it because he's no longer cooped up inside with a bunch of other kids, sharing germs? Is it because, even though we supplement with Vitamin D, the "natural" stuff is always better? Who knows! Just thanking the Universe for all blessings, however small!

No, we really don't have a timeframe, and we've finally found a pediatrician who professes that he will keep our DS on them as long as he appears to benefit from them, i.e., need them. Since rheumatic fever patients (another strep autoimmune malady) tend to remain on antibiotics into young adulthood, I suppose that is a possibility. I'm developing a hunch that, in our case at least, we need to get through the "dark side of puberty" before his immune system will effectively settle down sufficiently on its own; he's 14 now. That's not based on anything documented, though. I know that azith is a macrolide and penicillin and its derivitives (amox, augmentin) are beta-lactams (thought to perhaps contribute to glutamate modulation, but still only in the research stage), but I'm far from an expert. Wikipedia is actually pretty helpful in terms of a primer on the classes of abx; here's a link: Classes of Abx Good luck to you!

I don't have a "scientific" answer, but basically, while on abx, my DS will still, when exposed to strep by a classmate or a family member, "respond" by mounting increased antibodies; we've documented that phenomenon through ASO and AntiDnase-B testing. The abx effectively prevent him from getting an "active" infection as a result of the exposure, but because he's essentially "allergic" to strep, even exposure drives the antibody response.

As Karen's already said, I don't think anyone knows the definitive answer to that question. Perhaps if they did, there'd be considerably less guesswork in terms of PANDAS treatment protocols. Yes, some abx are thought to be anti-inflammatory (predominantly macrolides). But another class (beta-lactams) are thought to have an entirely different beneficial component to them as glutamate modulators. As glutamate is thought to be a component in OCD behaviors, it's possible the abx are assisting in that respect. Our DS is one of those kids who, like Sammy, backslides every time we decrease, let alone cease, his Augmentin XR. We're not entirely certain why, but as his behavior set is nearly entirely OCD-related, we're increasingly considering the whole glutamate component of the puzzle. But it's possible that he's more easily re-exposed to strep (his particular nemisis) when he's less protected in that way as well. I am all for "natural" approaches to medical concerns, and our son has been on a steady regimen of curcumin, quercitin and fish oil -- all anti-inflammatory -- since our PANDAS odyssey began 2 years ago. Unfortunately, I haven't seen any of these have as much efficacy as the abx in terms of assisting our DS. The puzzle continues . . . . .

Our DS has been on abx for almost 2 years solid now. His last liver function test was about 6 months ago, and it came back normal. His pediatrician has said that she has no concerns about negative impacts by the abx on the liver given as, otherwise, his health is good. She actually discouraged more frequent testing, saying it was "unnecessary." I suppose if the whites of his eyes ever show a yellow caste, or his skin looks sallow, I'll get pushier about it.

Absolutely! That's one of the reasons why, I think, some of our kids get mislabeled as "behavior problems" because they are able to overcome some behaviors part of the time, and others other times. So the parents and the school find themselves thinking, "Well then, if he can control his behavior in this instance, why can't he control it in that instance?" Or, "If he was in control of himself yesterday, why is today such a struggle? He must be doing this purposefully!" My son's case worker at school gave us a great analogy: It's like a glass of water. All day long, every time your DS has an impulse to perform a ritual or act on a compulsion, he has to try and squelch it or hide it for the sake of not calling unwanted attention to himself in front of his peers. The impulse to "be normal" is almost stronger than the impulse to follow through with the compulsion. But each time he presses down on the anxiety in order to "hide" or forego his compulsion, another few drops of water get added to the glass. By the end of the school day, depending on his triggers and his overall state of health, his glass may have reached the topping-over point, in which case, once he gets home (or maybe even into the car, for the ride home from school), the "water" comes spilling over the sides of the glass, and the family ends up getting soaked while the school was spared the flood. The same could explain why he can hold it together or "corner off" some of the behavior when a neighbor visits, or when he goes to Grandma's house for the afternoon. Plus, Home is supposed to be where it's safe, where you can let your hair down. So even if his glass hasn't reached the overflow point yet, he might be more inclined to let his compulsions overtake him more there, and in front of immediate family members, than he is in front of peers or other less-close adults. Doesn't make the compulsions or the behavior any less real or in need of being addressed, though. Unattended, especially when it comes to OCD rituals and compulsions, they can grow and start to convince the kid that they are more important than even peer acceptance, and then you're on a whole 'nother playing field!

I can also vouch for the fact that the behaviors can "morph" from exacerbation to exacerbation, especially the OCD behaviors. And those can even morph within a given exacerbation period. So if that's the sort of "cycling" you're referring to, I would think that it would not, by definition, discount PANDAS/PITANDS. My DS may present primarily with contamination OCD for a period; then the contamination will "step back," and he'll be left with "just right" and perfectionism, or scrupulosity. Then, a few weeks later, it will be more about thought rituals. And the "fears" seem to cycle almost continually; which one takes the front and center position seems to have more to do with external triggers (e.g., a health class focused upon human sexuality one week will trigger one fear, and then a social studies unit on racism the next week will trigger another fear) than it does DS's own psyche. I agree you need to aggressively pursue the correct medical treatment for your DS. That being said, if you haven't already, you might also want to consult with a psychologist or psychiatrist who's well-acquainted with OCD and anxiety, ideally along with PANDAS. Perhaps that professional could better examine and offer an opinion as to the atypicality of the "cycling" and other related behaviors. That could then be added to the medical picture in formulating the best treatment protocol going forward.

Hi DCMom -- Our middle school doesn't call its program "honors," but it does have "advanced" math, as well as a "gifted" pull-out program. Like your DD, our DS, out of exacerbation, displays great intellectual abilities and a grasp of complex ideas. Even in exacerbation, as I think you're indicating your DD does, as well, when he can move past the OCD doubt and perfectionism, his intelligence is on bright display. And, yes, these kids seem to have a great work ethic and a drive to be seen by their teachers and their classmates as bright, capable and "good." One of the best ever 504/IEP accommodations we were able to get into writing for our DS, thanks to his gifted teacher, reads as follows: "Assignments modified for length, not for content." I.e., because he's capable of understanding at a certain level, just because his output may be slower or more restrained due to OCD, he's not to be penalized for it. He's only worse when he's not challenged, because then he really thinks, "What's the point?" and has trouble being motivated to push past the doubt and perfectionism in order to demonstrate his grasp of the material. I would push for the honors classes or whatever level your DD is intellectually capable of undertaking, and then continue to expect that assignments, assessments, etc. be properly modified for her. She shouldn't be bored and/or held back because of her homebound status or any other condition. She's entitled to be engaged and challenged, to have her mind and perspectives broadened, no matter where she's undertaking the work or whether or not she can complete 5 questions correctly versus 10 in a given time period.

Man, every time I read a post like this, I am again struck by how dramatically similar our "unique" kids can be! Bill, I think you're raising MY son! Good luck with that! I do think the balance of accommodating versus pushing back on the OCD is a delicate one. Initially, during this most recent flare-up, we were pushing back really hard, and just about every single behavior. But it just seemed to make things worse to a certain degree. Then we started thinking about some of the information/theories floating around about how stress/anxiety may open the BBB and allow even more of those nasty antibodies access to the basal ganglia, and our pushing back on everything was adding to his stress, and keeping the unhealthy cycle going. So we've been picking our battles some, too. But on the "main" issues for him . . . the ones that really cost him what he wants most, TIME . . . we've decided to let him experience that price being paid. And again, like you said, what exactly the formula is . . . time? abx? SSRIs? combination? . . . we don't know, but he's getting better, too. We had the "surgeon's hands" behavior for a while, too; I took to calling him "Dr. ____" when I'd catch him walking around like that. All of his contamination issues seem to have been successfully dismissed though now (knock on wood). Our DS's main issues are locked in with the bathroom tasks, too. And like your DS, we went through a period where his dad had to help him shower. Or else he'd stand in the stream of water for over an hour, doing absolutely nothing. Just locked up. But that's gotten better, too. We've used some of the collaborative problem-solving techniques in "The Explosive Child," he's gotten further away from his re-exposure to strep, he's doing his ERP therapy and homework, and he's taking his meds. So now he showers himself again, brushes his own teeth again. We still use timers to expedite these tasks . . . at least they remind him that time is passing and he's in danger of losing his "free time" and, instead, having to go straight from his shower to bed. Glad to hear your DS is getting better too, Bill. One day at a time!