MomWithOCDSon

Tantrums -- What if it's not an exclusive answer either way? What if 1) your kid is genetically predisposed to TS or OCD and then 2) that genetic predisposition is triggered by something? Maybe an infection? Listening to Dr. Kenneth Boch talk about autism and how our kids become genetically susceptible to environmental toxins because their immune systems have become compromised -- sometimes in utero and sometimes after birth -- and how this can lead them to be "genetically prediposed" to immune modulation issues, etc. . . . well, that combined with all the PANDAS research and personal experience has really gotten me thinking. In our case, we contend mostly with OCD. If you read and/or watch any of the popular "OCD shows" on TV these days, you'll hear people recall that their OCD was triggered by some traumatic event . . . death of a loved one, for instance. But in our DS's case, there's been no emotional trauma at all; we've not lost anyone close to him, not even changed homes or school districts or anything. I can see the genetic predisposition to OCD on both sides of our families, though no one has it to the degree my DS has manifested it. So what triggered it, and what made it grow to such mammoth proportions over time? He's tested with high strep titers on two documented occasions, so I feel as though we have our answer. So, how are we treating it? We're hitting with all weapons. Abx, I feel certain, put him in the best spot he's been in since his OCD began to rage just over a year ago. But it hasn't brought him completely around, so we're using therapy, some supplements and even a low-dose SSRI to finish the job. That won't be the answer for everyone, obviously, but it does seem to be working for us. Just a few thoughts . . . .

We've not tried SamE, but we have had some success with N-acetylcystein (NAC) and inositol, both available at the health food or vitamin stores.

Having been there ourselves last year, I can totally empathize with your situation! We had very similar issues and symptoms of refusal. But, in the end, it all boiled down to anxiety. And, unfortunately, the more we let him stay home, the worse things got. I do believe that he almost literally made himself "sick" with the anxiety of being expected to go to school: the churning stomach, the high-alert "fight or flight" reflexes all kicked into high gear. Of course he genuinely felt horrible! And, in our case, it didn't seem to matter that he liked some of his teachers, enjoyed the subjects, had some friends he wouldn't be seeing at all if not for school; the anxiety of contending with school itself was negative enough in his mind to outweigh all of those positives. We home-schooled for about 6 weeks while we got him on abx and finished an IEP process at the school, and he willingly kept up with classwork and homework at home. He just didn't want to attend school. In our case, I'm convinced the abx made it possible for us to get him back into school, but it was still tough going. Yes, I think an IEP would be very helpful for you, as being classified legally under the Special Education department covers your child for excessive absences (as in, no negative repercussions there) and could also provide you with home-based schooling, though that's typically limited to, I think, one hour per day, provided by the school and its usually after hours by a teacher who's available to provide the service on a daily basis. You might also try getting her back into school gradually. Our DS is older, so he has specific class periods and changes of classes. We started returning him to school one class at a time, beginning with his favorite class in the afternoon, after lunch. Then we gradually (every 10 days to 2 weeks) added another class and another until he was there all afternoon. Then we began adding to the other end of the day until he was in school all day again; it took up about 3 months and LOTS of help via his IEP and school caseworker, but it worked. Good luck! I know how horrible it feels (we still have an occassional day where DS will start angling for a day out because his "stomach hurts" or something along those lines), but now he knows 1) school is a "non-negotiable," and 2) he has a sytem and people in place at school to help him if he needs a breather or a safe haven, other than his house.

I totally agree. Curiosity is natural, and maybe it will have a "half-life" of 2 or 3 days before a curious child will move on to something else of interest. But fixation could be indicative of some OCD in the mix.

Well, I must say the show has been interesting, to me, at least. But I will say that it has been hard to watch without screaming at the screen, "Check for infection! Check for infection!" What was an eye-opener for me were the commonalities between these kids diagnosed with Tourettes and so many of the behaviors I see in my son whom I've generally understood to manifest 99.9% OCD. I also didn't realize that physicians seem to think that "rages" can be an inherent part of TS. Really? Or is that the PANDAS surfacing? Finally, one boy (10 years old) wound up having Deep Brain Stimulation surgery because his TS was so severe; the DBS significantly reduced his tics. The doctor they interviewed for the documentary is a Dr. Cathy Budman. Anyone know of her? Maybe she needs to get a few PANDAS letters!

That's an interesting thought . . . the excess stomach acid. My DS has always LOVED pasta with tomato sauce and pizza, but, especially when the exacerbation was at its height, he got concerned that eating either would "bother his stomach" and he took to asking if he could have a Tums before we even sat down to a dinner with either of those on the menu! Doesn't anxiety churn up stomach acid? Maybe that's why PANDAS seems to bring it up as an issue, too. But I'm curious about Meg's ulcers. I thought that it's now known that ulcers are caused by bacteria, rather than by "stress" or even excess acid?! Or, like most things in life, is it actually a combination or "perfect storm" of conditions?

Yes! So glad you brought this up! We are only just beginning to recognize a pattern with our DS related to how long he's gone without food! Is it blood sugar, you think? He is at his most vulnerable when he's said, "I'm hungry," but dinner is another 15 or 20 minutes from being ready. Always needs a snack when he gets home from school, too, or homework is an absolute "no go." We've taken to keeping Cliff bars around!

Oh Emerson! That is truly unbelievable! ALL those symptoms, all those indicators, and nobody to pay attention or listen! Why were you left in the dark? As hard as it probably is to hear it, my guess is, because you were/are "a child." Unfortunately, when it comes to medical issues, emotional and intellectual maturity don't count for much. Have you asked your mom if she recalls any of these issues or "diagnoses" (or lack thereof!)?! But like WorriedDad has already so aptly said: Knowledge is power! Now you have this incredible history in your hand, no one can blow you off again! This is delayed victory! Now go for it! Use that anger and frustration and the energy it stirs up and move forward, toward health! We'll all cheer you on!

Oh Smarty, we have SO lived that scene over and over again in our house! It would be funny if it didn't eat up massive amounts of everyone's time . . . not just DS's. In our experience, it's OCD, all right. And it's probably born of a combination of your DS's natural intellect and his "just right" OCD; he's got enough of both operating to where some of the behavior and rationalization can actually sort of mask itself as "normal childhood defiance," but not being able to 100% control time and how it's arranged and how it's spent can be a MAJOR anxiety trigger for some kids . . . it certainly has been for ours. In the height of an OCD period, our DS seems to think that the clock will stand still for him; this has not changed between age 6 and age 13. Even when we remind him repeatedly that his meltdown or his arguing or his avoiding is just eating up time itself and that "Time waits for no man," he cannot seem to help himself. The only thing that's changed in that scenario over the years is the strength and savvy of his debating skills. The boy can now debate the ears off a rabbit, I kid you not! Then, of course, he becomes upset because we do not give in to him so he runs out of time one way or another, and bedtime for us is immovable because the one thing we don't need to add to the mix is lack of sleep! So he comes to his "regular senses" out of his "OCD senses" too little and too late sometimes, only to realize that now he's got absolutely no time left for playing or reading or whatever before bed. Age can be a factor in this; he really may be too young to fully grasp the consequences. But you might try a few things and see how he responds. 1) When he begins to argue or try to bargain with you, take out a stop watch or a timer and keep track of how much time he spends indulging in that activity. Make sure he knows you're keeping track, and if he keeps dragging it out, give him periodic notices: "Wow! 5 minutes has already gone by! You could've had your teeth brushed by now!" Once the meltdown or arguement has drawn to a close, let him know how much time the whole episode took and try equating it to something that would be meaningful to him, like "You could've watched an entire 'Mythbusters' episode in the time it took us to get through this! Maybe you can make a different choice next time." I can't lead you down a primrose path and tell you that this has any kind of immediate, magical impact on their behavior or perspective, but it does seem to have given him a foundation over time. Now that he's better, he'll actually stop himself mid-debate and say, "I'm just gonna get this over with so then I can go play before bed." 2) We're learning increasingly not to engage in arguments, debates or negotiations with our DS's OCD; in other words, when it's clear that he's operating from that "side of his brain," we try to disengage. So long as he's not harming himself or one of us, he can go in his room and melt down and waste as much time as he likes, but we're not giving up the next hour of OUR lives to the OCD. We're going to continue to do whatever (watch TV, read the forum, etc.), and when his time's up because he has to take a shower or go to bed or whatever, then time's up. Generally, not receiving input or "food" from us to keep the meltdown or debate going, he tends to wind down much faster. In this way, too, the OCD behavior looks more like a typical kid's behavior in which some of the tantrums appear to be bids for attention. Overall, an ability to literally control time has almost always been a major OCD trigger for our DS, perhaps as a result of his struggles to complete tasks in the alloted time while OCD thoughts swirl around in his head.

But if PANDAS is about the antibodies/titers and the inflammation they cause, then it seems that, at least in some cases, it doesn't matter whether there's an active infection or not, right? If merely being exposed can cause one's titers to rise, irrespective of infection, then the auto-immune response/inflammation is likely to continue to be an issue nonetheless, right?

Hey WD -- I am far from expert on this topic, so I'll look forward to seeing some of the others chime in. I will say, though, that more than one doctor has told us that it isn't the actual numbers regarding titers, but the direction. That some people have higher titers almost permanently than a lab range, but that doesn't necessarily translate to any existing illness, carrier state or anything else. So, does that also mean that, if it's "the norm" among your family, that your PANDA won't react as though he's been exposed to strep? I'm still trying to sort out a similar conundrum on our end so, not to hijack, but hoping responders to you (and maybe you yourself) have a thought. Our DS13's titers recently increased, even though he's on the XR, still full strength, twice daily. So, we thought he was re-exposed, and we wanted him tested for a live strep infection. To which the pediatrician responds, well, he may still respond to exposure by having an increase in titers, but he's not going to actually "get strep" because he's on the Augmentin. Only thing is, my DS NEVER had an active strep infection to begin with, so if his titers are still going to rise, with or without the XR, what's up with that?!?!

I'm pretty sure we're talking about the same thing! The n-acetycysteine (or NAC) we get at The Vitamin Shoppe is 100% NAC in 500 mg. gelcaps. And yes, it smells like an open sewer when you open the bottle! But interestingly enough, there's no taste, and the capsules in the open air don't seem to have a dramatic odor, either. I would have to assume that, by prescription, you're dealing with a substantially heftier concentration of the stuff or something?

The instructions for the bentonite clay suggest that it be given on an empty stomach. So we're giving it about 20-30 minutes before breakfast. Some probiotics are okay to give with abx because the abx can't kill the organisms. Acidolpholus (common in yogurt and kefir, as well as the popular "Pearls" probiotic supplement) is a culture killed by most abx. Sach boulardis, lactobillus, bifobacterium, etc., meanwhile, generally survive abx. That's why we mix it up as much as we do, figuring that some organisms will fare well while others may come to a premature end before re-establishing in the gut.

Nope, more the opposite. The dreaded "D" word.

Thanks. Yes, we're looking into that. Unfortunately, the psych has now gotten "cool feet," sensing rightly that, if pharmacies can't readily fill scripts for 50 mg. orders, then this use of the drug isn't exactly "common." On top of which, I guess he reached out to one of the initial studies authors (Raush) whom he happens to know, and this guy's reaction was like, "No, you shouldn't be prescribing this! This is a serious drug." etc. Also, that first study -- the Wilhelm, Raush, et.al. study -- was done on adults, so the translation to using it with kids set off alarms for both Raush and our psych. Neither one of them is familiar with Storch's study. So, we're trying to fill in those gaps now and put our psych in touch with Storch. And/or find another psych affiliated with a teaching hospital who might be more "up-to-date" on the research. Funny how nobody wants to be the first in the pool.

"Home bound status" means that, usually through an Individual Education Program (IEP), a student has been granted a "leave of absence" in essence, to conduct their studies at home because of an illness. If you're "home bound" due to a recognized illness, you can get tutoring services through the school, and your absences from the actual school building do not count against you or endanger your opportunity to move forward with your class when you're ready to return. ERP therapy is Exposure Response Prevention therapy, commonly used to combat OCD. Basically, you are exposed to your fear and prevented from undertaking your typical, OCD response to that fear (such as performing a ritual to manage the anxiety). By doing that over and over again, you become more "habitualized" or "normalized" to that which you fear, and you eventually no longer feel the need to perform a ritual in response to being exposed to it. This breaks the cycle and makes the OCD take a step down, basically.

Technically, no. My layman's understanding, however, is that as the antibiotics go to work in your system, they also tend to kill off much of the gut flora typically in place. I take that dead flora as the "die-off." There're also some instances in which strep and other bacterial illnesses actually reside in the gut, so presumably there would be die-off from the antibiotic's work against those agents, as well. Depending on your particular chemistry and body make-up, it can be difficult for the gut to rid itself of all this detritus, particularly if you're not partaking in a high-fiber diet. I would think kids, especially, might be more prone to holding onto some gut detritus . . . at least mine would be . . . because "high fiber" is like a dirty phrase to him. We eat only whole-grain breads and he's pretty good about eating fresh fruit, but he's not big on greens or cereals, let alone bran muffins or bran cereal. So, we decided to try the bentonite clay, and it appears to have worked for us. There was an immediate shift in his gut response, and quite honestly, his attitude, within the first week or so of using it.

Thanks for the link! There are a couple of other studies available on line concerning d-cycloserine (DCS), too . . . a meta-analysis by Dr. Tolin, studies by Drs. Wilhelm, Storch, etc. I first learned about DCS at the IOCDF conference this past summer; Dr. Eric Storch mentioned it in one of the panel discussions on OCD and comorbid conditions. I guess his group down in Florida only very recently completed a DCS/CBT study with, I think, 32 kids and found that DCS significantly positively impacted the kids' ability to implement tools and techniques they're taught in therapy! I guess the paper has passed peer review and is in publication now. We actually were successful in presenting the research to our psych and he was willing to let us try DCS in combination with therapy with our DS13. Problem is, the dosage is weight-based, and for kids over 50 kilos, the recommended amount is only 50 mg. But the standard pharmacy only produces DCS in 200 mg. tablets because this was the dosage originally formulated back in the 1940s for tuberculosis! It appears the only way you can use this drug currently for the new protocol is to acquire from a hospital pharmacy willing to reformulate it for this particular use. I find this whole thing fascinating, frankly. And the glutamate connection, once again, rearing its head makes me hopeful that all of this research is going to one day meld into a meaningful treatment protocol for all the PANDAS/OCD patients in the future.

How are you today, Emerson? Making it through the school day? So sorry you were left all alone to contend with that situation last night; it's the furthest thing from fair. You mentioned in your post that, usually, staying awake is a problem for you. You mentioned passing out, even. What does your neurologist say about that? Or any of the doctors you've consulted, for that matter? Do you feel an overwhelming desire to sleep, is that how it begins? I don't know if you might already be aware, but there's a strep-narcolepsy connection, too; they found that a strong percentage of people with narcolepsy also have high strep titers. Plus, though I'd always thought that narcolepsy was this complete, weird "collapse" into sleep, that actually is what's called narcolepsy with cataplexy; a more common form of narcolepsy, especially early onset, is marked by an intense desire to sleep and they call it Excessive Daytime Sleepiness (EDT). Just wondering if your symptoms fit that pattern 'cause, if they do, there might be another road to go down to better regulate your sleeping pattern so you're not awake when you shouldn't be and not sleeping when you shouldn't be!

As trich is believed to be related to/a subset of OCD, it certainly seems yours could be strep related. Having dealt with it for as many years as you have, however, I wouldn't want to tell you that taking an antibiotic may completely eliminate your hair-pulling behaviors. First, as someone else said, if your immune system is now out of whack, another infection could trigger you, not just strep. Secondly, OCD behaviors can become "learned," or create some significant neural pathways of their own over time, so in addition to medical treatment (possibly antibiotics, anti-inflammatories, supplements), you might want to look into Exposure Response Prevention (ERP) and/or Cognitive Behavior Therapy (CBT) to help retrain your brain in terms of how it responds to stress/anxiety. As for NAC, I'm puzzled about the whole mixing it in Coke thing. Never heard of that! We buy NAC at the Vitamin Shoppe, in 500 mg. capsules, completely over the counter. We take it like any other supplement. Am I missing something on my end?

How about they could become compassionate, articulate, ever-curious doctors who, in their "spare time," write eloquently about their experiences growing up with, and ultimately beating, PANDAS? I say, Shoot for the Moon! If you can get past PANDAS, you can do, be, ANYTHING! The sky is the limit!

We have DS13, 135 lbs. We give sach boulardis, PB8 (probiotic blend, no strep t. in it, though), and another probiotic blend (sometimes Norwegian Forumla, sometimes another brand) three times daily; total organism unit count is about 150 to 170 billion per day. For yeast die-off, etc., I would recommend trying bentonite clay. We saw a tremendously positive change in DS's digestion/gut once we began using it to help "sweep out" all that detritus. We only use every 2 to 3 days, one tablespoon of the clay (i's in a water suspension) to 3 tablespoons of juice; it doesn't change the flavor of the juice, just the texture a bit, so he doesn't mind it much. You're supposed to give on an empty stomach, so we do it first thing in the morning, 10 or 15 minutes before breakfast.

Thanks, everybody! Emerson, you really are inspirational, even more so to my DS13. You're so articulate and open, great gifts with which to roar into adulthood! And the sheer determination . . . it's got my DS going! He's sensing an older, wiser kindred spirit, which is always a good thing! Thanks! WorriedDad, we continue to be encouraged and inspired by your family's journey. Next month, we'll have been taking the XR for a full year, and I have in hand a prescription to take us another couple of months past that point if necessary. I still wish I knew exactly what mechanism in the stuff makes the difference, but like you, I'm just grateful we've had access to it as long and as consistently as we have. Our brain fog still creeps in now and again, though, like I said, predominantly during "high anxiety" moments, so while I continue to believe, like you, that long-term XR may be an ultimate key, sometimes we need more help with the "here and now." Our DS continues to take a non-stimulant ADHD med (Intuniv rather than Straterra), and while we think it has helped with school focus, it doesn't entirely offset the "anxiety fog." Our boy still needs a quiet, non-distracting environment for getting through homework, but at least he's getting through it! Maybe one day our DS will be as easy-going and non-chalant about it as yours! Keep bringing on the inspirational, triumphant stories! We're soaking 'em up! BP3 and Brain Gym are entirely new to me, but I'm very interested! Thanks! Running off right now to Google . . . .

Many of us here have noted a "cognitive fog" in our children which, especially at school age, can be one of the most debilitating symptoms. My DS13 has had it off and on for the last year and, without any prompting from me, has himself termed it "fogginess" or "cloudiness" with his thinking when it occurs. At a therapy session with the ERP therapist a few weeks back, DS mentioned the foginess and how it was interfering with his remembering some instructions, task sequences, etc. The therapist nodded and listened, and I just had to pipe in at that point. I asked him, Is this "cognitive fog" something you see much of in OCD kids? Or is it unusual? (This same therapist has witnessed a few other behaviors in DS that he acknowledges are not common in his experience with OCD sufferers, and he's always been upfront when something "sticks out.") His answer was that it isn't very common to OCD, but that it is common to general anxiety. Being as he is on staff with the Anxiety & Agoraphobia Treatment Center, I figure he should know anxiety when he sees it! Anyway, he went on to explain that when a person is feeling full-on anxiety, it tends to take over, and thinking becomes secondary to the brain's "fight or flight" impulses. So the fog sets in. Looking back on DS's moments of "fog," I do believe I see just a general sense of anxiety at play there; he's not undertaking rituals or melting down emotionally, he's just having trouble sorting his thoughts because what he's trying to think through (generally school, decisions, choices)is anxiety producing. I'd really like to hear about your experiences with this "cognitive fog." Maybe we can find some commonality and some effective ways of banishing it, once and for all! Thanks!

The behaviors in our household are strictly OCD, so the Tourettes doesn't hit as close to home for us as it might for some of you. I plan to watch, at least some of it, if for no other reason than to perhaps catch an allusion to PANDAS or some other infectious agent trigger. I'll post afterward if there's anything worth telling.