MomWithOCDSon

Hi! I definitely think you can and should do ERP at home! Even with a great, qualified therapist on board, the truth of it is that your kid is with you far more than she is anyone else, and a one-hour session, even if it were a couple of days each week, is not going to get all the ERP practice in she needs to successfully "shrink the OCD." As for how many OCD "items" to take on at once, and/or how quickly you should introduce new ERP exercises, I really think it depends on the kid and their overall state of health at the time. Some of the items you noted can be done with what I think of as "natural exposures" on a daily basis . . . leaving breakfast crumbs on the table until dinner so that she has to deal with a less-than-pristine setting at dinner, giving her an age-appropriate responsibility with respect to her baby sister so that she becomes habituated to baby drool and other baby "messes," coming up with a reward chart or system to encourage her to wear those "not just right" underwear for 10 minutes before switching them out if she still can't deal with it, and stretching that 10 minutes out to 15, then 20, and more and more minutes until, again, the exposure desensitizes her to this particular form of OCD. And I would things could be taken on more or less simultaneously because they're in different aspects of her life and her day. But you can let her be your guide; if she seems overwhelmed by just one of the exercises, then maybe just stick with it until she's mastered it, and then move on. Finally, though, when it comes to whether or not to engage a therapist as well, I would also add a resounding "Yes!" though you do need to find the right one. Truth is, a good therapist can help your DD and the whole family in a multitude of ways. He/she can give you support when things stall out or you're struggling with a particular behavior. He can provide that additional measure of discipline and accountability for your DD that is sometimes hard to enforce within family members alone. He can help brainstorm ideas and exercises for maybe the "stickier" behaviors. Sounds like you're on the right track! Good goin'!

First time I've seen it . . . very interesting, and good to see, as well.

Bully for you! Way back on his original birthday, DS was put in neonatal ICU because he supposedly had low blood sugar (he was a full 12.5 pounds at birth, and I was actually induced three days early on the advice of my OBGYN because he was concerned that the baby was getting too big -- as a result, the entire hospital staff kept referring to him as a "premature delivery"! By 3 stinking days! Really rattled my cage!). Anyway, after we came home, we received a copy of a bill that had been submitted to our insurance company which included a charge of over $300 to a neonatologist who supposedly saw my son but never bothered to report to DH or me, or even our pediatrician, who also had privileges at the same hospital! I was furious and told the insurance company I wanted to dispute the charge. The insurance company went and paid the bill anyway. Honestly, this system is so corrupt, so indefensible . . . how can we even begin to believe that it's "fixable"?!?!

Just to echo here . . . eating disorders do occur in PANDAS cases, and comorbidity of behaviors such as OCD and ED is also a common "tell" for PANDAS/PANS cases. So, in addition to therapy, I would suggest getting a full physical, including an immune blood panel that tests for abnormalities in immune function and increases in antibody levels for bacteria such as strep and myco pneumonia. It would be a shame to go down the long, winding and potentially unsuccesful path of solely psychiatric interventions (medications) when it may be that medical treatment (such as antibiotics or steroids) could provide real, lasting relief for your friend. Good luck!

Smarty -- I really appreciate that explanation and the language choices, especially, because I think there are nuances here that, sometimes, even a school's SPED staff does not fully grasp. Not to mention, we've been through both the 504 and IEP process now, and that's the first time anyone's ever spelled it out that way for me! I'll add, too, that one of the reasons we decided to go for an IEP at my DS's Exacerbation To End All Exacerbations, during 7th grade, was because, unlike the 504, the IEP gave him access to school personnel, people on site, who's jobs it was to help him navigate the challenges he was facing while the anxiety and OCD were at their height. So, for the first time, he had a case manager who was wholly invested in helping him get through a difficult school day. And he got weekly sessions with both a school social worker and a school psychologist which, in addition to giving him an opportunity to sort out and receive support for things that might happen during the average school day, offered him yet two more people on campus with whom he built strong, positive relationships and mutual trust. Obviously, I'm very pro-IEP, maybe especially for older kids who, even without PANDAS, are likely contending with increasing pressures and challenges in the academic environment given the increase in hormones, social pressures, heftier academic expectations, etc. The 504 and what it had to offer served my DS well through grammar school, but middle school and high school have been whole other worlds!

My son has been taking NAC for a couple of years now and, yes, we believe it helps with his OCD. There've been two trials now at Yale for using NAC to treat both treatment-refractory OCD and pediatric OCD. DH and I also started taking it this winter when we read some research declaring its efficacy in warding off and/or diminishing the impacts of the flu. Knock on wood, none of us has had the flu shot this year, nor has any of us come down with the flu, either! I love NAC! There are many reports, however, of it being problematic for some. Perhaps its a herxing reaction or a mis-allignment between NAC's characteristics and a "broken" methylation cycle; we've discussed both possibilities but have yet to see any definitive "answer."

DS, a week away from his 16th birthday, penned an email tonight to a younger boy who's suffering from PANDAS. He was responding, in particular, to this other boy's anxiety over school, perfectionism and related issues. When he'd finished his email, he came upstairs to share with me and DH the ideas he'd shared, and a key insight was born from this experience. He reminded me and his dad of how, when he starts feeling overwhelmed and complaining of feeling "stressed," DH and I frequently advise him to just slow down, do some deep breathing, "re-LAX," we say. DS finally articulated that, for him, this never works. When he forcibly slows his body down while his mind is spinning, the disparity between his "stiller" body and his racing brain is emphasized, and the anxiety builds rather than subsides. So if he's sitting, breathing deeply, etc. because this is the "cure" that's been described, rather than walking, pacing, maybe even sometimes rapidly bouncing or juggling a ball, etc., he feels MORE at odds with himself rather than LESS. Now that he's said it out loud, it makes sense to me, but that concept completely escaped me before. So his advice to this other boy was that, when the anxiety gets to him, to DO something . . . turn his brain to something productive and focus-worthy, even if he doesn't finish whatever it is he starts. That in the mere act of corralling his racing brain with activity, rather than trying to enforce an artificial "stillness," the anxiety will dissipate. I thought that was worth sharing.

Haven't had time to read it yet, but for anyone who's a fan of Jon Stewart's "Daily Show" on Comedy Central, the author of this article is Jon's guest tonight (2/21) on the show.

Well, based on that experience, it seems worth a try! I still have a question, though. When I Google "acetyl-glutathione" I get a myriad of responses, many of which are actually n-acetylceisteine or NAC and not specifically identified as "acetyl-glutathione." So, are acetyl-glutatione and NAC the same supplement, or are they actually different compounds?

In the year or so we continually tried to cease the abx? Yes, though it wasn't an immediate return. I'd say it took up to 2 weeks or so to return to the "base line" where he'd been before we tried cutting back or ending.

Mama -- We do use it, and have been using it for a couple of years now. I'm also considering adding it to mine and DH's supplement regimen, though the caloric component is a little bit daunting. I will say, too, that I'm not sure we really use it in sufficient quantities to be therapeutic, but we're looking at it more as a neuroprotective supplement. I'll add, though, that there was a paper linked here on the forum a year or so ago specifically about coconut oil and Alzheimer's . . . about how only coconut oil, palm kernal oil and one other source (can't remember which one) provide Medium Chain Fatty Acids, which are essential for brain function and not heavily found in a standard western diet. This author, a female MD with a husband who developed Alzheimer's, started giving her husband coconut oil daily -- in fairly copious amounts, if I recall correctly -- and his dementia stopped its progression and, in some respects, even reversed. I gave my mom a copy of the paper (my dad has Alzheimer's), and she ran out and purchased coconut oil. She swears it's made a difference for him in terms of short-term memory, ability to maintain a conversation and a chain of thought, etc. So, I definitely think there's something to it!

Yes. We tried repeatedly for the first year or so following our PANDAS dx. Actually, to be honest, the first few times we didn't actually "wean" but just took DS off entirely when the prescription ran out. When that didn't work (he'd regress noticeably with respect to behavior by Day 8, like clockwork), we tried actually weaning by trimming the dosage over a few weeks' time. That didn't work either. Again, by Day 8, you knew he no longer had access to something in the abx that was helping him behaviorally. So, in the end, we left the abx in place for nearly 2 years. Then we weaned for the final time, very, very slowly: it took us about 3 months to go from 2,000 mg. XR a day to zero. We saw a behavioral blip or two, but he recovered himself fairly quickly, and we didn't look back. He's been abx-free for nearly 1.5 years now. To this day, I have no idea whether or not the super-slow weaning was the secret or if, after nearly 2 years, his immune system had finally successfully regulated and/or the last bits of the strep had been successfully eliminated.

As I was responding to another post regarding one of those "is this OCD?" moments, I started thinking about all the forms of OCD behaviors we've seen in our DS since he was first diagnosed at the age of 6. He's now just a week away from 16, and though we had a full 4 years without any noticable behaviors, and they've significantly decreased again since we found PANDAS, it's quite a cavalcade of behaviors and eccentricities we've seen over the years. So I thought I'd make a note of them here and invite others to chime in as well. Contamination, generally Perfectionism, generally Showering a certain way, in a certain order Using the bathroom at every transition of activity Lying in bed, listing "confessions" before he could settle down to sleep for the night Pacing in a circle before walking out the front door for school, dentist, etc. Scrutinizing silverware and place-setting before beginning to eat a meal Rebooting/restarting his computer, over and over again, until it "booted right" Showering immediately after getting home from school Changing clothes 2 or 3 times each day Saying everything that comes into his head, the minute it pops in there, afraid that if he tries to "hold onto it" and wait until the right time, because he'll forget it if he doesn't Being the penultimate "backseat driver," watching his dad's and my speed, cornering, stopping, passing like a hawk to make sure we're driving safely Erasing his homework repeatedly, afraid the writing wasn't well done or correct Reading and re-reading line after line in a book, trying to make sure he understood every word Rewinding television shows and/or movies, over and over again, to make sure he didn't miss anything or fail to understand it Fearing all things sexual and/or sensual, including all references on TV, in books, etc. Being rabidly anti-alcohol, to the extent that he once wanted to call the police rather than get in the car with his dad and me when we'd each had one glass of wine with dinner at a restaurant I'm sure others will come to mind over time. I'm just glad to say, now, that most of this is in our rear-view mirror!

Some of us have talked through this before in the past (keeping in mind I've been in and out of this forum for about 3 years now), so here are my impressions based on that participation and our personal experience with my DS. Some kids with PANDAS/PANS appear to have discernable immune deficiencies, while others (like my DS) appear to be hyper-immune. Those with deficiencies seem to fall both physically and mentally in the face of microbes and/or viruses, while those who are hyper-immune tend to react less with respect to physical responses but respond behaviorally, none-the-less. Many of the hyper-immune are also plagued by allergies, since that is, in and of itself, a hyper-immune response. We did not do IVIG, and I concur with your impression that, for some, it was "the bomb" that sent PANDAS packing, sometimes seemingly permanently, and other times, at least for an extended period, while, for others, it has been a less completely effective response. A couple of years ago, I posed a topic question with a poll, thinking that maybe IVIG was more effective for the immune-deficient than it was the hyper-immune, but the anecdotal response to that poll failed to bear that out. In listening to Dr. Kenneth Bock speak at an Autism One conference a couple of years ago, I was struck with the possibility that my DS's immune system may have been "compromised" even while in the womb, or potentially "pre-conception" by the state of my own body and its system. I don't say that as a martyr; it's just that contending with PANDAS tends to make one introspective. Once we decided to get pregnant and throughout my pregnancy, I was a model mommy-to-be -- no alcohol, no first- or second-hand smoke, limited fish (mercury), no meds, etc. But our knowledge of what's "good" and what's "bad" for our bodies and our environment continues to evolve, and I no doubt participated in something that was "less than good," even if it was beyond my understanding at the time. Plus, I had an updated German measles vaccine about 6 months prior to getting pregnant; my OBGYN told me to wait 3 months, and we waited 6, but still, what if that vaccine contributed to my baby's environment being less than ideal? On top of which, I was a hyper-immune child myself . . . I never had classic, physically-painful strep throat until I was an adult, though my sister had it constantly when we were growing up. So, genetically too, I may have given my kiddo more than his fair share of immunological challenges. Finally, I think, though I realize it opens up a whole 'nother Pandora's Box of research, reaction and reality, that, in the end, much of what may lie beneath our kids' health, their responses (or lack thereof) to various interventions, is likely to be about the mysterious Methylation Cycle and where and when something goes awry with the cycle and sets our kids (or us, for that matter) a bit akimbo. I am far from expert on the topic, but every time someone with more brains on the topic (like LLM) posts a fresh paper, article or metaphor on this topic, I have an "aha moment" about my son or myself. And I have begun to think that, if it's possible to fully understand and intervene and "correct" that process first, then it may be possible that we'll be able to land upon a clear treatment protocol that will be a more effective response across the board, rather than having all these "exceptions to the rule," and only the rare "rule" for whom a given treatment protocol is a lasting, 100% effective response. Just my thoughts . . . .

:wub: Back at you, 911RN! I am so grateful to you and everyone else who's helped us over the years, I'm rewarded to think that maybe I'm able to help someone in return. Your kind words are making me feel all warm and fuzzy! Thanks!

Maliee -- In short, the explanation is this: OCD is not rational. It doesn't follow any rational train of thought. Therefore, the person with severe contamination issues will, like your son, wash his hands until they bleed, but he will refuse to shower. Unfortunately, it will sometimes extend to such completely absurd behaviors/thoughts as fearing eating food at home prepared by a family member because that family member will contaminate the food, but being perfectly willing to graze at a buffet bar-style restaurant where the food is not only prepared but also "picked over" by half the human race. The nastiest, most insidious characteristic of OCD is that, because it wants to control the whole person, it will often render those things closest, safest, most "ordinary" and routine, as the things that should be most feared and/or avoided. So, sometimes family members themselves become "contaminated" as can ordinary, everyday places and tasks such as showering, sleeping, etc. When my son was at his sickest, showering was a horrifying process. Because our son had an OCD diagnosis a full 6 years before we discovered that PANDAS was behind his behavior, we had been fully trained and ensconced in the "world of OCD." So his therapists had taught us not to negotiate with the OCD, not to allow it to overtake him, his time, his life completely. So showering was a non-negotiable; we put our feet down and insisted it had to take place. But it was at times just short of a knock-down, drag-out brawl. My DS didn't want to shower because of the rituals that were required of him by the OCD during the process. So, once he was in the shower, he felt compelled to do things in just the "right" way, the "right" order. And, inevitably, it would somehow go "wrong" for him in some way, and then he would have to start all over again. And again. And again. At his sickest, he never felt he got the showering ritual "right," so his dad would eventually have to turn off the water and drag him out, physically, ending the process. On top of the drama and trauma of the rituals and the forced intervention of the ritual by us, my DS found it absolutely exhausting. So, he hated it. He feared it. And he loathed it. I'm betting your DS is going through something similar, and this lies behind his choices. If you don't already have an ERP therapist on board for your DS, I would suggest you try to find one. The therapy process will not only help him, but it will help you and the whole family in terms of contending with the OCD and supporting your DS rather than inadvertently aiding and abetting the OCD. There are also a number of very good books available, such as those by Dr. Aureen Wagner that can help you understand and give you tools and techniques for helping your DS at home.

If you're seeing ANY positive impact at all via abx, I think I would continue down the PANDAS/PANs path. My DS went untreated for more than 6 years (we think about 9 years, in truth), and though he responded well to abx, it has continued to be a long road. I don't know that anyone knows for sure, but it seems, experientially and anecdotally, that the longer the child suffers prior to finding treatment, the more protracted the healing trajectory may prove to be. In short, it seems to me, that there is much to be potentially gained and little to be lost in pursuing this avenue. You and your DS have already lost so much . . . so any steps in the right direction would be a blessing, no?

Unfortunately, I think this might be a little bit of snake-oil peddling. Some of what's marketed as acetyl-gluthione is actually n-acetylceisteine (NAC), which you'll find many threads about here. NAC is an amino acid which is a precursor to gluthione and is supposed to be helpful in helping you body increase the production of gluthione inside the body. Meanwhile, according to Wikipedia (and acknowledging that it doesn't know everything -- but there are some sources cited for this entry): Raising GSH levels through direct supplementation of glutathione is difficult. Research suggests that glutathione taken orally is not well absorbed across the gastrointestinal tract. In a study of acute oral administration of a very large dose (3 grams) of oral glutathione, Witschi and coworkers found "it is not possible to increase circulating glutathione to a clinically beneficial extent by the oral administration of a single dose of 3 g of glutathione."[26][27] However, it is possible to increase and maintain appropriate glutathione levels by increasing the daily consumption of cysteine-rich foods and/or supplements.[28] Calcitriol, the active metabolite of vitamin D synthesized in the kidney, increases glutathione levels in the brain and appears to be a catalyst for glutathione production.[29] In addition, plasma and liver GSH concentrations can be raised by administration of certain supplements that serve as GSH precursors. N-acetylcysteine, commonly referred to as NAC, is the most bioavailable precursor of glutathione.[30] Other supplements, including S-adenosylmethionine (SAMe)[31][32][33] and whey protein[34][35][36][37][38][39] have also been shown to increase glutathione content within the cell. So you might be better off going after one of the precursors -- NAC or SAMe, for example -- rather than supplementing something that doesn't very well survive our digestive processes.

No, our DS eats lots of cheese . . . probably a bit more than he should. Not all cheese contains strep thermopolis as a culture, and not every kid is sensitive to strep thermopolis even if it's in the cheese. I think Dr. T.'s advice is basically a suggestion that if you can, might be good to avoid because it might cause issues. My personal view is that my kid has enough struggles and things to deal with, and I'm unwilling to add that dietary restriction to his list, as well. I don't see him reacting to cheese, so we stick with it.

The biggest dent was made by the antibiotics (Augmentin XR), but he still struggled quite a bit at times. We do a low-dose SSRI (Zoloft) along with Lamictal, and because my DS has high histamine, we also do Pepcid and B6. Those, I think, have had the most impact on the anxiety.

We tried this for a bit with our teenage son (he was 12-13 at the time), and it really didn't touch his anxiety at the time. Have not tried it since as we've found some other successful interventions, and klonopin being a benzo and therefore having potential for addiction, we didn't want to use it if we didn't have to. I will say, however, that I have another adult family member who uses it occassionally, in a low dose and basically in the way in which some folks will use valium for some quick, anxiety-lowering impacts. So, I'm told he uses it maybe once a week, depending on what's happening in his household and/or on his job. He feels it's helpful.

Wish you were closer! We could leave your DS with my DS (weeks away from 16, in a good place right now, and certainly understands how PANDAs feels!), and then we could go together! So sorry! I know how you feel . . . We went for three years without any babysitters and had to resort to having our "dates" during the school day, while DS was safe and occupied! So I'd play hooky from work for a few hours, and self-employed DH would do te same, and we'd catch a matinee or have lunch at a nice restaurant. Then I'd have to hit the laptop and "telecommute" some work after DS went to bed to make up for the hooky! What we PANDAS parents resort to!

OCD is wicked, mischievous, insidious and, unfortunately, a Wiley shape-shifter. Because it is an anxiety-based behavioral manifestation, it tends to hone in on one's weak spots or Achilles heels. Your DS doesn't normally experience much, if any, anxiety, I'm guessing, when it comes to making decisions about wardrobe, food or play. So the OCD is not prone to settling in there. Rather, it's picking that spot, those situations in which your DS is less certain and exacerbating that vulnerability. My DS has experienced similar OCD presentations, so I do think that might be part of your puzzle.

We have found, over a period of about 3 years, that the two supplements excellent for my son's attention support are taurine and zinc. The zinc, especially, has been very beneficial, and there are some studies that back it up as a possible treatment for attention issues.

Very interesting! Now, wonder what the authors and researchers would make of a Test Warrior who is a Daily Worrier? That'd be my DS!