MomWithOCDSon

This forum has been of tremendous benefit in terms of information, varying perspectives, reflections and perceptions of various doctors and their protocols, etc. I wouldn't trade it for the world. But given as this is a developing field of endeavor for everyone involved . . . including the experts . . . aren't we all best served to apply our own particular brands of skepticism and questioning, admittedly to differing degrees, as we seek the most efficable treatment for our kids? And doesn't that inquisitive, intelligent approach to finding what's best for our kids include some open and honest discourse about new directions, findings, "paradigm shifts" and the like? Can't we do that without taking up . . . or being assigned . . . positions at one end of the pole or the other: snarling guard dog and startled bunny?

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG. And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

Smarty -- I think you're on to something that many of us have come to suspect as observant parents: that our kids are having an inflammatory response to SOMETHING, and that inflammatory response is causing most, if not all, of the behaviors. Unfortunately, though, it's an uphill battle with the medical community at large to leave the door so wide open as to suggest that a multitude of infectious agents may be at the root of the problem, even though the collective experience here would suggest that this is EXACTLY the truth! Despite Swedo's best efforts, PANDAS still solicits eye rolls in my large, metropolitan community, let alone if I were to suggest that they should check for and consider the whole laundry list of possibilities. Especially when they have on hand those ready-made labels with which to stick our kids: OCD, TS, ADHD, ASD, etc. Do we need a protocol that addresses ALL of the PITANDS? Absolutely! But we haven't even yet arrived at one that addresses the PANDAS subset! Hopefully that's coming soon here, and then we'll need to help drive research down the remainder of the list I suppose. It's funny . . . these are just observations. I've been active on this forum since October 2009. When I first peeked in here 11 months ago, I'd venture a guess that 95% of the talk here was of strep/PANDAS. In the months that followed, myco p. got an increasing amount of attention, largely contributing, I think, to the "PITANDS" expansion of the forum name last spring. Now, the other-potential-neuropsychiatric-behaviors-trigger seems to be shifting to lyme, and everyday there seem to be more and more families diving into that particular pool, seeking answers for their kids who have stalled out in terms of response to treatment for either the strep or myco p. components. Which makes sense to me if you're living in one of those tick-prone sectors of the country. But maybe it's a stretch if you're living in an urban area of Chicago or Phoenix and your idea of "outdoor activity" is shopping at an open-air mall?! We all want our kids well, so we all keep searching. And it's great when we're able to tap into physicians who'll take the journey with us, as you seem to have found. My fear, though, is that, if we want to be taken seriously by the medical community at large, we have to maintain some focus and drive research and response to that end. When you look at the history of mental illness, there's a long acceptance of infection leading to psychiatric symptoms and behaviors: syphillus, gonnorhea, UTI's, schizophrenia. So why should it be such a stretch for the standard Western medicine man to consider the possibility that all manner of bacterium could cause such results in modern times?! Answer: it shouldn't be, but it is. Theory as to why: because science has advanced in the ensuing decades, too, so it is now thought that we ought to be able to do better than merely hypothesize about it and wait and see if Grandpa loses his bearings with a UTI, you ought to be able to demonstrate it in the laboratory, replicate those results, record them, track them over time, etc. So what do we get for our advances in science and research? Greater cynicism! Aarrgghh!! Hopefully, Swedo and Cunningham are on their way to setting some of that cynicism aside, at least where strep's concerned. And finally, on the heels of Pandas_Chicago's recent topic post, and in observation of Sammy Maloney's four-year-long healing trajectory, as well as the experience of other folks here in the forum, I have to pose the following question: Whether strep or myco p. or lyme or what-have-you, is a key component to the healing plain old unadulterated TIME?!? Are we essentially rushing from one potential trigger to another, from one line of treatment to another, out of impatience, rather than science? More questions than answers, unfortunately, from where I sit.

Vickie -- Is that a pill/capsule supplement or a nasal spray? It would be convenient to have all of those in one dose, if sufficient. Our quercitin comes in a combo with Vitamin C and bromelain, but we're dosing the NAC separately, and there's no stinging nettle in our mix at all thus far. Be interested to hear how your kids fair with this.

Thanks for sharing the positive light!

I think you make a very important point here, EAMom, and it really resonates with me. Both Lyme and PANDAS are clinical diagnoses, but both have a history of being treated successfully with long-term abx. We're learning more every day about the various properties of abx beyond just the treating of infection: immune modulatory, glutamate modulatory, antidepressant, anti-inflammatory, etc. So who's to say WHY, exactly, the long-term has worked for some, like WorriedDad (and I hope our DS, also, since he continues to improve). Is it lyme? Is it strep? Is it myco p? Or is it, perhaps, more about SOME BBB inflammatory response to heaven-knows-what and the long-term use eventually quiets that BBB response? Personally, I would have a hard time accepting a lyme diagnosis for my DS, even if something like Igenex came back with a "positive," because 1) we don't live in a part of the country known for that particular tick, 2) he's never been an "outdoorsy" type, 3) never had a tick bite that I've known of, and 4) he DID test with very high strep titers. So we think we know our culprit. But I can understand some families, especially those who live in prone areas, who have a history of outdoor living/activities and/or for whom increased titers and myco p have been ruled out, continuing to seek some culprit to "hold accountable" for the inflammatory and immune responses they're seeing in their kids. The tricky issue, however, is how to undertake that investigation and receive some validation without appearing to suggest to everyone else on a similar search that you've landed upon THE answer, and that everyone else should take up a similar banner. And, in my experience, it's even trickier with the general medical community. Unfortunately, with many of the well-respected doctors I've met with, PANDAS parents are quickly gaining some of the less-desired reputational characteristics previously reserved for the autism community: that we're desperate parents willing to accept any "quack's" answer for why our child is suffering; that we value hypothesis over science; that we eschew the standard, accepted medical response in favor of the "off the wall" without sufficient research, study or rationale. I can only imagine the look on my regular pediatrician's face were I to inquire about lyme at this point! So, for some of us, the "leap" from PANDAS to lyme seems like a pretty big one, and it can be hard to reconcile some physicians readily making that leap themselves so quickly. That's not to say that it is invalid or inaccurate . . . just that it is a new perspective and one some of us will want to view more slowly and from some respectful distance. So here's another vote for considerate tolerance of varying points of view. Lord knows we've all got 'em!

Kimballout gave me some similar "allergy tips" LAST allergy season, and they really did help! Hence my near homicidal freak-out when I came home one day last week and DH had all the windows in the house wide open! He thought I'd lost it when I went off about how doesn't he remember what we went through last allergy season and how we agreed to shut up the house and use only filtered air and cleaned everything within an inch of its life and washed all the floors (including the wooden ones), etc., etc.,?!?!?! He took one look at my wild eyes and ran around, shutting every open window within seconds. Our DS13 is 135 lbs., and he's getting 1500 mg. quercitin daily, plus Benedryl at night and Zyrtec during the day. All that intervention . . . plus the home changes . . . has really made a difference thus far this season. Go strong, I say!

I reached out to Howie, also, after he shared the same day's "Bonnie Hunt Show" with Beth Maloney. I thought maybe he would start to look at his OCD a bit differently. Never heard back from him, though. I do, however, highly recommend his book, "Here's the Deal: Don't Touch Me." It's hysterical and poignant, all at the same time.

How does one contract lyme disease without a tick bite being involved?

Then it must be catching! (Usher, JayZ, Justin Timberlake . . . . )

Some of us might be interested . . . Discovery Health is starting a new reality series called "Tourettes Uncovered." It is supposed to follow four families with children suffering from tics. I checked my cable guide, and it begins next Monday evening (9 p.m. our time here in the Midwest), but it looks as though it repeats throughout the week, leading up to the next episode the following Monday.

We, too, had a consultation with Dr. K., though we haven't moved forward with IVIG and likely will not. Our DS13 does not demonstrate any immune deficiencies, and he is responding to long-term abx, supplements and therapies so we are not currently compelled to move forward in this regard. I can, however, concur with what the others have put forward as to what Dr. K. states with regard to IVIG and its efficacy for PANDAS. He told us, too, that it "reboots" the immune system so that it functions properly again. Please know that we immediately liked Dr. K. and have high regard for his willingness to step outside the conventional western medicine box and help all these PANDAS kids. He definitely has experience on his side. I do think, however, that he is not equipped to fully explain all the technicalities behind why he's been getting the results he has, or why he feels the way he does about other protocols as, though he's an experienced clinician in the field of PANDAS, he's not an immunologist or an infectious disease expert or any of those other specialty practices. He's a pediatrician who's helped hundreds of families, and he frequently doesn't see a PANDAS case until it has devolved to the point at which all other interventions are viewed as having failed so now it's time for IVIG. It's my humble opinion, therefore, that much of what he espouses is based solely on 1) previous experience with his particular patient load, 2) logical relationships he, as a physician, draws between various immune conditions and PANDAS and their responses to IVIG treatment, and 3) ideas, questions, concerns and observations his patients' families present to him. In the end, I hope that his collaboration with the NIMH PANDAS "dream team" which includes Swedo, Leckman, Cunningham, Trifilleti and a number of other prominent docs and researchers in the field will help pull all the pieces together. Then hopefully we'll have both the full science and the full compassionate care components in hand for our kids.

This is similar to the behavior my dad displayed even before a fever hit when he was struck by a UTI a couple of weeks ago. Like you, it's striking to me how similar some of the behaviors are to our PANDAS kids'. You'd think doctors would be less skeptical, but I'm guessing what sets our kids apart is that, for the most part, the behaviors start AFTER the fever has gone, rather than during or even before. Or totally in the absence of a fever. Hope your dad's feeling better!

I don't know if you can hear me from where you are, but I am standing on my chair, hands over my head, cheering your post and giving you the biggest standing ovation a single person can manage! You have hit the nail on the head, and I think you ought to type that up and mail it to every doctor you've ever seen who's either 1) been a pill-pusher for you, or 2) denied you antibiotic treatment. Then I would also send it to the American Medical Association, the health columnist of your local paper, and anyone else you can think of who might actually find it to be a wake-up call. I've actually thrown your logic in the face of my DS's pediatrician and psychiatrist, which is at least partially why, I believe, I finally walked away with a prescription for antibiotics, even though they both remain skeptical of PANDAS (the pediatrician more so than the psych, interestingly enough). I mean, really, what you're putting out there is part of the Hippocratic Oath that every doctor swears to: I swear to fulfill, to the best of my ability and judgment, this covenant: I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. (I admit to having to look up "nihilism" in this context; basically, this is the modern day phrase replacing the old-fashioned "above all, do no harm" and it literally means not to negate the possibility of meaningful treatment.) I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm. If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help. Again, bravo for you, Emerson! You are years ahead of your time!

FloraStor is actually 100% sach. boulardis, which is known among probiotics for being very good in a fight against diarrhea. FloraStor IS expensive, usually upwards of $1/pill. But you can get 100% sach boulardis at health food stores, Whole Foods, and vitamin shops at a significant savings, and they're still manufactured by reputable companies like Nutrition Now and Jarrow. We buy ours at the Vitamin Shoppe and we get 90 capsules for under $30. Pretty decent. Another recommendation on our part might be to try the Augmentin XR 1,000 mg. rather than regular Augmentin. Not sure if it's because the XR is time release, or if it's because it has a lower clavulanic acid component, but it has proven to be much easier on my DS's gut than regular Augmentin 875 mg. Also, I don't recall about regular Augmentin, but I know that it is recommended that the XR actually be consumed BEFORE the meal, rather than after. Finally, make sure he's taking the right probiotic. Acidolpholus, common to products like yogurt and kefir and sold as probiotic supplements like "Pearls," etc. can be killed by most antibiotics, so even if it's spaced out from the abx dose, it's probably not going to help much in terms of restoring the gut flora to healthy levels. Meanwhile, cultures like lactobacillus, sach boulardis and bifodobacterium can survive antibiotics, so they tend to work much better. Culturelle is a good lactobacillus, brand that's easy to find in grocery and drug stores.

I'm curious about those sites. Can you post links? Thanks!

Oh please hang in there! You've come so far, you obviously have a lot of strength and determination! You can do this, and you can get some additional help, as well. Like Peglem said, I would look into whether or not there might be some other condition underlying the OCD that, if treated, might render the OCD itself more treatable. My son was diagnosed with OCD at 6 and has his first significant flare at 7, at which point we allowed him to be put on an SSRI (Lexapro). He did well for several years, taking the Lexapro and attending cognitive behavioral therapy (CBT). But when he turned 12, the OCD came to the forefront with such intensity that we didn't know what was going on. He'd not experienced any fresh trauma, any major changes in anything, and yet the OCD took off like a rocket. We changed and increased dosages on so many SSRI's over the next several months, and none of that made any difference in his condition. We, too, tried heavier hammers like risperdol, zyprexa, seroquel; they did nothing for him but, like you said, make him a zombie. They did nothing to help relieve the underlying anxiety. Finally, last fall, we tested him for strep and overactive strep antibodies; he'd never had strep throat at all, but once we got the blood test results, we found out he did, in fact, have a strep infection somewhere and that his antibodies were in overdrive. There may well be more to his OCD, given how long he's had it (not unlike you), but he also had the PANDAS condition. Once we started treating him with antibiotics, everything else improved. His OCD has been stepping down, bit by bit, for the last year. He's on another SSRI now at a very low dose, and getting good results from it. And he's in weekly exposure response prevention (ERP) therapy. I didn't see you mention in your post anything regarding ERP. Have you tried it? Whether PANDAS is in your mix or not, I know that studies have shown that the best response to OCD is a combination of ERP and medicine. Perhaps you've been down that road or are still in therapy now, but I truly recommend it for you, if not. It really works!

We first began therapy when DS was 6, so he was young enough not to feel any stigma or shame at "being different." Plus, quite honestly, from what I know of my friends' kids and DS's peer group, girls tend to be a bit different and frequently more socially aware earlier. I agree with Peglem, though, I wouldn't try to trick her; you need her to trust you and the choices you're making on her behalf to help her get better. Now, at 13, DS knows without a doubt that therapy is helpful to him; honestly, I think he also enjoys having someone focus on him and only him for 45 minutes every week, listening to his stories and helping him work through some of his fears. And he is experiencing success, too, in terms of leaving some of his OCD fears in the dust, and success breeds investment, and investment breeds more success. I think rapport is important, so you need a therapist your daughter actually likes and can eventually feel comfortable unloading to. And, like Peglem said, too, she needs to see the benefit so that she will invest in giving it a solid try. At the IOCDF conference, Dr. Jonathan Grayson posed the following question to one session: "What have you given up for your OCD?" That rang a bell for DS, as he felt like he'd given up much of his summer, free time, playing with friends, etc. to the OCD. And it made him that much more resolved to tackle it. Now, he's older than your DD, but there has to be some age-appropriate version of that which might help your DD see what she has to gain by taking on the work of therapy.

I'm new enough here that I don't recall this initial post, Sylvia, but a couple of things resonate for me. Our DS (now 13) had raging ear infections, one after another, from the time I stopped nursing him (around 14 months) until we finally consented to having the ear tube surgery when he was three. He, too, was put on antibiotics time and time again . . . usually liquid amoxicillin for a 10-day stretch. I have some recollection of moving on to a stronger abx now and again when we couldn't get him clear for any length of time. Anyway, a couple of months ago, someone here on the forum posted a French research paper about otitis medea and how fluid taken from infected ear canals often contain Strep A. And that got me thinking about whether or not our PANDAS journey actually started way back then, with those ear infections, rather than around school age when strep throat would course through the elementary school like wildfire. So, was it the infection, the shot or the antibiotic that contributed to the autism diagnosis? Or a combination of 2 or more of those, perhaps? Our DS also has autism spectrum disorder traits; socially, Aspberger's has been at least on the fringe, and his IEP testing last year revealed some visual processing differences that placed him potentially on the very high functioning end of the autism spectrum. Like a lot of PANDAS kids, though, the stronger the exacerbation, the more intrusive and obvious the autism spectrum behaviors become, as well. Experientially, I can tell you that we've had DS on Augmentin for 11 months now, and he's only gotten better with respect to classic PANDAS symptoms, and the Aspberger traits have similarly abated to a large degree. His processing I would still say is "different" from an "average kid's," but he is doing well academically in spite of that, though most assignments (both classwork and homework) take him longer to accomplish than his classmates generally.

I had wondered the same thing about Sammy, so I asked Beth Maloney directly when I saw her at a conference back in the spring. The answer is yes, Sammy had the help of therapy to overcome the "residual OCD," as many PANDAS families refer to it. I can tell you from experience, also, that CBT -- or more specifically ERP (Exposure Response Prevention therapy, a form of CBT) -- can help your DD with these OCD behaviors; she's avoiding things that she fears (perhaps out of fear of contamination of some kind), and the longer she avoids, the more set that behavior can become, despite the abx. It is even possible that those behaviors will "spread" or "creep" into other, related areas, as OCD is want to do, whether born of PANDAS or not. Our DS made good gains in some of the most debilitating OCD behaviors once we got him on abx, but he's still needing and using ERP therapy for what remains.

We had huge sleep issues early on in PANDAS, even with antibiotics at hand. So we started using melatonin several months ago, and it worked so well for DS, DH and I have become melatonin users, as well. DS is 135 lbs., and 3 mg. puts him to sleep quickly, and he now sleeps solidly through the night.

Might I suggest a dawn, "Rabbit, Rabbit" mimosa party?! Sure would put a different light on the beginning of the day, at least!

Re. the quercitin.. . Ours is a blend with Vitamin C and Bromelaine. Comes in 500 mg. gel caps, and we give DS 2 capsules in the morning at breakfast, and one capsule in the evening, for a total of 1500 mg. per day. We do give DS NAC, also, though I never thought of it as a cohort of the quercitin. My understanding was that quercitin is basically a natural antihistamine, while NAC was a glutamate modulator for his OCD. I have since learned that NAC is also used for respiratory ailments to help break up mucus, etc., but we were always giving it to him for the behavioral, rather than physical, impacts.

You go, girl! You're one very fortunate lady, but as my dad has frequently said, you make your own luck! No doubt your karma is finally coming around for you and your DS. Congrats! "Rabbit, rabbit!" it is, then! Maybe there's a trifecta in our future, too! One can always hope!

Yes, there's actually a split line on the XR pills so that you can even just literally break them in half for swallowing. Just know that the two halves must be consumed at the same time, though, for the extended release to work properly. In other words, were you to ever decide you could decrease the dosage, you wouldn't want to take 1,000 mg. XR pills and break them in half to give your child 500 mg. at each dosing. Honestly, I don't know/can't remember why this is, but there were a series of previous posts in which Alex did a lot of homework on this topic. If you're interested, I would search the forum archives for "XR" or posts by Alex, and you should come up with his research, findings, links, etc.