MomWithOCDSon

I was told recently by a holistic doctor that strep "hides out" particularly in the sinuses! Our son has always had seasonal allergies and other respiratory sensitivities that cause congestion and drainage, so her caution set off some alarm bells for me. She recommended making sure his daily intake of vitamin D3 was adequate as a "natural" response to this challenge.

Augmentin is a combination of Ammoxicilin and Clavulonic Acid. the Clavulonic acid somehow makes the ammox more effective. Angela Thanks for the clarification. I knew it was Amox +, but I'd forgotten the other ingredient.

Please let us know how the IVIG works for you. From other posts here, I see that even many IVIG patients return for additional IVIG and other treatments, so it is something of a mystery to me if anything is a "permanent" fix. Sammy Maloney seems to be something of an enigma in that regard.

Congrats, Isabel! That is great news! An extra holiday present for your family! While our holiday week started out a little shaky . . . being out of school with a less structured schedule and all the Christmas anticipation . . . we, too, are seeing a light at the end of our latest tunnel!! Yahoo! I would echo many, if not all, of the improvements you've noted for your own son with reference to ours, and we are SO grateful and encouraged! And very grateful to everyone on this board who've added to our arsenal of information and advice! If not for you, we'd not have tried melatonin, NAC, sach b., etc. or held onto our sanity during the toughest days! Here's to a hopeful, healthy, happy New Year!

So far as I can figure out, yes, amoxicillin is generally considered a "lighter" one. My understanding is that Augmentin is a combination of penicillin and amoxicillin, which somehow more strongly "activates" the med overall. I'm no expert, though, so it would be wise, of course, to check with the doctor. The abx I see most frequently noted here are azith, augmentin, keflex and cipro. Yes, my 12-year-old son has experienced more or less complete "remission" from his symptoms for periods of time, the longest "waning" having been for nearly 5 years! His behaviors are almost entirely OCD in character, and during that major wane, he would probably still best be described as a bit "quirky," but none of the behaviors significantly impacted his home, academic or social life. With this latest exacerbation which began about last May, it's been a tougher fight but one that we've seen the abx definitely assist. Your son is obviously younger and smaller than mine, and I have no medical expertise (only experiential), so I'm unfortunately no help with regard to your dosage. Hopefully one of the other forum posters with a longer range of experience and/or a child of similar age/size will chime in for you on that.

There are several threads here about what materials you can take to your doctor regarding PANDAS, and what testing can help support your contention that, irrespective of a positive strep test (or not), your child may be experiencing PANDAS. From what you've described, it does sound like PANDAS to me, especially since you've seen both OCD and TS behaviors during exacerbations. Although it is not at all considered to be a "definitive" test, we were able to convince our regular pediatrician to go with a long-term abx treatment with an ASO titer test that revealed strep titer levels about double the normal range; this test was suggested to me by Beth Maloney, author of "Saving Sammy." Our son has always been asymptomatic for strep, and each and every throat culture always comes back negative, but the ASO titer blood test demonstrated that he had a recent exposure; that was enough to bring our ped on board. I also took her a copy of "Saving Sammy" and asked her to read it. The OCD behaviors you're describing your son as displaying now sound very much like what my DS12 goes through in terms of contamination (the chair being dirty), and what Sammy Maloney in the book displayed in terms of hopping lines in doorways, etc. As for whether or not your abx dosage is adequate, it seems to vary greatly with all kids and would depend to some extent on his size (weight); also, strains of strep vary across the country, and it appears some are more responsive to one abx as opposed to another. And some exacerbations seem to come as a result of exposure to non-strep triggers whether flu, cold, oral issues (tooth pulling or molar cutting), etc., and what abx helps in those instances appears to vary, also. We've had success with Augmentin, while others have had success on Azith. It seems to me the thru-thread, however, is that the heftier abx tend to work more consistently than the "lighter" ones. Good luck! There's lot of information here, lots of experiences (and lots of opinions ).

Our son's OCD behaviors almost always increase during a cold or virus, as well, and also during high "excitement" times like Christmas, as Vickie has noted. He feels stressed, I think, because his body is doing something he cannot entirely control . . . the running nose and coughing and feeling tired and achy just feed all the underlying anxiety. And as for the holiday excitement, again, all the anticipation and the interruption in routine, etc. make things harder for him, too.

Thanks! This is exactly what I was wondering. I mean, experientially, it's no surprise, as someone else said. But I guess it just feels comforting to hear, with some chemical/hormonal basis, that puberty and increased anxiety are "standard;" unfortunately, some of our kids are just more susceptible to the impact of those changes.

Thanks, Dad. I've been wondering myself if the 2,000 mg. augmentin XR (time release) isn't our "magic dose," as well. We've stepped down only slightly to the 875 mg. augmentin twice daily as of a few days ago; for the first few days, we saw some regression, but he seems to be holding pretty steady now. Maybe he'll be able to maintain and continue to improve, even on this slightly reduced dose? I remember Sammy stepped down later in his recovery to a lower dosage and found it difficult, but as Beth said, he was determined to make it through this reduction this time. I'm not entirely sure what that means, except that my interpretation is that reducing the dosage can make some of the OCD behaviors feel stronger, but a kid who's old enough and aware enough can actively fight against allowing them to overwhelm him? My most recent advice from Beth was to make sure my son could "tolerate" a reduction in dosage before enacting it. So, if there is a slight regression but he begins to get a grip again, then he's "tolerating" it? Thankfully, our son has never displayed the more extreme behaviors that Sammy had, so our ability to discern regression from plateau from progress can be challenging at times. We're having to step back, mostly, and try to be mindful of the Big Picture.

Yes, we've experienced essentially the same thing, twice now. We're sort of new to the whole PANDAS thing, so we've just been trying to stick it out, keep an eye on the experiences posted here and a couple of other places, and keepin' the faith, so to speak. Similar to your experience, we have a wonderful response for the first week or so on a new abx course, then he would sort of "plateau," and ultimately start to regress in terms of his most tenacious OCD behaviors (mostly contamination fears, unwanted thoughts). Isn't this part of the jagged "saw blade" type of recovery I keep hearing about? I know that, according to Beth Maloney, Sammy's recovery was very much two steps forward, one step back, at least early on. I'm hanging onto that, I suppose. The one thing we have been able to track as remaining consistently improved while on the abx, though, even if some of the other behaviors regress: his total meltdowns are fewer, shorter and less hysterical overall. So, for us, that still speaks of progress.

I'm not sure; quite possibly. I guess I could check with the dentist. He's always been a little behind in terms of the maturity of his mouth; he's still housing some of his baby teeth! Is there something about the cutting of the molars we should be aware of?

Is it just a coincidence that many of us here on this board seem to have PANDAS kids who're just entering or in the midst of puberty? I mean, we've seen exacerbations (waxes) before, but the one we're in now, at age 12, is far and away the TOUGHEST, most tenacious, ferocious one we've experienced. And we'd like to think that, when we come out on the other side of this one, any and all future ones will pale in comparison. Has anyone seen any research or had professional response as to the role hormones might play in all this?

Did you try it last night? If so, did you notice a difference? Susan I DO think it has made a difference; we've given it to him for the last two nights, and he seems to fall asleep faster, plus he's slept through the last two nights for the first time in over a month. Before, he'd inevitably wake up around 3 a.m. or so and get up to go to the bathroom; then it would take him a while to get back to sleep. I talked to him about the valerian root; as you might imagine, the accompanying "stink" is not something he wants to be asked to put up with! So the short-term deal is that we'll see if the melatonin is enough. If he returns to sleepless nights, however, then the "stink is on!"

One of our DS12's biggest triggers appears to be boredom! If he's less than entirely engaged in something, his anxiety seems to grab hold and make mountains out of every little molehill! But if his mind is more or less entirely occupied with something, he can go for hours . . . sometimes even a whole day . . . without a single meltdown.

Thanks, everyone. I bought the 3 mg. capsules, so I guess one should be enough! I didn't see the time release version on the shelf, but maybe I'll try that next time. Peglem, do I need to go to a natural foods store for valerian root, or can you find it at like a GNC or Vitamin Shoppe? Is it a tincture or a pill/tablet? And how much do you give your child?

Anybody have experience and/or advice with respect to how much melatonin might help an anxious child fall asleep and stay asleep? Our DS12, 5'4", about 120 lbs., has been having a lot of trouble sleeping lately. Having tried relaxation techniques, reading before lights out, quiet music, all to no avail, we've decided to try melatonin. But what's the right amount? Can we give him too much? Any unwanted side effects? Thanks!

My 12 year-old PANDAS son can barely write at when he is at his worst; keyboarding can even be a challenge. So he rigged up the voice recognition software that came with his PC, and now, at times, he "speaks" his papers or answers! Even when the PANDAS isn't raging, his handwriting isn't anything to write home about! Is your son always falling a little short, penmanship-wise, or does this only rear its head during a PANDAS exacerbation?

If anyone is interested, I live in the Chicago metro area and work downtown, so I am very familiar with the area, the hotels, etc. If you'd like to come out and can use some "liason" services, just PM me! I'll help as much as I can!

Thanks, Vickie! I've been wondering about this ever since I saw a news special about some OCD research at the University of Michigan that revealed that OCD brains seem to be lacking in a certain glutimate (?spelling?). I just bought our first bottle of NAC today, and my son's had his first dose. Sounds as though it might take a while to have visible results, but I'm looking forward to watching for the impact. It's good to know that this study saw no negative side effects, also.

Just in our experience, the hand movements aren't typical of OCD . . . I believe they're "autonomic" as opposed to being driven by a compulsion. That would make them more "tic," yes?

We have a very similar way of working in our house. Having "grown up" with what was originally identified as old-school OCD in our house, cognitive behavioral therapy very early on encouraged the parents to separate the behaviors from the child himself (blame the OCD, not the kid). As a young boy, our son even "named" the OCD and would express how this alter-ego was trying to pester him, prevent him from doing certain things, incurring thoughts, etc. So we would respond in turn, telling him that when he (the son) was in charge again over the OCD, then we could have a meaningful conversation, but we weren't going to be manipulated by the OCD, etc. It has stood us well in all the subsequent years, excepting the major meltdowns during which there's absolutely no talking with either the son OR the OCD! If you've ever tuned into one of the "Obsessed" episodes on A&E, it reminds me again of one of the mantras spoken there frequently, and we've been known to speak it at home now that our son is older: I realize you can't control the thoughts, but you CAN control the behavior! Especially with older kids, I like the accountability of that overall. Again, during the meltdown itself, he's probably completely out of control. But once it subsides and you can talk through it, then it seems like the right thing to do, expecting some accountability for control.

Well, if you have a long, good relationship with this pediatrician, then, frankly, begging might be just the thing. It worked for me! We'd been with ours for nearly 10 years, so I didn't want to change, either. So I took her a copy of "Saving Sammy," inscribed on the opening page with a plea for her to be open-minded and help us, and I'd written up what I jokingly call "The Maloney Medication Matrix" from the book (and a few points of clarification from Beth Maloney via email) so she would feel she had some place to start in terms of protocol. I also included the names, addresses and phone numbers of Sammy's doctors (Dan Gehler and Dr. Nicolaides) so that she could reach out for other professional consult if she wanted to.

If you cannot travel and I think it will be at least another 3 weeks before Cunningham begins CAM testing again, how about trying another pediatrician in your area? We've found a very wide range of responses where we live in terms of openness to PANDAS, and where your current pediatrician refuses, you might find another that is willing to prescribe abx, at least for a short term, during which time you can either find a longer-term solution, get the Cunningham testing, or both. Our pediatrician, too, is a "skeptic," but she agreed to prescribe abx under the "do no harm" phrase of her oath.

And I just checked with Beth last week after she and Sammy appeared on the Bonnie Hunt Show. She said Sammy still takes a low dose of Straterra. For what it's worth, our son is now on Week 3 of a low dose of Intuniv, another non-stimulant ADHD medication. Prior to it, though his OCD behaviors have been on the wane (thank you, Augmentin!), he was reporting trouble sitting in his desk in school, needing to get up and walk around constantly, impulsively making wisecracks during class, etc. He even described it once as "needing to crawl out of his skin." The Intuniv seems to have taken care of all of that, on top of which, his focus is improved with regard to schoolwork and homework.

We got our son a papasan chair recently, too, basically in the midst of this latest exacerbation. I think there must be something about its "womb-like" design, as it has become his "safe place," a spot where he can go to chill out when he's stressed out and agitated. And he frequently falls asleep in it, also. I wish we'd gotten him one years ago!