MomWithOCDSon

My DS does this also when he is agitated, though his behaviors are also 99% OCD rather than tics. Until I started reading this board, I never would've known it had any neurological basis, but I do think it is a sign of the chorea-type movements associated with strep auto-immune respose, not entirely unlike Syndeham's Chorea movement issues. I would contact the doctor right away.

Hi, and welcome! I know you're asking about DDs, and I have a DS, but I can also say that the onset of puberty seems to have heavily exacerbated his symptoms, unfortunately. We've discussed hormonal impact on PANDAS symptoms on a few threads here over the last few months that I've been participating, and there does seem to be an anecdotal thru-line, though I haven't been able to find any related studies or professional musings on the topic. Our DS, we now believe, has probably had PANDAS since the age of 2 or 3, and we've been dealing with what we initially believed to be "classic OCD" since the age of 6. It wasn't until he'd hit 12, however, that the train went seriously off the track and brought us to PANDAS. So we believe that, to some extent, the gun was already loaded, but puberty helped pull the trigger on this worst exacerbation yet. I've seen a few posts in the past the indicated that some PANDAS moms experienced relief from their symptoms while pregnant, so that would seem to support the thesis, also. I think there are a few who've thought that birth control (YAZ, in particular) helped some symptoms abate, too. I'm sure you'll get lots of responses.

Thanks to those of you with the Daiya recommendation! I picked some up this morning at Whole Paycheck, made DS a grilled cheese for lunch with it, and he LOVED it! I agree the taste is great, even if the unmelted texture and look is a little odd. What a great find! Thanks again!

I saw Goldie Hawn recite this many years ago, on some awards show, and it really stuck with me. So I hunted it down a while back so that I could have my own copy, held near and dear. Maybe it will resonate with some of you, as well. Kids Who Are Different by Digby Wolfe Here's to the kids who are different, The kids who don't always get A's, The kids who have ears twice the size of their peers, And noses that go on for days... Here's to the kids who are different, The kids they call crazy or dumb, The kids who don't fit, with the guts and the grit, Who dance to a different drum... Here's to the kids who are different, The kids with the mischievous streak, For when they have grown, as history's shown, It's their difference that makes them unique. I LOVE MY "DIFFERENT" KID!

We started CBT with some ERP pieces when my DS was 6 and, yes, as long as he's calm enough to listen (i.e., not in the middle of a full-out rage), I think therapy can help even the very young. It helped us as parents, too, because it gave us information about what we were dealing with, helped us separate the behavior from the child so that we blamed it and not him, gave us tools to help him at home, etc. PLus, let's face it. A great many of our PANDAS kids are of above-average intelligence, so what a typical 6-year-old kid won't get, ours frequently do. Our DS really responded to the level of respect and adult consideration he was given by his therapist; it made him feel validated and worthy, rather than dismissed as a "bad" or misbehaving kid. Depending on where you live, the OCD Foundation may have some excellent therapist referrals for you, even some that specialize in pediatric OCD. I know some others have offered, too, but feel free to PM me as well if I can help you navigate your search! Nancy

I'll PM you her name and phone number! Just kidding. She means well . . . she's just uninformed and determined to stay that way. What else did Mom used to say? "You can lead a horse to water, but you can't make her drink!"

For anyone else's family who just can't live without cheese, I found this on-line just now. Obviously, I'd be interested in whether or not anyone else has tried this, but I think I'm going to give it a shot, given this glowing recommendation: Dr. Cow’s cheesemakers are turning out cultured, tree-nut ‘cheeses’ using the same techniques used to make natural milk-based cheeses. Since it’s the culturing that contributes so much of the flavor and texture to natural cheese, Dr. Cow’s variety of cheeses are an attempt to create a vegan cheese with an appearance, texture and flavor that make them respectable–and possibly delicious– substitutes for dairy cheeses. I visited the company’s website and was compelled enough by the flattering photos of their incredibly cheeselike products to run out and drop $6.99 for a teensy 2.5oz puck of the Aged Cashew and $8.99 for the Aged Cashew & Brazil Nut variety. Like fine aged cheeses, each came wrapped adorably in wax paper. My expectations were high. Now I’ll admit that when I opened up the first one, it was more of a putty color than the online photos suggested; and when we sliced into it, my husband remarked that it looked like a cross between a plastic explosive and Halvah. But when we placed some on a cracker and tasted it, it felt and tasted like a real, bona-fide natural cheese. Tang? Check. Salt? Check. Creaminess? Check. We each had several pieces of both varieties–very much on our own volition–and declared them to be worthy of the next vegan, gluten-free, dairy-free, locavore wine-and-cheese party we throw.

Awesome! Thanks so much! I'm off to Whole Foods tomorrow to hunt it down!

We've had 3 healthcare appointments in the last week, 2 of which were, frankly, dire disappointments. Appointment No. 1 was with DS's regular pediatrician of over 10 years. She's been helping us by prescribing abx, and I have given her a binder full of documentation and research in support of at least considering PANDAS, but she was an admitted skeptic at the beginning, and, apparently, she's not budging from that particular point of view. I quizzed her at some length this last time, and while I didn't directly poke her about just how much of the materials I'd supplied she'd actually read, or if she'd even done some of her own research, she very clearly still sits on the Skeptic side of the room. She warned us about other physicians who might use "unproven" methods and sell expensive treatments that have not been fully tested in terms of efficacy, etc. She didn't want to investigate any further immune testing ("to what end?" she said), and she likened some of the PANDAS exploration and treatments with the "unproven links" between autism and MMR vaccines, etc. I got seriously bummed out talking with her. Then, Appointment No. 2 was our first foray into an alternative therapy. I'm pretty open-minded and grew up with a lot of "new age" and Eastern medical ideas and methods, but this was just not what we expected. The vibe between DS and these therapists was all wrong, almost from the beginning, and we probably should have cut the session short, but we didn't. Needless to say, though, we won't be going back. And then, on to Appointment No. 3, the one I'd been dreading the most, frankly: the stick-in-the-mud psych. We've been with this psych for more than 5 years and he is a very likable guy, and competent in his field, it would appear. But he dissed the whole PANDAS thing pretty thoroughly when I first brought it up some 5 years ago, and when I returned back last October with a new round of PANDAS-related inquiries, he was obviously put out with me. I didn't give up, though; I printed and duplicated 10s of journal articles and accounts (many of which were brought to me by this forum -- thanks! ), and took them to him on the next visit. I highlighted a few that I thought he would find most "convincing" or from the most "prestigious" sources, as he seems swayed according to the particular publication or doctors' names associated with an article. He seemed especially "impressed" by the Columbia mice study. So today was the first time we've been back to see him since that last time; it's been about 2.5 months. I had a few more articles in hand today, and I had a few new questions for him about serotonin, dopamine, etc. I also asked him what he knew about the OCD/glutamate studies recently conducted at Case Western University, etc. I had Kenneth Bock's book with me, and we talked about a few of Dr. Bock's conclusions and responses, etc. I talked to him about auto-immune and inflammation and tracking DS's behavior and how NOT standard OCD it's all been. And here's the kicker: HE AGREED!! He said, "You've got me, Nancy. You've done your homework. You're right, there's obviously something else in the picture, here. Thanks for the research. I still don't feel I know much about it, but let's do what you guys think feels best." I'm still picking my jaw up off the floor. If THIS guy can be "converted," there remains hope for just about anybody!

Our DS13 is a bit of a "policeman," too, and it makes us chuckle most of the time. But sometimes, when you try to explain the subtleties of why what one person is chosing to do at this particular time is okay, while what another person might chose to do another is not, it feels a little shady as a parent, doesn't it? Like you're splitting hairs or equivocating, sending a mixed message. In our case, though, I really see this as an extension of DS's OCD scrupulosity. He can be so guilt-ridden himself at times, it makes him the ultimate rule-follower, and then he expects that of all the people around him that he looks up to and admires. He had a serious crisis of conscience one evening watching a talk show and realizing that the lead singer of his favorite band has (and, quite frankly, probably does still) smoke(d) pot. We were doing some fancy footwork over that one, I can tell you; "You don't have to admire EVERYTHING about a person in order to enjoy certain aspects of them. Maybe you don't want to be like him in all ways, but you can admire his ability to make great music." DH and I will share the better part of a bottle of wine about once a week with dinner, and I think, maybe because of his age, he's able to distinguish the difference between drinking and drinking in excess. I'm sure it's harder at younger ages, but you're still entitled to a glass of wine (or even a martini ) now and again. And I don't think I'd hide it because that might actually inadvertently validate her concern that it's wrong. I think, as you demonstrate that it is just a beverage for you, that you are not altering your behavior dramatically or failing to address her needs by virtue of having a glass or two, she will relax more about it. JMHO!

After much reading and consideration, and facing the worst allergy season of memory, we've decided to go cow's milk free in our house. DS LOVES, LOVES, LOVES cheese, so it won't be easy, but we're going to try and allow some goat and sheep's milk cheeses, at least initially and just stay way from anything bovine in that regard. We're hoping it'll help inflammation, gut issues and some of his congestion. Milk is easy; DS drank rice milk his entire young life, and that's fine by him, especially since he really doesn't drink much of it anyway but we use it for cereal, recipes, etc. Anyway, I've seen soy cheeses in the grocery (especially Trader Joe's and Whole Foods), but I have no idea how tasty (or not) any of them may be. We've tried the Stonyfield soy yogurt and found it to have a distinct after-taste that DS truly dislikes, and I don't want to buy a fully package of soy cheese only to run into the same issue. Does anyone have any specific recommendations for brands and/or other cow milk product substitutes their kids like? Thanks much!

So, for folks like me who sit in the back of the class and take a little longer to catch on . . . . . Is that why SSRI's are thought to, perhaps, be counter-productive in PANDAS OCD cases? Because the SSRI's further interfere with the regulation of the dopamine?

Wow! "Auto-immune" and "inflammation" continue to rear their ugly heads! Why don't the doctors all get together and deal with this?!?!

Well, I don't have too many brain cells available to apply to the effort, either, but things are finally starting to "click" a little bit more for me . . . at least I think they are . . . thanks in large part to all the well-voiced information here. I keep seeing the words "modulate" and "regulate" with respect to everything from dopamine to CamKII to glutamate to serotonin . . . . the list goes on. So, unfortunately, it seems as though what we're all trying to single out is that "delicate balance" that keeps our kids happy and functional, but it's not as simple as "too much" of this so you limit it in response, or "too little" of that so you supplement. Rather, we've got to go after healing those danged "receptors" that Buster keeps talking about, or else all the adding and subtracting isn't going to do any good, at least not on a long-term basis.

Wow! How validating it must be! Now on to the best treatment for your DS! "Congratulations" sounds kind of odd, as in "Congratulations, you've got PANDAS!" But "Congratulations" feels appropriate in the context of, "Congratulations! You persevered, now you know what you're dealing with and can begin to heal!" All the best!

I'll be interested to see what some of the more well-studied folks here have to say. I have been told that Strep B is one of the "environmental bacteria" that is basically everywhere . . . on surfaces, on skin, etc. And that it is not inherently harmful. I do remember reading something here previously (Peglum or SFMom, I think?) regarding the fact that Strep B can "become" Strep A through some metabolic process.

From your fingertips to God's flat screen monitor in the sky!! Thanks!

Peglum -- All I can offer is good thoughts, prayers and wishes that this phase is quickly passed through for you and your daughter. We've not done IVIG, so no experiential thoughts to add here. Take care!

We use quercitin, also, though this allergy season is really doing a number on our whole family. So we recently increased DS13's quercitin to 2,000 mg. daily. DH and I also take 1,000 mg. daily (our allergies aren't at the level that DS's are, thankfully!) He also now takes Zyrtec (over the counter - 10 mg. daily) and a prescription steroid nasal spray (generic for Flonase). It may be a coincidence, but his behavior has improved yet again in the 4 days since we increased the allergy intervention. Originally at 1,000 mg. quercitin and Flonase only, he was still struggling with allergies and all the peripheral impacts, as well. Yesterday was a great day, however, and hoping they keep rolling now!

WornOutMom and Forjpj -- Who are your insurance companies? Can you "name names?"

Yes, they are, just like he is! Except they're doing something to help! I'll bet he expects to get paid for that office visit, even though he did nothing to help! Sounds like this doctor has been spending too much time at the NIMH PANDAS website! I got a similar "I am concerned" speech from our regular pediatrician at the end of last week. Cautions against "predatory" practitioners who will advise and perform treatments that are costly and do not have clinical research to back their efficacy. Honestly, I think they mean well, but they're stuck in their little well-labeled boxes. If not for families like the ones on this forum, along with the researchers like Cunningham and doctors like Dr. T. and Dr. K., sticking their necks out beyond these little boxes, PANDAS treatment wouldn't even be in the infancy stage it's currently reached. It'd be a "zygote," maybe!

All great information, but daunting! I guess I was trying to find a "simpler" way to think about and/or explain this whole thing, but there's nothing simple about it. BBB, molecular mimicry, variety of potential infectious agents, co-infections . . . . . . I guess if this stuff was easy, the western medical community would've already figured it out themselves instead of making us go through all this research and hypothesizing!

That all makes sense, Vickie. I guess I'm still a little confused about treatment protocols in light of that information, though. If, as Elizabeth's reference has pointed out, certain treatments are truly "immune modulating," then I could see them as being helpful in both cases. But what about all the "immune boosting" stuff, like various supplements? If a child is already hyper-immune, are you adding fuel to the fire by continuing to boost that system? Or is it that the hyper-immunity might be self-limited (to only certain allergens? to only strep or myco p?), so that in "boosting" the other parts of the system, some modulation can take place? More thinking out loud: if a kid is immune deficient so they have trouble fighting off infection, then their auto-antibodies stay in production because there's always that "alarm call" that there's something to be fought. So you give them abx to finally get at that infection, but because they're atypically suseptible, maybe you keep them on prophylactic abx so that they don't continually catch something that will cause the auto-antibodies to mount again. Okay, I follow. But here's a hyper-immune kid: you don't even know he's caught anything, including strep, because he never has the classic symptoms of it, and possibly never comes up with a positive culture, either. But he's got it, and his auto-antibodies load up and mount an attack. Only, they're mounting even when the kid isn't classically sick; there's no fever, no sore throat, no stomach ache, etc. They're in overdrive of their own accord? Why do abx work for this kid (at least some of the time)? Is it this "intracellular strep" that they finally reach and so that healing backs the antibodies down? And if so, how do we get at demonstrating the presence of this "intracellular strep" for the difficult, skeptical doctors? I keep hearing that the ASO tests aren't good for use on diagnostic terms because they are only capable of reflecting a "recent" strep infection, and because not all kids who have PANDAS have elevated titers. But is it possible they ARE a good indicator for the hyper-immune set, i.e., indicative of some presence of this "intracellular" form of the illness? It makes sense that immune deficient kids might not display elevated titers under any circumstances because that's part of why they have PANDAS in the first place, their auto-antibodies come to work, but the workforce just isn't sufficient for getting the job done. But the hyper-immune . . . it seems that their predicament is a little tougher to document and explain, especially in terms of qualifying medically for some of the "bigger" treatment procedures, like IVIG or pex.

As I know some of us are using curcumin/tumeric for its anti-inflammatory qualities, I thought this article might be of interest: Curcumin and augmentin for lung health

Thanks for that, Elizabeth. That's the easiest-to-understand description of IVIG I've seen yet. So, that would seem to suggest that IVIG can work for both ends of the spectrum: hyper and deficient. I do still wonder, though, if it's more successful for one group than the other, generally. At the least, the article seems to suggest that you're more likely to get your insurance company to pay for it if the treatment is "on label" rather than "off," meaning there's a documented immune deficiency. And what about the whole abx thing, then? Why does it appear that the abx works for hyper kids who, even though they don't appear to have strep at present, and their ASO is high, they improve and the ASO count comes down?