MomWithOCDSon

Anyone have a recommendation for how much taurine I should add to DS13's supplement regimen? He's about 130 pounds. Also, is it one of those supplements that needs to build up over time, or is it possible I might see a more immediate response? Thanks!

Unfortunately, Dr. K. has dropped out of speaking at the AO Conference. I am bummed about it. Now Dr. B. is on the actual speakers list instead.

Well, that's not a lot of information to go on just yet, but you might as well investigate. Just because your DS isn't symptomatic for strep doesn't mean he hasn't contracted it or been exposed to it necessarily. Has he been exposed recently, do you know? Any friends or relatives have it? And, unfortunately, strep isn't the only potential infectious agent; PITANDS expands the definition beyond strep, and some potential trouble-makers are viruses and another bacteria like Myco P. I would read some of the pinned threads here at the top of this forum and see if any of the behavioral or environmental things seem to fit. Lots of PANDAS kids have been noted as getting worse following vaccines, but I don't know that any of displayed their first "sudden onset" following vaccinations. I'm sure some of the more experienced parents will chime in here soon!

You certainly are . . . on a roll, that is! I really appreciate it, though. The whole CamKII/memory thread begun yesterday has really gotten me going with respect to my DS; it made so many little things fall into place! But then, of course, the question is, what to do about it?!?! This paper is intense! Hopefully, Buster or someone else with more science at their disposal can "water it down" for the likes of me. In the meantime, I'm going to try adding taurine to DS' supplements and see what happens.

Thanks for that, Peglum. Our DS doesn't have any major tics (his behaviors are almost entirely OCD/ADHD related), so maybe taurine is an option for him. I'm going to look into it.

I sent you a pm with the name of an excellent therapist in the area. For an update with our son. He seems to be doing very well. No vocal tics in at least a week and his neck tics are almost completely gone. He has been taking 2 teaspoons of lauricidin every day. He hates them as they taste like they are wax coated. We tell him not to chew..but he's 6. We are going to get a capsule form of monolauren and pour the powder into drinks/food etc. Today we are also going to start on colloidal silver. Monday we are planning on going for a Strep test just so we know what is going on. Love to hear how things progress momwithocdson..and everybody else for that matter. what is the difference between lauricidin and monolaurin? do you have a name of someone in the alpharetta,(north side of atlanta) area.for CST?? Fixit -- Maybe you'd like a specific referral from Megaman, but I can tell you that I found a local CST practitioner by going to the Upledger Institute web site, and then following yet another link to "Find a Therapist": Find a CST Practitioner Near You Then I PM-ed Megaman to check and see if he knew of the therapist I'd located, and he got back to me within a couple of days. Our appointment isn't for another week or so, yet, but I'll let you know how it goes. Hopeful!

Thanks for the replies. While cost is always a consideration, I'm not so much concerned as to "should we do the test" as to, "if we do, and it confirms high CamKII, what next?" DS is not afraid of needles or blood tests, so it's not an issue in that respect, either. And I get your point, too, SF Mom, as to having the information available for the future, especially since this PANDAS field is only now evolving and, it would appear, evolving faster now that there's some momentum behind it. Does anyone know, additionally, though, if there're supplements or treatments that would specifically help regulate the CamKII? Or if there are treatments or supplements that might aggravate or increase it?

So . . . if one takes the Cunningham test and finds that CAMKII levels are elevated in their suspected or confirmed PANDAS child, then what? We are considering ordering the test, as we suspect, especially given memory issues, that DS's levels would be high. And we're gratified by the idea that we'd be participating in a study that will hopefully advance the PANDAS profile in the medical community. But what are the ramifications with regard to treatment? Any different than if PANDAS has been identified by other means? I remember seeing warnings and reading a paper posted by someone here (Buster, maybe?) about CamKII and SSRI's -- why they might be contra-indicated in PANDAS cases, so that's the only information I specifically recall. Is there anything additional that high CamKII would warrant, or suggest is prohibitive, in terms of the generally accepted "standard of care" for PANDAS, re., abx, IVIG, pex, supplements and/or all of the above? Thanks! Nancy

SF Mom -- Having seen several of your posts regarding the benefits of bentonite clay, I'm thinking about trying it for DS. However, we don't have a doctor locally who's familiar with it, and in searching the web, I find a lot of cautions about constipation and overuse, suggestions that you add a laxative or psyllium to the regimen if you're going to use it, etc. Now, DS's abx definitely has some "laxative" properties all its own, so maybe as long as he's on the abx, use of the clay isn't an issue? Can you share your experience(s) in this regard? Just to add a little more info, DS is 13 and about 130 pounds. Thanks!

Well, this is the part that set my hair standing on end: Yep, let's encourage some more ignorance and nay-saying out there in the medical community, why don't we?!?! There's just not enough going around at the present time.

We've been living with OCD in our house for the last 6+ years, and while I can see some "fragments" of compulsive behavior in some of the things you've mentioned, I have to say that they don't really fit in with our experience of what might be classically considered OCD. As someone else said, they seem as though they may be a little sensory or maybe even ODD, but not necessarily driven by compulsions or obsessions. Also, the insistence on continuing with a line of conversation in which no one but him has any interest, following you around the house to continue to talk about it, even when you've made it clear that, as far as you're concerned, the topic is a dead horse and you're done beating it?!?! I can TOTALLY relate! Lately, that's almost an everyday occurrence in our house! Frankly, that sort of behavior, from what I've read and seen, is almost more on the autism spectrum side of something like Aspergers than it is OCD; an intense interest in, and inability to deviate from, what's on his mind at THIS particular minute! It is SO important to him, it should be THE topic of interest for the whole planet! And he cannot imagine how or why you wouldn't find the topic equally scintillating! Please understand, I'm not suggesting your kid or mine has autism or Aspergers. But I do think this sort of "mixed nuts" kind of cognitive inflexibility on all fronts is emblematic of PANDAS. In the last several months, our psychiatrist has frequently said that DS is "a real mixed bag," but that "mixed bag" seems to pretty readily describe a lot of the kids described here by their parents, and it all seems to be part and parcel of PANDAS. Some kids' behaviors fit better inside the OCD box, some fit more readily into the sensory box or the ODD box, but they all seem to be manifestations of some wires or impulses getting crossed, supposedly because of the inflammation. For an introduction to all things OCD, I would point you to the Obsessive Compulsive Foundation of Chicago web site. Not only do they have materails available for download designed for parents, educators, teenagers, etc., but they have these great articles drafted by doctors and practitioners in the field that address a lot of the particulars (click on "Expert Perspectives"; some of my DS's OCD behaviors I didn't realize were related to the OCD until I read some of this stuff. Here's a link: Obsessive Compulsive Foundation of Chicago If you find, after browsing through there, that your son's behaviors still appear and "feel" to you to be compulsion or obsession driven, then there are several threads here (just search "OCD") on the topic; Meg's Mom, in particular, has loaded several threads with reading lists and resource lists for OCD help.

We love melatonin in our house; it works like a dream, and there are no side effects that we've seen. Yes, one would hope that if your son is better rested with a good night's sleep, then his days will be at least marginally better; my DS's first pediatrician was a fairly well-know doc who authored the book "Healthy Sleep Habits, Happy Child," Dr. Marc Weissbluth. He had a famous quip he was constantly quoting to us parents: "A tired child is a wired child." So more rested, more calm! We've tried both regular Augmentin and XR and there is DEFINITELY a difference for us. Try as I might, I haven't been able to find any real research attesting to WHY the XR seems to work better/differently, not just for my DS but for several others kids in this group, as well, but since Azith also seems (anecdotally, at least) to have a good success rate for PANDAS, also, it MIGHT have to do with how long the drug stays active in the system and does the work. Since XR is time release and Azith has a longer half-life than a lot of other abx, maybe each of these is especially well-suited for the work fighting PANDAS requires? Good luck with your DAN doc! I know a lot of people have lots of good experiences with them, and at least you have Stephanie for a referral!

This is very interesting. It might sort of add some "color" to both the OCD and the attention deficit behaviors some of us see in our PANDAS kids. For instance, my DS takes quite possibly the LLLOOOONNNGGGEEESSSTTT shower on the planet! When I finally pinned him down to try to get to the core of why it takes him so long ("Is it because you like the feeling of the water raining down on you?" "Is it because you're never quite sure you're clean enough?"), his answer was pretty elementary and in keeping with this article and your take on it, Peglum: He said he actually "forgets" if he actually washed this part or that part, so just to be safe, he washes it all over again! I laughed because it sounds kind of ridiculous, but it certainly fits the pattern: CamK effectively "erasing" the memories that your brain is in the process of retrieving, which is basically all that's going on in trying to complete a multi-stepped but simple task like showering or bathing. Might explain, too, why some of our kids lose track and stray off "mentally" in the course of everyday chores. I always thought it was because DS was trying to ward off some compulsion, but maybe sometimes it's that, and sometimes it's that his immediate memory retrieval is compromised. So he forgot for the moment that, after he brushes his teeth, he needs to put on his pajamas . . . . . A whole new answer for "absentmindedness"!

That makes sense. Also, since there are different strep strains to confront, maybe each of these drugs has an equally strong correlating affect, depending upon the strain. Also, if I recall correctly, though, Azith has a longer half-life than most of the other non-time-release antibiotics, doesn't it? So maybe it IS something about the duration of the drug itself in the system (Azith = long half life and XR = time release), in addition to or beyond the actual dosage? Yes, please, Buster?

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded. I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin.

Like many other families here, our DS is taking Augmentin XR, the time-release form of Augmentin: 1,000 mg., twice daily. He was on it initially for over 5 months, and then we began to try and take him down slowly to a lower dosage. Long story short, after 2 weeks of slowly cutting the dosage back and landing at 500 mg. of regular Augmentin twice daily (for 1,000 mg. daily total, but not XR - time release), we went for another 2 weeks at this level before we contacted the doctor and returned to the twice daily XR. DS13's behaviors began to resurface -- not with the intensity or aggressiveness they had before the initial 5 months of XR, but in a significant way nonetheless. He became increasingly concerned about contamination issues, he began having trouble getting through his homework again, and he started falling asleep in class without much preamble and without being able to wake himself (the teacher was having to awaken him). After only two days back on the XR, the changes are once again miraculous. He's staying awake in class. He's doing his homework without meltdowns. He's not getting "stuck" in tasks because of concern that something or someone is in some way contaminated. What's going on?!?! DS was not on such a low dose of abx in the "cutback phase" that the mere dosage level should've made such a difference, especially if he wasn't re-exposed, which we don't believe he was. So what makes the XR so powerful for him? I understand there's a lower clauvanic acid component in XR than there is in regular Augmentin; is that the difference? Is it that the "time release" provides more durable response to the strep antibodies? Can anybody give me the layman's answer to the science here? Thanks!

Sorry for the setback! Not that IVIG isn't the right answer, but is there any chance he's adjusted to the initial Straterra dosage and an increase would be helpful? Our DS is taking Intuniv, and though the initial dose hit him pretty hard and strong, after about 10 days he adjusted to it to the extent that we stepped it up one more level. He's been at Level 2 (20 mgs.) for the last 3 months and continues to do pretty well, along with the abx. Also, not sure I've ever noted it, but how old is your DS? Ours is 13.

We are thinking about it but haven't committed as of yet. I hear that these conferences are excellent in general, and with a PANDAS track added, it would probably be even more worthwhile. For us, though, it may come down to finances. Also, since the AutismOne conference next month is proximate to us (doesn't require travel or hotel) and is also hosting a PANDAS track with Dr. K., Dr. T, Swedo and others, I'm looking forward to attending that definitely.

While I don't agree with the way they're handling it, I do get where they're coming from. I got the same "company line" from my son's school earlier this year when he was really sick and couldn't manage to stay in class for more than a few minutes at a time. He would beg me every morning not to send him to school, but the school psychologist, his private CBT therapist at the time . . . basically everyone I consulted . . . was concerned that if we didn't somehow "compromise" with him to get to school and keep him there, he would only become increasingly "school-phobic," and his fear and anxiety over being there would just grow, rather than settle. Interestingly enough, it was our psychiatrist -- who doesn't buy much, if any, of the PANDAS information -- who ultimately told me he shouldn't go back to school in his current state. To quote, "You can't throw a drowning kid back into the pool without a life preserver, and right now, we haven't found a life preserver that's doing the job adequately." He was, of course, referring to psych meds. But in the end, it was the antibiotics that became his life preserver. I do agree with Vickie that, in the midst of an exacerbation, our kids don't have enough reasoning power at their disposal to just slog through it in an environment (like school) that makes them fearful and anxious; I also know from experience, however, that removing them from that situation or place for a period of time tends to confirm and validate those irrational fears somehow so that, even with a fresh start and a fresh grasp on life encouraged by PANDAS treatment, they may still need some help getting back into the swing of things and getting back into the school setting on a full-time basis again.

Kim -- I am too "science-dumb" to follow. Can you help me out in plain English? DS is 1) allergic to cat dander and 2) taking an NAC supplement. So . . . . . ? Will he endure cats better with the NAC assisting him, or are we going the wrong way with this? Or is just that there's a link between people who tend to be NAC deficient and their also being allergic to cats? Thanks! Nancy

I see Buster's not the only one in this group with a talent for writing!

If you cannot get help from this doctor, then you find another. This site and others pertaining to PANDAS are full of practioner lists for doctors who not only treat PANDAS, but also those who specialize in it. Your child has the, forgive the phrase, "perfect symptom set," so any informed doctor WILL treat. Like Buster said, at a minimum, the strep with a positive culture should be considered treatable by any pediatrician in the country, though it might initially net you only a 10-day prescription for antibiotics. But you can push for more. In short, don't take "No" for an answer. Your sons symptoms are saying "Yes"!

Hey, I'm sure Buster can work with that, too!

If different ethnicities and races of humans can be more susceptible to different disorders and diseases, and different strains of strep and other infectious agents find safer harbor in some environments more so than in others, then why isn't it entirely possible that different kinds of cats (maybe color is just a characteristic of a breed or other genetic factors) would produce a different variety and/or intensity of allergen? At the risk of sounding like Oprah or something . . . I truly believe there is more "interconnectedness" to all of our health issues than typical Western medicine is ready to admit. The more you read and the more you hear, the more you realize that inflammation of just about ANY part of the body is generally not a good thing, and that many illnesses are caused by it. So, allergies can make PANDAS worse, and probably vice versa. I'm thinking that hormones are playing a larger part in my DS's PANDAS and behaviors, given as he's entering puberty, and hormones can cause inflammation also. Buster, it's a constant tussle in science and medicine, isn't it, determining the correct parameters for research so as to eliminate any components that might unduly influence your variable, while at the same time being careful not to inappropriately exclude a component that, while initially appearing immaterial, could hold at least a pin in the key-making machine, if not the whole key itself?

And as we all know, if there's a cat in the house at ALL, the cat hair is EVERYWHERE, so no one is spared the hair And what of the DANDER (Myco P, maybe?), which can be the true allergen to many who are sensitive to cats, orange or non-orange? Real life/true story -- my DS cannot even be in a house that had a cat (of any color) in it within the last week, even if the cat has been removed for his visit, and even if the house has been cleaned from top to bottom. The remains of any dander that the vacuum failed to suck up is enough to send him into sneezing fits and instant congestion!