MomWithOCDSon

Yes, interesting. Funny how many different "takes" intelligent, articulate and obviously well-studied people can have on a single issue. For good, bad or otherwise, DS has been taking a calcium/zinc/magnesium supplement daily for the last several years, as have I. I thought I was taking it mostly for the calcium, but maybe not! :-)

Unfortunately, I would bet that 14 days of abx will not be sufficient; few of us have had lasting success with such a short abx course, especially for kids of your son's age. If your local doctor is unwilling to immediately renew or extend the prescription, then it will really be important for you to get to a doctor who is more experienced in treating PANDAS. Just as a side note . . . I'm not sure how long your son has been taking the Anafranil, but I'm sure you'll keep a watchful eye on how he responds to that med. Mine was prescribed that briefly, and we did not have a good result as he became increasingly anxious while he took it.

Ah, but therein lies the exception that makes it a viable choice for your kids. It's the media's contention that EVERYONE should have the shot that raises my hackles!

The "classic" presentation is "overnight," i.e., very quickly. As noted by Dr. Susan Swedo, the lead research on PANDAS with the NIMH, however, the temporal relationship between infection/exposure and appearance of behaviors tends to change with the number of infections/exposures, and the maturation/development of the kid may play into how quickly behavioral changes become noticeable since, especially as they age, they tend to try and hide some of their fears and anxieties. So, bottom line, it varies. Many of us (myself included) look back now and realize we actually "missed" that first, "overnight" exacerbation because our children were too young, didn't have the verbal skills to express their discomfort and/or fears. Additionally, in our case, my son was classically asymptomatic for strep (no sore throat, no fever), so we knew he'd been exposed, but we didn't know he'd "caught" anything. In the end the exacerbation event that sent him over the edge and put us . . . finally . . . on the PANDAS path came some 8 or 9 years AFTER what was likely his first PANDAS episode. Now, Dr. Swedo has adjusted the PANDAS criteria to provide for a significant increase in certain behaviors (OCD, anxiety, tics, etc.) over a "short" period of time, rather than just an "overnight" onset of these behaviors. So, long way of saying, I wouldn't get too hung up on an "overnight" display of symptoms, especially in a child your son's age, since this is likely not his first PANDAS episode, though it may be the first that's been properly identified. I'm glad your doc has done a script for abx, and I'll be interested to hear how your DS responds. Is he only taking the Abilify in addition, or is he still taking the Zoloft, also? Dr. Tanya Murphy has authored a paper on SSRIs and PANDAS kids, the upshot of which is that, for whatever reason, PANDAS kids can be very sensitive to SSRIs and, many times, an exceptionally low dose is helpful while a "standard" dose is too much and actually activates (increases the OCD/anxiety) rather than quells it. That might be something to put into the "hopper" as you move forward along this trail. I encourage you to go through some of the pinned, explanatory threads at the top of this forum since there are a number of resources, research papers, etc. there that may be helpful to your family and perhaps your doctor, too. As for a pediatric neurologist, I would only go to one who is, in fact, not only aware of PANDAS but accepts it as a viable diagnosis; unfortunately, there remain way too many naysayers out there who can waste your time and money, and leave you in the lurch, as well. Among the pinned threads on this forum is one which identifies "Doctors who have helped us," and you might find the name of a local neurologist there. You can also check PANDASNetwork.org for sources, and/or Google "PANDAS Doctors," and you'll find a link authored by Beth Maloney (author of "Saving Sammy," a biography of her son's PANDAS journey) with a state-organized list of PANDAS-savvy practitioners. There is a world of information here on the forum, and perhaps some other California families will pipe in and have a doctor lead to share. Take care, and welcome to the forum!

Hayley -- Not to get too far off topic, but we did regular chiropractic work (not CST) with our DS when he was 15 mos. to 3.5 years for chronic ear infections, and it definitely helped, too. Timing was key, though . . . we had to get him in for an adjustment pretty much the minute we saw any signs of congestion, or else it would be too late. The older he got, the harder it was for us to stay ahead of the symptoms, so at 3 we finally went for the ear tubes ourselves. I try to be open-minded and remain curious about all sorts of different "healing" techniques; I admit to being most nervous about those to which a high price tag are attached! ;-)

I am with Nicklemama. I get absolutely crazed when I hear these "news" stories on the radio and TV about the necessity for the flu vaccine for the general population! To quote DS, OMG! What absolute bunk! If your child (and you, for that matter) can tolerate NAC, I highly recommend it as a flu prevention/reduction supplement. It's actually been studied for its effectiveness, and provided your kid is not one who has an adverse reaction to this particular amino acid, it's a much safer and saner alternative, IMHO.

Well, the Jarrow claims 5 billion sach b units, and that's what appears to be in the capsule; the only additive in this brand appears to be something called "bio-mos," the benefits of which are explained on this web site link: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-1049#.UjIrdtUo7aE

We've been using the Jarrow brand (get it from the Vitamin Shoppe) for years now. Very affordable, and it works!

Just looked it up. BIE = Bioelectric Intolerance Elimination I don't know . . . my "little red flag" is up, based on what I see on the web, but I'd be interested in anyone's experiences, also. It looks like another form of "energy work" which, depending on who you talk to, may or may not be efficacious. We tried CST (cranio-sacral therapy), for instance, and felt we'd been scammed; however, I know there are others who feel it was, in fact, beneficial. I have a friend who practices reiki and swears by it. To some extent, it may be at least somewhat dependent upon the patient's emotional/mental "buy-in," so if your kiddo is up for it, then . . . . Good luck!

I believe the prevailing theory is that an abnormally permeable blood brain barrier (BBB) allows irritants (microbes and/or antigens) into the brain space where they don't normally belong, and those, in turn, inflame the basal ganglia. But inflammation in the body or the brain can be caused by anything that irritates tissues, causing them to swell up in defense. So the goal is to help the BBB regain its strength and "bouncer" status, and calm the irritants and inflammation. I think I've read, too (someone double-check me on this) that it's thought that the BBB's increased permeability is the result of IT being inflamed to some extent, and thus anti-inflammatory measures are beneficial in multiple regards.

Migiganti -- Yes, by all means, get all of your titers checked! Your son sounds SO much like mine at that age, it is spooky! My son, too, never had a positive culture, and unfortunately, that put us off following up or aggressively pursuing PANDAS at the time, especially since we didn't have a doctor who recognized it or even accepted it as a valid diagnosis. Long story short, we didn't know to test antibodies/titers in the blood until a full 6 years later . . . 6 long years of dealing with the OCD, anxiety, separation issues, etc. that you've noted, even though he, too, had periods of relative health and "balance." Come to find out he really was fighting strep the whole time, as his titers were extremely elevated. I would start with the bloodwork and then pursue treatment, assuming the bloodwork shows what it seems likely to show. Good luck!

I guess I thought that went without saying! ;-)

So, where can I get some of that "skinny" bacteria, is what I'm wondering? :-)

It could have been purely psychosymatic, but yes, our DS felt as though the valerian root helped him face situations/moments that generally induced anxiety for him. And he had to have felt the results were measurable because the valerian root smells vile (like month-old sweat socks left inside a zipped gym bag!), and sensitive as he is to smells, he had to really WANT to take it in order to do so! Similar to tu4four, I think we did also pair it with melatonin for a time at night when DS was having bigger issues with sleep, the idea being the valerian root relaxed him a bit and then the melatonin would kick in and actually get him to nod off. You may find a combo is ideal, or that only one or the other will do the trick. I would just start low on the melatonin so your kiddo doesn't potentially experience a "hangover" effect the next day and have trouble getting going! Good luck!

We, too, had a very successful run with Augmentin . . . in our case, DS took the XR version ("treatment" dose, though only half the treatment dose recommended for active sinus infections and the like in adults), for nearly two years. When we finally did take him off, it was after that 2 years, and we weaned him very, very slowly. All previous attempts to take him off had been unsuccessful, not unlike Nicklemama's story, and we remain unclear as to whether that was because he was still fighting hidden infection or it was something else the Augmentin brought to the table, like glutamate modulation or the antidepressant characteristics associated with the clavulanic acid component of the med. There's another recent thread exploring this topic posted by T.Mom and some research along these lines posted there, too. My non-doctorly advice: if it works, stick with it. Nobody has all the answers on this crazy condition at this point, so we are required to be open to something of an "experiential" approach. So I would leave it in place as long as possible, make sure to provide plenty of probiotics to protect the gut and fend off yeast overgrowth and/or c-diff, and allow for a long, slow wean when you do decide to wean.

We have used valerian root in the past, but mostly during the daytime to take a little of edge off his anxiety about heading out the door to school, to a social event, etc. Never found it to really be powerful enough to induce sleep in our DS. Have you ever tried melatonin? About 1/2-hour to an hour before bedtime, this has been "magic" for helping DS fall asleep relatively quickly. There are also some time-release formulations if staying asleep is an issue. Re. Intuniv, DS was taking this for a short period, also. He, too, found himself dragging, especially during the afternoon, presumably because it was lowering his blood pressure? We found if he had a high-protein afternoon snack, it helped him stay "with it" better, though we eventually abandoned the Intuniv because any positive impacts seemed to fade over time. Good luck!

Another light-bulb moment, thanks Kayanne and TMom! Every time we tried to take DS off Augmentin XR during the first year to 18 months of his treatment, he would spin out within about a week, and we'd be forced to put him back on. It was only after nearly a full 2 years of the XR, and then a very long, slow weaning process (over nearly 3 months) that we were successful in taking him off without him snapping back like some sort of crazed rubber band! So the clavulanic acid theory makes perfect sense! TMom -- sorry your DD is in this tough spot at present. Hang in there! And based on our experience, maybe Kayanne has a good idea?

To some degree it's semantics, I suppose, but I don't think I'd be too quick to rule out many, many potential causes of inflammation. While I realize that keeping it simpler is probably better when attempting to explain the PANDAS phenomenon to the uninitiated, my current philosophy is "never say never"! I know that it is generally Swedo's take that it is the antibodies that cause inflammation, but since illness of all ilks can cause inflammation in various parts of the body, it seems possible that the mere illness . . . strep, myco p, lyme, etc. . . . could, even absent antibodies, inspire inflammation all on its own. I mean, what about those who are immune deficient, for whom sufficient antibodies are not present, whose various titers do not appear as elevated, but they're still suffering from these symptoms and behaviors? And anti-inflammatories are helpful? Certainly, they, too, are dealing with inflammation inspired by something, but if the antibodies aren't even present, then they're not behind it. JoyBop, just FYI, Swedo already has in hand one exemplary brain scan set (before PEX and after PEX) from one of her first patients that shows inflammation in the caudate nucleus and putamen of the brain prior to PEX, and then reduction of the inflammation after PEX. I think the current IVIG study is in the interest of finding out if similar impacts can be made by IVIG, and not just PEX, but the inflammation "theory," though certainly in a position to be strengthened and expanded upon, already has some empirical "roots," if you will.

You can try herbal anti-inflammatories like curcumin, quercitin and/or bromelain. Only thing is, they would probably need to be dosed in heftier amounts to equalthe more focused and concentrated properties of ibuprofen. They might also need to build up their efficacy over a time period. Omega's are also anti-inflammatory, so if your child can handle it, fish oil might be a good supplement to add, also.

I, too, will read in full and post any further thoughts, but here's what I take from a preliminary reading . . . I think this paper supports some findings reported previously regarding the glutamate-modulatory properties of beta lactam antibiotics. Some of us have surmised that these properties might have contributed to why ongoing/long-term use of meds like Augmentin XR were of such positive impact for our kids, Sammy Maloney, etc., above and beyond their antimicrobial properties. Also, only a preliminary read, but I'm not seeing the "negatives" you're concerned with, specifically, except potentially in being unaware of the potential CNS activating properties of these abx meds, and in that lack of awareness, unknowingly "doubling down" on some glutamate, GABA or other neurotransmitter interventions and in so doing, getting unwanted side effects? Or perhaps, as a number of us are increasingly suspecting, a person's inherent "make-up" via methylation/genetic mutations, some kids have a negative reaction to these meds while others have a positive reaction because some need the glutamate-modulatory properties of Augmentin, for example, while others don't, and rather their best intervention would focus on some other component or "link in the chain," as it were. Just thinking this might explain some kids' negative reaction to certain abx . . . .

Smarty -- With technology moving at the speed of light, our kids are using keyboards earlier and more frequently than ever, so by the time yours hits junior high school (likely), or certainly high school (definitely), typing as opposed to handwriting is not going to any kind of accommodation . . . it's going to be standard operating procedure for every kid in the class! We've already found this to be true. I know some bemoan the loss of the literally "written" word, and the loss of personal pride in penmanship that comes with it, but honestly, I think we need to play to strengths, rather than highlighting weaknesses. My DS's handwriting, in the best of times, has never been anything to write home about (pun intended!), and he's always been faster with a keyboard than a pen or pencil. It's less frustrating and less tiring for him, and it makes him feel more in control. So . . . keyboarding was a little more out of the ordinary in grade school and junior high . . . but now in high school, it's the norm, and DS is way ahead of many of his peers in terms of keyboarding skills and speed as a result of having gotten an early start. So, I would encourage the keyboarding/typing and ask that your DS be permitted to complete and turn in assignments in that format. In the end, I think it is a gift to him today that will continue to give throughout his academic career. So what if he never "learns" beautiful penmanship?! Unless he plans on being an MD with a prescription pad, or a calligrapher, I doubt that particular skill will matter to anyone, at any time, in his future. Good luck!

Amoxicillin is sometimes not strong enough to eradicate strep, or to prevent re-infection; there have been a number of cases of "breaking" through amox, and some, as well, of strains of strep that do not respond to amox. Since your doctor recognizes and treats PANDAS, I would suggest calling and perhaps returning for a follow-up. She might need a different abx to fully treat the infection. Good luck!

Well, I'll leave it to the "experts" like LLM to respond to what the mutation actually translates to, but that's not necessarily "bad" news, is it? I mean, I get the impression that 1) it's fairly common, and 2) now you know what you're dealing with, so you can start tailoring your interventions to the mutation so that they're more effective? Maybe this is, really, "good news" and "good news"!

I think maybe this article . . . not dissimilar from the one that LLM posted a couple of weeks back about "good" probiotics versus "bad" ones . . . is sort of aimed at the explosion, if you will, of the grocery-story acidolpholus products ("Pearls," etc.) in the marketplace, complete with mainstream advertising about their benefits, and people having a tendency to rely almost solely on them for GI health. We've not relied heavily upon acidolpholus since we found out it's readily killed off by antibiotics, and that's when the probiotics became so important and valuable, when DS was taking the abx. In the end, I would think that too high amounts of many things could have unforeseen and unintended consequences, and perhaps if you were relying solely on acidolpholus . . . giving your kid 3 or 4 Pearls or doses daily or something like that, then there might be cause for concern. But if you're mixing it up and/or using blends, is there really enough acidolpholus in one of those formulations to cause trouble? I don't know. Regarding your DD's stomach problems and constipation . . . we had some of that early on, too. Initially I thought it was just DS's OCD getting "stuck" on his GI and elimination habits, but then we decided to reduce the volume of probiotics, and he seemed to respond positively to a slightly lower dose -- less gas, less rumbly, etc. For him, there seemed to be that "tipping point" where benefit went to bother, and the other way 'round. Don't know if you've experimented with either other types of organisms or dosage levels? If so, have you noticed anything? I'll also say, we decided to try some bentonite clay, too . . . not in copious amounts, but with the thought that, especially when taking abx, his gut might be collecting all sorts of extra "detritus" that could stand to be eliminated. He responded to the clay so well that, for a while, we got in the habit of using it every other day, and then went down to once per week, when he would start to complain of gas or bloating again, etc. It seemed to work wonders for those sorts of issues. We haven't used it in some time, but it's still in the pantry!

Thanks for the compliment, though there was far more practicality and far less genius involved in the school night curfew. From birth, this kid has always required a lot of sleep, and he is simply not at his best -- emotionally or mentally -- without a decent night's rest. So homework has always played second fiddle to two non-negotiables: sleep and meals! I hope you're right . . . I hope the self-limiting impacts of the real world clock will pick up where we leave off as parents and coaches. He's had a tendency, however, especially when he was younger, to live his life as though the clock would just stop ticking if he needed it to: if he wasn't "ready," if he needed "just 5 more minutes," etc. He's gotten past all that, thankfully, with the exception of this reading stuff. This, too, shall pass! (Crossed fingers!)