MomWithOCDSon

Yes, ours is, though at the higher, non-generic co-pay level. We have a BCBS PPO plan, and my co-pay for the XR was $50 for a full month's supply. Interestingly, the co-pay is the same, whether the doctor writes the script for a 10-day, 2-week or full month's supply, so I ask for the largest/longest prescription she feels comfortable providing!

Age 6: Germs Age 7: Germs Age 8: Germs Age 9: Germs Age 10: Germs Age 11: Germs, dirt and grease Age 12: Germs, dirt and grease Poor dog has not been touched, let alone petted, by her "human brother" in over 5 years; she's a beagle, complete with oily coat and a nice, distinctive musk!

I wonder the same thing, and I'm in the process of going through my son's medical record history, from birth up to now, to see if I can pinpoint when, what, why and how. He had chronic ear infections from about 18 months until we had tubes put in his ear drums at 3. At about 2 to 2-1/2, we recognized that he was hyper-sensitive to some things, like noises and the feel of his clothes, and that he could be hyper-reactive, also, to spontaneous changes in his routine, etc. Could the ear infections have begun all of this? The OCD was diagnosed in first grade when he first had a major meltdown at school that he couldn't move on from, and then the raw, red, over-washed hands surfaced just days later. We sent him to CBT, and he did well until mid-year in second grade, when I think we saw the first "dramatic onset" event; in the course of about 3 weeks in February, he went from being pretty much "like any other kid" in his class to having dramatically regressed in almost all his skill sets, academic and social. He basically forgot how to read and fell more than a full grade level in terms of that skill. Again, we'd heard of PANDAS but thought that since he'd been diagnosed with the OCD over a full year prior, he didn't meet the "dramatic onset" criteria, so we didn't pursue it at that time. As I think about it, the story has been more or less the same over the years, with setbacks and leveling off (waxes and wanes), none of which were ever tied to a strep infection because he is completely asymptomatic (that is, if you ignor all the neuro-psychiatric signals, which unfortunately, we all did for far too long! But it wasn't until this latest onslaught of OCD behaviors that were entirely "untameable" by the means we'd come to rely upon over the last 6 years that we circled back around to PANDAS. Some people (me and his dad) are just late bloomers, I guess.

In reference to this thread, I belatedly recalled that my uncle is a pharmacist with the National Health Service and has been for over 40 years. So I asked him what he thought on the subject. His reply follows: The AugmentXR 1000mg of Amoxicillin/ 62.5mg of Clavuanate Acid per tablet has less Clavuanate; however the daily dose is two tablet every 12 hours (daily dose of 4000mg/250mg) which is greater than the Augmentin formulation which is generically available and cheaper. It is interesting that the generic brands are made by the original drug company.Daily dose of Augmentin 875/250mg is every 8 hours. The daily dose is 2625mg/375mg. There is some evidence the higher amount od Clavuanate could cause some jaundice which is reversible. There are several web sites that can give you good data. Also you can google augmentxr and get several sites to read. The one I use is relist.com. If Lucas is not responding as well as you think he should, then the AugmentXR would be the logical choice. But that decision should be basde on blood lab work that give concentration levels and liver function tests.

Well, I think you're on the right track with the exposure response prevention program, just continually exposing him to what makes him anxious and see if he can get the anxiety to back down quicker and quicker upon each exposure, and continually, slowly "turning up the heat" on that exposure. When you say that he won't sit down on the school toilet, even with his clothes on, though, I wonder if maybe you could forego that altogether? I mean, if the goal is to get him to pee in the school bathroom, is sitting on the toilet -- clothed or without his pants -- even part of the picture? I ask this because my son is similar with regard to his particularity regarding bathroom habits. He prefers to go at home only, but he will pee at school or in public washrooms because he can stand, have minimal contact with what he thinks might be dirty or contaminated, and get out of there relatively quickly. He will not, however, sit to poo at school or in public restrooms, and this will be a next step for us. And the thought of sitting down on a public or school toilet, in his clothes, would be totally repulsive to him. Then his clothes would be contaminated and he wouldn't be able to sit anywhere else before changing his pants because he would just spread the contamination. Another suggestion might be to ask if there's an alternative to the regular kid's bathroom at the school for him? Maybe it's not the idea of going pee there, but the environment itself that makes it harder for him. Is it messy? Does it have an odor? Does he maybe (like my son) not trust his peers (at school) or strangers (in public places) to be duly respectful and clean and therefore suspects that these rooms are just way too disgustingly covered in dirt and germs? Then maybe you could arrange for him to use the washroom in the school nurse's office or another more private and "adult" place that, merely by its smaller size, infers that not every Tom, ###### and Harry in the joint has infected the place with some of their own DNA?

A few days ago, Faith dropped an article reference into a thread about microbes, as opposed to just strep, being a possible agent for some behaviorally-revealed disorders. It was a Scientific American special edition on the brain, and the name of the article is "Infected with Insanity." Is it possible your son's "turning back the pages" could be a reaction to some other agents he's encountering, such as viruses? As for the "shifting" you're describing, where at one point in time the "package of behaviors" includes his not wanting to bathe or wash his hair, but then a new "package" surfaces which includes some of the previous behaviors but exempts that one, we see that constantly in our son. We call it "Whack-a-Mole" because as soon as you "beat" one behavior, something equally distressing or obnoxious will pop up somewhere else! And then, just when you think you've rid your lives of that previous behavior once and for all, IT will come back! Aarrgghh!!!

I think you are right. When this all kicked off and Tom had his MRI done it showed he had quite a bad sinus infection which he didn't really complain much about. May well be he has another, especially since he is getting alot of headaches lately that I have thought have been due to his head and eye tics. I know it won't to any real harm doing this I think I am just scared of doing the wrong thing. Thanks for the support. Ros For what it's worth, I agree with Ellie. Frankly, many of us State-side (myself included) are basically self-prescribing abx in the beginning of our PANDAS experience, too, even though the legalities here dictate that we convince someone with an "MD" after their name to actually write the script! Until/unless you can get to a PANDAs expert, most regular pediatricians don't know much about PANDAS and don't know much about medication protocols with respect to the PANDAs either, so they're relying on folks like us to tell them what is "standard" and what we want to try for our kids. I don't think you have anything to lose, and potentially an awful lot to gain. You're not going to create a "Superbug" with one month of abx, and you just may put your son on the road to recovery! Good luck!

Hey Michael -- I'm not sure, but I think we qualify as "chronic." Son diagnosed with OCD at 6, waxes and wanes (or exacerbations) throughout the last 6 years and only moved on to PANDAS about 4 months ago. We are about to begin our third month-long dose of abx, and we ARE seeing improvement . . . slow, saw-toothed, but improvement nonetheless. I think you're right though . . . I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors? I'll be interested in hearing what Buster has to say, also!

Hi Hope! Well, if you've been lurking, you've already seen a lot of our stories and you must've recognized the similarities between some stories here and your own. PANDAS seems like a definite possibility for your kids, so persevere! Strep tests can give false negatives. Titer counts reflect recent exposure but not necessarily the actual presence of strep; furthermore, labs' ranges for what is "normal" vary substantially, but the "normal" range quoted by my lab for ASO titers topped out at 170, so at 250, your child's would be above normal, if not excessively high. But perhaps even more importantly, you have a recorded history of symptoms and then relief from symptoms during antibiotics. This is a meaningful pattern that you should call attention to. There are tons of threads here with FAQs, PANDAS basics, links to other PANDAS information, etc. that you could print out and take with you to your next doctors appointment. You might also check the thread regarding doctors familiar with PANDAS in your area, or even consider a phone consultation with one of them if none of them is geographically proximate to you for a face-to-face visit. Good luck to you! And keep reading here; I'm still relatively new to this stuff myself, but I've gotten quite an education in the last few weeks, just by participating here, reading, asking questions, etc.

Yes, Keflex is an antibiotic; my understanding is that it is commonly prescribed for infections like sinus and UTI. Again, a little out of my league/over my head, but there are other threads on the topic here in the forum. But intracellular is when the strep gets inside a cell and sort of "hangs out." Then, when the cell expires, the strep is released and becomes active again. I don't know if it shows up in any actual blood test. Maybe elevated ASO titers on a consistent basis would be indicative of intracellular strep since titers reflect recent exposure?

I'm just another parent and no medical professional, but that level of amoxicillin seems potentially low. How long has he been taking it? Have you seen any improvement at all, or "shifting" of the symptoms, even? It seems to vary from kid to kid, history to history and even location to location. But overall I haven't seen much success with amoxicillin for PANDAS. Buster and some others refer to the fact that amoxicillin is not thought to be capable of addressing "intracellular" strep infections, so it doesn't work in many cases, especially those that have been ongoing for some time. It seems the common abx noted here are Augmentin and Azithromicin, as well as some Keflex. My son is 12, 5'2", about 125 pounds, and is on 2,000 mg. Augmentin XR (1,000 mg. doses, twice daily), just as a point of comparison.

I was wondering exactly what too much clavulanic acid might do to someone, so I decided to "Google" it. I see references to gastrointestinal distress (which my son has experienced), but a reference to liver toxicity and drug-induced hepatits was alarming: clavulanic acid hepatits

No, you are not alone! I am COMPLETELY at sea, myself! I'd like to add my thanks, though, to folks like Buster, SFMom, EAMom, Vickie and Chemar who post all those articles, links and plain-spoken explanations for those fine arts majors out there like myself who barely know a chromosome from a rhysome, let alone an exotoxin from a cytokeine! Thanks!

Thanks for the links, Alex. That's exactly what I'm looking for! Good luck with Eli and the IVIG. We've done a month of regular Augmentin at 875 mg./2 x day and 3 weeks of Augmentin XR at 1,000 mg./2 x day and we feel the XR was much more effective. I was just tonight successful in obtaining another 2 months' prescription for the XR from our ped, so I'll let you know how that goes. We are somewhat more fortunate in that our son's primary symptoms are OCD behaviors that, while annoying and sometimes intrusive, are in sufficient "remission" that most parts of his day are "doable," if not EASILY doable, so we are going to try sticking with the abx for a while rather than moving on to IVIG. I'll let you know how it goes!

After 2 months on abx, we took our son off exactly 10 days ago. We had initially wanted to try a lower, prophylactic dose, but he'd had enough of the tummy troubles that accompany the abx (despite probiotics), so we relented and agreed to take him off and see what would happen. Yesterday (Day 9 post-abx) he had two major meltdowns of the like we haven't seen in a while. It was also only his second day back in school after a nice two-week-long holiday break, and school is a major trigger for his anxiety, so it may be too early to deduce that the lack of abx was a sole or even major contributing factor. The jury is out . . . sort of. But then this morning, when I was trying to help him through some math homework, he had another one of the old school, avoidance-related, full-scale meltdowns from the pre-treatment days. Crying, heavy pant-like breathing, screaming, and that fast, run-on chatter that's like he's on speed. That's when I see it: his right hand is gripping his pencil, hovering over his notebook, but his left is repeating a movement over and over again, seemingly without any awareness on his part. He's splaying out the fingers of the left hand, and then rolling them up toward his palm -- sort of a semi-fist -- and then splaying them again and rolling them up again. The fist never gets tight, and the movement goes on and on. It reminds me of the "piano playing" hand movements I hear about associated with SC, except that I've never seen this before in my son. Has anyone else seen anything similar in their non-SC kid?

Michael -- So sorry to hear this news. Honestly, it feels as though one of our own "soldiers" has fallen. Please let us know how things move from here and how your next steps pan out. Hang in there . . . it WILL get better!

Thanks, Alex. That's great info, and something I hadn't been able to get a clear answer on before. Do you by any chance have an article or reference for the information regarding the XR? I'd like to be able to take it with me to the next ped appointment if so. Thanks again!

In the past, for us, an exacerbation was typically a month or two. We, too, however, have been dealing with this for a long time (6+ years), and the one he's in now has been going for about five months. It's not yet entirely waned, though we, too, see bright, shining days of 90%+! I keep holding out hope!

We have tried both regular Augmentin and Augmentin XR. Our best results were with the XR, but our son was taking that 1,000 mg. dose not once each day but twice, so he was actually getting 2,000 mg. XR while on the dosage. Not only were his symptoms improved on the XR versus twice daily dosing of regular Augmentin at 875 mg., but the XR did not seem to upset his stomach or gut nearly as much. Interestingly enough, the prescription of Augmentin XR we were given did have a "split line" down the middle of the enormous horse pill, and no one warned us against breaking them in half. So once we'd completed 10 days on the full dosage, we did try cutting him back to what we thought would be 500 mg. Augmentin XR twice daily. Didn't seem to be any negative side effects of breaking the pill, but now I'm wondering if it was completely ineffective because by doing so, we'd breached the special outside coating? So, when taking sammy dose, only takes Augmentin XR, any dose below that should be regular Augmentin? Any more input about this? Personally, I cannot recommend a regular Augmentin 875 dose twice daily because it really seemed to do a number on my son's digestive tract. But more to the point, I think, to some extent, you're limited by the dosage available via the manufacturers. I'm not sure what increments the XR form comes in beyond the 1,000 mg., but I know that regular Augmentin tops out at the 875 mg. level, at least according to my ped and pharmacy.

I don't know what abx you're using, but my understanding is that most any abx will kill regular acidolpholus, and a long-acting one like time-release Augmentin (XR) or azithromax (long half-life) may well kill off much of the beneficial bacteria in his gut even if you're trying to stage the abx and probiotic doses hours apart. My son will swallow pills so we've been using Flora-stor and a Trader Joe's Super-Acidolpholus which contains various yeasts (I can't even begin to spell it, but it's a favorite among some other posters here . . . S. Bach, or something like that, for short?!). These are capsules, so maybe you could pop them apart and mix the contents in with juice or yogurt or something? Also, I've seen a product called Culturelle that comes in packets of dry powder and is specifically meant for mixing into foods and drinks. That's on the shelf at the Vitamin Shoppe, and I know this is what Beth and Sammy Maloney used.

We have tried both regular Augmentin and Augmentin XR. Our best results were with the XR, but our son was taking that 1,000 mg. dose not once each day but twice, so he was actually getting 2,000 mg. XR while on the dosage. Not only were his symptoms improved on the XR versus twice daily dosing of regular Augmentin at 875 mg., but the XR did not seem to upset his stomach or gut nearly as much. Interestingly enough, the prescription of Augmentin XR we were given did have a "split line" down the middle of the enormous horse pill, and no one warned us against breaking them in half. So once we'd completed 10 days on the full dosage, we did try cutting him back to what we thought would be 500 mg. Augmentin XR twice daily. Didn't seem to be any negative side effects of breaking the pill, but now I'm wondering if it was completely ineffective because by doing so, we'd breached the special outside coating?

Iboll -- I know what you mean about something just "clicking" upon hearing Beth Maloney tell her and Sammy's story. The same thing happened with me. I DO think you're on the right path with PANDAS. There is parent after parent on this forum with kids who have low titers but have other classic PANDAS symptoms and are responding to PANDAS treatment. If you're doing the research, then no doubt you've seen the FAQ thread here on this forum. My son is the opposite: never tests positive for strep but has titers out the whazoo. I don't have any experience with medical care in China, but from what I know of eastern medical practices, it seems to me a practioner there might be even more inclined to consider PANDAS treatment than some western docs, as they are more familiar with practices which are considered "alternative" here in the west. I would print off as many of the research articles and FAQs as possible and take them to an appointment with me. As for the correct antibiotic or correct dosage, it really does seem to vary from person to person, and even from location to location. Different areas of the U.S. have different strains of Strep A which respond better to various antibiotics. So it can be hard to tell what will work best. Like you, in terms of treatment protocol, "Saving Sammy" was the documentation I had in hand when I went to see our pediatrician, so I literally gave her a copy of the book along with a timeline and list of the medications Sammy was given. So she started my 12-year-old son on Augmentin in keeping with Sammy's dosage. Good luck to you!

Someone a week or so ago made a post asking about Namenda . . . I can't recall if it was for tics or OCD. Interestingly, when I looked that up, Namenda appears to be an Alzheimer med, also.

Perhaps slightly on a tangent, but . . . I'd just like to say that I grew up among a menagerie . . . pets of absolutely ALL kinds, from tropical fish to horses. AND we had a Mexican yellowhead parrot named Chico who was lovely, funny (sometimes downright hysterical) member of the family . . . until he hit puberty! (Seems humans aren't the only species that turn into monsters at the approaching of the Big P!) My mom had always been his favorite, and he could do her voice perfectly; they exchanged kisses and sweet words, he would let everyone in the family hold him, ride on the dog's back, etc. Then when puberty hit, all he wanted was a mate! And he got nasty with everyone else! Nearly took a chunk of my mom's cheek out with what used to be a standard "kiss" on the cheek! So after almost 14 years, we had to part with him to a breeder who would mate him. Our family got a beagle when my son was about 18 months old, so they have basically grown up together. We have pictures of him at 2 and 3, actually holding her and petting her. I'm guessing, however, that he hasn't actually touched her again since the age of 6, when he was first diagnosed with OCD. How were we supposed to know that this sweet, well-behaved puppy would turn into a full-blown, greasy hound dog with a musk and oil to go with it that re-appears 5 minutes after a bath?! Our son can't stand to touch her now at all! That tends to prevent hitting or mistreatment!

Oh man, kids never cease to amaze me. Here, he was operating out of some logic after all . . . sad logic, but logic.