MomWithOCDSon

We used "Ultimate Flora" made by Renew Life (you can get it at Whole Foods or the Vitamin Shoppe, in their coolers). It's a high-quantity, multistrain probiotic.

I've never seen any warnings with respect to "overdosing" probiotics, though in our experience, too much can lead to some extra gas and bloating. There's a "sweet spot" somewhere in there for every person, though I suspect it's highly individualized based on each person's gut biome. What does the label on the bottle of Florastor recommend? Once we found the Jarrow brand of sachromyces boulardi (same organism in Florastor, but considerably less expensive), we stopped buying Florastor. During abx use, we were giving our DS one sach b. capsule, twice daily. We were also dosing other probiotic strains at the same time, though. My only concern with respect to hefty doses of sach b. specifically is that it is very effective against diarrhea, so potentially once could, I suppose, wind up with some constipation if in too high doses? But again, I expect that would depend upon diet and other supplements, meds, etc., as well. Good luck!

I'm getting a mental picture of your "nervous breakdown" in the CVS Minute Clinic, LLM! Once the laughter subsided, though, I realized that is a BRILLIANT idea! Those nurse practitioners are generally stacked up with folks waiting, and, in our experience, they'd prefer to err on the side of "give 'em a prescription and they'll get out of my hair" than argue with you about it and eat up more time. That one's going in my back pocket, should I ever need it! Thanks!

Are you using only 0.5 mg. of melatonin for a 14-year-old during a flare? Is he small for his age? While you probably wouldn't want to use it long-term, I would think you could certainly increase the melatonin dosage during a flare to improve his chances of sleep. We have used up to 3.0 mgs. without negative side effects, but even just doubling the 0.5 to 1.0, I would think, might make a noticeable difference. You might also try valerian root; you can get it in tea form (if he'll drink tea) or in capsules. Unfortunately, it stinks (like dirty sweat socks!), but it is effective at calming and readying you for sleep. Finally, if he's like a lot of kids his age and either watching TV, playing video games, or reading on a tablet or Kindle or something right up until bedtime, there've been recent studies that demonstrate that the blue light spectrum that these screens emit curb your body's production of natural sleep hormones. So maybe cut back on that or turn them off a good 30-45 minutes before lights out, or switch the polarity of the screen (read white words on a black background, rather than the other way around) and see if that helps at all.

Mama2alex has a great idea; I know you want to be proactive (rightly so), rather than reactive, but be prepared if you have no other options and are left to report upon your DS's returning PANDAS behaviors to Dr. K. I would also ask him, specifically, what negative side effects is he referring to with respect to renewing the abx? I would, however, seek out another doctor who might extend your abx for you during the 3-week lag until IVIG. An integrative doctor, as Mama2alex suggested, might be your best bet. I am aware that this is generally Dr. K.'s protocol; he is not a believer in extended abx use. In a couple of speaker panels that I've attended over the years, he, Dr. Swedo, Dr. Latimer and Dr. Murphy have all noted that prolonged abx use is not ideal primarily due to the increased risk of developing c-difficile.

Have you tried specific strains of probiotics in order to see if there might be one or two she tolerates better than others? Sachromyces boulardi (sach , for instance, is a beneficial yeast that helps crowd out other problematic yeasts like candida; it is sold solo strain by Jarrow and in a pricier version at your local pharmacy as Florastor. Lactobillus GG (Culturelle) is another single-strain probiotic that's readily available and usually pretty well tolerated. That would be my primary concern about longer-term use of abx. When my DS was on abx, we wound up keeping him on for nearly two full years because every time we took him off, some of his behaviors would return. In the end, we wound up weaning him off very slowly over the course of about 4 months . . . decreasing the dosage slightly and leaving it in place for several weeks before we decreased it again. Only when we could see that he could hold behaviorally did we figure it was the right time to continue to move forward with taking him off. So long as she's eating well and tolerating the abx well now, I wouldn't think there'd be a whole lot of concerns regarding her stomach. But the health (or lack thereof) of her gut biome would concern me if she's not taking any probiotics. Without adequate flora there, she may have trouble absorbing nutrients, and the risk of c-difficile would seemingly increase, too, without probiotics and continued, prolonged use of abx. That's one of the biggest concerns voiced by some of the PANDAS professionals in various panel discussions. And, finally, this is a tough time of year to remove the abx from your DS's arsenal, I would think. Strep season. Winter. Kids corralled indoors more than out because of the weather, sharing all their lovely germs. Good luck to you!

If you were to try and keep him home through "strep season," I'd think you'd wind up keeping him out of school much of the school year! At least he's in middle school rather than grade school, so I imagine incidences of strep decrease somewhat at his age, but when my DS was 12, someone in one of his classes, or one of his friends, would have strep it seemed like every other week! There are reports of "breakthrough" strep infections, even when a kid is on abx, so you do want to be vigilant. Is he on treatment dose or prophylactic dose? I would talk with your doctor about it. The thing is, with the speed at which it can spread and the staggered incubation periods among kids in the school, it will be hard to know when to keep him home "prophylactically," and when it's likely safer for him to attend. So I would see if he can continue to take a good dose of abx through the winter months, at least, make sure he's practicing good hand-washing and similar skills, and if you know his lab partner has strep, then keep him home for the day. It's dicey, I know . . . hopefully he's old enough now, though, that he can tell you if he's feeling "off" or any other signs that he's taken on an unwanted bug. Good luck!

If you child has any anxiety-type PANDAS/PANs behaviors, I would be wary of stimulants; our psych felt those were a bad mix with anxiety, tending to increase it, generally. We tried one of the non-stimulant meds for a short period with our DS when he was a little older than yours -- around 8th grade: Intuniv. Straterra is another one. We initially thought it was helping his attention somewhat, but it really lowered his blood pressure at times, so he would get dragged out by the end of the day; he had to have snacks on hand. Anyway, after about 3 months of taking it, we re-assessed it, and no one -- not DS, not us, not his teachers -- could really see an palpable difference with it, so we stopped it. Never went back, as his behaviors improved all the way around as his health returned. Good luck to you!

Glad to hear it! But yes, OCD is symptomatic of PANDAS/PANs for many of us.

Here is a list of doctors across the country who've helped us with PANDAS/PANs. It's a link within the Pinned Threads at the top of forum; you might find additional items there that would be helpful, as well: http://latitudes.org/forums/index.php?showtopic=5023 From our personal experience as well as those of many folks here on the forum, anecdotally, I think it's unlikely that a standard neurologist (even a pediatric one) is going to necessarily be receptive to, let alone helpful regarding, PANDAS/PANS. Unfortunately, much of the traditional medical community remains "territorial" about what is neurological, what is psychological, what is immunological, etc., and thus many tend to scoff at developing fields of study and inquiry, such as PANDAS/PANs. Once again, for more feedback in that regard, you could search the forum with the term "Neurologist" in the search field and read about some others' experiences in that regard. If there's no one specifically in the doctor's list above in your area, I would secondarily suggest you try an integrative medicine practice. Those folks tend to be more holistic and willing to think outside the box when it comes to what ails us, and not necessarily feel bound by the constraints of any individual specialty. Good luck to you!

Interesting. I've been following an "anti-inflammatory diet," and most of these nightshades are on the list of "don't eats," though blueberries were not. Hmmmm.

Hi! My DS didn't really experience a complete change in eating habits necessarily; he just became less willing to eat at all, and because his primary PANDAs manifestation was OCD, his fears began to take over at the dinner table . . . is this safe to eat? Is it healthy? Is the texture something I can deal with? Stuff like that. I will say, though, your DS's behavior . . . asking for something he's traditionally liked to eat and then deciding, in the middle of consuming it, that he can't . . . sounds to me like a form of OCD behavior, potentially. A form of what's known as Scrupulosity -- being concerned with behaving with the highest moral and ethical fiber possible. More commonly manifesting as a concern with pleasing God when someone is raised with a strong religious background, Scrupulosity can take a myriad of other, less-traditionally-religious forms, but always has to do with doing what's "right." Since your DS has professed his love for animals, and has likely heard or read somewhere that if you truly love animals, then you won't eat them, he's torn between his known pattern of behavior when it comes to food choices, and this sort new body of "thought" that's invading his thinking. I would just keep an eye on it as, as you've noted yourself, some kids fairly suddenly become vegetarians out of a sincere, non-OCD-based decision-making process. But maybe just be aware that Scrupulosity does fit within the OCD framework, and it isn't always about God, Christ or church dogma. If you see his "ethical/moral" thinking start to expand significantly beyond the food issue, then that might be a clue there's some OCD holding hands with the PANs/Lyme. Hopefully, the abx will continue to make themselves known to his body and his brain, and any of these atypical behaviors will subside. All the best!

The link won't let me forward past Page 13? Never mind! I guess the journal itself was just still downloading! I'm now at Page 17 and awaiting further forwarding capability. So, don't get discouraged if, like me, it takes a few minutes before you can get to Page 48! Thanks, bsimon3!

I'm wondering if you might want to lighten up on the Florastor . . . maybe dose it only half as often as you currently are? Sachromyces boulardi (FloraStor) is known for being effective against diarrhea, so I'm wondering if it might be inadvertently contributing to the constipation?

Not a chance. Closest thing would probably be USF, where Dr. Tanya Murphy does a great job of looking after PANDAS/PANS medical needs, and her colleague, Dr. Eric Storch, and his team are aces with the therapeutic/behavioral side (OCD, especially). Good luck!

Just wondering if anyone here has dealt with a condition known as Chronic Functional Abdominal Pain (CFAP) in their kids? And if so, do you have any research, resources or experiences you could share? A good friend of mine's 10-year-old DD was just diagnosed with this and, never having heard of it before, I looked it up. Not unlike PANDAS/PANs and a number of other "clinical" diagnoses, this seems to be a "diagnosis of exclusion," i.e., there's nothing structural or biome-wise causing chronic pain in the gut? Then, here, take this anti-depressant, try meditation, and call me in a week and let me know how it's going. I can't find anything that suggests an auto-immune genesis or component to this condition, but when my friend told me about it, alarm bells went off for me. Incidentally, the DD's latest "event" was on the heels of having contracted two viruses that went around her school and her family, neither of which did anything other than lay her siblings and parents low for a few days, but she wound up in the hospital because of the pain that followed. Poor kid's missed 6 weeks of school, is completely incapacitated, and her parents are about to lose it, as well, with the stress of it all. Any information or suggestions gladly received! You guys are the bomb when it comes to these "medical mysteries." Thanks!

I'm sorry, but not surprised. So few doctors are willing to look outside their own little boxes and as long as the term "rare" is tossed around for PANDAs/PANs, I fear we're all going to face this sort of skeptical, "don't believe everything you read on the internet" kind of response. Our pediatrician who, in the end, helped us a lot with abx and repeated renewals, remained skeptical of the PANDAS dx all along and even more skeptical of some of the "PANDAS specialists" who were recommending treatments like IVIG and plasmapheresis as she thought those were "extreme measures" for a condition that was still subject to controversy and ongoing research. She recommended we see a neurologist, also, but I'd gathered so many horror stories from folks who'd seen the more prominent neurologists and infectious disease doctors in our area, I couldn't bring myself to take DS to one. I don't know what you can do about any notes she's putting in your DS's electronic file, except to maybe ask your other doctor to make his/her own notes that openly contradict the whole "psychiatric" bent of the neurologist's findings? What tests were actually performed? MRI? Spec scan? PET scan? Can you take those to another neurologist for a second opinion and, frankly, select one that you KNOW in advance is not oppositional to PANDAS/PANs from the get-go? Finally, as for CBT and other psychiatric interventions, I will offer that my DS has definitely benefitted from them, in addition to the medical interventions by way of abx, diet and supplementation. So I wouldn't necessarily dismiss it, especially for a 16-year-old who's intellectually prepared to take in the information and coaching. But it can be a lengthy and laborious process, for sure. I just find that implementing the tools and strategies that come via the CBT help my DS (and us, as his family) work through anxieties and OCD behaviors when they crop up now and again in response to an immune event (virus, allergies) or stressful situations. Perhaps now that your DS's medical condition is improving a bit by virtue of the abx and steroids, he might be more receptive to what a good CBT therapist could bring to the table? Sorry again, but hang in there and follow your gut!

I would think a neurologist visit will rule other things out, and an MRI may identify areas of the brain that are suffering from inflammation, as well. There's another neurological diagnostic tool -- a PET scan -- that some doctors at Detroit Children's Hospital/Wayne State have used with respect to PANDAS and OCD in kids. http://pandasnetwork.org/petscanresearchfindings/

Yes! Kids can be unresponsive to strep infections in the classic, physical way but display behavioral symptoms as a result of the immune response! My DS was/is exactly like your son; he's never had a classic strep throat episode in his life, but his titers were exceptionally high when we finally had them tested. And once we knew what to look for, we realized he was like a canary in a coal mine with respect to incidences of strep among his friends, classmates, family, etc. I would suggest journaling regarding behaviors, as, with kids like ours who will likely never have positive strep cultures, beyond titer blood tests, this is the only way to document temporal links between the immune response (behaviors) and strep exposures. A published example of this asymptomatic stress response is in Beth Maloney's book "Saving Sammy," a seminal account of PANDAS in a young boy.

1. Klaire probiotics is a good brand and popular among many here; there are other, less expensive brands that you can find at Whole Foods or the Vitamin Shoppe, also. The important thing would be to include some probiotic strains that are impervious to antibiotics, like lactobillus GG (found in Culturelle brand) or sach boulardi (found in Florastor or a Jarrow brand available at Vitamin Shoppe or Whole Foods). Acidolpholus, a common probiotic found in those "pearls" at the drug store, some kefirs and yogurts, etc. can be killed off by abx, so these would need to be consumed several hours apart from abx and supplemented by some of the strains that hold up better against abx overall. 2. Yes, many of us have used ongoing abx for both protection and other benefits, as well as using abx upon strep exposure (even if no medical signs of strep in the kid); some have benefitted from a short burst of steroids, as well. I know parents who have "donated" air cleaners to their child's classroom and similar things, but unless your kid is okay with living in a bubble, it's really tough to entirely guard them against illness or exposure. Not unlike rheumatic fever cases for which patients are given abx pretty much through puberty to protect them, some PANDAS/PANs practitioners have referred to this illness as "rheumatic fever of the brain" and addressed it similarly. All the best!

I would assume this sensory issue has something to do with inflammation in the brain? I've not heard of nor experienced this particular variety of sensory issue, but it seems to me to be reasonably consistent with the sorts of issues that have been reported as occurring during a period of inflammation or encephalopathy. Have you, by any chance, read "Brain on Fire" by Susannah Calhanan? She experienced some very unique yet oddly familiar sorts of symptoms during her PANs-like illness.

We're one of the families who is squarely in the pro-abx camp! And yes, Augmentin XR was the key to our DS's return to functionality. Here's the thing about antibiotics, from my perspective. Abx are now being found to have some qualities that can be beneficial to people, above and beyond fighting microbes. Beta-lactam antibiotics, like Augmentin, are thought to have glutamate-modulating properties. And I believe that it is cephalasporins (?spelling?) that are anti-inflammatory. Furthermore, the clavulanic acid component in Augmentin has been ascribed with anti-depressant and anti-inflammatory characteristics. Given as part of the issue with a neural auto-immune condition like PANDAS is the permeability of the blood brain barrier and thus the microbes' and titers' access to brain spaces that the BBB would ordinarily keep them out of, ANY intervention that is beneficial to reduction of inflammation and return to health of the BBB is worth exploring/utilizing. Sammy Maloney (of "Saving Sammy") was on antibiotics for about two years (Augmentin XR was a turning point for him). My DS was on Augmentin XR for nearly two years before we weaned him off very slowly because, as you've noted, every time prior to that in which we tried to cease abx or even trim them back substantially, his behavior would deteriorate. In reality, Augmentin XR is LESS strong than a number of other abx because the amoxicillin is blended with clavulanic acid, and the formulation is time-release. Sammy Maloney and my DS took 1,000 mg. of XR twice daily for well over a year, to no ill effects and with only positive behavioral responses. I'll note that my DS was adult-sized (90 pounds) when he started this regimen, so technically, he was large enough to handle an "adult" dose of the XR. If you look it up, the standard treatment regimen for adults who have sinus infections and the like is DOUBLE what my DS and Sammy took: 2,000 mg., twice daily. So I have trouble buying the "too strong" response. It sounds like someone is just looking at the milligrams and not really studying the actual protocols. Unfortunately, many of the notable PANDAS/PANs researchers and doctors continue to warn against prolonged use of abx for these conditions (including Swedo and Latimer); however, their primary concern has been put forward as incidences of c-difficile, rather than the "abx resistance" that some practitioners warn of. I know that c-diff is a very real and legitimate concern, so it's definitely something to be aware of and guard against. We, and most folks who use abx for prolonged periods, also use good quality probiotics in significant quantities to help protect the gut and repopulate its beneficial flora. Follow your gut and all the best to you!

Dr. Swedo of the NIMH (leading PANDAS/PANs researcher and advocate) has noted that it is the direction of the titers, rather than merely a high titer result in and of itself, that can be an indicator of PANDAs. So I might suggest waiting a couple of weeks and having the test taken again? From what I've seen from labs, I would think that 400 is well above a "normal range," depending on your DS's age; when my DS was tested at age 12, the high end of the lab's normal range topped out at 170. And that's the first time I've heard the explanation that the ASO can reflect "other strep strains" that are not problematic. Hmmmmm. Might also ask for an "anti d-nase b" test which is supposed to test titer levels within 6 to 8 weeks of a strep infection/episode. Ultimately, in terms of diagnostics, I would seek out a Cunningham test (tests CamK II levels). Overall, given what you've stated, I would suspect PANDAS/PANs.

In our experience, to get to a teenager's head (especially a boy), you might need to start with his stomach! I went GF first, and DS watched me feel better and still eat lots of delicious stuff. So, eventually, he consented to try, provided I would feed him things he enjoyed. So, I made GF (quinoa) pasta, which he adored. Then I made GF mac and cheese; again, adored. He's a big pasta lover, so between the quinoa pastas and the thai brown rice noodles, etc., I'm able to make lots of entrees he enjoys. The GF cookies made with almond flour sealed the deal for him. There're so many good GF recipes and "cheats" available now that it's not difficult to find stuff he likes. In college now and eating at the dorm, I know he's not GF strict anymore. But even so, I'm able to load him up with GF snacks that he keeps on hand and taps into constantly. I figure, every little bit helps! You might even try just serving something like spaghetti and meatballs one night and only tell him afterward that the "spaghetti" was quinoa and the "meatballs" were turkey! Good luck!

KLW -- My DS, we're fairly sure, suffered with PANDAs for the better part of a decade before he fell off the edge of the world at the age of 12 and we finally got a PANDAs dx and intervention (abx). Prior to that, at age 6, he'd been given a host of other dx -- OCD, general anxiety, even PDD-NOS -- when his OCD/anxiety would ramp up suddenly and dramatically and he'd be unresponsive to therapy and the psych meds they gave him. Finally, when he became completely nonfunctional at 12, we found this forum and some newer research and materials that helped us advocate for PANDAs treatment, and his turnaround began. It was slow. It was painful. It was frequently two steps forward and then one step back. But over time, he DID come back around, and he continued to make gains every day, every week, every month and every year. In the end, we had him on abx for nearly 2 years, and he continues to take supplements and a couple of prescription meds to this day. He is not, as some families are able to achieve, 100% or, I would say, even 95% OCD/anxiety free. He continues to encounter it, perhaps not daily, but frequently, as he makes his way through a world fraught with novel situations, new people, pleasant and unpleasant surprises, etc. But he's had years, off and on, of therapy and coaching, so that, in conjunction with the other interventions, help him regain and maintain his balance, more often than not. Today, I am happy and proud to say, he's in college. He lives on campus, in a private dorm room, and attends a full class schedule. He's made friends, keeps himself fed and dressed, does his own laundry, keeps up with his coursework and overall enjoys himself. When he has a tough day and feels stressed out, he knows what he can do to downshift: turn in early, call or text his dad or me, listen to music or play a game for a bit. He's doing a great job of growing up, in other words, even though his path has been different from the paths of many of his peers. So, based on our experience, I have full faith that most kids can come out of this horrid experience resilient and strong and capable, even if changed. You'll make it through, too . . . hang in there!