MomWithOCDSon

My DS took Augmentin for nearly 2 years, to only positive effects. And despite some fear-mongering in some circles regarding antibiotic resistance, he's had a couple of ear infections in the five years since he's been off abx, and good old amoxicillin took care of them just fine. I would just make sure you also implement the use of good quality probiotics so that her gut biome stays well-populated with beneficial flora, since that's increasingly thought to be an important component of both physical and mental health. Good luck!

My DS did not have yeast issues while on his abx regimen, but we were pretty heavy-handed with the probiotics, too. Never tried apple cider vinegar, though I see its health benefits preached all over the web these days. Hyperbole? Maybe. Supposedly, sach b (Florastor) is a beneficial yeast that is supposed to "crowd out" detrimental, invasive yeast species such as candida, so we dosed that 3 times/day. Also used bentonite clay once each week to "sweep out" his gut; just a couple of tablespoons in a glass of juice before bedtime. Maybe that helped, too? Good luck!

You might try an integrative doctor or a naturopath; some DAN! (Defeat Autism Now!) doctors are also well-versed in OCD (many autistic kids suffer from it as a comorbid disorder). You could also search here on the forum, and maybe try a "Supplements OCD" key phrase search on the PANDAs forum, as well. Many of us have exchanged information, ideas, research and doctors' recommendations there. My son takes n-acetylcysteine (NAC), B6 and zinc which seem to help his OCD. Inositol is another one, but if your son is already taking an SSRI, adding inositol is probably not the best idea because it, too, is supposed to leave more serotonin available in the brain for more extended periods. Good luck!

Quercitin is a fruit-derived supplement that supposedly stops production of histamine at the mast cell level; you can find it in places like Whole Foods and The Vitamin Shoppe. You can also get a version of Benedryl without the pink dye which, while not "natural," would at least eliminate the dye from the equation.

I would make an appointment with a PANDAS/PANs specialist ASAP. And in the meantime, I would give her ibuprofen (Motrin) and antibiotics to the extent she can tolerate them. Frankly, it doesn't sound as though things could get much worse, and you have some evidence that at least the ibuprofen can help, and that the abx have helped some of her symptoms in the past, if not all of the behaviors. Hang in there. We're here for you.

I second Jan's response, and I'll note for you that many PANDAs/PANs families have kids who, prior to and/or during PANDAs/PANs, had ASD diagnoses or "markers," or, at a minimum, some behaviors that pointed that direction. Now whether that's because ASD, at its root, is immune dysfunction related or if it's because kids with a genetic predisposition to ASD may also be genetically predisposed to immune dysfunction and disorders such as PANDAs/PANs . . . it may be decades before those connections (or lack thereof) are actually made. My DS was "quirky" before the OCD or PANDAs showed up, including sensory issues, some Asperger's traits, etc. But in the PANDAs exacerbation that sent him over the edge, all of these tendencies because full-blown dysfunctions, and two of our doctors actually labeled him, for the first time "ASD" to go along with the "OCD" label, and even a PDD-NOS label (pervasive developmental disorder - not otherwise specified) appeared in some of the paperwork. Finally, 6 years after the "regular OCD" diagnosis, a PANDAs diagnosis and treatment, and the ASD/Asperger's/PDD-NOS traits dissolved over time and the docs removed these terms from his charts. He still has a tendency toward anxiety and some OCD, but no one would think of him as ASD or PDD anymore. So yes, personally, I think there can be (though not necessarily IS) a relationship, and I would explore PANDAs/PANs as thoroughly as possible while your DD is still quite young and therefore has an excellent chance of regaining any ground she may have lost to immune dysfunction. All the best!

SSoda -- No, I'm not trying to suggest that the behaviors will evaporate or correct, even over time, with just ibuprofen. What I am suggesting is that if inflammation (as a result of either infection or immune dysfunction or potentially both) is at play, the ibuprofen can help to some extent put the inflammation in check, and you may see some behavioral improvements as a result. That being said, it is likely that any lasting improvements, or a trajectory of improved behaviors, won't be evident until you get some additional interventions (abx, steroids, etc.). At least that was our experience.

Well, because immune function (or dysfunction) tends to have a genetic component, we see a fair number of PANDAS/PANs siblings here on the forum, and I think the evidence that it can impact more than one kid in a family is more than anecdotal. In my case I think it's generational; I think I had PANDAs as a kid, and my kid wound up with it, as well. SSoda, I don't recall what you've posted -- if anything -- in the past regarding what sorts of testing or doctors (beyond a neurologist, I think?) you've seen, but I would try and get to a PANDAs-knowledgeable doc, in your shoes. Because your kids sound a little "complicated," the immune part of the puzzle is likely to go over the heads of less-knowledgeable docs in favor of them relying upon the easier "labels," if you will. Most of the PANDAs docs will order a full immune panel which can identify dysfunction there, if any, and will explain some inflammatory responses, also. Many PANDAS docs also prescribe a short course of steroids, both as a treatment option and a diagnostic method; if the kid's behaviors improve as a result of the steroids, that's taken as additional evidence that inflammation is at least in part behind the behavior sets. If Motrin works for your DD, I would go ahead and give it and see if it continues to help in the meantime.

No, he dragged his entire leg, and rather than "tingling," he would sometimes complain of pain . . . in his joints, in his shins. I used to get the same thing as a kid, and my mom and dad always referred to it as "growing pains." But all of that resolved with abx -- both behaviors and the pain sensations. Isn't it possible it's not nerve damage she's experiencing but the sort of "tingling" you might feel when your foot falls asleep? So, maybe a circulation problem or the same sensation caused by inflammation somewhere along the nerve line? Do you see any swelling anywhere near or above the area that's "tingling"? If you give her ibuprofen, do those feelings subside? Sorry I'm not of more help.

I'm not debating you in terms of viewing this as an "emergency," but I am dubious as to what a local urgent care, etc. is prepared to do about it. My DS had a "leg dragging" behavior/tic during his sickest period where he would drag his right leg behind him as he walked. I think I told you before, too, that his speech patterns were wildly disrupted around that time, too. If you cannot get in to a doctor who will work with you and, at the least, consider an infectious trigger behind these aberrant behaviors, then, sure, go to an urgent care. I don't know that the odds are very good, but there's always a chance you could run into a nurse practitioner or a young doctor there who's into recent research and/or had some opportunity to see something similar before and will therefore actually help you. I just think you might want to prepare yourself, as well, for a more typical response: your DD has XXX (fill in the blank here with any dx you may have heard before that was an attempt to explain these behaviors), and there's no medical response I can give you for this. Stay strong, and do what you have to do. For good, bad or otherwise, I've always thrown spaghetti at the wall and worked forward from whatever stuck because, like you, sometimes I didn't have any other viable choices. Sometimes it works out, sometimes it doesn't. But I don't know that you have a lot to lose in the meantime.

Ooh, how long is the course of nystatin? I was put on that for a period many years ago, and it did not do my liver any favors! Make sure he's tested for liver function on a regular basis while he takes that. We used sachromyces boulardi (beneficial yeast) and bentonite clay for combatting yeast overgrowth, and that combination appears to have worked in our case. I'm sure it varies from gut biome to gut biome, however.

Yes, particularly as some classes of abx have anti-inflammatory properties.

Sorry, Puppydog, as I don't have a response to your specific question. In fact, I'd never heard of MCAS before, so I had to look it up. Wow! How did you ever arrive upon such a diagnosis? Fascinating, as, based on my short reading on-line, this condition appears to have a number of issues in common with PANDAS/PANS, with the exception of the fact that I don't see any mention of an infectious or bacterial trigger. Hope someone else here can respond to you in the affirmative. In the meantime, if you can find someone who can treat the individual components, perhaps that would be helpful to some degree? All the best!

Oh yes, you're correct! I was thinking of Kenneth Bock, rather than Steven. Sorry! Are they related? I know Kenneth Bock's practice is also in New York State, which added to my confusion.

Louisa -- I haven't personally worked with Dr. Bock, but I've read his book ("Healing the New Childhood Epidemics"), have heard him speak at conferences, and had the pleasure of meeting him and talking with him for a few minutes at a conference a couple of years ago. Then I shared a lunch break with a family who's son is treated by Dr. Bock; they raved about him. All of that is to say, I think seeking his advice would be a great move. He is very impressive and knowledgeable. Good luck!

We took a similar approach to Quannie, especially once we realized that we would encounter resistance among the professionals that we felt certain could help DS with certain needs, but wouldn't willingly buy into others. For us, the pediatrician was willing to prescribe the abx that ultimately jump-started his recovery from The Exacerbation to Beat All Exacerbations. The school staff was ready to help us with the behaviors that were birthed by all the anxiety that the PANDAS drove. The therapist and psych were ready to help us with the toughest of the OCD. And the wonderful folks on this forum helped us develop our own integrative approach in putting all the pieces together as best we could, for what became the full circle care program for our son. I've always wanted to find that needle-in-the-haystack professional who would be willing to treat my son from A to Z, but I've never been successful. And even among the most experienced professionals within the PANDAs world, or the ASD world or CBT/ERP, treatment protocols and recommendations can vary widely. So you really are, ultimately, I think, left with following your gut to some extent and recognizing that you know your kiddo(s) better than anyone else on the planet, and so you're in the best possible position to assess what is working for them, what isn't working for them. As for "clearing" a doctor's file, no, I don't know of any way to accomplish that, unfortunately. Though I do think, given HIPPA, if you request a copy of the records be delivered directly to you, they are required by law to do that. We had to pay our doctor for the time and photocopy costs (I think it was like a $10 fee), but they did provide them to us. Then I made a binder that I took to future doctor's and professional's appointments with us that contained the records, research, writing samples, PANDAS information and resource, etc. I wanted each caregiver specifically to have.

SSoda -- I can almost literally hear the desperation and frustration in your voice, and I do, truly, remember how that feels. This is such a crazy journey, and it's demoralizing and angering to have medical professionals try to twist it around on you, suggesting or outright telling you that you're a delusional mom who just can't accept that some kids develop autism or some other condition and who spends too much time poking around on the internet . . . But that story, too, is all too familiar. Like you, I got most of my help, ideas, research leads, etc. from here on the forum. Moms and dads who are smarter than me, more connected than me, more experienced than me -- all contributed to what I'll call my "throw-spaghetti-at-the-wall-and-see-if-it-sticks" approach to trying to find the most effective combination of all possible things to help my son heal. On top of which -- I won't lie -- I think we were exceptionally lucky. Basically, I ruled very few things out altogether as we went along, based on how well I knew him and trusted my read on how he responded or reacted to various interventions, and the other families here helped me trust my gut when I didn't feel fully supported by my spouse or family or friends. At times, to them, I'm sure I sounded like a completely wacked out person who saw aliens everywhere and Bigfoot in my back yard! Are those new supplements you just started giving causal to the small improvements you're seeing in your kids this morning? Maybe. Maybe not. Maybe, even this early, they triggered something in their brain chemistry that had been sorely missing up to this point, and even though the gains may not hold entirely or grow exponentially from here on, you've got one potential clue as to possible successful interventions. For us Augmentin XR was that "aha" substance that, the first day we gave it to our DS, his behavior began to turn around. It wasn't 100% consistent and the gains did not continue at an exponential rate, but they did continue. So we stuck with it. I hope you have some close-by support system (sounds as though your sister is in your corner?), and you can always count on the folks in this forum, too. And you DO need to take care of yourself, as well, so do what you need to do in that respect. This stuff is not easy. It can be painful, grueling and unbelievably frustrating. But you'll get through it . . . we're all here to help, if we can.

Louisa -- In our experience, by its very nature, much of OCD can be a pretty "private" issue, whether it's manifesting as intrusive thoughts about sex, body exposure, hygiene after toileting, etc. Therapists are very familiar with all of these manifestations because, for whatever bizarre reason (the brain is crazy mysterious), they're very common among OCD sufferers. The overall sense of taboo, maybe? Our son had some of the same issues, and the therapist was able to work with him without making him feel violated in any way. But for compulsions of this type, it is a longer process, I think, because that relationship has to be built, and the therapist is not going to dive in and ask him to unbutton the top three buttons of his shirt at Appointment One; he's going to build up to that in some meaningful, guided way. And, hopefully, he's going to give him some meaningful at-home exercises, too, that you can be supportive and coach him along in, in small steps, as he builds that tolerance and builds that "muscle" to push back at the OCD and take back control over that part of his life. Also, there ARE therapists out there that have experience with both OCD and Asperger's (we found one in our market), so that would likely be your best bet. These folks "get" the kind of very perseverative thinking patterns and tendency to "parse" language and reasoning and thus can have greater success in breaking through to a patient like this.

I have to join Jan251 in echoing an "I don't know" with respect to some of your questions, but I can also offer this. In the depth of my son's worst/pivotal PANDAS exacerbation, many of his behaviors, sensitivities, etc. looked very, very much like an increasingly severe type of autism. Perhaps like your kiddo, he had previously (along about the age of 3) displayed some "processing differences" that a few doctors and caregivers likened to a functional level of Asperger's, but nothing like what the PANDAS "unearthed," is the best way I can describe it. As a preschooler and through grammar school, he had some of the Asperger traits: intense focus on things of his interest, lack of tolerance for things/subjects that didn't interest him at all, general disinterest in social interactions with peers but an exceptionally strong ability to articulate thoughts, ideas and even feelings with trusted adults, high physical sensitivity to clothing labels, sock seams, etc. With the PANDAS came an inability to look people in the eye when talking with them, a "kinetic" sort of need to move and talk at the same time -- if you asked him to sit or stand still, the words wouldn't come out, odd speech patterns in which he would repeat words or even full phrases over and over again, without being able to complete an articulate thought, lack of muscle tone to the extent that he couldn't sit up for long periods, was forever lounging and slumping, dramatic meltdowns over tasks or requests that, before, had been simply and confidently accomplished. My dad developed Alzheimer's about the same time, and at one point fairly well into his healing, my son told me that sometimes he "felt like Grandpa" because while he could remember a beloved vacation that we took two years ago, he couldn't remember what he'd had for breakfast that morning, or even if he'd brushed his teeth less than half an hour ago. Personally, I think ALL of this is brain assault . . . microbes, inflammation, neurotransmitters tilted off-balance by inflammation or microbes or both . . . But it DID all get better over time with PANDAS treatment, therapy, supplementation and some "psych" meds, as well. Within about 2 years' time, all of his caregivers/doctors had dropped any reference to "autism" in his diagnostic profiles, and he's a happy, successful, largely independent college sophomore today. That's not to say that he doesn't still have some "quirks" or some periodic episodes of anxiety and/or OCD, because he does. I think he's wired this way, honestly. But he is fully functional which, during the PANDAS, he couldn't have been further away from. All that's to say . . . don't give up! The answers don't come easily, nor do they always come quickly, but they WILL come!

While I know inositol is supposed to help serotonin function and thereby help fight OCD, we were never successful with inositol supplementation having any tangible impact on OCD. I suspect that's because it needs to be given in copious amounts in order to be effective, and we just never found that threshold. I don't have any experience with lithium and inositol, however, so I can't speak to that. Is your integrative physician aware that your son also takes the lithium? In any event, I would inform him of the apparent conflict.

Louisa -- You don't say, I don't think, how old your son is, but it wouldn't be at all unusual that he's not necessarily a willing participant in CBT or ERP therapy. Depending on his age, you may find him more compliant after a couple of weeks of successful, effective immunotherapy, whatever that ultimately turns out to be. But if he's a bit older (12+), especially, the potential for his compulsive "routines" to become entrenched grows exponentially the longer he's allowed to engage in them, so, willing or not, I would try to find a good therapist for him and start the work. Finding a good fit between your DS and the therapist is important, so, if after a few sessions, neither you nor your DS feel there's any ground being gained, I would consider moving on to another option. And I would really encourage you to work with a therapist who will invite you into at least a portion of the sessions, as well, because family assistance/compliance/coaching is key in supporting the ERP and gains that come from it. That's one reason, I think, that the Rothman program is so successful; it gives the whole family tools and a skill set for "shrinking" the kid's OCD. I don't know any therapists specifically in your area, but I would start with the IOCDF (International Obsessive Compulsive Disorder Foundation) and its "Find Help" web page. Here's a link: https://iocdf.org/about-ocd/treatment/how-to-find-the-right-therapist/ Here you can search by not only location, but also age (of patient), specific issues, etc. And all of these therapists are members of the IOCDF, so you know they have good training. Still, there can be a "dud" in every bunch, and even a good therapist may not be effective if their rapport with your DS is not good. So just remember that you're the customer, and if you're not satisfied, you may have to try more than one. Most importantly . . . don't give up. It can be trying, frustrating, demoralizing and difficult. But it WILL pay off in the end! All the best!

Valerian root a couple of hours before bedtime to chill him out a little, melatonin (a small dose will usually do -- 1 to 2 mg.) a half-hour to hour before bedtime. Lights out! Good luck!

As you've probably read elsewhere here, urinary frequency is a very real symptom of PANDAS. There is definitely something going on with the nerves (Vagus nerve for one, I think), and signaling in the brain from the bladder (a glutamate issue, I think I remember reading). You could search for that here on the forum and find a ton of discussion. Secondarily, however, OCD can play a role, too: fears of wetting oneself, a compulsion to fully evacuate one's bladder before moving on to the next activity, etc. It's an unfortunate "marriage" of the legitimate medical and the OCD "mind tricks." We saw a lot of hanging upside down, weird sensory symptoms (wet skin, itchy skin, "needle-prick" skin, etc.) in our DS during the depth of his PANDAS, and it hung on for a while for him; for a very long time, he preferred to sit and read or watch TV or just hold a conversation with us in an unorthodox position -- frequently with his head hanging down, below the rest of his body. I can remember doing some of that myself as a kid, so I don't know if one's non-PANDAS wiring plays a role here, or if it is some sort of instinctual attempt to ease or calm something going on internally. Our DS's gifted teacher at one point also commented on his need to "balance" constantly, arranging himself in a chair or on his feet in a way that caused him to have to actively maintain his balance while also doing work or holding a conversation, etc. It was almost as if his brain needed to be working on two levels, or on two very different kinds of tasks at the same time, in order to work at all. I still see a little of that tendency, again, in him as well as in myself; both of us are better at doing two things at once than we are at doing a single thing at one time. I know some ADD/ADHD kids function better in terms of paying attention if they have something like a stress ball to squeeze in one hand while they actively engage in listening, so maybe it's something like that? The Asperger/ASD stuff -- yes, we've seen some of that, too, and it was definitely in full bloom during the depth of the PANDAS; we actually had two doctors at the time -- a pediatrician and a psych -- "label" DS "Asperger," though he never fully met the criteria. What we found was that with medical treatment for the PANDAS along with some psychiatric and therapeutic interventions for the worst of the OCD, attention-deficit and sensory issues, those behaviors -- and the "professionals'" labeling of him as Asperger/ASD -- faded. Again, I think this might be an unfortunate "marriage" of genetic tendency and the impact of the PANDAS, exacerbating those tendencies, perhaps by increasing the quantities of certain neurotransmitters in the brain or suppressing others. Given as glutamate has been identified as a fairly significant player in ASD and OCD, I tend to lay these issues at its feet. All the sensory stuff is mixed up in these same issues/impacts, from what I've seen, and the odd behaviors are attempts to soothe the "uncomfortable" feelings. In our DS's case, he never described "pain" as such, but there was lots of discomfort, for sure. And lots of distress over not being able to feel "comfortable," whether it was because he kept feeling like he had to pee, or his skin was prickly, or he couldn't sit comfortably, or find a comfortable position for sleep, etc. If you can find a psych who knows both PANDAS and Asperger/ASD (a tall order, I know), that person, along with a medical PANDAS specialist, could be an excellent ally. When our DS had trouble expressing himself in the depth of the PANDAS stuff (too easily overwhelmed, lots of stuttering, quick meltdowns, etc.), we were fortunate enough to find a psych who'd worked with enough ASD kids, and knew of and held firm the legitimacy of PANDAS, to help us. Her ideas and techniques were definitely valuable, and she was able to help him articulate his feelings with some intelligent, leading questions that would never have occurred to me.

No experience with mino, but very interested to hear from folks who try it. But Zoloft, yes. My DS took has taken it for a few years now; we started it during his penultimate PANDAS episode based on some research and information I gleaned from a session at the IOCDF conference that year and, in particular, a panel led by Dr. Eric Storch. It just seemed like it might be a good fit for our DS, and it has been. That said, I think you're wise to take it "low and slow," just because there are so many moving parts to how people respond to these medications. All the best!

Sorry I'm not in that area of the country and I do hope you get some responses from local folks who can lend some support as you're seeking. I did want to tell you, however, that I know of several families who've taken their PANDAS/PANs kids to Duke for testing and some treatment protocols, so the medical school/facilities associated with the University are, at least to some degree, PANDAS-savvy and, I'm led to believe, helpful, as well. So hopefully that will give you a little comfort that perhaps, right there in the Duke community, you can find some supports and help. You might use the Search function here on the forum and literally search "Duke" and see what pops up. I'll have my fingers crossed for you!