MomWithOCDSon

My son is considerably larger than yours (15 yo, 155 lbs.), but for comparison's sake . . . he's getting 30 mg. twice daily (morning and night), for a total of 60 mg.

I will "third" the vote for zinc. It has definitely helped my DS. We, too, started with the Zicam melts but now use a product called Opt-Zinc by SolaRay which is supposed to be a maximally bio-available form of zinc. Highly recommend it!

Yes, we had memory issues. There are both specific events and then large stretches of time that my DS has completely lost. Some of it I chalk up to the power of the brain to sort of protect you from the tough times, and some of it, I'm sure, has to do with the whole NMDA receptor/glutamate thing that's also found to be at issue in some cases of encephalitis, Alzheimer's, etc. My son even once remarked that he felt as though he was "like Grandpa" (who does have Alzheimer's) because, while he could easily remember events that dated back 2 or 3 years, he had trouble remembering events of the previous week. Most of his memory lapses seemed to be with short-term and/or processing memory, while his long-term memory remained largely in tact. We found that supplementing with taurine assisted the processing memory, i.e., kept him on better track with multi-step tasks so that we didn't have to constantly remind him what came next. In the end, the memory deficits eased up and disappeared completely as he became healthier.

Ditto, ditto, ditto! Sounds like your family is all ready for a fabulous holiday season! Congratulations to you, and happy, happy, joy, joy!

Personally, I find the school's insistence on a "behavior plan" a sign that they view your child's issues as strictly behavioral, so perhaps some education is necessary. I agree that your child could, maybe even should, have both a 504 and a behavior plan, but the behavior plan doesn't override the need for the protections provided in a 504. I would insist on having a 504 meeting; bring some "plain-talking" PANDAS information with you to distribute to the school administration and teacher(s). You're going to need to stress the fact that, during a PANDAS exacerbation, a behavior plan without a solid understanding of the underlying PANDAS issues is likely to be useless. For example, if your child suffers from small motor deterioration (handwriting and/or scissor work) during exacerbation, then only a behavior plan that recognizes that "trying harder" or "taking more time" alone aren't likely to be successful solutions to this deterioration condition, is appropriate. Rather, the behavior plan would need to provide for alternative activities or options, such as keyboarding instead of writing, or an art assignment that did not rely on precision scissor work or which could be done cooperatively with another student so that the more challenging small motor components of the project could be handled by the partner while your child took on the components of the task that were manageable for him/her. I would be polite, but insistent on the matter. You don't want to wrankle everyones' nerves before even coming to the table, but you want to let them know that you're going to advocate for your child and will not roll over and play dead, especially when they appear to be ignorant on the underlying issues.

Sorry that I don't have an answer, Melanie. Neurontin is supposedly a GABA analogue, while NAC's action is mostly thought to be with respect to NMDA glutamate receptors, so I don't think they'd work at cross purposes or "supersize" any reactions. But you told the prescribing doctor that Danny takes NAC, right? Your doctor seems pretty "progressive" and willing to try some things off-label for Danny; if I recall correctly, you've also tried Namenda, right? What is Danny taking now, all told? What have you seen in response to some of the off-label meds your doctor has tried?

Hi Jennifer -- We use OLE for prophylactic, and I definitely think it helps. Other than one cold, none of us in the family has had any illnesses in the year since we started it (knock on wood), and none of us gets flu shots anymore, etc. As for it actually helping anxiety, I can't say for sure, but I expect not, at least not in the doses we're giving. I don't think it has those same sort of properties/characteristics in terms of fighting anxiety as some manufactured abx might (anti-inflammatory, glutamate modulating, anti-depression). As for dosage, I don't know of any solid "recommendations," and most OLE tablets or capsules that I've found don't identify any mg.'s or units or anything along those lines. Apparently, the active ingredient is oleuprein, and we look for brands that have the highest oleuprein ratio that we can find; that's usually somewhere between 18% and 22%. There're some available on-line and also at places like Whole Foods and The Vitamin Shoppe. We dose it twice daily . . . once in the morning with breakfast, and again in the evening at dinner, more or less like we used to give the abx.

MDMom -- It's not a one-to-one referral, but have you tried the IOCDF "Find a Therapist" function? Maybe they can help. I also once asked Dr. Storch for a referral in my area, and he was able to give me one; unfortunately, she turned out to be the "head" of a large hospital group department and didn't take patients directly herself, but rather referred them down the chain. Still, it might be worth asking the folks at USF as they probably know others around the country who are well-regarded for their ERP skills/programs. Here's a link to the IOCDF portal: IOCDF - Find a Therapist

Megan -- Like several other folks here, my first thought on reading your initial post was "sounds like lyme." And then I read through the entire thread, saw all the responses and yours in turn . . . wow, you guys have been through the wringer! So sorry! In the end, isn't it likely that your DD is suffering from the overall immune onslaught . . . lyme, strep, EBV, etc.?! So, at this point, would the most effective treatment be to address the immune system itself through something like PEX? I seem to recall that IVIG and Lyme are not always a good mix, though certainly there are others here who could more knowledgably address that. I just want to echo DeeDee's thoughts, though, with regard to the OCD. We didn't recognize it in our young child (DS) originally, either, because it wasn't taking a "classic" form, so we attributed his outbursts to him being "sensitive," etc. In the end, we discovered we were unknowingly interrupting some rituals he'd developed, and that's when he would get angry or frustrated and act out. At that age (before 6, which was when he was officially diagnosed when the first "classic" symptom appeared . . . handwashing), 4 or 5, he didn't have the vocabulary or self-awareness to explain to us why he was angry or that he was ritualizing, but in hindsight, it's all become clear. Hope you find answers soon, but you sound like the tenacious type, so I'm betting you will. Hang in there!

If augmentin helped her initially, I would try to get back on that. But push for a 30-day prescription, if not more. Anecdotally, I think that older kids, especially, benefit from longer abx courses. Maybe because they've been carrying around the bacteria longer before the negative results boiled to the surface? In my DS's case, because he'd faced strep previously for years only we didn't know it because he was classically asymptomatic, we're pretty sure the strep had colonized in his sinuses and created ongoing issues for him. Unfortunately, we have not found a neurologist in our area who would take PANDAS seriously, especially with some of my DS's characteristics and health pattern not following the older, more strict criteria of the NIMH. I know there are a few out there who support the PANDAS/PANS diagnosis, but it is somewhat rare, I think. Look for a referral or recommendation, either here on the Pinned Threads or on other sites like pandasnetwork.org rather than going blind into an appointment.

SurfMom -- My DS is in his sophomore year and, like your DD, when he's healthy and good, honors and AP classes are totally manageable. But when he's flaring or overwhelmed in terms of the volume of assignments, things can spiral downward pretty quickly. We've gone with an IEP, mostly because it gives him the on-site back-up (a case manager, as well as access to the school psychologist, if he needs her) that we're not there to lend, plus, by the time the kids are in high school, it seems like nobody wants an "ever-present" parent anymore. Mostly the support personnel helps him manage his teachers, especially the ones who "get it" less and therefore are reluctant to grant him the accommodations to which he's entitled. Plus, we have accommodations in the IEP that help us help him when he needs it most. Things like "reduce assignments for quantity, not quality," which means that he can be assigned 3 math problems instead of 13, and he can have extra time for testing, homework, and even classroom assignments, as needed. Trimming out the "busy work" and lightening the load a bit, especially when he's not at his best, helps keep the anxiety at a dull roar and bring him back around to his best quicker. Knock on wood, his freshman year went very well and though his sophomore year has been more challenging thus far in terms of settling in and sort of teaching the teachers about DS, OCD and PANDAS, he's hanging in there and figuring out how to handle a challenging class load and work load. It's important to us that he learn how to put his head down and push through the hard times to some extent, but we also want him to feel successful, to BE successful, and not constantly feel as though he's being smothered by work and challenges, you know? Good luck!

My DS is taking low-dose Zoloft for anxiety/OCD, and we've had good results. He was 12 when we began, and he started with 25 mg. We titered up slowly over about 3 months to where he is now and has held steady for the last couple of years at 75 mg. My advice would be to follow the now-old saw: "low and slow." Start at a very low dose, especially if your child has never before taken any type of SSRI, because you don't know what the right dose is for him. SSRIs are generally not dosed by either age or weight; it's all about the brain chemistry, so it is a bit of a guessing game, even for the most skilled doc. If your prescribing doc is not PANDAS/PANS-savvy, then all the more reason to be very cautious about dose and the rate at which the dose is increased; we know from experience that what a typical doc considers a "very low dose" can, in fact, be too high for our son, and it might be the same for yours. SSRIs can take 4 to 6 weeks to reach full efficacy, so you don't want to increase dosage too fast; many docs will suggest increasing doses after just a week or two, but that's too fast for most of our kids and can lead to missing the "sweet spot" at which the med can help and advancing to that point at which it's too much and the kid gets activated. Best to wait at least 4 weeks at each dose level before increasing it at all. The good news in our case was that, at a dose that was too much and activated DS, we saw the activation (increased agitation, mood swings, "crawling out his skin") within 48 hours of increasing the dose, so we knew what to blame it on and promptly dropped the dose back to where it was before; within another 48 hours, he was back to himself. So the potential bad impacts of too high dosage aren't long-term so long as you're observant and responsive. I know that many families with kids who try an SSRI for the first time will often start Zoloft at half the lowest dose, even: 12.5 mg., by breaking the 25 mg. pill in half. That should be a pretty "safe" place to start, but assuming you have access to a good, PANDAS/PANS-savvy doctor, consulting with them is your best bet! Good luck to you!

No, we just decided to try the olive leaf independently, and since oleuropein is the "active ingredient" in terms of anti-microbial action, we try to purchase the product with the highest commercially available oleuropein ratio, too, usually in the range of 18% to 22%. We dose twice daily, just like we used to the abx.

What, if anything, is your child currently taking to help with anxiety? Is he in therapy? Almost any substance . . . be it prescription (SSRIs) or "natural" (supplements) have to be titered up slowly with respect to dosage and can take 4 to 6 weeks to reach full efficacy. Many of us use a combination of meds and/or supplements to help abate anxiety, but it is rarely an "instant" fix. Supplements like NAC, tryptophan, and/or inositol help some but, again, they take time. If your DS is highly anxious right now and needs immediate help, there are three non-prescription things you might try that, for our DS, seemed to have a more immediate impact: ibuprofen, an H2 (histamine receptor) blocker like Pepcid, and/or Valerian root. Ibuprofen will assist in setting aside any inflammation that might be driving his fight/flight responses, the histamine blocker will help lower his uptake of histamine which, as a neurotransmitter in the brain can drive anxiety when present in too high levels, and Valerian is a "natural" calming agent, though for our DS it just "took the edge" off for brief periods at a time. If your DS's anxiety is severely impacting his functionality, you might want to talk to your doctor about some temporary but more immediate interventions; some folks here have used meds like valium, Seroquel or Risperadol when their kids were so anxious it was either that or a padded room. Sorry your DS is going through this.

Try sacchromyces boulardii, also known as "sach b" and/or "s. boulardii." It is a beneficial yeast probiotic that both crowds out bad yeast (like candida) and also helps prevent diarrhea. The other benefit is that it can be dosed concurrent with abx, if necessary. Florastor is a major brand available at your pharmacy counter, but you can get other forms less expensively at places like the Vitamin Shoppe and/or Whole Foods. We've been using a Jarrow brand for years, and it works very well. The extra benefit of the Jarrow brand over Florastor, too, is that it is in a gelcap, so you could open it and stir it into apple sauce, yogurt or juice if your DD won't just swallow the capsule. We are using olive leaf as a natural antimicrobial and have been since we took DS off antibiotics almost a year ago now. As best we can tell, it is effective as a prophylactic measure, but if your DD is struggling again, she may have a fresh infection, in which case prescription abx are likely better for contending with that. Hang in there!

Well, I finished this book last night and came across a couple of other things that really resonated with me and our experiences: Even after months of steroids and several IVIG treatments, and the doctors decided to taper off all of her anti-anxiety and anti-psychotic medications, the author says, "I still had a long way to go before returning to the person I once was.. It's clear to me now that I was still in the midst of a very imprecise stage in recovery, which Dr. Dalmau and others are studying closely. 'The patients are back to normal, essentially, by family assessments, by friends' assessments, and by physicians' assessments, but they are not back to normal by the same patient's assessment," Dr. Dalmau explained. 'And this lingers for quite a long time. Recovery takes as much as two to three years, or even longer.'" The author also notes a 1981 paper by Robert Delong describing "acquired reversible autistic syndrome" in which an ecephalatic disease presented like autism, but 2 of the 3 children studied recovered fully. Another doctor she interviewed, Dr. Balice-Gordon, believes that a percentage of those diagnosed with autism and schizophrenia might in fact have autoimmune disease. She mentions several times that, during her recovery, her shins ached when she walked any distance. Especially earlier in her recovery, she noted how difficult and energy-zapping "being social" was for her; "My inner life was so jumbled and remote that I couldn't possibly summon up breezy conversation." Many people here have talked about the "turning back of pages" in the healing process, especially following IVIG. Susannah describes the same process. "In my case, the return to psychotic behavior was actually a sign of improvement, because the stages of recovery often occur in reverse order: I had passed through psychosis before I got to catatonia, and now I had to pass through it again on my road back to normality." To me, all these "commonalities" with our own PANDAS/PANS experiences just further support its position as a full-fledged auto-immune disease and should help drive home the point to would-be naysayers that ours is not some bizarre, fictious, "outlier" of a disease, but one who's "cousins" -- like NMDA receptor autoimmune encephalitis (Susannah's diagnosis) -- share many traits, treatment options, and even outcomes! I wonder . . . does anyone know if "NMDA receptor autoimmune encephalitis" appears in that magic medical reference book? What is it called . . . the DMSR, or something like that? (Sorry to be so lame . . . I can't keep all the initial-laden terms straight!)

The feeling is mutual!

:lol: Those were great, only now the song's stuck in my head . . . . "Just you kno-ow why, why you and I . . . "

I am thankful for all the support, friendship, ideas, information and even the occasional chuckle I've found here at ACN over the last couple of years. Thanks, kimballout!

Our experience, similar to Nicklemama's, has only been positive. DS still takes Lamictal, and I just checked the prescription. It is the generic, by Teva. There must be something about our kids' chemistry that differs significantly and causes the disparate reactions.

Ooh! There are a couple of other Aussies over on the PANDAS/PANS forum, so perhaps you can make a connection and get some referrals. Unfortunately, can't recall offhand who they are, but if it comes to me, I'll drop you a PM. Edit to Add: Also forgot to mention, at least one of the leading PANDAS/PANs experts here in the States, Dr. T., will do telephone consults for those who are unable to get to him in person. I believe these consults are somewhat expensive and generally aren't covered by any insurance, but Dr. T. is very highly regarded and skilled. Just another option, should you need one. Good luck!

I would check the pinned threads at the top of the PANDAS forum here on the ACN site as there is a ton of information there. Typically, what most of us get are tests for strep titers -- ASO and antidnase b -- and then a full immune panel (IgG, IgA, etc.). If there's any possibility your DD has been exposed to lyme disease (hiking, camping, etc.), then testing for lyme infection and co-infections would be important, also (there's a Lyme forum here, as well, that you could check in that regard). It may seem overwhelming. One place to start might be with the most "likely" culprit, i.e., if your DD has had strep recently, go after those tests first. Or if she spent 3 weeks camping in the wilds of Maine, go after Lyme first, etc. Everything you rule out will help you move forward, even if you're not getting it done all at once. And if your doctor is "less than thrilled" at the prospect of helping you track this thing down, you might consider making an appointment with one of the doctors (a list appears on the pinned threads on the PANDAS/PANS forum here) who've helped others of us figure this thing out and get our kids the help they need. Good luck!

Yes. We've had a similar trajectory in terms of our DS's story . . . diagnosed with OCD at the age of 6, managed with therapy alone for almost two years, then suffered a dramatic increase at about 9, and then we added an SSRI (Lexapro). He did fairly well . . . almost "normal" in terms of academic and social behavior . . . until the spring of his 12th year. Then he fell off the edge of the world, and nobody and nothing seemed to be able to reach him. He had his first full-on panic attack that sent us to the hospital. After that, he was convinced that he was going to die. He wouldn't leave his room, spent his days completely immersed in rituals that, if we interrupted, he'd become enraged. He couldn't do anything without anxiety, and other symptoms showed up, too. He developed insomnia, separation anxiety. He couldn't speak in sentences anymore; he repeated words constantly. His memory, always exemplary before, failed him miserably. The psychiatrist kept trying different meds and different doses of meds, but nothing seemed to help. We had to pull him out of school because he couldn't sit in class for more than a couple of minutes at a time. He'd become convinced that he'd missed something the teacher had said, some piece of instruction, and that he was going to do everything wrong. That would ramp him up, and he'd bolt from the room. Eventually he spent his days curled up in the fetal position on the floor of his room, or in the bathroom. Yes, urinary frequency or, more accurately, fear of urinary frequency and pooping frequency had him spending more and more time in there, unless we forcibly dragged him out. Then one day in a bookstore, I came across a book called "Saving Sammy: Curing the Boy Who Caught OCD" by Beth Alison Maloney. Her son, Sammy, also 12 at the time he fell ill, went from being a bright, functional, happy kid to a basket case within a period of about 2 months. No meds helped, no therapy helped. He just kept spiraling downward. Then, finally, through a family friend, she heard about PANDAS/PANS and, even though Sammy had never had a classic strep infection in his life (no sore throat, no fever), she found out he did, indeed, have PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). Put on antibiotics, Sammy eventually recovered and today he's a senior at Carnegie Mellon University. When my DS was first diagnosed with OCD at 6, I'd come across PANDAS in my research, but I couldn't get anyone to take it seriously, especially since we had no history of strep with him. When he had his first major uptick in OCD at 9, I came across PANDAS again and again tried to get someone to pay attention, but I got nowhere. I even managed to convince the pediatrian to give him the standard swab culture on the premise that strep had been going around his school (which it had), but when it came back negative, I thought that was the end of that road. It wasn't until "Saving Sammy" came out that I realized someone might be classically asymptomatic for strep but still be suffering from an autoimmune reaction to it. I talked the attending psychiatrist at a partial outpatient program we had DS attending at the time into ordering the strep antibody blood tests (ASO and antidnase ; DS's levels were 5 times the high end of the lab's "Normal" range. Now, though this test is far from definitive, it was enough for me to take to his pediatrician and get her to agree to try a round of antibiotics. Within 48 hours of his first dose (4 doses into a 30-day abx trial), DS was a different person than he'd been for the previous 5 months. He wasn't miraculously "cured," but he started to become functional again. He came out of his room and sat down at the dinner table with DH and me for the first time in more than 3 months. He started sleeping better. Within 6 weeks, we had him back in school part time. And the healing and gains have continued since then. He still takes a low-dose SSRI and attends therapy every few weeks, but he is happy and healthy again. He's a high school sophomore, taking honors and AP classes who enjoys a social life and excels academically. The road continues, but I don't know where he would be now had we not been successful with the antibiotics. Perhaps you've heard of PANDAS/PANs before but thought it wouldn't apply because your DD has had an existing OCD diagnosis? Turns out that's not true, as demonstrated by my DS and a number of other kids. Dr. Susan Swedo of the NIMH has also acknowledged that an "abrupt increase" in OCD behaviors is also potentially indicative of an autoimmune response and not just an "abrupt onset." You mentioned that one doctor thought maybe your DD was responding to a virus? What about infection? Was she tested for things like strep, myco pneumonia (walking pneumonia) and/or lyme? These have also been identified as triggering neuropsychiatric behaviors when antibodies cross the blood brain barrier and get to the brain tissue. More recently, there's been a new book published: "Brain on Fire" by Sussanah Cahalan. This is an autobiography about this young adult woman's descent into "crazy" within a matter of weeks due to autoimmune illness. Below is a link to the most recent paper on PANDAS/PANS authored by Dr. Susan Swedo of the NIMH, along with Dr. James Leckman of Yale. If you haven't already ruled out autoimmune contribution to your DD's condition, maybe you could consider this? PANDAS and PANS All the best!

Anybody see her interview with Katie Couric? I DVDR-ed it and took a look over the weekend. I wish they'd spent a little more time on the sublter features of it all, but I do have to say that I think it is positive insomuch as it is yet another real-world account of what auto-immune disease can do to the brain. And that it CAN be recovered from! Dr. Najjar was also interviewed briefly. He basically said that the condition is "somewhat rare," but that to a large extent, that may be because it has been misdiagnosed, potentially for centuries. They sort of suggested that historical accounts of stuff like "demonic possessions" may, in fact, be instances of this kind of encephaletic onslaught. Still reading the book (on Chapter 12) but am struck by a few things in particular, thus far: Like some of our kids' PANDAS/PANS cases, her symptoms seem to build for some period of time, beginning with sublter atypical "personality" type discrepancies, like brief moments of paranoia, intense jealousy, fear, etc., only to return to her more "normal" self shortly thereafter. Sort of early on, she had sort of a migraine-type reaction to lights and movement, with the billboards in Times Square coming off as especially intense and assaulting in terms of vividness of color and brightness. Thus far, she's had two, very distinct seizure episodes . . . drop to the floor, loss of muscular control, biting her tongue, etc. All in all, very interesting!

Melanie -- Honestly, I'm not certain if the NAC is likely to "supersize" the impact of the Seroquel or counter it. As I understand it, Seroquel is an atypical antipsychotic that blocks/inhibits both dopamine and serotonin receptors. Now, does that mean that it helps prevent dopamine and/or serotonin from being absorbed as quickly, leaving them available for the brain's use for a more extended time, or does that mean that it prevents the receptors from recognizing the serotonin or dopamine, thus dulling their impacts on the brain? Meanwhile, NAC, as a precursor to glutathione, is supposed to facilitate, at the "trunk level" of the whole process, a person's production of serotonin; that's why, as I understand it, successful supplementation can mean lower SSRI doses or no SSRI dose at all, because it is inspiring higher serotonin levels on its own, without having the serotonin's uptake necessarily inhibited by another agent. Seroquel, I have to say, did nothing for our DS at lower doses, and at higher ones, it just knocked him out. I suppose if anxiety/agitation are high and sustained, the "knock out" impact of Seroquel might be welcome for a respite for both Danny and you, but other than that, I don't know what it brings to the table in terms of any sustained use.