MomWithOCDSon

Congrats to you and your DS, Kimballout! Thanks for sharing such good news!

Keeping in mind that Sammy Maloney's, my son's and a number of other kids we've "met" here on the forum began their primary or biggest PANDAS exacerbations at about the onset of puberty (around age 12), I fully believe that the hormones contributed to the enormity of the behaviors we saw. I mean, your average pubescent gets a little "nutty" around that time, and it just seemed to exaggerate our DS's issues. I know estrogen causes inflammation in my body, as well. Would love to see any studies anyone happens to have or dig up along these lines, though . . .

We use Roex, and the tablets are 500 mg. each; we're giving two each day to DS (morning and night) and one a day for DH and me. My understanding is that it is less the brand and more the concentration of the active ingredient -- oleuropein -- that you're after. This brand has the highest oleuropein concentration I've been able to find on the shelf (between 17% and 23%), though I think you can get supplements on line that also claim to be 22%. Important to keep in mind, of course, that the FDA doesn't regulate any of this stuff, so you're sort of at the mercy of the company in terms of truthful packaging and claims.

Well, LLM, you're not your "average" parent, so even if the tests only serve to confirm what you've suspected all along or even knew, given your smarty-pants-research-and-research-some-more tendencies, I hope you feel validated! Maybe even vindicated, in some respects?! Seriously, you're miles ahead of me on all this stuff, and I'm continually impressed by your resourcefulness and resolve! You must promise to write a book when you have this all sorted out, and I'll be happy to shove it under the noses of every doctor who's raised an eyebrow at me in that "Do you believe everything you read on the internet?," superior way! Power to the Persistent Parents! :wub:

StillHopeful -- FWIW, Abilify just ramped up our DS's OCD symptoms, so you might want to keep an eye to see if you can tie any increases in behaviors to when you began Abilify or increased dosage, etc. You can get inositol in gelcap form, so you might not necessarily have to package it yourself, unless you want to titer it up in sizes you can't find ready-made. Inositol didn't work for us, but I'm not sure we ever got it up to sufficient doses. I would suggest sticking with this, and so long as you don't get any negative results, see where the titering up will get you. We use NAC and it does have some proven efficacy against OCD behaviors; we've been using it for years. Some people, however, experience a worsening of behaviors when trying NAC for some reason (if you do a search here for it, you'll find the threads relative to that. I guess you won't know until/unless you try it. I don't know of any other "natural" or non-prescrip supplements/meds specifically for OCD, though there are some that help combat the anxiety that underlies the OCD behaviors, like valerian root, melatonin, antihistamines (quercitin, Pepcid). Good luck!

Hi CeeKay -- I've not known anyone who underwent Paxil withdrawal, but I, too, have heard it is tough. And I do have an immediate family member (not my DS) who went through withdrawal from two other SSRIs at two different times (Celexa and Wellbutrin), and both times were much, MUCH harder than the doctors had led him to expect. And he's a fully-functional adult without the other challenges our kids face. I think every psych should be given a treatment dose of each of these substances and then made to undergo withdrawal before they're permitted to prescribe. What they don't know about the withdrawal process is just short of criminal. Not to mention the fact that there is evidence that PANDAS kids can be, for whatever reason, more sensitive to SSRIs than the average patient, so the impact these drugs can have on them can be exponential. (You might Google Dr. Tanya Murphy PANDAS and SSRIs; there's a paper on this topic. I can also share my copy with you.) If you'll check into the PANDAS forum here, on this same site, you'll see a wealth of information pertaining to supplements, diets (including GCF), etc. that have helped many of our kids. The good news is there are a lot of things that may help; the bad news is that they continue to be very individualistic in terms of their responses to various things, so, to some extent, it remains a work in progress and an experiential process. Try it . . . if it helps, keep it up. If it doesn't drop it. My DS takes n-acetylcystein (NAC), an amino acid that is a precursor to glutathione and is supposed to help modulate brain glutamate; Lamictal, a prescription med used for seizure disorders but also thought to modulate brain glutamate; B6, as he's an "over-methylator"; zinc, helps tremendously with his focus; Pepcid, helps control histamine and has dramatically reduced his reflux, eczema and "fight or flight" anxiety reactions; quercitin, a plant extract that is an anti-inflammatory and a "natural antihistamine" that prevents production of histamine in the body at the T-cell level; fish oil, anti-imflammatory; and D3. As for OCD therapists in your area, unfortunately, I don't know of anyone specifically, but have you checked the IOCDF web site? They have a search page where you can request a number of specifics and get a list of therapists fitting your needs in a given geographic area. We've had good luck with therapists we've found through this registry. Here's a link: IOCDF - Find a Treatment Provider

Hi! My son just turned 16 and he has PANDAS. His primary symptom set is also OCD, but during exacerbation, he also exhibits separation anxiety, wild-eyed "fight or flight," loss of small motor skills (handwriting legibility takes a dive), ADD/ADHD-type behavior, sensory issues (noises, smells, etc. distress him), insomnia, increased urinary frequency and PDD-NOS/Asperger behaviors, along with an increase in the more classic OCD behaviors. Like your son, mine was diagnosed years ago with "regular OCD." He was 6 at the time and had been exposed to strep; however, because he is entirely classically asymptomatic to strep (no sore throat, no fever, etc.), we couldn't make the temporal link at the time, and the doctors blew us off. Therapy alone kept him functional for that first year, and then he had another, more dramatic exacerbation about 16 months later. Again, I couldn't make a link with strep, and the doctors blew me off as an "internet-obsessed mother" when I pushed the PANDAS possibility again; I even lied and told the pediatrician that I was concerned he'd contracted strep and talked her into a culture. But when it came back negative, I thought that was the end of that. We went back to more intensive therapy and accepted a prescription for an SSRI (Lexapro). It took him about 3 months, but he eventually got back to himself and maintained fairly well and "normal" for about 4 years, until spring of his 6th grade year. BTW, both of these fairly dramatic regressions/episodes/exacerbations were chalked up to the "natural wax and wane of OCD" by our caregivers at the time. In early April of that year, we got the one and only "strep letter" from the junior high school ever. By mid-May, DS was declining rapidly. By early July, he was entirely non-functional. He couldn't leave the house, he couldn't do anything -- even the things he once enjoyed -- because of all the compulsions and rituals involved with each and every move he'd make. He couldn't sleep. They changed, tweaked and increased his meds. Over and over again. Nothing helped, he just kept declining. School started in late August and we tried getting him there, but he couldn't do it, so we withdrew him. The docs continued to tell us it was an "OCD waxing," but it started to look like some sort of psychotic episode. In retrospect, I think he was reacting badly to all the medications and medication changes they were throwing at him at the time. Then I came across "Saving Sammy" in the bookstore and read it in one sitting. It was the first account I'd ever seen of a boy like my DS who was entirely asymptomatic for strep, but ultimately was found to be reacting to it nonetheless, and who had PANDAS. We ordered the titer blood tests, and the results were enough to convince our pediatrician to try an antibiotic trial. We started Augmentin XR, and the results were dramatic. Within 48 hours, my DS was a different kid . . . not wholly back to "himself," but miles away from the bundle of raw nerve endings he'd been for the last 4+ months. Our story is long, and I'll spare you the details, at least for now. But suffice it to say that had it not been for treating the PANDAS with antibiotics, along with a number of other strategies and supplements we found through the PANDAS forum here at Latitudes and research folks have kindly shared here, I don't know where our DS would be now. He has steadily improved over the last 3 years. We were able to get him back into school full-time after about 3 months of abx (with an IEP in place), and his return to other activities and "real life" has continued to emerge as time has gone on. In the end, he was on abx for about 1 year, and we continue with a low-dose SSRI and a number of supplements. He's an honors student in his sophomore year of high school, enjoys hanging out with friends, etc. He still has some OCD behaviors, but they are not debilitating, and most of them would not be obvious to outsiders. In the end, I don't believe in "regular OCD" anymore. I don't think there's any such thing. I think our kids are genetically predisposed to OCD or Tourettes or behaviors on the autism spectrum (maybe via methylation issues?), and then an infection and/or autoimmune reaction to infection triggers changes in the brain (inflammation, excess glutamate, excess histamine), and the "mental" illness becomes manifest. My DS, I feel, is proof that even having gone undiagnosed and untreated (in a medical sense) for PANDAS/PANS for years, treatment can still make a dramatic difference in health and the quality of life. Unlike young kids for whom PANDAS diagnosis and treatment is accessed quickly and thus all of their OCD seems to be abated nearly immediately, I'm not sure if my DS will ever be entirely OCD-free. He carried it around for years, accommodating himself, his behavior, his world-view, etc., because of it. So now, maybe some of that thinking and behavior is pretty entrenched. Maybe he wouldn't be "him" without some element of that remaining in his life. But he's living his life, he's happy, he's productive . . . he's a far cry from that quivering ball of flesh he'd become at age 12. So, I urge you to give PANDAS/PANS treatment a try. You have little to lose, and everything to gain! Feel free to PM me! Take care!

I know long-term abx use is controversial among some in the medical community, and even some of the leading PANDAS/PANs docs I've heard speak do not embrace a long-term prophylactic regimen, including Dr. Swedo. However, I specifically asked the "creating resistant strains of bugs" question of a panel at last summer's IOCDF conference with included Drs. Swedo, Latimer and Murphy. Across the board, they said their issue was NOT with creating abx resistance, but rather c-difficile. They're concerned mostly about c-diff. We use olive leaf in our house, and DS also gets a daily dose of coconut oil. He has made it through the winter with only one cold (knock on wood) -- no flu, no strep.

While the "Explosive Child" was very helpful to us, my DS was older when the "rages" hit him . . . 12-13 . . . and the rages were mostly turned inward, on himself, rather than outward, toward others. Still, they were difficult, disruptive and painful to watch and listen to. Like a couple of others here, however, I will say that Lamictal was a true turning point. Somehow it turns down the "volume" on the emotional response to triggers. It didn't make DS any less himself or "zombie" him out like Risperadol or Zyprexa had done; it just made him somehow less "married" to his anger or his indignation. It gave him the ability to apply age-appropriate perspective . . . to take a step back and assess the situation more rationally and less emotionally. Given all that, I give it 2 thumbs up! Hang in there!

T.Anna - did the Pepcid help?

I think that's actually Dr. Marc Weissbluth. Yes, great book, and he's followed it up with some information and strategies for older kids, too (you can Google him). A friend of DH's recommended this book when I was pregnant with DS, and then we found out Dr. Weissbluth was in our insurance group and local to us! He was DS's pediatrician for his first 2 years of life, until we left the city for the suburbs and couldn't see trekking back down into the city's abyss for every ear infection after that! Great doctor, great sleep advice, worked like a charm for DS!

Yes, it sounds like it might be reflux. Our DS had reflux, along with eczema and some "burst" anxiety moments that looked to us like true "fight or flight" responses. Pepcid set all of those aside, from nearly the first dose. Pepcid is an H1 blocker, so it works in the gut to lower histamine, but folks high in histamine sometimes experience anxiety as a result, so an H1 blocker can be of benefit in more ways than one. You might start with the 10 mg. ("regular strength") and see if that helps; if he's still experiencing reflux, you can go to the 20 mg. ("extra strength"). Above 90 pounds, a "kid" is physically considered an "adult" with respect to OTCs, but you might as well give him the lowest effective dose possible.

Well that's unfortunate. I'm a little bit of a salt lover, myself.

I could not agree more! Makes me angry, too! My mom always told me (maybe yours too), that "Life isn't fair," but to see that platitude lived out before your eyes, by your child, is painful beyond measure. It can, and will, get better. Hang in there.

Another thought . . . If your depression is possibly linked a SAD (seasonal affective disorder), or even just some "winter blues" because of the decreased options for getting outside, sunshine, etc. . . . We invested in one of these a few years ago for DS, and it definitely helps his getting up in the cold, dark winter mornings. Then DH purchased one this year for himself, feeling as though he needed a little "boost" given our ever-dreary weather of late! Happy Light

:wub: :wub: My DS isn't currently phobic about leaving the house or going outside, but he nevertheless harbors "vampire" tendencies . . . prefers the "Man Cave" and staying up til all hours of the night to the great outdoors and daylight! Hence, he gets 4,000 IUs of D3 daily!

Oh my! Please take care of yourself! Can you get anyone to help you take some stuff off your plate for a few days so that you can downshift a bit? Is your anxiety sort of always there . . . registering at a low hum/low RPMs . . . but you've just reached a saturation point now? Or is this a sporadic sort of thing . . . it comes and comes on strong, but then it will fade and not be overly-intrusive for an extended period? I ask, because I would probably have different suggestions, depending. I have a family member who sometimes suffers from occassional but somewhat debilitating anxiety; he takes clonansepam on those occasions. I know others sometimes take valium or xanax for similar purposes. Longer-term, I know SSRIs work for some, but not all. Officially diagnosed with PANDAS or PANS or no, I suspect methylation, immune, gut health, etc. play a role in how all of our brains work and process stress, etc., so unfortunately, that's kind of difficult to say. Supplement-wise, we have found that valerian root will take the edge off for a short period . . . get you over a "hump," so to speak, and melatonin can quiet a mind so that you can get some sleep, too. We've just recently decided to try lemon balm based on another post here; I can't say whether I feel any specific results as of yet (my anxiety tends to hang at a low hum, probably 70% of the time, but I rarely get totally overwhelmed), nor have I seen any specific results in DS. Finally, if you have any signs at all that you may be a person who's high in histamine (allergy response, reflux, etc.), I can't recommend a mere 20 mg. Pepcid enough. It has made such a difference in our DS, particularly with respect to that flash-anxiety, "fight or flight" sort of response to a trigger or situation he finds highly agitating. It seems so simple, yet so effective. Sorry you're experiencing this; please take care! Many cyber hugs headed your way!

Oh wow . . . thanks!! I am hopelessly overbooked at the moment, but I may try to fit this in somehow, as well! Thank you, my utterly awesome, geeky friend!

Like the others have said before, I too can feel your pain. I think there's a natural tendency for us to want faster relief, faster recovery. I mean, after all, some of our kids fell into this abyss overnight, or within a matter of weeks, so why does it seem to take so much longer to get them back? I don't know, it just does. I'll also echo LLM . . . these is no "one size fits all" on intervention and recovery, and I think, at least anecdotally, that most of us have found it takes some combination of interventions in the end. You're seeing some improvement in mood, health and energy, so revel in that and exploit it as much as you can . . . make the most of the momentum that might grant you. At the same time (I know it sounds like a contradiction), try to stay patient. Most of the time, this is a marathon, rather than a sprint. When it comes to some of your son's more troubling behaviors, i.e., not showering, not changing clothes, holing up in the house, I would really encourage you to try and find a good exposure response prevention (ERP) therapist, or potentially do some reading/studying ("What To Do When Your Brain Gets Stuck" or anything by Dr. Aureen Pinto Wagner)and see if you can conduct some in-home ERP exercises to help "bump" your son out of that particular rut. In our experience, some of that behavior is due to avoiding the task (showering, for example), because there are some rituals and/or compulsions that the task inevitably calls for that are distressing, and the menial task also becomes mentally and physically exhausting because of all that distress and anxiety. But therapy really can help, especially if the other interventions (IVIG, etc.) are helping him gain ground elsewhere. The sad truth is, even with improving immune health and mood, some of that avoidance behavior may become habitual and harder to break through because it takes on Boogie Man proportions over time . . . the longer it's avoided, the bigger the monster can become, completely disproportional. Unfortunately, as our kids start to heal, then, sometimes we're required to be "cruel to be kind" or "tough Mom" to help them get over those hurdles. Hang in there!

We asked about Straterra fairly early on in our PANDAS journey, primarily because it was an attention-performance med that Sammy Maloney had used for a period, and our DS and Sammy seem to have a lot in common both physically and mentally. Our psych at the time said he had not found a whole lot of efficacy with Straterra and instead gave us Intuniv, another non-stimulant ADD/ADHD med. It made DS very sluggish, especially by afternoon, and, at times, lowered his blood pressure more than we liked. We found if we kept him up with regular snacks in the afternoon, after a few weeks, he seemed to "regulate" to the Intuniv. However, it never really did much to improve his focus. So, given the side effects, we dumped the med altogether after about 8 months, deciding it wasn't worth it. What we have found to be very effective for DS's focus, however, is zinc. We use a SolaRay formula called Opti-Zinc, which is supposed to be a maximally bio-available formulation. I know there's a condition called KPU which causes zinc depletion in the body in some folks, and perhaps that's why DS benefits as much as he does from the supplementation (we've not had him tested for this condition, however). But I have to say the "post-zinc" DS and "pre-zinc" DS are light years apart with respect to focus! Quite honestly, for us, it's one of the few "natural" rememdies we've found to be infinitely more efficacious than the prescription med.

We use quercitin daily . . . have been for a couple of years now. We actually use a SolaRay supplement called "QBC" which contains quercitin, bromelaine and Vitamin C. My understanding is that quercitin acts as a natural antihistamine, actually preventing production of histamine at the T-cell level in the body. Decreasing histamine would, one would think, decrease inflammation. I know that its helped both DS and me with our seasonal and household allergies.

Get your rotten tomatos at the ready . . . I think I'm a little sensitive on this topic. Please understand . . . I'm not a proponent of Big Pharma, and if it were up to me, I would gladly and readily replace every prescription medication we currently use with an herb, an amino acid, a neurotransmitter, a "natural" alternative, given a similiar efficacy. BUT . . . IF your DD is responding that quickly to the Celexa, then she is likely responding to the intended action of the med, which is the making available for her brain's use an increased amount of serotonin. So, you could go with something like SAMe, or inositol or St. John's Wart, but these are just non-prescription methods for achieving that same end (availability of more serotonin), and you may, in the end, get the same behavioral response. The only difference may be that the "natural" substances tend to be somewhat less focused, less specifically designed for the ends. So in taking a supplement, you are likely to get a reduced dose of the active ingredient, and a lower dose may be more beneficial overall. This is what has been found to be the case with prescription SSRIs and PANDAS kids, after all . . . that, when used, exceptionally low doses may be beneficial while a "normal" dose can have the complete opposite effect. So, while SSRIs may be a true Bogey Man when it comes to some PANDAS kids, it may be more beneficial to consider WHY it's a bogey man -- why the kids have the response that they do -- rather than assuming that it is the nature of the prescription med in and of itself that's causing the negative reaction, and seek to replace it with a "natural" substance that may very well result in a similar response. JMHO . . . . .

Uh . . . well, I thought I was watchin', but the link only goes to her home page, looks like, and I don't see any video links on there at all. Is there an alternative link, maybe?

I'm watchin'! Thanks!

Yes, Astrid. You not only have more than 90% of the behavioral signs, you have a direct temporal association with infection and onset of the symptoms. I would seek some PANDAS/PANS help sooner, rather than later! Good luck!