MomWithOCDSon

We used NAC with Augmentin to no ill effects. With respect to the psych meds, however (Zoloft and Abilify), because NAC is thought to work along some of the same pathways as a precursor, it can diminish the appropriate dose of an SSRI; this has been our experience and the opinion of our psych, as well. So you will want to keep an eye on your child in order to avoid activation. Here's a previous thread with links to two studies done with NAC for OCD, one for kids and one for adults. At 100 lbs., I think your child would "qualify" physically for the adult dose, but given his other meds, especially, you might want to follow the "low and slow" principle! Good luck! ACN - NAC Thread

The turning point was abx, definitely, and we had him on Augmentin XR for almost two years; when we finally decided to take him off, we weaned very slowly because each time we'd tried to reduce the dose or remove it entirely before, he'd regressed badly. Finally, after about 20 months on, we were able to wean him off over about 4 months, and he's been off ever since (just over a year now). Thanks to this forum, predominantly, along with the Augmentin, we started supplements, the best/most influential of which (for him, anyway) we've stuck with: probiotics, D3, fish oil, zinc, coconut oil, B6 and NAC. When we stopped the abx, we also started giving him olive leaf, which really does appear to have helped protect him from catching many of the bugs his friends and classmates have come down with for the past year. I attribute some of that to the NAC, as well. He's also still taking a low-dose SSRI: Zoloft. We hope to wean him off in the next year or so but feel it still supports him, especially when school gets demanding with respect to workload, testing, etc. Another turning point was adding low-dose Lamictal, an anti-seizure med that is also a glutamate modulator. It didn't "fix" his OCD, but it enabled him to look at it more objectively; it allowed his intellect to preside over his emotional response so that he could really participate in ERP and let things go more readily. Once he started to come out of his "OCD fog" some via the abx, we had him in therapy 3 days per week for a couple of months; it was either that or take him somewhere like USF, and it was less disruptive for us to stick with his current therapist and just go more frequently. As he got a grip and we learned some new strategies for supporting him, as well, we scaled that back to once a week, and then once every 2 weeks. We're now checking in with the therapist about once a month, generally, unless something comes up. His healing trajectory was dramatic after the introduction of the abx; it was like going from 0 to 60 in about 48 hours, and that continued for about 3 weeks. Then he plateaued and we started to worry that he wouldn't continue to improve. Truth is, he did, and still is. Sometimes when he hits a fresh bump or "stalls out," I have to pull out my journal and read through a bit to remind myself that, even though his improvement has been slower and more subtle as time has gone on, he has continued to improve, nonetheless. Only now it's a steady creep instead of a dramatic "BOOM!" The list of behaviors he used to display, though, versus what he displays now, is longer than I am tall. Somebody else once described it sort of like peeling away the layers of an onion, and that image really works for me. He's shedding the layers of the illness and the coping behaviors/mechanisms he'd built up over many, many years to contend with the assault on his thinking, his feeling. For him, it just hasn't been overnight. We considered IVIG, but Sammy Maloney's story resonated so strongly for us . . . particularly given the physical and mental parallels between our DS and Sammy, that we elected to ride it out with the abx. Perhaps IVIG would've gotten him better, faster, but perhaps not. Sincerely, nearly every day is better than the day before. And you read Sammy's story and realize it took him not months, but years, to fully heal. And then there's the more recent story of Susannah Cahalan ("Brain on Fire") who, struck in her early 20's with a similar auto-immune assault, required years to heal, as well. I know there are many here who've thankfully had much faster paths and for whom a tale of "years" of healing is a horror story, rather than a hopeful one. For us, though, it's the opposite because we're just so happy to see him continue to improve rather than getting "stuck" in the place he began, tangibly, at age 6, washing his hands until they bled. I guess that's just a perspective that says, if your course is not a short one, a fast one, that doesn't mean it's for naught or that things won't still continue to get better. Thanks for asking! Near and dear to my heart, obviously!

Sorry, no direct experience, but it does sort of fit a pattern, doesn't it? I mean, if caffeine revs you up, and too much of it can make some people edgy with or without PANDAS/PANS/OCD, it stands to reason it could impact your DS. My DH isn't clinically dxed with OCD, but he definitely has some characteristics, along with some propensity toward depression. We've found we really have to limit his caffeine intake for his best health. So, his pop is caffeine-free, his coffee is 1/2 and 1/2, and his tea, when he has it, is non-caffeine, as well. I think I'd just switch out the tea bags in the pantry for decaffeinated in the same flavors. I don't think your DS will taste the difference at all, and it might help diminish the "edge," especially at night-time. Good luck!

Hmmm. Never heard that before, but it's an interesting hypothesis. I wonder if that's a response from her clinical experience, or if she has some research reference for it? If/when you see her again and you think to ask, I'd love to know! We have a psych appointment at the end of the month, ourselves, and our psych seems to be pretty "up" on research, so I'm going to ask her, as well.

Yes! Unfortunately, my DS was diagnosed pretty late in the game . . . at age 12 after having suffered since at least age 6 and we think considerably earlier than that . . . 3 years old, likely. It's just that the OCD didn't show up recognizably/clinically until he was 6, and because he's asymptomatic in the classical sense with regard to strep, it took us another 6 years to establish a relationship and get someone to take us/PANDAS seriously. In the depths of the PANDAS, at 12, he was completely non-functional, curled up in the fetal position on the floor of his room, fearful of everything and everyone. Not attending school, had no relationships outside of family and doctors, couldn't undertake the most innocuous task -- showering for instance -- without having a meltdown because of all the mental and physical rituals he felt compelled to undertake while, at the same time, knowing that he wasn't supposed to. He was a blubbering, insomniacal, fragile, shell of who he really is. Today, he still has some OCD and maybe, on some level, he always will. But he is happy, healthy, doing well in school, has good friends. He is incredibly intellectually fast, quick-witted, has a great sense of humor, and a good sense of self: who he is, his strengths, his challenges. He sleeps soundly, is enthusastic and positive-minded about each new day and his future. We continue to support his fight against the remaining OCD, and every day we see him gain a little more ground, a little more control over his own life. It's rewarding and heart-warming to watch him excel and achieve his goals. I feel positive that everyone can get to a healthy, functional place, even if "100%" isn't eminent or has to remain a long-term, rather than a short-term, goal. Some folks get there more quickly, and some of us have a slower slog, but in the end, we're all moving the dial in the right direction!

What was her reasoning for cutting back on the D3? That's the first time I've heard that, so I'm curious.

In our experience, school refusal is one of those OCD things that feeds off itself. So in the end, it's about breaking the cycle. While I do think you need a different/better/more hands-on therapist, one of the things that Dr. Storch and all the therapists at USF are very strong about (I've heard them speak on it, in a panel, and they've authored a paper, as well)is that the entire family has to get behind the theme that the OCD cannot be accommodated. That by giving in to the child's OCD needs/demands (like school refusal), you are inadvertently validating the child's OCD fears, giving him the message that he has good reasons for fearing school and that you, on some level, share them. Think of it as "tough love" in the extreme,sometimes. Here's an abstract for one of the papers (I have a full copy of it that was handed out at a conference, that I can email to you if you like): Storch - Family Accommodation and OCD So a therapist can help, and the good ones will even get involved on site at the school, work with the staff if necessary, etc. But it will be equally important that you and the rest of the family line up with the therapist, as well, and basically speak with one voice. Here's what we did. DS had school refusal before we started PANDAS treatment, and then even once we started treatment and he began to feel better, the mere thought of returning to school sent him into a tailspin. Our therapist at the time did not go to the school site, but he would've if we'd needed him to; fortunately, we had an IEP case manager at the school who was up to the task and helped us execute a plan, along with our therapist off-site and in sessions with us and DS, the school psychologist and the social worker. DS started to go back to school, one class at a time. We started with his easiest class -- his resource class period -- which happened to be in the middle of the day. We dropped him off and picked him up, and he went straight to the classroom. He used this 50-minute period for a couple of weeks to meet with each of his teachers, ask them questions about some of the work he'd done at home during homebound, get help with anything he'd had trouble with, etc. Once he'd been doing that one class for a couple of weeks and his case manager could see that he was settling in and feeling less anxious during that hour, we added the next class, the one after the resource class. And so he attended those two classes for a couple of weeks while he got re-acclimated and rebuilt his confidence that he could handle being in the classroom, navigating the halls, doing the work, etc. We kept up that program, adding one class back to his schedule at a time until he was going from the middle of the day through the rest of the school day. Then we began to work backwards, adding one class at a time before his resource period, until he was back in school for the full day. It definitely helped that, for the first few weeks, he came to and left school essentially on his own, without having to navigate the chaos of crowded hallways and lockers when all the kids were coming and going. Even once he got to attending on a full schedule again, we arranged for him to use doors in and out that were not designated for the masses, and he was allowed to enter the building 15 minutes before the first bell rang so that he could go to his locker and get his things (and himself) together without having to deal with the crowds and the noise. We also had a "back-up" plan ready in the event he got overwhelmed and needed a break from class at some point. His case manager was his point person, so he would head to see him first; if he was unavailable for whatever reason, his next go-to was the school social worker, with whom he was building a good relationship. The third option was his Gifted Education teacher, who volunteered and who was wonderful with him, so he always felt safe and accepted, however he was feeling at the time. The staged plan was demanding for us because of the drop-up/pick-up demands, especially for the first several weeks, but it allowed DS a chance to get his "sea legs" under him again, to remember that he could be successful at school and engaged while he was there . . . . that it wasn't all fears and tears. It also helped us with our "tough love" responsibilities: school was non-negotiable, but initially, it was only for that one period each day. And then it was two periods each day, and so on. So we had to be hard-butts and insist he make it for the agreed-upon time, but it helped take the sting out that we weren't insisting that he just jump into the deep end right off the bat, without having a chance to get accommodated to the temperature of the water. In the event you don't have any major support at the school itself (like a case manager or invested teacher), then I would look for a therapist who is prepared to roll up their sleeves and go on-site, walk your child through what his return might be like, spend some time working with the school staff to devise the "back-up" options, etc. so that your child -- once he gets in the school --- can stay there, successfully -- rather than having to go to the office and call to have you come pick him up. I hope some of that helps. There are certainly other ways to go about it, too, and they probably vary by the child's age and maturity level.

Oops! You're right, Lilly! Sorry about that. I thought they were SolaRay, but now that you've followed up, I checked again. They're actually Carlson Solar D Gems. We use the 2,000 IU one, but I've seen them in various strengths, from 1,000 IU up to 5,000 IU. Sorry for the original misleading info!

Currently, we buy all of our supplements -- vitamins, probiotics, omega's, etc. -- at the Vitamin Shoppe. I have not noticed any lack of/reduction of effectiveness in buying their brand or any other brands that they carry. Generally, for NAC, melatonin, B6, milk thistle, I'm buying their brand (Vitamin Shoppe). For D3, E, quercitin, zinc, I'm buying SolaRay, which is also available there. Probiotics, I pick up Renew Life and Jarrow, also available there. Finally, for olive leaf, I'm buying the one on the shelf that has the highest oleuprien level, and Vitamin Shoppe always seems to have a decent variety at various price ranges to chose from. So, for me, it's pretty much one-stop shopping! You know, I think that their computers keep a record of your shopping (which products, etc.), so you might ask if they have the ability to create a list -- item and brand -- once you've settled on what you like. Then that list could be on hand for your relatives as well as for you. They also have a pretty user-friendly on-line shop, and I'm sure you can keep a record of your purchases there. Good luck!

Yes, Ibuprofen can help reduce inflammation and alleviate some symptoms, but it may not help enough in certain circumstances, and, t any rate, it is only addressing the inflammation itself, and not what's driving the inflammation. I don't know if PANS can be 100% caused by allergies, but allergies can certainly contribute to it, exacerbate it, and/or prolong it. Many of us have kids who flare during allergy season. We use histamine blockers like Pepcid to help our son. Why is there controversy? Why does the earth rotate on its axis?! Seriously, though, I think it's the extended fight for ego and territory among the various medical disciplines, the unwillingness to cede territory to one another when it comes to crossover between mental and physical health. And Big Pharma probably plays a significant role, too. What will the drug companies do if OCD, Tourette's, bi-polar, schizophrenia and/or autism can be cured or at least controlled by the use of generic antibiotics or supplements, or even IVIG?!?! What will all the psychs do? They might have to learn to actually engage in therapy instead of relying upon a prescription pad! And then, to be fair, we remain a little behind with respect to research in the area of PANDAS/PANS, and currently, many of the top docs and researchers in the field are not fully aligned with respect to treatment protocols or even the linical diagnosis. We're working hard at playing catch-up, but it's a slog! Each PANS doctor has his own perspective and treatment protocol so, no, they're not all the same. Sometimes we select one by geography, and sometimes we select one by protocol, and sometimes we select one purely by "gut.". The truly remarkable thing about Dr. T, in my opinion, is his intellectual curiosity. He's not one to shut you down or tell you he's at the end of what he's willing to do for you or your child. He keeps looking, trying different interventions, in search for the one(s) that work. That's not to say the other doctors aren't good and caring, too. It's just that they tend to operate differently. I would probably keep my appointment with Dr. B and see how it goes. How does it feel in your gut? Then choose. Finally, as to long-term use of Motrin, I've heard various things . . . From there's no issue with it at all, to issues of possible toxicity. You're probably best off to run it past the doctor, but you might also consider trying some other anti-inflammatory items, too, such as vitamin D3, omega 3's, curcumin, turmeric, OTC anti-histamines, quercitin, coconut oil. Many of these are less taxing on the gut and liver but will assist in controlling inflammation. It usually takes a little longer to see results than with ibuprofen, though. Sorry you're dealing with this, but welcome to the forum!

Yes, we saw some of the same pattern . . . many of us here call it "sawtooth healing." There are so many components to the healing and the impact of the meds and supplements, so your "off" days could be attributable to any number of things, including re-exposure, allergens, bacteria die-off, gut bacteria imbalance, histamine regulation, even maybe intracellular bacteria release as biofilms get broken down naturally or as a result of med and/or supplementation. I also think sometimes we forget that our kids -- even pre-PANDAS or post- PANDAS -- will sometimes have "off" days just as a natural response to growing up. Whether that's hormonal or what, I don't know. But maybe the PANDAS lenses we tend to wear exaggerates or makes us hyper-aware of those temporary differences? Glad you're seeing generally positive things! Happy New Year!

Not to beat a dead horse here, but again, my DS never tested positive for strep, nor did Sammy Maloney. But apparently strep was nonetheless the culprit because of the clinical evidence: 1) high ASO, 2) increase of symptoms following exposure, and 3) positive response to abx known for strep-killing potential such as Augmentin and/or zithromycin. The strep test is not the end of the line, and a PANDAS doc knows that. You need to get to a doctor who will examine and consider the entire clinical picture and not stop with a negative swab.

Yes, our DS took 2,000 mg. of Augmentin XR daily when he was 12, but I would expect weight to have more to do with the body's ability to metabolize that dose than age. My son was about 125 lbs. at the time, which technically put him into the "adult dose" range for meds ("adult," as I understand it in medical terms, is 90 pounds and over). We broke the 2,000 mg. into two doses, though: 1,000 mg. in each of the morning and evening.

Yes, this is OCD. In addition to the medical interventions, I would really encourage you to consider some therapy for your DD, if she's not already getting some. It will help minimize the OCD.

I know Dr. Michael Jenike is in Boston, but I don't know the extent to which he takes on new patients, or if he takes pediatric cases at all. Here's a link to the International Obsessive Compulsive Disorder Foundation's Treatment Provider database; it's a great source for finding a therapist who fits your criteria. IOCDF - Find a Treatment Provider Good luck!

Ditto! I'm sure Dr. T. and/or the therapist has told you that it can take a while for an SSRI to have a palpable impact . . . sometimes as long as 2 to 4 weeks. However, we have seen a change within as little as 2-3 days on occasion, so will keep a good thought that your DS responds quickly and feels better soon. Hang in there!

My DS never had an active infection that we knew of . . . he was entirely classically asymptomatic for strep . . . and yet his titers remained consistently high. Sammy Maloney had a similar presentation. In retrospect, I'm fairly certain now that my DS had harbored the strep bacteria in his sinuses, as he'd suffered from recurrent inner ear infections and respiratory problems since about 18 months of age through the age of 3, and thereafter continued to have upper respiratory issues, even after the ear infections stopped. Some families here have gone to lengths to have the sinuses scoped, etc., and have found nodules, etc. where the bacteria has hung out. You need a PANDAS specialist because PANDAS is, in the end, a clinical diagnosis. Some kids have high titers, some kids don't. Some kids have active, readily discernable infections with fevers and/or sore throats, some kids don't. But all of them suffer from an astonishingly similar set of behaviors as a result of the auto-immune response, and PANDAS specialists recognize these. If you have high titers, you might be more likely to secure help from a non-PANDAS specialist (we were), but there's no guarantee of that, as you've found.

Get a second ASO; NIMH (Swedo) considers the direction of the titers -- rather than a single freestanding measure -- as indicative of trouble and of the condition. If the number continues to trend up, or fails to fall on the heels of treatment, then that's indicative of an auto-immune imbalance. You need a PANDAS doc. The "not walking straight," sensory issues and unabating anxiety are all signs of infection and autoimmune response to the infection; my DS did these same things in the depths of his illness (he actually dragged a leg behind him, which I thought of as a mere "quirk" and not a physical manifestation of the illness until I came here and "got schooled"!). No psych ward, but I do agree with dcmom regarding the positives of therapy. Though it also sounds to me as though your DS is still in the midst of a pretty dramatic episode of illness and needs medical intervention, pronto!

We've never done any of these sorts of exercises . . . never even heard of them. And we've been at this OCD stuff for quite a while now (9 years) and the PANDAS thing for 3 of those years, as well. Inherently, I don't know how merely smelling and/or touching things could "naturally increase serotonin and dopamine" levels in a person's brain, though I've seen studies that demonstrated that stroking a pet every day could lower cholesterol and blood pressure. So who's to say, really? Based on some of the most recent information and research, it appears that "naturally" and lastingly adjusting serotonin and/or dopamine levels in the brain likely has more to do with correcting/adjusting the methylation cycle than it does anything else, and that most of the other interventions we undertake, whether it's SSRI's or NAC or whatever, is just a "patch" for the broken/twisted part of the cycle in the meantime. LLM, do I have that right? It doesn't seem like the kind of therapy that could cause more harm than good, so presuming it's not exhorbitantly expensive, why not try it? Let us know how it goes!

Yes, we did. That being said, my DS's last use of Luvox, though, was after several months of abx treatment for the PANDAS, and we kept the dose very low. Full disclosure, also, that we already had a successful history of low-dose SSRI use, prior to a PANDAS diagnosis. DS was mis-diagnosed at 6 with "regular OCD," and at 7.5 years, when the OCD became too intrusive for functionality, was prescribed Lexapro. How much of it was the Lexapro and how much of it was his overall physical health, we may never know, but he did very well without any additional interventions (other than some ERP off and on) for the next 4 years. He now takes low-dose Zoloft; we transitioned from the Luvox to Zoloft because we were considering entering him in the NIMH Riluzole trial, and Luvox was contra-indicated with Riluzole, so he would have to successfully transition or wean off before he could be admitted. Plus, Dr. Storch at USF has spoken several times about the effectiveness of Zoloft with his pediatric OCD patients, so we felt like that was a good indication. You're aware of Dr. Tanya Murphy's paper regarding the use of SSRI's with PANDAS kids? Basically, the advice is very low and very slow because our kids tend to be very sensitive to these substances, plus, depending upon what other meds and supplements they may be taking, the impact of the SSRI may inadvertently be "enhanced." Unfortunately, these are issues that your everyday psych or ped typically isn't aware of, so there are lots of stories about kids getting "activated" -- i.e., more of all the things you're trying to abate (anxious, angry, emotional) -- rather than helped by SSRI's.

I find this really interesting; I'd never thought of it, but it makes sense, the whole gut biodome thing, etc. My DS was on Augmentin XR for 2 years and he did go through a slightly "pudgy" phase. However, he hasn't been "skinny" or "slight" since he was 6 or 7, and I attributed his weight gain to 1) the low-dose SSRI he began taking, 2) feeling less anxious and "riled up," and therefore likely burning fewer calories in nervous energy, and 3) natural growth patterns. He's definitely slimmed down in the year since we ceased with the Augmentin but, again, I sort of attributed that to a natural growth pattern. We still do probiotics, but not at the levels we did when he was taking the abx. Just as an aside, our DS would slide back every time we tried taking him off the XR also. We finally just decided to stick with it for a longer term; in the back of my mind, I kept going back to Sammy Maloney's XR time-frame, which was a couple of years. After about 20 months, we started weaning down very slowly, instead of taking him off cold turkey. There were times when we thought we would see a little behavioral backslide, but he finally seemed to be able to recover on his own after a few days, without our increasing the dose again. He took his last reduced dose about 4 months after we started the weaning, and he's been off ever since (knock on wood!). Now we dose olive leaf twice daily. In the year since he's been abx-free, he's had two cold viruses, and they encouraged some extra OCD behaviors, but between the olive leaf and ERP, he's been able to beat them back and maintain pretty well. Good luck to you!

I think I might be a little careful about going too strong with Vitamin C since the body excretes what it can't use, and that might contribute to some more "bathroom" issues which he might see as justifying his OCD behaviors, if you get my drift. I like the idea of putting him on an ibuprofen regimen, and I can personally vouch for Pepcid being a worthwhile trial, also. It can tamp down the anxiety if too much histamine is contributing to that at all. Other ideas until you can get hold of abx: valerian root, melatonin, D3 (anti-inflammatory). So sorry! Let us know how/if any of our ideas help at all, and what the verdict is once you can get DS to a doctor!

We didn't get a PANDAS diagnosis or start PANDAS treatment (abx and one course of steroids) until my DS was 12, and his medical/mental history suggests he's had PANDAS since about the age of 3. I think the healing process is longer than it is for kids diagnosed and treated quicker, and, in our case, we may have some OCD for years to come, given as he'd developed those behaviors for years prior to PANDAS, but the abx brought him back from the brink and helped bring him back to his functional, happy self. I would just encourage your friend to reach out to one of the PANDAS docs regarding an immune panel, clinical diagnosis and treatment.

Same to you, Dut! And everyone else, too!

T.Anna - Sorry this is happening to you on Christmas! "Stuck in the bathroom" sounds so familiar, unfortunately. That's the OCD, I'd bet. I like the idea of taking him to a minute-clinic; hopefully, he'll swab positive or have a fever, and you'll be able to get another script that will tide you over until you can get back to your real doctor. Even if he doesn't have a fever or the quick swab comes back negative, I would try telling them that he just recently completed a round of abx for XYZ (strep?), and perhaps they will draw their own conclusion that the infection has not been entirely beat and write a script without your having to go into the whole PANDAS thing with them. Just FYI, for quite a while, when we would end a course of abx and attempt to go without them, we could set our clocks by the return of symptoms on Day 8 following cessation of the abx! So even if he hasn't been beset by a "new" infection, it would not be unheard of for the symptoms to return about this time following a course. You probably need a 30-day course, at minimum, but you're unlikely to get a script for that from anyone other than a well-versed PANDAS doc. So, in your shoes, I think I would take what I could get from the minute-clinic and hit the phone lines first thing tomorrow for some longer-term assistance. Hang in there!