MomWithOCDSon

I'll add that my DS is more heat sensitive since starting Zoloft, also; this is a pretty well-documented side effect in some of the population. So, especially during a hot, humid summer, DS always has a water bottle in hand, and we don't spend excessive periods doing high-energy exercise is high temperatures. Yes, I remember LLM's article and heartily agree that none of these interventions and/or therapies operate in isolation. So we need to be mindful and watchful of all the pieces as best we can. Reminding me about the methylation and the MTHFR mutations again, I think that's an angle that, in addition to keeping an eye on it with our kids, we need to be bringing that up with our docs and/or psychs who are potentially prescribing these meds. Several years ago, again on an IOCDF panel, Dr. Storch commented that kids with "comorbid" behavior profiles -- OCD combined with TS, ASD, Asperger's, General Anxiety, ODD, depression, etc. -- tend to respond better to lower doses of SSRIs. At the time, he wasn't even addressing PANDAS/PANs in this session for therapists and practitioners, and I remember being struck not only by this opinion and how compatible it seemed to be with PANDAS/PANs kids, but also by the chorus of "Oh yes!" and "I've seen that, too!" among the other doctors sitting in the audience in the room! Things that make you go "Hmmm:" Perhaps what Dr. Storch and company are seeing, at least at times, is a response to SSRI's by kids with methylation issues? Anyone want to run that up the flagpole with him and/or Dr. M., or know if they have ever considered this particular point?

I smile because I asked Dr. Eric Storch of USF that very same question a couple of years ago, after a panel he was on at the IOCDF conference, and he wisely refused to give me a quantitative answer! But he is, of course, a doctor and he has to protect himself. So, let me say first that I am not a doctor, or any kind of medical professional, and you should seek out someone who has not only experience with this but also the credentials to back up their recommendations and/or prescriptions. Based on experience only, as a parent of a PANDAs kid who's taken SSRIs in the past and is currently taking Zoloft, I would say, depending on your child's medical and psychiatric history, a Zoloft dose between 12.5 and 25 mg. would be a "low dose" level of trial for that particular med. My DS began Zoloft at 25 mg., but he was not only older and larger at the time (12 yo and about 110 lbs.), but he also had previously taken another SSRI (Lexapro) successfully for a period of time. So we had all that history to go on. Honestly, I would start at the lowest possible dose and titer up slowly (every 4 to 6 weeks) until you find the "sweet spot" where it helps maximally but doesn't push the kid into activation. Know also that other supplements and/or meds can further enhance or detract from SSRIs, so you want to be careful about such things as inositol, St. John's Wart, etc. and generally stay away from those more "natural" serontonin remedies if you're moving on to a prescription med for addressing the same issue. Our doctor also told us that because n-acetylceisteine (NAC) impacts the precursors to serontonin, a child taking NAC will generally need a lower dose of SSRI, as well. So there are lots of possible things to take into account and get good guidance on when taking this particular step. And remember that every SSRI is dosed differently, so what qualifies as a "low dose" for Zoloft wouldn't necessarily be considered "low" for another one, such as Lexapro, Prozac, etc. Good luck!

Hi lfran -- As you probably know from having read here, lots of kids have lots of different reactions to SSRIs, so the decision to try one is not easy. But if your DS's quality of life is being severely impacted, and the other interventions are not getting him where he needs to be in terms of enjoying his life, then, IMHO, a low-dose SSRI is worth a try. If only as a temporary aid in the journey toward a full medical recovery. My DS takes Zoloft, which has been well-studied and is generally highly regarded as a help for kids in terms of OCD; so far as I know, however, it doesn't impact tics. USF (Dr. Storch and Dr. M.) use Zoloft sometimes with kids in their practice. Here's the thing, though. Unless the doctor you're seeing is VERY PANDAS/PANs savvy, chances are that even what they consider a "low dose" may not be in terms of your kid's system/wiring. We learned this the hard way, even with a psych who knows and accepts PANDAS. They just find it hard to believe that our kids can get activated even by what they consider to be an exceptionally low dose. The other issue is that, when starting with a low dose, sometimes parents (again, speaking from personal experience) and even the doctor can get impatient for results and, not seeing any within a week or so, be tempted to titer up an SSRI dose too quickly. And that can have some significant consequences in our kids, too. So, if you feel trying an SSRI is the right choice for your DS, then I would start very low and slow; SSRI's generally are not dosed according to age or weight, so that's not much of a guideline. Personally, though, I would immediately halve any dose and non-PANDAS or quasi-PANDAS savvy doctor were to prescribe, and leave that half dose in place for a minimum of 4 weeks before taking any steps toward increasing it. It can take up to 6 weeks for some SSRIs to reach their full potency, so if you're seeing good results at the low dose, or even no results at all, again, I would leave it where it is for a minimum of 4 weeks up to 6 weeks before trying to titer up. And if you do titer up, I would leave that new dosage in place, again, for a minimum of 4 to 6 weeks before moving it again. Unless, of course, you see your DS become "more" of the things you're trying to help quell with the SSRI: more anxious, more OCD, etc. Then, chances are, the SSRI is activating him, so if the activation occurred after you titered up the dose, you can drop it back down to where it was before and the activation should ease off within 24-48 hours. Or, if he becomes activated even after just the first, very low dose, again, you could stop giving it to him, and the increase in behaviors should ease off within a day or so. Like most everything else with PANDAS/PANs, this type of treatment isn't an overnight answer, and it can take some trial and error to get it right. And it takes a ton of patience since the goal of the SSRI is to help slow down the serotonin uptake in the brain, leaving more available for more sustained periods, and that takes time. Hence the slow "full potency" window of 4 to 6 weeks. Good luck with your new doctor, and with the CBT. I hope that's going to be ERP (exposure response prevention), since that's pretty much the best proven therapy for OCD.

My DS was on 2,000 mg. of Augmentin XR daily as his "full dose." When we started weaning, we started off keeping a 1,000 mg. dose of the XR in the morning, and then substituting an 875 mg. regular Augmentin for the night time dose; we left this in place for two weeks. Then we further reduced the night time dose to only 500 mg., and again left that in place for two weeks. Then we just went with a morning dose of the XR (1,000 mg.) for another two weeks, substituting olive leaf for the night time abx dose. Then we started reducing the morning dose, again in approximately two week increments: from 1,000 mg. XR to 875 mg. regular augmentin. Then down to 875 mg. every other day. Then 500 mg. every other day, then 500 mg. every third day. After about 3 months, we were entirely done with abx and transitioned to olive leaf, twice daily. Which we still do. He had some bumps along the way, but overall, it finally seems to have worked. We're at almost 11 months now off abx (knock on wood)!

For the first 1.5 years, whenever we tried to reduce or remove DS's Augmentin, his behaviors (mostly OCD in our case) would return and/or grow more prevalent. It generally didn't matter what time of year it was, and we never tried reduction/removal except at points in which DS appeared healthy, highly functional with respect to school and social situations, etc. All I can figure is that he still needed the Augmentin . . . that something related to either his immune response or inflammation or brain chemistry relied on the Augmentin for support. Beth Maloney has mentioned a similar reaction on Sammy's part initially, and, in the end, Sammy remained on Augmentin for about 2 years, as well. Finally, after almost 2 years, we successfully (knock on wood) weaned our DS off the Augmentin. But we went very, VERY slowly on the weaning, reducing very gradually and holding at each level for an extended period. Even then, we saw a couple of behavioral bumps but nothing he couldn't handle and eventually pull through. It is a puzzle, and one I hope that the researchers will be able to dive into and figure out one of these days . . . .

I haven't been successful in finding a local doc who believes in a "carrier state" for strep in its technical sense (whatever that means). That being said, my DS has always been classically asymptomatic for strep himself, but he definitely brought it home from school at least a dozen times and passed it on to DH and me! DS never tested positive for strep via rapid swab or overnight culture. He never had a sore throat or a fever. But within 10 days of a letter coming home from school announcing that another kid in his class had been identified as having strep, either DH or I would come down with a classic, painful case while DS appeared to "sail through" unscathed. Until a couple of weeks later, at which point his OCD and general anxiety would skyrocket. It wasn't until we started testing and tracking the direction of titers (ASO and antidnase that we were able to convince a ped that DS actually "had" strep . . . he just wasn't responding to it the way most kids do. She still didn't buy him as a "carrier," though, even though DH and I could pretty much prove that he had to have been the source of our strep episodes. I'm not sure what you would do in cases in which neither swabs, cultures or titer blood tests provide evidence of strep . . . I've seen some other folks talk about sinus cultures?! I do think that, in my DS's case, the sinuses were probably where the actual bacteria was hanging out, given his upper respiratory history.

I ALWAYS suspect PANDAS! I'm only sort of joking. You might consider me the Oliver Stone (conspiracy theorist) of auto-immune origination of psychiatric/neurological behavior. After our experience, I will ALWAYS consider and check for a medical basis for any unusual or increased behaviors in myself or my loved ones, and I will ALWAYS, when solicited (and sometimes even when not), advise someone facing similar circumstances to investigate and systematically rule out all potential medical bases for what they're seeing/experiencing before they accept a purely psychiatric treatment protocol. If necessary, seek out second and/or even third opinions. Trust no one implicitly. All that melodrama and kidding aside, given your timeline (good journaling, incidently!), yes, I would suspect PANDAS/PANS in your DD. But now that you know my predisposition, you might want to take that with a grain of salt . . . .

Many of us have found that, unfortunately, even if strep remains the "big monster" and initiated our PANDAS/PANS journey, our kids subsequently become reactive to other triggers and can therefore flare at other immunological "events" such as exposure to strep despite not actively "catching it," myco p. ("walking pneumonia"), allergies, and/or cold and flu viruses. Any evidence of any of those potential culprits?

Fixit -- We used guafinesin regularly when DS was very young (2-3) for thinning out mucus to help his ears drain and put a dint in the constant ear infections. It did help, but one issue with it is that it tastes pretty nasty . . . very bitter. And thus the taste is difficult to disguise in juice, etc. Frankly wasn't aware that it might help the gut as it did his head and upper respiratory, but maybe that was an added perk. Learning more and more about how a med "targeted" for one area of the body may actually be beneficial beyond . . . I will add, though, that NAC has mucous-thinning properties, as well, and in capsule form, it comes tasteless to boot. So this is our current strategy and it does seem to have multiple positive impacts for our DS, though I realize some kids do less well with it for whatever reason. Hadn't given any thought as to whether or not the NAC might actually be working within DS's gut in addition to his respiratory tract and brain, though it makes sense that it would since it's well-recognized as a detox for acetamenophen overdose, etc. I need to read up on that some more . . . . Thanks for the kick-start!

When I changed jobs about a year ago, I came to a company that offered me a number of options: an HMO or a PPO with three levels of coverage, two of which were "high deductible" plans for which, once you met the deductible, all your costs are essentially fully covered, and there are no copays for preventative care visits even before the deductible is met. I created a spreadsheet to compare the costs; to my surprise, the plan identified as a "high deductible buy-up" turned out to be the most financially advantageous as, with prescription costs alone, we would meet the deductible within the first six months of the year, and then everything after that became "freebie." Now, of course, that presupposes that the insurance coverage network is pretty wide and includes your key providers, which ours thankfully does. Good luck!

What is Claritin supposed to do for the gut? My understanding is that its active ingredient (loratadine) is an H1 (Histamine 1 receptor) agonist. Meanwhile, most of the histamine agonists I've heard of with respect to assisting the gut are H2 (Histamine 2 receptor) agonists, such as Pepcid and Tagamet. We use Pepcid and have seen good results, not just with respect to the gut but also other inflammatory/autoimmune issues (eczema) and even behavior.

I would run, not walk, to your nearest PANDAS/PANS specialist for IVIG or PEX, though most of the IVIG protocols I've read about involve a period of abx following IVIG to help protect the child while the immune system rebuilds. Not sure about PEX, though. I think one of those is your best option at this point. I know that Swedo prefers PEX but understands that it is both more costly and perhaps harder to persuade less PANDAS-savvy practitioners to utilize. Dr. L. is well known for utilizing that protocol, however, so perhaps you should reach out and see if you could schedule an appointment with her. So sorry you're going through this.

My DS15 takes three capsules each day . . . two in the morning and one in the evening. That seems to work well for him. Since it has Vitamin C in it, you might want to titer up a little slowly, though, since large doses of C can induce some diarrhea in some people.

No kidding. And as if finding a new "label" to stick on kids is in any way helpful with respect to treating them, medically or mentally. Is it easier to get "new" "mental" disorders into the DSM because everyone readily accepts that these are necessarily "clinical diagnoses," whereas, with medical conditions, they're less ready to accept the "clinical" diagnosis over a strictly, test-driven "diagnostic" one?

We like quercitin in our house, also. I'm not certain in terms of its anti-inflammatory properties, but DS15 takes it twice daily for its anti-histamine effects, and I take it every morning, as well. It really seems to help with our mold and pollen allergies, especially. We take a supplement called QBC made by SolaRay; it's a combination of quercitin, bromelaine and Vitamin C. Affordable at The Vitamin Shoppe.

I don't have any references for directly connecting PANDAS/PANS with vaccine injury, and given how committed even NIMH appears to be to vaccinating our kids against the general childhood diseases, I doubt there's much out there. What Dr. Kenneth Bock has said in his speeches at Autism One and in some of his writing, however, is that an immature immune system can only process so much, and that, like a glass that finally reaches a point at which it spills over, our immune systems are much the same. Not unlike experiences with sudden onset of autism following vaccinations, you'll find stories here of kids who's PANDAS appeared or resurged following a flu mist or flu vaccine, and perhaps there are examples of onset following other vaccines, as well. So, is PANDAS literally vaccine injury? I think that depends on your perspective. In some instances, a vaccine may have been the straw that broke the camel's back, but as with many things, it seems likely that it is a combination of "injuries" to the immune system.

Hi -- I don't know if puberty will put an "end" to PANDAS/PANS, and frankly, because of all the interventions, it's hard to tease out the impact of each thing . . . the meds, the physical maturation, a slowing of the hormonal onslaught, or a combination of all three. My DS , as someone else described, came out of his "exorcist" phase after about 3 months of abx, and then keeping him on abx for nearly 2 years contributed to slow, but steady improvements over that time period. There would also be some steps back . . . "sawtooth," many call it. But overall, the trajectory was positive. I, too, have felt that the onset of puberty complicated things for him, and may have even potentially been the "straw that broke the camels back" in terms of his PANDAS going off the deep end at 12. Now, at 15, he still hasn't had the big growth spurt emblematic of puberty's peak, and believe it or not, his voice hasn't dropped fully yet, either. So I'm certain we haven't come out the other side of puberty yet, but he's much, much, MUCH better in terms of PANDAS and the behaviors that accompanied it. I don't know what your treatment course has been, or the duration of it, but I would encourage you to continue to treat your DS medically, in addition to getting some therapy to help him deal with the feelings all of this invokes in him. Hang in there and keep pressing forward with treatment.

Yes, school phobia is fairly common among our kids when they're not well. Trouble is, the anxiety about school can/will build upon itself and generally get worse, not better, if you don't tackle it. It is anxiety/OCD based, and you'll need some help to get your DS back to school. If he's getting home-based instruction, I take it you have either a 504 Plan or an IEP? Then you need to ask for a meeting to discuss and make a plan for getting him back into school. But mostly, and probably firstly, your DS needs some good therapy; not going isn't an option. If it comes down to it, you can probably find an ERP therapist who will make a housecall, if necessary; many of them do because they're accustomed to dealing with anxieties that can be home-based. The therapist can help your DS face and deal with his school anxieties, and he/she can help you in working with the school to formulate a plan for returning to school. Sorry . . . I don't mean to sound harsh. It's just that when it comes to anxieties like these, we parents really have to work against some of our base instincts, to set our protectiveness and empathy aside a bit. OCD/anxiety tends to grow and creep into more and more corners of a person's life the more you accommodate it, so allowing your son to avoid the tutor or school entirely is supporting his anxiety more than it is supporting him. Sure, it may seem easier and kinder now to pull him out of school, but what happens next? Now he's afraid to meet with the tutor. And what's next? Unabated, that anxiety/fear may continue to grow until he's avoiding anything that triggers an "I don't know" feeling. Fighting OCD/anxiety is sometimes about "being cruel to be kind," and it requires exposing a person to the situations/things that trigger the anxiety, helping them habituate to it, and ultimately learn to cope with it and lessen the anxiety overall. It works, but it's not easy. And many of our kids fight us much of the way along the road. When PANDAS took my DS over, also at age 12, we, too, pulled him out of school for a bit and put him on home instruction. But he'd been diagnosed with "regular OCD" a full 6 years previous, so we'd already been schooled in OCD and ERP (exposure-response-prevention), and though we accommodated him more than ever before because he was so sick and so dysfunctional, we never let him step entirely away from the game. Every day, he had to face a little school work, and every day that the tutor came, he had to show up, and show up with a good attitude. When he began to improve (after about 4 weeks of abx), we met with the school and made a plan to get him back into the building. We arranged to bring him to school and he was allowed in the building 15 minutes before the first bell so that he would have the opportunity to go to his locker, get situated for the day, before the halls were crazy, loud and packed. He started going to just one class each day for about 2 weeks, and then we added a second class. After another 2-3 weeks, once he'd demonstrated that he could handle those two classes, we added another, and then another and then another. We put an IEP in place, so he had a caseworker on site who was there to help him manage his day and address the triggers that may arise. And we had a good ERP therapist outside the school that he saw sometimes 3 times each week, if necessary. It was a long process, and took us about 3 months to get him back into school for a full day. But once he was back in, he was able to stay in. Sorry to go on so long . . . it's a long, winding road, this whole PANDAS/PANS thing . . . .

The only thing I can figure is that they (the media) can't get an angle on it because BCH will refuse to talk about it based on HIPPA, and they've put a gag order on the other key players (the parents and the attorney). Perhaps if the grandfather offered himself up to the media directly, then there'd be some traction?!?!

Hi Chris -- Sorry you're going through this as it sounds as though you have some health issues of your own with which to contend, as well. The really sinister thing about OCD is that it will "morph" and move into another cranny of your girlfriend's thinking, no matter how many times or how completely you may try to rationally set aside her concerns about you and any STDs. Because OCD is not rational; it's entirely irrational. You could go ahead and have the battery of tests all over again, have everything demonstrate (once again) that you are 100% fine in this regard, and her OCD could continue to either 1) drive her to fear that you've somehow lied or falsified the test results or 2) move on to a completely different, unrelated irrational fear with regard to you. OCD is insidious in that way. Your girlfriend needs therapy, more specifically, she needs Exposure Response Prevention (ERP) therapy. But as adults, you can't "make" her go to therapy or "make" her buy into the treatment the therapist tries to give her. You could do some research with respect to ERP and do your best to support her therapy . . . like you said, continuing to refuse to "enable" her OCD. Doing things like getting retested or trying to rationalize away her OCD concerns will only feed those anxieties, so you're right to try and rise above that fray and not buy in. I feel for you because it's hard for us on the "outside" of this crazy condition. My teenage son has OCD, and it can be very hard to deal with him at times. You just keep thinking that he's so intelligent and so self-aware, surely he can see that this OCD response or that one are irrational? And surely he can stop reacting in that way? But it's just not that simple. They have trouble "turning the OCD off," or even turning the OCD's volume down low enough at times that they can even hear the rational part of their brain. Now that my DS is getting older, we tend to respond with "tough love." "That's OCD, and you know it, and we don't run our lives around here according to your OCD. Move on. Let it go." Sometimes, we tell him flat out what a "normal," non-OCD response to some situation would be because, frankly, he's contended with the OCD so long I'm not sure he always knows what that is! And then we tell him that's the way you need to respond, because that's the non-OCD way. And he'll usually push back, trying to rationalize why his OCD-ridden response is still credible, still rational. But we hold a firm line because he needs support in pushing back and responding "normally." And usually, that gets through and helps. It's a process. I hope some of that helped or at least lets you know you're not alone. Hang in there!

We get our LypSyl at a local drugstore chain: Walgreen's. It appears you can get it also, though at DrugStore.com, Soap.com and a number of on-line shops; unfortunately, I've never seen it at CVS or elsewhere. LypSyl Lip Protectant

The theory behind zithromax only a couple of times a week or some other not-every-day schedule is that it has a long half-life, so, in theory, it is active in your child's system longer; if I recall correctly, its half-life is in the range of 68 hours, and it can apparently remain in the tissues for a couple of weeks, even. So if your child has responded well to treatment dose zith, this sort of prophylactic schedule is probably reasonable. Just be aware that most abx don't have that long a half-life, so a dose of some other med, like Augmentin, for instance, every three days or so is not likely to keep your kiddo adequately protected.

Who might have vasculitis? Your PANDAS DD? Vasculitis is auto-immune, also, so I'm not certain that wouldn't further support, rather than work against, your PANDAS diagnosis. Also wondering what he's basing that opinion on? Is he suggesting that some form of vasculitis might cause the same symptoms and/or behaviors that have up til now been attributed to PANDAS?

Mar -- Many of the things you describe are familiar to us and our DS's journey. Yes, I do think this is PANDAS-related, either because the stress/anxiety is tied to an auto-immune/inflammatory reaction to exposure and/or microbe, or because, having had PANDAS and learned some "coping mechanisms" during illness, your DS reverts back/resorts to some of those learned mechanisms in times of even more typical stress induced by school, expectations, etc. My DS does many of the same things at times . . . engages in avoidance and distraction in the face of school work that intimidates him or "scares" him. When he begins to get a little behind in his schoolwork, especially, his anxiety ramps up and then it can take on a life of its own, feeding itself because he tries to avoid some of the work because it causes him anxiety, but then because he's avoided it, it starts to stack up, creating even more anxiety because now there's just MORE of it to either tackle or avoid, and I bet you can guess which one of those two he tends toward, left to his own devices. We, too, are trying to leave DS more to handle things on his own, especially given as he has both an IEP and a case manager at school that he can turn to in the event he needs help navigating a particular assignment or teacher. At times he seems to do well, and at other times he gets overwhelmed and then we have these long, drawn-out discussions about how he needs to just "move on" and tackle something, even if that "something" is only a drop in the bucket in his eyes. And, frankly, because of the OCD side of his behavioral tendencies (scrupulosity and perfectionism), he's not always the best judge of how well he is or isn't doing, and how much is or isn't on his plate. He tends to overstate. When you talk about his lips are killing him, you mean dry and cracked? My DS has had a similar issue in the past, as well; always thought it was part and parcel of his eczema and general dry skin issues. As a baby and toddler, we would literally rub him down with Aquaphor or Eucerin every night after his bath. As an older kid, we've experimented with a lot of things because, especially in winter, his skin can get very dry and even inflamed with eczema, especially if he's in a flare and he's washing his hands more than usual, etc. The eczema has largely retreated with Pepcid and some good emollients like cocoa butter. When it comes to lips, though, DS is very particular about how the lip ointment feels and tastes. We've tried a ton of them, always with the requirement that it goes on 1) before he goes to bed and 2) before he walks out the door on cold mornings. Our best luck in terms of product and DS's willingness to use it has been LypSyl Intense Protection LypMoisturizer. It's made with Swedish beeswax, coconut oil, Vitamins A & E and organic shea butter and comes in a plastic tube with a push-up lever that allows him to slide it up and the product out and onto his lips without him having to dip a finger into the stuff or whatever. Hang in there, and use what you have at your disposal to help your DS contend with whatever exposure and/or inflammation he's encountered, as well as the behaviors he's exhibiting. He'll get through this and so willyou.

There have been a couple of other kids here who had some issues when taking sach b., particularly. Don't know why. Wonder if that's maybe your DD's issue, too, since culturelle doesn't contain sach b. It's a different strain: lactobillus g.