MomWithOCDSon

My DH is a pretty quiet, introverted guy, so he doesn't tend to tell too much to too many, in any situation. I, on the other hand, am a talker, and I learn most of what I know from the give and take with other people, including friends, family and people I've never met on forums like this! Once we had DS's PANDAS relatively under control and I'd received my "Got Strep?" electronic flier, I actually emailed a handful of friends . . . not especially close friends in most cases (those folks already knew that we'd been through some six of the worst months of our lives!), but some folks who work with and/or have kids of their own and I thought they should at least get a "tickler" about what PANDAS is. I told them a very brief version of the events in DS's life over the previous months and a bit about the diagnosis, treatment, and the success we were experiencing. I was amazed when at least 50% of these folks dropped me a line back with their OWN PANDAS-related stories . . . a child in their daycare, a niece or nephew, the child of a friend, etc. It made me wish I'd reached out to them sooner, and it cemented an idea for me that talking about this is potentially the BEST way to obliterate the ignorance AND to find help and support even earlier than I might have first thought! That being said, I do think there's a balance to be met, frankly. I think some of us are very ready to tell the whole story to just about anyone who'll listen, partially because we're relieved that we think we've FINALLY found a key to helping our kids recover, and partially because, as you said, if you can explain the child's behavior by virtue of the diagnosis, then you feel a weight can be lifted from the suspicion or maybe even hostility toward your child's behavior or your own. Sometimes, when the kid loses it in the line at the grocery store, you just want to hand out pre-prepared cards to all the folks behind you, right? Something that says, "My kid has an auto-immune syndrome that's causing inflammation in the brain and sometimes inhibits his ability to make age-appropriate choices. Please regard us with some level of tolerance." Meanwhile, others want to closely guard the medical and psychiatric privacy of their kids (with good reason), and being as PANDAS and PITANDS is already widely misunderstood, assuming it's even been heard of before, opening ourselves or our children to that potential ignorance can be a little scary. I mean, we need to fight the good fight on behalf of our kids with their teachers and caretakers, but do we really have the time or energy to take on that battle with Great Aunt Jenny who still thinks cod liver oil is a cure-all or the neighbor who just wants your kids to stay off her lawn and out of her flower beds? So, hopefully, you and your DH can come to some agreement that there's not really any black and white in the issue, and you'll decide who you bring into The Club on a case-by-case basis? Maybe he makes the call with his side of the family, and you make it with yours? When it comes to friends and acquaintances, again, I guess I would just accept a "divide and conquer" method, with each of you proceeding as you feel comfortable. Whatever you do, though, don't let it cause a rift between you and DH; you guys need each other right now!

I agree with Dad; our lab's top end of the "normal" range is 170, so at 600, this boy is well into the "high" level, one would think.

Amen to that!

As Deb and Vickie have said, yes, there's LOTS of hope! There's frustration, confusion and aggravation aplenty, as well, but the hope prevails! My DS is 13 and, we think, has been suffering from PANDAS for probably 10 years; unfortunately, we didn't know what it was or what to do about it until very recently, so you are very wise and fortunate to have caught it so early! You go, girl! Yes, he will play sports again. Yes, he can go to a regular school. Yes, he can and will do all the things he did before . . . it will just take some time to get back there. A "Reader's Digest" version of our story. DS had constant ear infections from about 14 months until we had tubes inserted in his ear drums at 3; we think this was the beginning of strep in his life, though he's always been asymptomatic except for the pain/pressure in his ears during that period. He had a number of atypical behaviors for a 2, 3 and 4 year-old, and at 6 was diagnosed with OCD. It was mostly mild and controllable, with a significant and debilitating bump at 7 (he forgot how to read, cried all the time, etc.) and then the latest and greatest exacerbation last spring, at 12. He completely fell apart; his OCD went off the charts, he was a babbling ball of anxiety, had panic attacks, could not sleep, we had to withdraw him from school and home school him for a period, etc. That's what ultimately brought us to PANDAS. He's always been in the public school system and generally done very well. In 3rd grade, the school actually suggested a 504 Plan for him so that he could take the state standardized testing untimed (helps him, helps them in terms of likely better score outcome). After this last exacerbation, we knew he was going to need more accommodations in the school setting, primarily for handling his anxiety and OCD issues. The school actually suggested moving the plan up to an Individualized Education Program (IEP) which not only gets him accommodations in terms of untimed testing, extra time for tests and assignments, reduced homework volume, more time between classes without being marked tardy, alternative assignments when a given assignment overstresses him, etc., it also gives him a case worker on site who helps him navigate the school day when we can't be there, and a weekly visit with the school social worker to talk through any issues he wants to discuss. He's intellectually gifted and participates in the school gifted program, too, so the IEP helps him when the homework load overall just gets to be too much for him. We started abx in October, and he started going back to school in November. We put him back in, one class at a time, until he'd built up to a whole day. He's doing really well now, even though there continue to be bumps along the way. The key is to not get too discouraged by the bumps and keep moving forward because the successes and good days do build on one another. A year ago this time, I never would've believed we'd be in the positive place we now find ourselves, and if it can happen for us, it can happen for anyone! You'll be okay . . . keep the faith!

But isn't OCD thought to be related to too much or unregulated dopamine in the brain? "Hyperfunction" of dopamine is the term I keep seeing in the literature. So how could a person like my DS display both OCD and narcoleptic-like behaviors?!?! Color me confused!

Story of my/our life/lives! PANDAS has its camps, too, as I'm sure you've noticed! As do all the other issues and labels my son has been granted over the last several years: ADHD, Aspberger, etc. I used to like camping . . . . . now, not so much! Thanks for the information. My dad suffers from a degenerative spine disorder and has been wheelchair bound and in fairly constant pain for the last several years; he's had epidurals, morphine, acupuncture, biofeedback, you name it, and the relief was fleeting if it ever came at all. But a couple of months ago he was introduced to something at least akin to the work it appears your work might be associated with (he's been calling it "Healing Touch"), and he's actually getting some lasting relief from it! Way cool! So, I've found a CST and Brain Cirriculum practioner in my area, and she'll be getting a phone call tomorrow. I'm excited and hopeful, and I'll let you know what results. My DS has very minor tics (throat clearing, mostly), and those really only appear during distress. But I have read in many threads here that the tic behaviors do generally subside in sleep. Have you heard/read/seen videos of Lauren Johnson, one of the more recent "poster child" for PANDAS? Her story has been on the "Today Show," etc. She famously developed a sneezing tic, virtually overnight, following a bout with strep. Apparently, the only time she got relief prior to treatment was during sleep!

I posted a topic a few days ago regarding a link between narcolepsy and strep, and had read that a Stanford University study had found a link, though I couldn't find a copy of the actual study at that point. Meanwhile, DS13 fell asleep in class again today, despite a full 10-hour night's uninterrupted sleep and, when questioned, seems to literally fit the narcoleptic classification of "Excessive Daytime Sleepiness." Here's a link to a copy of the Stanford study. In addition to the potential narcoleptic/strep link, I'm wondering if there's anything here that might inform the PANDAS research, but I don't have enough science at my disposal to discern that, really. There is discussion here, however, about blood brain barrier permeability. Is there anything new to be learned from this information? Does hypocretin, for example, figure into PANDAS at all? Stanford University Strep and Narcolepsy Study Thanks in advance!

Oh boy, been there, done that! I would say that, to the extent that you are helping move her along in a way that is best for YOU and, as you said, NOT "doing it the OCD way," you're not enabling the OCD itself; you're just cutting down on the frustration and drag on getting your daughter through a set of tasks and out the door. It's when they start demanding that you brush the retainer a certain way, or brush it again because the first time wasn't good enough, or that when you take the clothes out of the drawer they have to be put on the bed, rather than on the chair, etc. that the OCD can get "fed" and encouraged. As for the speed at which she can move forward with tasks and needing constant encouragement and reminders . . . these should improve as the meds start to take hold; they certainly did with our DS. But, in the meantime, you might try using a timer; the two of you can sit down and decide how long she needs to brush her teeth, get her pj's on, etc. and she can set the timer for each task (you may have to negotiate with her some and perhaps agree to some longer timing initially, with a vow to start trimming it down as she improves). When the timer rings, it's an automatic reminder for her to move on to the next task and set it again, and on and on. It creates what we call in our house "a perpetual motion machine" out of a kid who would otherwise stall out and forget what comes next or how much time has gone by without him accomplishing anything. Also, if the timer ring is loud enough, it'll free you up to do other things besides hover next to her, but it'll remind you, too, to check up on her and see how things are going when you hear the ring.

My DS13 started out with a 504 Plan for Other Health Impairment Issues relative to his OCD when he was in third grade. Interestingly enough, it was the SCHOOL that wanted the plan, basically so that he could be allowed to take the state's standardized testing in an untimed setting . . . all the better for the school's scores in the end! This year, with the exacerbation that hit at the end of the last school year, the school psychologist actually encouraged us to move it up from a 504 to an IEP so that DS could have "services on-site," like a case-worker and a weekly social worker session, even though they knew we'd gone to significant expense and trouble to acquire private help for him outside the school setting. So I am always amazed when I hear stories about families who are denied opportunities for 504's or IEP's because their kid doesn't "fit" any of the check-boxes! And I don't think it was just that we have a "stellar district," either, as I know another family in our same system who has been fighting for a couple of years now to get some accommodations for their son who is impaired in some ways but, at the same time, obviously intellectually gifted. It sort of gives me a reality check about my own DS . . . about how badly his symptoms must've been affecting him in the school environment that they would so readily suggest these steps . . . rather than making us fight for them! Living with him every day, I think we get accustomed to some of the "eccentricities," rather than always acknowledging them as challenges, especially in a school setting. That's not to say I haven't met my match with some individual teachers or administrators, too, though! LLM, I might borrow your voodoo doll technique! There's always that one teacher/administrator who thinks you're just making excuses for your kid, expecting him to be excused from obligations that he should be held to, etc. Especially when the kid is intellectually strong, which it appears many of our kids are! In the end, I think what's helped us a good bit in our system is the continuity; we've been in this district from the beginning, so some of the staff and administration have seen DS during completely unimpeded periods, and then they've seen him at his worst, as well. So, even to the most cynical, it was hard to deny that he hadn't experienced a real "mountain to climb" in terms of his disorder and the steps needed to help him get through it.

You'll get no scoffing here! Just intense interest! I'm going to do some web research but would be most grateful if you could point me to an association or other professional group of CranialSacral therapeutic practitioners so I might find one in our area. Please let us know how the Laurecidan works for you, as well as the cranialsacral. Thanks!

Is it just eerie coincidence that so many of our kids became "struck" about one year ago this time?!?! Our DS13 too! Was there some "hidden pandemic" that hit all of them?!?! Hang on, Fixit! There's an answer out there for everybody, I truly believe, but some are tougher to find than others. Keep reaching out, describing what you're going through, and SOMEBODY here is going to have had a similar experience and a workable suggestion, I just know it! ***BIG HUG!!****

Indeed! I don't recall hearing about any H1N1 vaccine lots being recalled! I'm going to bookmark that site for future perusal as it would appear the media is either not keyed in or being disuaded from reporting these recalls (unlike the auto industry recalls)!

Brava, brava!!!! So wonderfully said! My thanks and kinship go out to you!

Yes, DS has been in and out of CBT and ERP since he was first (mis)diagnosed with OCD at the age of 6; since he "hit the wall" with this exacerbation last May, he's been in more intensive ERP both with a therapist and at home, and we do see some gains there. I believe the abx is what has given him the leverage to use what he's learned in therapy as, before abx, he was way to strung out with anxiety to effectively implement anything! I'm just trying to figure out if we're going to be able to get back to the "old" baseline (pre-May 2009), or if we dare hope for something even better than that, or if, because of age, duration of illness, etc. he's going to have to contend with some clinical level of OCD (it's currently "mild" on the Y-BOCS scale, but still evident) for the remainder of his life. Sammy's story led me to believe that, for some, even at a more advanced age, "sub-clinical" was possible. And maybe it still is. You're right, of course; some people may actually outgrow the distress, at least, if not all the particular behaviors. There are so many moving parts here, I guess I'm just trying to figure out where the "finish line" may be, and then we'll figure out a way to deal with wherever that is, you know? I would love DS to come back around to where he was at, say, the age of 10, where very little bothered him and even with an OCD diagnosis, he lived his life more or less like any other 10-year-old. But if that's not achievable, I guess I'd like to be able to prepare both him and me for that reality. Hope is eternal, but I'm sort of a realist at heart, I suppose.

I would think that Dr. K.'s office would have some recommendations, maybe even some special rates at local hotels or something. Which facility are you having the procedure done at? I know he has a couple of offices in the Chicago suburbs, but not sure where the IVIG is performed. If Dr. K.'s office doesn't have anything specifically to recommend, I can help you if you'll let me know exactly where you need to be. Even the suburbs can seem expansive when you're ferrying around a sick kid. Are you flying into O'Hare or driving in?

So, Sammy still has OCD? But he manages it without any medications? Would it qualify as "sub-clinical," do you know, or would it register on the Y-BOCS scale? Do you know if he does CBT or ERP? Who is "Jamie" and where can I tap into his/her full story? I am very interested in this particular topic because of DS13's history and current state. It was "Saving Sammy" that sent us down this PANDAS path, and while DS is much, MUCH better thanks to abx, I have wondered if it would be possible to eradicate 100% of his OCD. The book had led me to believe that Sammy was 100% recovered, so I find this interesting info. Thanks!

We see this, too, in our DS13. Mostly now, it is about maintaining at a high level at school, but then coming home in the afternoon and falling apart. I've always assumed it is two-fold: 1) the home environment is one that our kids have historically had at least SOME, if not substantial, control over to their own benefit, so they expect to be able to maintain that, even in the face of OCD and tics that interrupt, whereas, in the outside world, they accept they have considerably less control there, so they go into "survival mode" and keep it more bottled up in order to get through the day/weekend/whatever. But at the same time, chances are the other people in their lives . . . even grandparents . . . are somewhat less adept at recognizing the signs of stress and anxiety, even OCD behaviors or minor tics . . . than those of us who live with them 24-7, so it is likely that, outside your company, there is a perception of a lower level of behaviors than may actually exist. And, 2) Home is the safe place, and family are the people who will never stop loving and caring for you, no matter what. So that's where our kids can really "let their hair down" and be themselves, for good or bad. I also think that we, sometimes unwittingly, aid and abet our kids some, especially when it comes to OCD. When your kid is SO bound up in OCD behaviors, you find yourself "picking your battles" just to get through the day, and then you can inadvertently support one behavior or ritual because it is LESS intrusive than another. So our kids can come to expect that leniency, "acceptance" or even support from us, whereas they don't expect it from others and are therefore less apt to display those behaviors outside our company.

Hi, and welcome. Yes, PANDAS and PITANDS serves up a very diverse array of people, symptoms and treatments, so it can be a lot to digest and confusing, too. Other than the two tics, have you seen any other behaviors/symptoms in your son? How old is he? Can you peg any exposure to strep or another illness preceding the first appearance of the tics? You could begin with a throat culture (the rapid response won't do any harm, but don't forego the full culture, whatever the results of the rapid test reveal (or fail to reveal). The reality may be, however, that both tests could come back negative but your son may still have an underlying infectious trigger and/or an autoimmune issue. My son was one of those who was entirely asymptomatic for strep, so we didn't know he was reacting to an infection until we had blood tests taken for the ASO titers and AntiDnase. As you've probably seen here on the boards, though, even those tests are not considered fully diagnostic because other agents (like Myco P) are thought to be part of the picture for some kids, too. There is a broad array of immune testing that can be done, but starting with the basic strep test would seem to be clearest place to start. We've not tried Lauracedin or colloidal silver; we went with the old-fashioned antibiotics, and they have helped us trememdously; however, my DS's PANDAS behaviors are almost entirely OCD in nature, rather than tics. We do use a full array of natural supplements in addition to the abx in an effort to control inflammation and boost immunity overall (tumeric, quercitin, D3, B-complex, magnesium, NAC, inositol, probiotics, etc.). I have a remaining question for you regarding this statement you made: I am really curious about what you mean by this treatment. You said Mom is a PT, which is Physical Therapist, right? What is the discipline/technique that provides for this BG/immune system "connection" and is it a common technique/methodology among practitioners? Is it a manipulation? Is CranioSacral therapy anything like NUCCA? Perhaps there is yet another therapy some of our families should explore! Thanks!

I guess what I'm thinking is not that any of our kids have true, clinical narcolepsy, but that this is yet another telling link about infection and neurological dysfunction. And there may be an interrelatedness here that could further inform folks on both sides of the equation as well as no side at all: those with PANDAS, those with stress/anxiety disorders, those with narcolepsy. Plus, honestly, I was just floored by what was new information to me (the link between bacterial infection and narcolepsy), and the fact that a narcoleptic actual feels an "irresistable urge" to sleep, rather than just immediately slumping into a sonambulent heap like the dogs in the videos they used to show us in high school psychology class. The sense of confusion and "mental cloudiness" that comes with the urge to nod off. There seem to be so many parallels with some of the PANDAS symptoms and behaviors we've experienced. Some of what I've read -- blogs by narcoleptics, for instance -- just ring so many bells with me in terms of how my DS13 expresses himself sometimes: the sense of stress and anxiety that makes him feel so tired he just needs to put his head down on his desk for a minute, the way in which he is frequently misunderstood by others without the disorder (whether it be PANDAS or narcolepsy), etc.

That's what I thought, too; that DS was "shutting down" in class because he was being confronted with something he couldn't or strongly didn't want to do. Plus, I thought narcolepsy was an entirely"fast-switch" thing, that your whole body would go limp involuntarily along with the suddent sleep, etc. And I thought it was strictly a rare, genetic disorder. But now, looking it up and doing some reading on it for the first time, it seems to have a real link to some of the other behaviors our kids can experience. Not only is there a strep link, but an H. pylori link, as well, according to a Stanford University study, and sufferers refer to an actual "urge to sleep," rather than a 100% automatic and sudden shut-down. I guess the cataplexy (the loss of muscle control) can also be a part of the disorder, but is not always present. undefined

My DS13 will occassionally come home from school and report that he fell asleep in class; it is usually the last class of the day and seems to be largely a stress reaction. Usually, his "naps" coincide with being given an in-class assignment that appears tedious and confusing to him. He reports having a sudden difficulty in holding his head up, and once he lays it on his desk, he literally falls asleep until someone (usually his teacher) awakes him. I had recorded a program on the Discovery network called "Is It Possible?" thinking that my scientifically-minded DS would enjoy watching it at some point; that point came this morning. One of the story lines on the report was about narcolepsy in dogs and humans, and the doctor researching and identifying the causes of narcolepsy in both said that when a narcoleptic animal becomes excited, frightened or stressed, they lose muscle control and fall asleep. THEN . . . and here's the clincher . . . he says that infectious agents such as strep can cause narcolepsy! Now I'm wondering if DS has been dealing with that: a combination of stress and strep! I tried Googling this, and I found some references to scholarly articles that discuss the following abstract, but I can't find an accessible copy of the whole article: Have any of you seen anything similar with respect to your kids?

That is fabulous news! I continue to be amazed by the moms like you on this forum who persevere and remain strong and never say "Never!" when it comes to finding good answers for helping their kids be the best they possibly can! Not to be cliche, but it really is awe-inspiring!

so he is not on abx now???/ would you say 80% better? how/why did you decide to stop? how long has it been since you stopped?/ any thoughts on next move if things decline? We have been trying to step him down over time, mostly on the basis that we want him taking the medicine for as long as he truly needs, but no longer. So after the five months on XR at 1,000 mg., twice daily, we dropped him down to XR 1,000 mg. in the morning, followed by regular Augmentin (the XR version appears to only come in the 1,000 mg. variety) at 500 mg. at night. We did that for 10 days, and then dropped again to 875 mg. Augmentin in the morning, and still 500 mg. Augmentin at night for another 2 weeks. Just this past week, we went down to 500 mg. Augmentin both morning and night. Yes, I would say he is about 85% and still working hard at certain behaviors. But -- knock on wood -- we haven't seen any significant backsliding since lowering the dosage, either, despite the onset of seasonal allergies and a brush with a cold he picked up from a classmate. DS13 has had OCD behaviors, off and on, for over 6 years before we found PANDAS, so I'm not certain that he can ever be 100% OCD free, even if we were to keep him on high-dose abx indefinitely. So we're letting his behavior and his ability to live his life as he wants, without undue interference by the OCD, be our guide. It is a day-to-day thing. When he has a couple of tough days in a row, it makes me consider asking to step back up to the higher dosage again. But then he will have a great day and take on some challenges he hasn't been able to address for the last several months and be successful at it, and I think I shouldn't doubt his progress so quickly. If things decline markedly and consistently again, we'll go back to the higher-dose abx first, and we haven't completely ruled out another step, like IVIG, should he begin to struggle again unduly. It's just so hard to say what is the right path, especially when results can be somewhat erratic, and the research remains relatively new.

Thanks! More fuel for the fire I keep stoking under our doctors!

This is so interesting on so many levels, especially as PANDAS isn't the only source of inflammation. Our DS also has allergies (inflammation). We've really upped his probiotics of late, and adding Ibuprofen seems to help tremendously also, in addition to his abx. Also got quercitin and tumeric going, which are supposed to be anti-inflammatory as well. Thanks for sharing! Our medical professionals really need to get their heads together on all these "pieces of the puzzle," and I am grateful for every article and link this forum provides that gives me more fodder to share with them and say, "Read this!"