MomWithOCDSon

We have a "boutique" PPO policy through my small firm with Blue Cross Blue Shield. And like yours, the "mental health" care coverage has historically been about 1/2 what the regular medical is, though the regular medical isn't anything to cheer about, either, in my opinion. Too many procedures are classified as "routine" but "elective;" translation, we recognize them as standard tests/treatments for various ages and/or conditions, but you don't HAVE to partake of them, therefore, we won't cover them. That being said, however, I was told by my HR person at work that there's been a change in the law and, as of January 1, there is no difference between physical and mental health coverage! I know there was a "mental health parity" bill languishing in congress almost 2 years ago, so I'm wondering if that finally got passed?! I guess it's time for a little more research on my part.

Never heard of it. How old is your son and how much does he weigh? Does "ERY" stand for anything in particular? Erythromiacin, maybe? Yes, the generic name is erythromycin. Though I've only been on the forum for a few weeks now, I've not seen any previous references to erythromycin use for PANDAS, and as for the dosage, I suppose it depends on the age and size of your child. I'm familiar with having been given erythromycin myself in the past for sinus infections or ear infections, but I'm not clear on its effectiveness in eradicating strep. If you've scrolled through some of the other threads here, you'll most frequently see references to Augmentin, Azithromycin and/or Keflex for long-term PANDAS dosing. My 12-year-old, 120-pound son is, for example, taking 2,000 mg. of Augmentin XR daily.

Oh Mom, been there, done that for YEARS! It is craziness, but I know exactly what you're going through. I really thought we might be the only ones until, maybe three years ago, I read about an "American Idol" contestant . . . I think his name was Blake, who was known for designing and sewing his own pants! Turns out as a kid, we wouldn't tolerate the commercial clothing so his mom took him to the fabric store, let him pick out what he found "wearable," sat him down in front of her sewing machine and taught him the basics, and then told him to make his own! He's 20-something now, and he STILL does it! I tell my son that story every now and again, just to warn him that there's going to come a day when he's going to have to fend for himself in this respect! Socks: we found a brand at Target that comes in both black and white, come in bundles of 3 and they're above his ankles but lower than crew; they're also seamless. Wish I could remember the actual brand name, but they have a threaded, gold line around the toe box where the smallest size available has one line, the next size up (medium) has two lines, and then the largest size has three. These are the only socks he'll wear, and he's been wearing them for about 4 years now. Shoes: we have issues similar to yours. As a result, he will wear only one pair at any given time and he's wears them to shreds. Years ago, in another desperate search to find him something he would be at all comfortable in, we wound up in the children's shoes section of Nordstrom; those people know their stuff! They immediately identified that he has an exceptionally high instep, wide toe box and narrow ankle so, yes, many brands of shoes won't suit him (don't know if these physical traits are common to kids with sensitivities, but maybe they are). We've found that he can wear Merrills, Keens and/or Eccos with the least angst, though we have to put tongue pads in them so that they don't slip off his narrow heel while fitting him length-wise. Keens, especially, have a great wide toe box. These are expensive brands, but I figure if they're the only shoes he's wearing and he can wear them for about a year without outgrowing them (these brands tend to last, too, so lately I've been able to take them to resale when he outgrows them, rather than just throwing them out), then they're worth it. Also found that tying and untying laces is an issue for him, so if shoes come with regular laces, I replace them with "Yankz," a, bungee-cord type lace system that, once you've gotten the hang of it, is easy to install and he finds them easy to adjust. Yanz are available on line and at some specialty outdoor wear retailers, like REI. Shirts: yes, tagless we find is the way to go. Hanes t-shirts work for pj's, and, luckily, Gap and Old Navy and even Target have gotten pretty good about tagless items, too. I even find some items at places like Kohl's, and the Lands End catalog has some good stuff, too. My DS12 doesn't like collars, buttons or half-zips, either . . . just plain old crew necks, please . . . but shirts seem to be less of a problem than almost everything else. Pants: my son refuses to wear jeans, like 99% of his peers. He spent grade school in sweat pants, and I was usually able to find some pairs that didn't scream "I'm sweat pants!" across the room, like cargo styles from Hannah Anderson or Land's End. But every time I'd try to get him to wear jeans or even cargo pants or Dockers-style khakis or whatever, he'd say they were too hard, stiff, scratchy, and he couldn't stand the way the pockets could tend to bunch up inside or stick out on his butt or whatever. I was really concerned about the social ramifications when he hit junior high. And then I remembered that I'd been buying scrub pants -- you know, that nurses and doctors wear? -- for my dad for years as gifts because he is wheelchair bound and really needs comfort and ease, etc. I had a "Scrubs" catalog, and they come in an amazing array of styles and materials now, including denim! So, I buy the "short," small size of denim cargo scrub pants for my son; they have an elastic and drawstring style waist, lots of cool cargo pockets, and they are very soft and non-stiff but denim nonetheless. And they come in a variety of washes, too, so they don't all look alike if he wears them day after day. I just have to hem 'em a bit more (my kid has unusually short legs beneath a very long torso), and I use a seam ripper to just remove the "Scrubs" tag from the back, and we're done! He's been wearing them for the last two years, and though they are definitely loser and baggier than your standard Levi's, his friends don't seem to consider his taste in clothing "odd" anymore, and he doesn't get teased about wearing sweat pants 24-7. Those're my best tips! Now, if I can just figure out dress clothes for those occasional fancier events, I'll be all set!

Thanks, Isabel. Well, unlike some PANDAS parents who have only been confronted with OCD behaviors fairly recently, we've been dealing with what we thought was OCD for more than 6 years! That's not to say we don't have to constantly "retool," because every time an exacerbation hits, he's that much older, in a different place academically, in a different place physically, in a different place emotionally, but we've had good professionals on our side all this time, and other parents like you to give us advice and cheer us on, too!

Interesting...my ds started reading at the age of 3... he had some sight words at 2 1/2. He actually asked me at 2 1/2 when he would learn to read... I never expected the answer to be 3. It is like you described... he didn't go through the learning to read process that I was familiar with. It definitely has a lot to do with his memory. My mother was over the other day and my 2 1/2 year old was looking at books with her... I said to her, "Can you believe DS1 was just about starting to read at his age?" My mother said yeah and jokingly looked at my 2 year old and said, "Yeah, what's the matter with you?" He looked up and said, "Nothing" .... I looked at my mom and she knew what I was thinking... that with any luck there is nothing wrong with him and that is why he is NOT reading yet. So, out of curiosity, EarnestFamily and Ajcire, are your kids also better with "whole-to-part" conceptualizing than "part-to-whole"? In other words, if they're presented with a building project or a puzzle, and it's all in pieces from the very beginning, and they don't have access to a picture of it or have never seen it assembled, do they have trouble putting the pieces together in the right way? But if they come upon it whole, and then they or you dis-assemble it, they can put it back together, lickety-split? My son has never enjoyed standard puzzles, even the really simple ones as a very young kid. Originally I thought he was thinking, "What's the point?" But I eventually realized that if he had no idea what it was "supposed" to look like, he was reluctant to get started, much less complete it. But he could dis-assemble almost any mechanical object or toy . . . a robot, a vacuum cleaner, etc. . . . and then promptly put it back together, exactly as it was meant to be! Freed says this is another characteristic of "right-brained" kids.

Never heard of it. How old is your son and how much does he weigh? Does "ERY" stand for anything in particular? Erythromiacin, maybe?

One big ditto here! Son has unbelievable memory and has been identified as "gifted" by IQ and IEP testing, as well. Potentially worth noting, one expert on "right brained kids," Dr. Jeffrey Freed, says that kids like many of ours on the right-brained end of the spectrum (the extreme right end of which he actually identifies as "autism spectrum") tend to have exceptional memories and actually learn better by employing that memory than by, say, employing phonetics when learning to read. It's a cool topic. I'll look forward to reading that older thread, Vickie. Thanks!

Due to some immediate family/genetic issues, I currently take a progesterone-only birth control medication. I'm not PANDAS, so I can't attest to any impact there, but I do have a question in light of the seemingly ready availiability of progesterone treatments for girls/women: what would you do for a boy/man in this regard?

This is AWESOME and very inspiring! So glad to hear about the great progress! I can just picture you and your spouse looking at each other with Cheshire cat grins every time he's willing to do something the "normal" way again, rather than the convoluted-PANDAS-OCD-contamination way! What joy! May he continue to heal every day, and may you continue to be optimistic and resilient, even if there's an occasional tough day! Heartfelt congrautions to all of you!

I've recently stepped down off of probiotics, too, mostly because we were seeing some "silly" behaviors and excessive urination, which we've been told could be tied to an over-abundance of yeast. My son seems especially sensitive to Sach B.; I can almost time his potty schedule after a dose of that. For us, yogurt and an occasional extra acidolpholus gel-cap (in between abx doses) seems to do the trick without bringing any negatives to the table.

Great story! Kind of like a "fairy tale" that came true . . . everybody learned something (you - take it slow; him - my toys won't hurt me), and they all played happily ever after! May there be many more happy tales to come!

Every time I come here I learn something new and feel supported because I see that our family is NOT the only one going through all this stuff, even if we are the only one on our block, or maybe even in our neighborhood or community. And we necessarily spend a lot of time and words looking for help, suggestions, solutions, etc., But I thought maybe if we could post some of our small success stories . . . even if our kids don't yet qualify as "healed" . . . it might help us feel a little more empowered, a little more successful on a day-to-day basis. Obviously, we had a little success today which made me think of this topic, so I'll kick it off. Our DS12 is back on a fresh round of abx; this is Day 3. He had been on abx for 2 months, and then we took him off, both to try and assess what, if anything, the abx were doing for him, and also because his tummy was tired of dealing with it all. But along about Day 9 without the abx assistance, we saw him slide dramatically (2 major meltdowns in a single day when we hadn't seen any meltdowns at all for almost a week prior to that), we got another prescription. The day before he began this fresh course, he and his dad went over to our health club to take a swim; not being particularly athletic and loathe to "sweat" because it makes him feel "dirty and sticky," swimming is about the only physical activity he truly enjoys, and he's good at it, too! We really enjoy seeing him feeling so free and unencumbered by all the obsessions and compulsions his OCD behaviors tend to bring to most aspects of his daily life. Anyway, this particular day, they'd barely left before I got a phone call from my husband, telling me that they'd only made it as far as the lobby of the club when our son lost it, melting down about how filthy the floor was (major snow storm so slush, salt, mud, etc. were being tracked everywhere) and how he couldn't possibly stay there, go in the locker room or swim because it was too disgusting and dirty there. He was beyond reason and making a scene, so they cashed it in and came home. Then he was upset with himself for "giving in to the OCD" and spent the rest of the night beating himself up about not having been able to push past the contamination fear. Well today, Day 3, he packed his swim bag and headed off once again with his dad to the club to swim. Still snow and ice on the ground, and therefore slush and salt in the building lobby. He was nervous. But HE DID IT! He made it all the way into the club, through the locker room, into the pool, had a nice, long, energetic swim, and made it back home with a smile on his face! Now he's tucked into bed, pleased with and proud of himself, physically satisfied and no longer afraid to do one of the things he's always enjoyed the most until the OCD tried to take it away from him. I give credit to both the abx and my determined boy! What's YOUR Small Success Story?

Smarty -- We have major avoidance issues in our house, my son is older than yours and we only recognized it as avoidance fairly recently because he was so good at cloaking it in other explanations! Kudos to you for seeing through the forest to the one, important tree! As guided by our therapist, attacking and preventing acts of avoidance has been pretty hard-core. We just have to prevent him from doing it (avoiding) because every avoidance just increases the anxiety he has over that which he avoids the next time he encounters it. Our son came up with a list of "coping statements" that he repeats, almost like a mantra, when he wants to avoid something, like "Avoiding this is harder than doing it," and "It will get easier once I begin." And sometimes, we have to literally prevent him from avoiding. Like, he'll be getting started on homework and something will trigger him, and he'll want to leave his chair and desk and go throw himself on his bed or in his papason chair. So we have to physically stop him sometimes, reminding him to do his deep, relaxation breathing and calm himself and stay put, rather than yielding to his "fight or flight" instincts. Some days go better than others, but I can tell you that, every time, he feels better about himself and his power over the OCD when he's able, with or without our help, to conquer the desire to avoid and see a task through to its completion. I think a good therapist might be your best resource for addressing avoidance behaviors in a younger child. It is an ever-changing landscape, and while you don't want to traumatize him, if he continues to avoid, what he avoids might only become a bigger obstacle to him in the long run.

"Smarty" might be an understatement, too! You're gonna have to keep an eye on him as he gets older! He's already got the "crafty gene."

It is tough at that age (4-5) and, unfortunately, it doesn't get a whole lot easier because the stakes get higher. A yo-yo or a new baseball don't hold quite the same appeal at 8 or 9, and then you're expected to come up with enticements that actually bear enough weight to get the job done! One thing our therapist suggested, even at 6 which seemed to work and might work even better for slightly younger kids, is sort of a "performance chart." Just a chart you could get at the school/educational supplies store (or one you make yourself out of poster board) with columns and rows marked off. Then, if there's a behavior you find you need to modify, you write it in the left-hand column and then on the same row, extending across to the right of the chart, award your kid a sticker for everytime he's able to forego the behavior. Then you can decide that, for instance, 5 stickers will mean he gets a new book, or 10 stickers means he can go see a new movie or rent one from the video store, or whatever. He might be less inclined to obsess over the stickers than he does a tangible prize or prize box, and it also plants the concept of slightly delayed gratification without becoming obsessed over it, which is a lesson my son really needed help grasping. For sleeping in his own bed, for instance, the gratification could even get strung out, with increasing rewards . . . maybe 2 nights means he can pick out a new "bed critter" for night time, maybe 3 nights means he gets an extra story before turning out the light, maybe a whole week means something really meaningful to him? As for second-guessing the prize choice after the fact . . . oh boy, have we seen THAT! It even extends to Christmas and birthday presents, where we'll get him what he asked for, only to have him ruminate that maybe he wasted that "wish" because he should've saved it for something bigger or better later on, etc. It's tougher at 4, but we try reminding our son that this is OCD "second-guessing" and that it is not real. That there'll be another opportunity for him to earn whatever else he may have his eye on, so he should enjoy what he's picked or been given now, without regrets. "Tricky" is an understatement . . . . !!

I have to admit, I hadn't given the double-blind side of things much thought and I, like you, would not want my kid to suffer any more than he already has either. But we desperately need more research. I'm pretty far removed from the process, to be honest. Does it take double-blinds for the scientific or medical community to accept results as valid? Or could freshly-diagnosed PANDAS kids not be given abx courses and studied and tracked for changes in their behavioral manifestations and bloodwork before, during and after, without potentially harming someone in the process by giving them a placebo or withholding the intervention? Would such results be considered valid? Or would they, as my psych likes to label much of the stuff I tell him, be considered only "anecdotal evidence." And how does the process work to begin with, do you know? Does a doctor or team of researchers determine a project they'd like to address and then go after funding for it? Or could/would a pharm company itself take an interest in research of a certain kind and commence the research project, from A to Z, on its own? And what about human analogues for the studies, if they must be double-blind: mice or swine or something? Mostly, the gist of my initial query was, would contacting one of the primary abx manufacturers along this vein yield any results?

I realize it is controversial and we wouldn't want to compromise the perceived integrity of any findings or results, but what do you all think? Should we look to enlist the help/funding of some of the pharmaceutical companies like GlaxoSmithKline who makes Augmentin XR, or the maker of Azith, for more PANDAS research? I know these companies frequently fund studies, so why not ones on this "daring" and "pioneering" field of PANDAS? A lot of what I read indicates that so much more research is needed, and some like Cunningham have to turn to parents to pay high prices for testing because they don't have the necessary funding to cover costs. Don't you think Big Pharma would jump at the chance if the results were likely to be that their products are viable responses to PANDAS? And isn't that what many of our posts here are recognizing, that abx DOES help?!?! Think of the sales volumes! Am I nuts? Or maybe a day late and a dollar short and somebody with Big Pharma already has their hand in on the PANDAS research front? If so, somebody school me here! I'd love to know so I could talk 'em up instead of beating them up like I usually do (sick of all those TV commercials for prescription meds, for one thing!)!

He's already heard it, in part. But this time I plan to add something along the lines of, "So, I guess you still think that ulcers are caused by 'stress' instead of bacteria, too, huh? That one's probably not been definitively 'proven' to you yet, either." Honestly, he's a good enough guy and has been good to us and our son over the years. And unlike most psychiatrists I've known or heard about, he is all about getting our son off meds as his ability to function in the world improves; before we discovered PANDAS, we'd gone through a number of reductions and weaning off psych meds because the doctor genuinely doesn't want kids on them a moment longer than they need to be. But he's put way too much stock in a conversation he had with Swedlow years ago at a conference regarding strep and OCD in which she appeared to more or less recant the validity of some of her own research, or at least apply only a very narrow set of criteria which would exclude a large portion of what we now believe to represent the PANDAS population. So, we're trying to "re-educate" him; we believe he can be saved!

I can say that our son has never had "calamity thoughts" associated with his having to do things a particular way; in other words, he's never articulated that he would necessarily even get sick, let alone die, from all of his contamination fears. It's simply that the contamination itself leads to unbearable anxiety that prevents him from moving on or enjoying anything else until it has, in his mind, been successfully addressed. The same seems to apply to the events displaying his inability to be flexible or spontaneous, or to just go along with someone else's agenda rather than his own. It's not that something awful will happen to him or anyone he loves if he willingly allows the situation or event to shift; it's just that shifting brings on another round of overwhelming anxiety that he can't get past in order to enjoy the change in plans. Like you, we're pretty sure that once we got him to this new, unexpected event or place, he would really enjoy himself and forget all about being anxious over the change, but it is a double-edged sword. You either have to be prepared to roll those dice in public and withstand whatever meltdown might ensue until his OCD brain "makes peace" with the turn of events, or you have to engage your friends and family into the plan to try and help "building his flexibility," by asking for their indulgence as you work through this particular piece of the puzzle. As an example, my son has a friend whom he's known since kindergarten and lives in our same neighborhood; I'll call him Adam. Adam is one of those kids who's pretty even-tempered and accommodating, so he and my son get along well because Adam will pretty much go along with my son's plans, order of attack, etc. I'm sure Adam was always clued in that our son was a bit "different" in the way he approached many things, but rather than try and explain the situation to another child, we elected to talk to Adam's parents. So when there was a birthday party or an invitation to go somewhere together (like to the movies or sledding) and our son would get anxious or have some issues with the separation (also can be a part of the anxiety disorder that manifests primarily as OCD), Adam's parents were informed and able to pitch in as necessary. And the reality is, 99% of the time that we actually convince our son to just "move on" and TRY accepting an unexpected turn of events, especially if he's in the company of others that exclude us, he finds a way to cope and enjoy himself. Now, he might have a fresh meltdown when he gets home because he's held all the anxiety at bay in order to get along with his friend, but he generally makes it through the event itself just fine. As for blurting out something along the lines of, "I didn't want to come to your house anyway!" or "I don't want to be here!" I've heard all sorts of kids say things like that in anger, frustration or anxiety, so I don't think it has to be a deal-breaker, especially if the other kid's parents are informed about the situation. I'm always amazed by how quickly kids recover from such rude, unkind, immature "verbal explosions," maybe because they accept them at face value and inherently understand that they are temporary, while we adults tend to attach more long-lasting repercussions to them because if you heard that kind of stuff out of an adult mouth, you'd have every reason to be seriously insulted?!?! I know that sometimes our son will say things impulsively or out of anxiety, either at school or in front of a friend, and once he reports it to us we're like, "Well, did you apologize for saying that?" or "How did Adam react when you said that?" And 99% of the time, the response was something along the lines of "No big deal," or "I knew you didn't mean it," or "It's cool, dude."

Our son's OCD has never really taken the "ordering" or "organizing" form, actually. "Just right" for our DS12 is a little more ephemeral. It's more like he cannot begin a task (eating, reading, a homework problem) because something just doesn't "feel right." So he can sit for an entire math period with a quiz in front of him and not answer a single question, not because he doesn't know the material or because he's literally afraid of it, but because it doesn't "feel right" at that moment. So his OCD puts him in lock-down. There's an excellent article on the OCD Foundation of Chicago web site called "What the Heck is Obsessive Slowness" which does a better job of explaining how such issues as "just right" impact one's ability to perform tasks in a timely manner (or rather, NOT in a timely manner!). I've found a number of excellent articles on this site to be really helpful in understanding some of the behaviors and what's going on in his head that he's unable to fully articulate. There might be one available that would speak more directly to what you're dealing with, too; look under "Expert Perspectives." undefined Does that answer the question? Just as a follow-up, we are finding even this "just right" behavior is fading over time with the abx; what we seem to be perenially stuck with, however, are the contamination fears. Ugh!

This isn't the kind of "just right OCD" behavior I'm familiar with because it seems to have some premeditated, logical basis, whereas the "just right" stuff seems to occur many times without any logical backstory and without any warning. With the behavior tied to PANDAS, I suppose it should fade away alongside his other PANDAS behaviors as the medical intervention takes hold; however, I know from our experience, that sort of lack of flexibility or "rigid thinking" can prevail unless we work to pro-actively offer up opportunities for our son to challenge it (but then we've been dealing with the OCD for 6 years and only recently came to PANDAS). So we might ask him if he can think of another way he and we might have handled that situation better so that neither he nor his friend was disappointed. Or the next time we plan an event, we'll make sure he's in on the planning and try to prepare him for some contingencies in the event something shifts and he's called upon to "go with the flow" instead of have it 100% the way originally planned.

Thanks again Vickie and Buster -- I think I've got 'em ALL! I actually spent three days, combing through the forum, hitting the pinned thread (FAQ, etc.), etc. downloading not just every article but also some of the more lucid discussions on topics of particular interest. Thanks to you guys and everyone else here, I am, I believe, armed to the teeth!

Thanks, Vickie! Just so happens we have an appointment with our very skeptical psych next week, and I've been gathering a packet I plan to hand off to him. This is now the "cover story"!

Having dealt with similar patterns for the last 6 years, I've come to think there's possibly 2 components to this sort of reaction on my son's part: 1. The OCD part of his brain is so cyclical that it just can't break away from an original decision or an original plan; yes, he's inflexible. I will add that this lack of flexibility has only become exacerbated by his approaching teen-hood, as he's gotten increasingly "self-righteous" and concerned with "what's fair" and "what's SUPPOSED to be," i.e. this playdate was SUPPOSED to be at his house, not the other kid's, and that's that. I can remember having a similar mindset in my teens, though, so I take that as a part and parcel of his natural maturation, though the OCD feeds on it and elevates it dramatically. 2. With my son, at least, there is also some underlying anxiety at play, and though he'll mask it as best he can during the planning and negotiation phases of a playdate, trip to the movies, etc., when the "rubber hits the road" and it's time to make good on the commitment, that's when he will pull out all the stops to kill the event because, frankly, he's just too anxious to follow through with it. Maybe going to the friend's house is just too trigger-filled for him, or maybe it is just unadulterated fear of being out of his own relatively safe environment. He'll start with what on the surface sound like reasonable justifications for changing or cancelling the plans; if those fail to get the desired cancellation, then he'll launch into a less-logical and more emotional attempt, such as your son's protests about how it was supposed to be at HIS home rather than his friend's, so that's the way it needs to be adjusted now. And ultimately, if neither of those first two, milder strategies work, he'll have a full meltdown and bring everything to a halt. You might try asking him if going to his friend's house makes him feel uncomfortable at all.

And Sammy Maloney is also away at college and thriving. He only takes abx when exposed to strep, but nothing prophylactically.