MomWithOCDSon

We, too, have found that zinc supplementation helps focus. There're a number of papers on-line to that effect, as well (hello, Google! ). Sort of like Smarty, we discovered the positive impact "by accident" when we gave DS a Zicam because we thought he was coming down with a cold. Now we use OptiZinc by SolaRay which is supposedly an optimally bio-available zinc supplement; he gets one twice each day.

Hey DC Mom -- We had a similar PANDAS response to spelling, actually in the middle of 2nd grade; DS went from being an aces speller and reader to a kid who seemingly overnight forgot everything! He's regained the reading skills (and then some), thank goodness, but like your DD, the spelling really never has come back within his complete grasp. Question: how is your DD with phonics? Do they teach phonics in the cirriculum, and is this how she's supposed to figure out spelling (along with the general grammar rules like "silent e" that she's no doubt been exposed to)? After mid-year 2nd grade, phonics stopped making sense to my DS; it was like a switch flipped. So he'd sound out words all day long, but he couldn't string them together to be coherent words, nor could he spell them out from the sounds. I don't know if that's dysgraphia, but it definitely seems like a processing thing to me. Anyway, we found this great book that I've recommended a time or two here before, but I keep seeing applications for it that go beyond the obvious: "Right-Brained Childred in a Left Brained World" by Jeffrey Freed. The book is geared and titled toward ADD/ADHD, but it really goes a lot wider than that. Freed's basic premise is that our kids are increasingly right-brained, and this means that they are whole-to-part, rather than part-to-whole, that they are visual more so than auditory learners, and that they frequently have fabulous memories which are sometimes more reliable allies in learning than are the more old-fashioned, "left-brained" techniques like phonics. Anyway, he has several specific techniques and exercises in the book that we found helpful, but in terms of spelling/reading, it comes down to something pretty simple: give up trying to "sound it out" and just memorize it! One to three runs through the spelling/vocabulary list, at most, and a right-brained kid will know how to spell that word FOREVER! It's proven to be pretty true in DS's case! I would also agree with Jill that taking points off for spelling leans toward the petty and may actually be the bastion of an unimaginative (dare I suggest "lazy"?) teacher. Unless, of course, she's granting your DD extra points for her creativity, expansive grasp of the subject matter and/or mature-beyond-her-years reasoning skills! Other than supporting DD at home when she encounters a task that involves spelling, I'd probably lay low for just a bit . . . see if this grading sensibility is really negatively impacting her. If not, well, then she knows that the world doesn't always run the way you or she would like it to, but she can get by just fine nonethless. If so, then I'd probably find a way to incorporate it within the 504, though I'm not sure what sort of "proof" you'd be expected to provide along those lines.

A new local news story on a young girl with PANDAS in which Dr. Jenike is interviewed, as well . . . nice video clip, too. KVUE PANDAS Story

Yes, we had this same phenomenon going on with our DS for quite a while during the depth of his PANDAS. Even now (more than 2 years later), if he's in a flare or experiencing a lot of built-up stress in general, he will become easily overwhelmed by some homework assignments, especially those involving math. Which is ironic, really, considering he's always been in advanced math classes and, outside of exacerbation, he demonstrates almost prodigy-range capabilities in the subject. Anyway, as to whether it is part of the PANDAS and/or purely behavioral, in our experience, it becomes a marriage of both. The brain is genuinely dysfunctional . . . scrambled, disorganized, inattentive . . . and thus holding focus on many/most assignments is truly painful for them. Add to that the frustration because they know it hasn't always been this hard, and then the self-flaggelation for being "stupid" or "slow," and they develop a real aversion to the whole effort. So then the avoidance behavior (classic in many cases of OCD) kicks in full bore, and it all becomes a self-fulfilling prophecy. He avoids homework because it's hard and frustrating, and the homework continues to be hard and frustrating because he's been avoiding it. It takes a lot of concerted effort on everyone's part, but we've found that the best way to nick away at this behavior is to build a model for success, brick by brick, if necessary. We sat down with our DS and had a very frank discussion about it all: you know the work has to get done, you know you're capable of doing it. But it's harder right now because your brain is trying to recover from being ill, so you have to cut yourself some slack and just know that you can get through this, we will help you, and it doesn't all have to happen in one day, but it does have to happen. Then we made a "doable" plan . . . one which had success built into it so that, over time, the frustration would be the exception rather than the rule. Here're some tips I would suggest: Work with the school/cirriculum program to weed out "busy work" and repetitive assignments, allowing you and your DS to focus on the "meat" of the material. That's usually more interesting and engaging for our bright kids, anyway, and helps limit the repetition that they find trying and painful. Our DS, too, had an aptitude for the computer. But you can turn this into an asset. Allow him to keyboard assignments rather than handwriting them, for instance. Handwriting can be harder for our kids because of the small motor skills and concentration it requires, plus if they have OCD, the unending process of writing, erasing, writing, erasing can consume all the valuable learning time. If your DS opens his math book to an assignment, for instance, and is instantly overwhelmed by the number of problems he's been assigned, or just the look of all the work on the page, help him narrow it down to "just one." He can either copy a single problem down on a piece of paper, and then work on it alone, with the book closed, or you can create a "filter" with a piece of construction paper. Just cut out a rectangle large enough to reveal one problem at a time, while covering up the rest of the page. This can help filter out all the "noise" on the page that can lead our kids to flip out or tune out. If he has reading assignments to do, like a novel, consider using books on tape. They can follow along in the written book if they like, but at least the reader helps keep them on pace and takes some of the pressure off them looking at "this chapter has 42 pages!" Decide in advance with your DS how long he thinks it might take him to complete one assignment, or even just one problem. If you think he's being a little unrealistic, stretch the time a bit or shrink it a bit in the interest of either giving him the best chance for success within the timeframe or, if he's doing better, pushing him along a little faster and more efficiently. Allow frequent breaks in the work period; our DS used to like rolling around for a few minutes on a yoga ball, and then he could come back to the work. Work on stretching out the number of questions he answers or the length of time spent working between breaks as he improves. If he's having trouble with a subject or a math problem, help him break it down into manageable "bits." Sit by his side while he works, not to hassle him or do it for him, but so that he knows you're literally there to support him. If, like our DS, he starts to complain that he can't remember how to do something, remind him that he does know. Ask him what the next step is, and once he's come through that, ask him what the next one is. Encourage your DS to involve more than one sense, more than one skill, in the process of working on an assignment. Ask him to read out loud, and/or explain to you why he's doing what when working through a math problem. Encourage him to let you be his student for the moment, and/or to read out loud, speak what he's writing down out loud, etc. Sometimes involving more than one sense and/or skill can help them organize their thoughts better. But most of all, don't let him give up, at least not entirely. Some things may have to be "deprioritized." Some things may have to wait. Some things may take longer than they used to or "should." But he needs to know that he can do it, and that he just has to keep trying, gain a little ground, inch by inch, every day or every week or every month. Hang in there!

I feel for those of you with younger kids for whom pill-swallowing still represents a "frontier." I know it must be challenging! Several weeks ago, DS had a friend over after school on a Friday, and he invited his pal to stay for dinner. I pulled DS aside for a minute to ask him if he wanted me to set his meds/sups aside for him in the kitchen where he could take them privately, rather than putting them out on the dining table like we usually do when it's just family. He looked at me with a blank stare and nonchalantly said, "I don't care; XXX (his friend) won't care. Unless maybe you want me to take them privately so he doesn't think you're a nut or something." So, I guess I've graduated from Worst Mom Ever to Mom the Nut. I wear the title proudly!

My DS took Lexapro for almost 4 years before we found PANDAS, and we didn't have any large belly or distended belly issues. I do think that it caused him to gain weight in general, even though his psych at the time denied that this was part of the profile. But his weight gain was general . . . limbs as well as torso.

Yes, unfortunately it does sound like an OCD fear. We've never had that exact one, but "contamination fears," i.e., fears that something is "dirty" and therefore unacceptable, are pretty common. Other than smelling something less than appealing that triggered this idea/fear for her, perhaps she caught sight of some dust motes in the air when some sunlight streamed through a window. Or perhaps the steam from her bath made the air feel thick and heavy to her, and the sight of the steam itself reminded her of "air pollution" she may have been introduced to at school, and/or the heaviness of the air made it harder for her to breathe, and so she equated all of that with the air being dirty. That being said, sometimes OCD fears have a real world, rational basis, and other times they don't and come purely from an imaginative mind that's short-circuited in a not-so-great way.

Tattoomom -- I'm sure it doesn't seem like it to you, but given as this all started for your DD just this past April, you may truly still be dealing with the "root" issue, and if that's the case, the psych meds are not going to be able to do much until you get the infection/auto-immune fully under control. At least that's what the anecdotal evidence would tend to suggest. Are you still giving the zith only every other day? I know it has a long half-life, but doing anything less than full dose daily seems to me to be more of a prophylactic response than a treatment response. And if she's still so highly anxious and once responded well to daily abx, why not try going back to daily and see how she responds? Setbacks on reduced dosage or removal altogether of abx is very common in PANDAS, though no one seems to know exactly why. Some families wind up finding highly infected tonsils that likely perpetuated the illness despite multiple rounds of abx, some people have found sinus cysts harboring bacteria, etc. There's been discussion about "intracellular strep," a form of the microbe that can kind of "hide out" in various types of cells and/or biofilms in the body, making it extremely hard to eradicate effectively to the point where the body gets the message that it can really, truly lay off antibody production, etc. My DS would regress every time we tried to reduce his dosage, let alone take him off it; it usually wasn't visible a day or two after, but by the 8th day of reduced dosage, it became very apparent. You could set your clock by it. In the end, we wound up keeping him on treatment dose Augmentin XR for nearly two years, and then when we weaned him off, we did it very, very slowly . . . trying to avoid the "shock" to his system that might spur his immune system to freak out again. In the end, that last, long, slow weaning seems to have worked (knock on wood), but who knows why he seemed to benefit from the abx for so long? He's always had respiratory issues, so maybe he had some strep lurking in his sinuses and it took that long, constant abx to finally reach all of it? Or maybe in his gut? We may never know. Unfortunately, a lot of this is guesswork . . . you make as educated a guess as you can, and then you see what works. If your DD has had beneficial results from regular, daily abx before, I would go back to it and see if you see beneficial results again. Hopefully your doctor will roll with you on this. Just make sure to use probiotics, too, so that you don't wind up having to deal with yeast issues or anything like that due to the abx use. Good luck!

Well, if you can't see the Zoloft or the Tenex doing anything . . . positive or negative . . . and her anxiety is as high as it ever was or worse (?), it makes me think she's either 1) fighting an active infection of some sort or 2) still dealing with the autoimmune fall-out from an infection. I know that there are some forms of strep that are resistant to zith in certain parts of the country. Is it the only abx you've tried? And you did see it work at some point? Sorry, I have trouble following all the histories on the forum. Have you tried anti-inflammatories, like ibuprofen? See if that makes any difference?

I share your concern re. the doctors deciding that a positive response to the more typical anxiety/TS meds could lead them to preclude PANDAS as a viable diagnosis, but most of the doctors actively practicing and researching PANDAS wouldn't be so short-sighted, I don't think. Dr. M regularly utilizes low-dose Zoloft in the full range of treatment options for the PANDAS kids she sees, and Tenex is now being used as a non-stimulant response to ADHD, only it's been repackaged under a different name: Intuniv. So doctors familiar with PANDAS and the myriad of comorbid behaviors, including anxiety and sometimes ADD/ADHD, would not be surprised to see that these meds may have some positive impact on our kids, at the right doses. I would suggest you keep an eye on your DD, and journal daily in terms of her behavior, triggers, anything outside the norm that might account for a change in her behavior, either positive or negative. If you have a bad day here or a bad day there, that's likely just part of the process. But if you see the bad days adding up again, and if she seems to consistently become somehow "more" of the anxious things you'd thought the Zoloft had initially set aside, her dose might be too high for her, and you might consider cutting it back . . . not out, but back. If you abruptly cease the med, that might cause an even greater negative response, but cutting it back, if too high a dose is causing the increased agitation, should result in improved behavior on her part within 24-48 hours of having reduced the dose. Otherwise, you might need to consider whether or not she might not need more medical interventions . . . that perhaps there's still an autoimmune response impacting her health and her behavior.

Thanks for the quotes! Those are excellent, and considering my home under my "rock" of work, school, chauffeuring, etc., I was unaware of this resource until you posted it. Glad your IEP meeting went so well and the outlook is positive! Hallelujah for schools that put the kids first!

Everyone's experience is a little bit different, but ours has been similar to yours. The abx made a tremendous difference in our DS's physical and mental health but they didn't entirely "cure" everything. In our case, we tend to chalk it up to the fact that he was older by the time we got a PANDAS diagnosis, so he'd been contending with the anxiety and OCD for nearly 6 years prior to that and had developed some "coping behaviors" and learning patterns that the abx alone couldn't set aside. In your case, though, as your DD is so young and likely hadn't had a chance to develop really set-in behaviors, I would think the turn of events suggests that the Zoloft and/or Tenex are doing something/supporting something in your DD that remained out of balance even after the medical treatments. Now, maybe it's possible that with enough time, patience and trial and error, you could have arrived at the same happy place by addressing methylation issues or neurotransmitter imbalances with "natural" supplements rather than prescription meds, but it's hard to say, and you've achieved what you were after: a happy, functional child. Does that mean you weren't/aren't dealing with PANDAS after all? No, I don't think that's what it means at all, though likely some docs would likely say that your DD's response to the meds proves their misguided theory that PANDAS isn't "real." Our 12-year-long odyssey with our DS has led me to believe that there may ultimately be a finding that there's no such thing as "regular" OCD or TS . . . that every case of it is some blend of genetic susceptability and infectious trigger. Glad you found a "good place" for your DD, and may the good times continue to roll!

So sorry you're confronted with all this at one time; that, combined with having dealt with your DS's condition for an extended period, surely takes its toll. Not to offend anyone here who relies on the health insurance industry for a paycheck, but I despise each and every person in that industry I've come across; if they're not actively working to throw up a wall between you and your benefits, they're participating in the "stall and distraction" protocol so endemic of the industry. It makes me spitting mad. Not to open a can of worms on your thread, but I do wonder why you "don't trust supplements"? Not that they're always the answer, and not that coming up with your own cocktail might not have unintended, even negative, consequences. But I'm thinking that if you're starting with a clean slate in that regard, and get the advice and support of an integrative doctor or a naturopath . . . someone well versed in the field . . . beginning with a single supplement at a time and working from there might not at least help a bit and/or take the edge off some of the more debilitating issues? Even aside from that, and aside from being denied PEX for the time being, I would hope that your medical/mental support team will make itself available to you and offer some "triage" plan/options so that you and DH can do the things you need to do to hold your household together, including your new job. This most recent highly disappointing news (denial of PEX coverage) is maddening and certainly demoralizing, but you're a great mom, and you'll find a way to juggle everything again, just as you have up 'til now. Hang in there!

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