MomWithOCDSon

DeeDee -- Boy, did you hit the nail on the head: how to "enforce" his "moving on." You can talk 'til you're blue in the face. He will tell you that, yes, he knows it's not a good use of his time to reread or to ponder every word along the way. He will tell you, yes, this time, he's going to move through more efficiently. And he means it . . . it's not lip-service, and it's not him being a pacifist, either. It's just that the intention and the rational thought can get trampled by the perfectionism in the moment. He's conquered it in so many corners, so this is a stubborn one. It doesn't help, either, that your standard teacher is constantly issuing admonitions to the class to "read carefully," "reread Section XYZ to prepare for the quiz," etc. We constantly have the talk about The Lowest Common Denominator in school, and how so much of the instruction and warning language is intended for that sector of the population, how it really doesn't apply to DS, but because it suits the Perfectionism's world view (I'm going to start capitalizing that word, since it's taken on a life of it's own in this particular quadrant of our world), he has trouble truly setting it aside. Interestingly, LM's metronome idea does appear to have made a dent in that, if only temporarily or because of its novelty. We'll have to see if the technique continues to be of positive impact. Once we turned the metronome on last night, he did not stop and go back, did not reread, did not pause, take his eyes off the page and find something else to distract him. He just kept reading. Progress! DCMom -- My friends at work call me "the anti-mom," more or less for the same reasons and examples for which you've earned your "un-parent" title! My DS comes home, complaining that his classmates swear and it makes him uncomfortable, so for the next several weeks, I swore in front of him at every possible opportunity (I usually keep a lid on it at home, but clearly that was working against us). So now we've come to the point where he doesn't criticize others for swearing, and he'll even use a word or two in its proper context, particularly if he's quoting someone else. He was also an absolute prude about everything else (I don't know where he gets this stuff), so I pretty much dropped any pretense at age-appropriate television, YouTube videos, reading material (bring on "The Onion"!) in front of him; now he'll watch the occasional episode of "South Park" and pretty much every episode of "Top Gear" without bolting from the room when someone uses risqué language or behavior. He decided alcohol was pure, unadulterated evil and threatened to call the police rather than ride home in the car with DH and me after a dinner out during which each of us had a single martini. So DH and I decided we would have at least one drink at pretty much every family dinner and insist that, in addition, DS must toast us with a clink of his water glass to our wine/beer glasses. After about 2 months of not giving in to his religiosity/fear over adults' use of alcohol, he dropped it and hasn't raised the issue since. The challenge we're having with this reading issue is, of course, that we can't actively push against the issue without his participation. His bedtime is sacrosanct, so we're not giving him extra time to complete his reading when he struggles/drags/avoids/rereads. He'll get the grade he gets in light of how much he has or hasn't read and comprehended, and he'll have to deal with how that feels when it happens. But he will also come home full of regret if/when things don't go well: multiply your DD's confession/pledge by a factor of 10, I'm predicting. It all proves to be a very big and real paradox because the Perfectionism is stumped by the process and the consequences: he must read slowly and carefully to be Perfect, and yet he must also complete the reading in order to do well on the test and be Perfect. DS currently views the two pieces of that as mutually exclusive, so instead he wants to blame the teacher for giving them too much material to cover (possibly objectively true), the book for being poorly written (also possibly objectively true), etc. I welcome the opportunities for DS to learn that Perfect isn't a worthy goal (actually, he already knows that outside the heat of the moment and accepted his first B ever last year with good grace). I just want him to develop some solid, reliable, accessible skills and tools for dealing with this reading material issue because I know it is only going to get tougher in a college curriculum (at least in terms of pace).

Have you tried Pepcid? Could be a 1-2 punch, if you can take it, plus it comes in either 10 mg. or 20 mg. dosages, so if you're especially sensitive, you could start with the "regular" and move up to "maximum strength" should you need it. It's a different med/method of activation than Prilosec. It's a histamine blocker, so it works on both reflux and histaminergic responses like post-nasal drip, itchy eyes, eczema, etc. Within a week of using it daily, my DS's reflux and eczema cleared right up, among other histamine-related issues and behaviors (fight or flight). Worth a try, maybe?

LLM -- We tried the metronome tonight . . . an electronic, on-line one on his computer while he read in the same room. He claims it did help him keep pace a bit better, so we'll keep trying that as one strategy until we find it isn't helping anymore. He frequently does his math and science work to blaring music (Fleet Foxes, so I'm not complaining!), so I think the additional sensory input is perhaps helpful to him, rather than distracting, and hopefully the beat is helping him set a rhythm with this less-than-exciting reading material, too! Thanks again for the suggestion!

Thanks, as always, Emmalilly, for your timely and valuable perspective! He, too, can tear through reading something he WANTS to read; it's the stuff that interests him less (like History) that has him slogging through mud, uphill, both ways! :-) Hope college is going well for you this year!

Yes, we're going to try for some new ERP strategies in this regard. Actually, the striking through with a black marker was one of the old ones. We just need a new plan. That's one reason I'm actually thinking about putting him into a speed-reading course . . . seems like the ultimate ERP exercise "to fit the crime" to me! Enforced reading at a prescribed pace, demonstration of comprehension, etc. We've found a recommended one on line that might fit the bill, though we have to wait until Winter Break for him to take it on, given as it is a 10-day program.

I have yet to master this new Forum format! Thanks, Smarty. It's got some space, now!

Thanks! I knew I could count on you guys! Laure -- I don't think its convergence insufficiency based on his overall profile (no lyme here, among other things), plus he and I have discussed whether or not the words or letters "jump around," etc. in the past, and he's adamant that's not the case. I had him take a test on line at one point, too, based on a previous post in that regard, and he passed with flying colors. I'm pretty sure it's the OCD/perfectionism at work. LLM -- I don't know that he'll go along with the "cut-out," but he might agree to use a straight edge or ruler. The metronome sounds fascinating, frankly, and he frequently seeks other sensory input while he's working on other subjects, so who's to say it might not help rather than distract? I think we might give that a try and see what happens! I'll let you guys know. DCMom -- I don't see your input as harsh, and I completely get where you're coming from. We have long since set aside concerns over grades, and we are all about getting him completely independent, mostly so that going away to college is a full-on option for him. He read a required novel entirely on his own over the summer, but that pace was manageable; the daily pace of these AP classes, frankly, is not. It's not that we want to enable him; what we want to do is move him along! Or, more accurately, help him to continue to develop his own skills with respect to moving along! So far, he's been able to do that with math, organization, writing papers, etc. It is only with this reading stuff that he gets dragged down to a snail's pace. And he's the one that cares about his grades, but somehow that doesn't translate to "inspiration" for yielding to the reality of the situation for him. I.e., he's historically not been the kind of person who actually "learns the hard way." We're also trying to wean him off accommodations because, quite frankly, in college, there likely won't be any. But then, too, his materials will, for the most part, be e-reader compatible rather than in voluminous Xeroxed and stapled "hand-outs," and e-readers do provide some features (as highlighted by LLM) that make the reading less cumbersome and overwhelming. We'll try some of the suggestions and see if they work. I'm still entertaining the possibility of a "speed-reading" course of some sort, too. Thinking that maybe, if through a course curriculum, he is REQUIRED to read through a passage at a certain pace and receives practice of this sort in an enforced way, he might not come to realize that his comprehension really doesn't suffer due to an increased speed, and that might make him more willing to "speed" through his course materials? Off to dig the metronome out of the closet! :-) Thanks again!

As I noted in a previous topic, my DS is really doing well and we are so, SO grateful! Of course, you keep shooting for the moon, though, hoping that you can continue to make gains and further enrich his life! Here's my question. DS is in honors and AP courses in his junior year of high school, and the daily reading requirements in terms of volume are off the charts! In addition to his other subjects, the English and History cirriculums expect the kids to read, easily, 50 to 100 pages of text every night. DS has a very expansive vocabulary, and his reading comprehension is well above normal, as well; however, his reading speed is abysmal! It seems to be mostly tied to perfectionism, but he reads incredibly slowly and carefully so as not to miss anything, and if he gets distracted at all, he'll sometimes go back and reread a paragraph or even a whole page, just to make sure he's gotten all the information/material! Drives me bonkers, and it's going to put him further and further behind if he can't figure out a way to speed it all up! He's been given permission to use audio books for the fiction reading in his classes; however, that doesn't seem to be an option, really, for text books and teacher handouts. There have been times with DH or I would read aloud to him the assigned reading for a class, or take turns reading aloud with DS, and that helped drive the pace a bit, too. However, that isn't always an option and, frankly, we're hopeful that he'll be ready to go away to college and at that point, we won't be around to read his assignments aloud to him! So he's got to develop his own skills in this regard. I've reached out to the school and its reading specialist, but thus far the feedback has been that most reading programs are focused upon learning disabilities or comprehension issues, rather than speed. Some OCD experts have suggested that one method to prevent "lingering" or rereading is to have him strike through what he's read as he goes along with a thick black marker, but that doesn't seem practical, either, as he needs access to the material again as text evidence for assigned papers, and defacing a book or copying the whole thing so he can mark it up isn't practical, either. I remember the days of "Evelyn Wood Speed-Reading" courses, but I don't know if that exists anymore or if it might not've been complete bunk to begin with. And do you think something like that would help DS? Do any of you have experience or ideas in this regard? Thanks, as always, for your input!

Welcome, and thanks for your post! You are sure to be a value member of our "family" here! It seems deterioration in math skills is such a common theme among many of us here, and odd that it is frequently in combination with kids who, pre-illness, were actually somewhat prodigious in terms of math skills, too! Have you tried zinc supplementation for attention/focus? We found it accidentally when DS seemed to be developing a cold, so we started having him pop those Zicam lozenges to fight it off; he was atypically focused and able to stay tuned to into his math and other tedious homework much better, so we began giving him zinc supplements on a daily basis, and it does seem to help. With respect to math, what are your DS's primary challenges? If he's like a lot of other kids, it's not a matter of his not being capable of doing it; it's more an issue of focus and not becoming overwhelmed by the many steps required, the sheer number of problems, or the organization of the formulas on the page? We had a couple of strategies for combatting this when DS was struggling: 1) Try using a postcard and cutting out a slit in the middle of it, just large enough to allow a single math problem or equation to show through the window. This isolates the one thing he needs to focus on and drowns out all the other stuff on the page that can add to distraction and confusion in terms of organizing the problem and working the solution. 2) Try having him write down the problem he needs to solve, all alone, on a single sheet of paper, and then work it out. Again, isolating it from all the other letters and numbers that appear on the page of the textbook or workbook seemed to help our DS. 3) Ask him to demonstrate to you how to solve the problem by explaining each step he needs to take in solving it. By involving other processes (speech) in the process of solving the equations, I think our DS was better able to organize his thinking, and having his dad or me by his side to ask, "Then what?" helped him maintain his focus and momentum. Over time, with physical and mental healing and by keeping his math skills somewhat still in play, our DS was able to regain the footing he lost, and now he can do his math independently again. Just a few ideas! Good luck!

I think that we were originally dissuaded from any Omega 6's because they were generally pro-inflammatory, rather than anti-inflammatory. However, there are a couple -- evening primrose oil (EPO) being one of them -- that are anti-inflammatory. Also, interestingly enough, EPO seems to be much less expensive than the better fish oil formulas I've found.

Thanks, everyone! And yes! Please know that, if you're not in a "good" place at present, you can and will get there! You're dedicated, you're relentless, you're bright and intellectually curious, and you love your children and your families beyond compare. This is a winning, unstoppable combination!!

And I'm lucky to have YOU! I know, can you believe it?!?! It's almost like he's a "real boy" again! :-)

I agree with PIK. When my DS was at his worst, we were prescribed a whole host of antipsychotics (zyprexa, Seroquel, etc.), mostly to give him and us a break from his out-of-control anxiety. I'm not a fan, but I can see why they might be useful in this off-label manner for short periods.

Hi Melanie! If you do a search for "NAC" here on the forum, you'll see a thread or two about kids who do well with NAC and those who don't. LLM is better versed in this, but as I recall, there might be a link in terms of methylation and some of the genetic gene mutations that some kids have versus that that don't. Have you had genetic testing for Danny? That might give you some clues. All the best!

Searching for Help and Otksmama -- I wish I had a "magic bullet" to share, but we honestly threw almost everything we had at this. One thing I know for sure is that, for our DS, the long-term abx were key. They facilitated the turning point just under four years ago, supported him as he came out of a very deep hole, and got him back his sanity . . . literally! We have "experimented" with an array of supplements over the years, but the ones that have stuck are quercitin, D3, omega's, NAC, B6 and zinc. He also remains on a low dose of an SSRI (Zoloft) and a glutamate modulator (Lamictal). The signs are good that we may be able to wean some of this in the coming year, but because we see their benefit in his quality of life, we're not overly anxious about that. We did therapy . . . ERP and ACT (Acceptance Commitment Therapy), intensely at first when he began to heal, and less regularly as he came back to being able to manage himself without constant intervention. Now he checks in with a therapist about once every two months. And when we tried to return him to school shortly after beginning abx, we secured an IEP at school for him, which remains in place. He doesn't always need the accommodations contained within it, but it's been a wonderful tool for helping alleviate some of the pressure at times. I'm certain, too, that time has played an important role. His brain needed time to heal, and he needed time and opportunity to relearn how to handle himself and how to put his skills into play if and when anxiety strikes. He's a great kid, though this illness has tested him beyond any fair measure, and he's learned a level of resilience and resolve that are almost unimaginable. I do feel certain that all our kids can come through this, especially since he was in such a deep, dark place when it all began.

As some of you other "old timers" know, we've been here since approximately October 2010, when we first discovered PANDAS played a role in our DS's long, hard fight against OCD. We will be forever indebted to everyone here and to the whole ACN family for helping us find our way through. When we began, DS was 12, completely non-functioning, curled up in the fetal position on the floor of his room, unable to do even the most mundane tasks, let alone actively participate in school or the "normal" life of a pre-teen. Four years later, two of which included antibiotics, he's doing so well and making us so proud, I just needed to brag for a minute and hope that his progress might inspire some other kids/families that are looking for their own light at the end of the PANDAS tunnel. Over the summer, DS began learning to drive, he worked his first part-time job, began his own consulting business, and attended a week-long media arts camp at a well-respected media arts college. He also did some college research and got very excited his future prospects. School started last week: his junior high school year. He's enrolled in AP and honors classes, participating in the school's robotics competition team, and digging his challenging course load thus far. The "ice cream on top" came yesterday when he had his first date with a girl in his class! Honestly, I wasn't sure he would ever get to the point where he would be comfortable with dating, let alone the first week of a new school year! I don't intend to mislead anyone. Plagued by OCD behaviors since the age of 6, he still contends with some of that; he's a bit of a Mr. Clean as well as a perfectionist when it comes to his school work. But rather than it bossing him around these days, he truly seems to be in charge of it, unwilling to let it get in his way either academically or socially. So things just seem to get better and better on our end (knock on wood), so I feel certain they can for most of us. I realize a four-year path may seem unthinkably long and protracted for some of you, and I know some have been able to walk a quicker path to overall physical and mental health than we have. But quite honestly, I'm so proud and happy in the present, and thinking of his future, that I find I don't regret those years. They've become a part of who he is and who we are as a family, and I know we're all stronger and more compassionate for it. Thanks again to you all, and much light and love to everyone and their kids!

To whatever extent the comparison might be helpful . . . my DS is an undermethylator, also. Very high in histamine and so responds well to quercitin, zyrtec and/or Pepcid. Also, B6 and zinc seem to help him a lot; we tried methyl B12 for a bit, and like you, he just got more agitated, rather than less, but the B6 seems to be more than just helpful -- it's necessary. We tried cutting back at one point, and he did not do well. He's taking 2,000 mg. of B6 daily. We also think (though have not tested) that DS tends toward pyroluria. This is a fairly simplified chart that was circulated here many moons ago, but it was our introduction to methylation and gave us some basic ideas about what might work to help DS versus what might not be beneficial. http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes As for lamictal, it has been very helpful for DS and we've attributed some of that, rightly or wrongly, to its glutamate modulating properties. We did begin it very low and tritrated very slowly, but the initial response on a low dose was very good and has remained good since.

Hey Ophelia -- I know you've been exploring a lot of different things . . . have you ever had genetic testing done or investigated methylation? If what some of the responses show is true . . . that a "lopsided" methylation cycle caused by a gene mutation can make a person more sensitive to this and/or less sensitive to that . . . perhaps supplementing the cycle appropriately would help you (and Cyberdog) respond more classically to medical and psychological interventions? It's a complicated subject, but also one that some people have really been able to make headway with. LLM, in particular, is a bit of a home-grown "expert" on the topic! Keep fighting the good fight!

If you perform a Search on the PANDAS forum here, you'll find some previous threads about NAC and how it works for some and doesn't for others (activating). For the most part, I think what we've come to infer is that the difference in response to NAC may be in methylation issues. Have you ever looked into genetic testing and/or methylation?

So sorry, Cyberdog! I was hoping the Riluzole would be a key for you! If you've spoken to the folks affiliated with the trial, I unfortunately don't have any other ideas for you to that end. Not sure who you spoke or corresponded with, but was it Michael Grant? I was under the impression that he has a position within the NIMH, rather than at Yale, but I might have that wrong. He's the one I corresponded with a couple of years ago regarding this trial. So if you haven't talked with him, he might be a possibility. I would try the lower dosage, too. I mean, what do you have to lose at this point? And if you have an established history of sensistivity, then perhaps you're dead on in that regard. My fingers remain crossed for you! Keep us in the loop!

DeeDee -- I'm with LLM on the ERP for perfectionism/failure. It truly does sound rife with OCD to me. Just a little more experience/color on the OCD and high school, too. We've had to have LOTS of discussions at home and some therapy sessions, as well, with our DS about how much of the information that's conveyed at school is, by design, aimed at the "lowest common denominator." That the health classes, drivers ed, college guidance, etc. use a lot of "Never"s and "Must"s and hyperbole because they're trying to get through the thickest of skulls (the "average" teenage boy/girl). That these cirriculums, assemblies, teacher instructions, etc. are not designed specifically for DS, and he has to learn how to extract the reality from each, rather than being such a literalist. Does your DS have a 504 or an IEP? What we've also found to be helpful . . . because it's more proximate and "in the moment" for DS, is that his IEP gives him access to a school psychologist. So he doesn't have to come home and take DH's or my word for it, or his therapist's word for it, that when his chemistry teacher said this test will make or break his course grade, that's not entirely true. The school psychologist is on site, knows DS, knows his teachers and can help DS tweeze out the nuggets that he needs and set the other, unhelpfull stuff aside. I'm so sorry you and your DS are going through this, but you're right in that his willingness to share his feelings with you so openly is a gift in the midst of this temporary madness. You're a great mom, and he's a great kid and you guys will get through this!

So sorry to hear this DeeDee! We've had moments as you've described . . . heartbreaking sobbing from our 14, 15, 16yo DS, and it is so hard to stand by and feel helpless! We weaned our DS off Lexapro almost 4 years ago now and having been through that process, I will tell you that I don't think your average psych has any idea how coming off of these substances feels and/or impacts a person. They read the literature and they say, "Oh, there's very little issues with weaning off" this one or that one, but they are almost always wrong. If I had it to do over again, I would wean our DS off the Lexapro very, very slowly as I truly think that this too-abrupt chemical change combined with strep to push our DS over the edge all those years ago. So now, I would take whatever the psych/doc recommends, and divide it in half, literally. So if they say titrate down 5 mg. for three days, and then down another 2.5 mg. for the next three days, I would titrate down 2.5 mg. for twice as long -- a full week -- before I titrated down again. When our DS went through that weaning, he was still too immature and, quite frankly, too crazed by antibodies/inflammation to communicate to us what the external chemical changes were doing to how he was feeling, but it sounds as though your DS has the skills and the ability to communicate with you about that. I would follow his lead. I have another family member who was weaned off another SSRI (not Lexapro), and the doctor once again tried to "speed-read" him through the process. He wound up having such horrible side effects from the weaning, however (nightmares, vertigo, bursts of uncontrollable emotion) that he decided on his own to titrate more incrementally and more slowly. It still wasn't smooth going, but taking it on his own schedule was, in the end, far better a process than doing it on the doc's calendar. I read a biography once by a writer mom who's son was diagnosed PDD-NOS when he was quite young . . . 4 or 5. The doctors prescribed a whole host of medications, including SSRIs and ADHD stuff, to try and help modify the boy's behavior in academic settings, etc. This mom refused to give him anything until she had tried it herself, to see what it felt like in her own mind. I often think that psychs should be required to do something along the same lines before prescribing to us or our kids and opining, sometimes quite blithely, about how there are no real side effects, or ceasing the medication will not cause any issues, etc. I mean, really! How would they know?!?! I'd also like to suggest that if you have a good friend with a "normal" kid around your DS's age, it might help you to compare some notes with her about the emerging teenage behaviors. For a long time, I attributed most everything to DS's PANDAS or anxiety, and then I started comparing notes with some of his friends' moms. Apparently, even among teenage boys, outbursts, sobbing jags, alienation, despondency . . . not protracted but on occasion, can be part of the equation, especially for the brighter, more sensitive kids. That's not to say that your son's depression should be minimized, but only to suggest that maybe at least a little bit of it is being contributed by hormones and the life stage, and then perhaps exacerbated by brain chemistry or illness? Hang in there!

I'm so sorry! That stinks! Not to insult anyone here who might be affiliated with health insurance companies, but I despise them all. Not equally, necessarily, but despise them all nonetheless. Profit should not be in the equation when it comes to healthcare, and that's all these companies care about. They're not in business for our benefit (much as their PR departments would say otherwise), and they're not in business for the benefit of our providers, either. They answer to their boards and their stockholders. It is a stupid system, rife with conflicts of interest. Sorry for the rant, but stories like yours are way too frequent.

Powerful, beautiful, resonant . . . http://www.wimp.com/bypoet/

There's increasing evidence that PANDAS is not limited to pediatrics. So, yes, by all means, go get a culture. But I wouldn't even stop there, especially if you have no current classic signs of infection (sore throat, fever, etc.). My son was entirely classically asymptomatic -- only had psychiatric symptoms (OCD, anxiety, etc.). Cultures always came back negative. But then we got blood tests for antibodies (ASO and anti-dnase B ), and his levels were very highly elevated. These days, savvy docs will tell you it's not how high the levels are, but which direction they move subsequent to exposure or antibiotic treatment. Still, should your antibody levels be significantly elevated, that may be sufficient evidence to get you an antibiotic trial, and then you can take it from there. Good luck!