MomWithOCDSon

It sounds like some impulse control issues, which might be part of an executive functioning dysfunction, or these behaviors might be his attempt to disperse his anxiety and/or discomfort while in the school environment. I believe I've seen your posts on some of the other forums here (PANDAS? OCD?), and some of these attention-deficit issues are frequently a comorbid condition with either PANDAS or OCD or both. You're getting some help for the primary condition, correct? Assuming so, some, if not all, of these attention-deficit behaviors should subside as the treatment takes hold. You might also try adding some zinc to your DS's supplements as it has been studied for its positive impacts with respect to attention issues and we, as well as some other families here, have found it to be helpful. Good luck!

Hi Unsprung! The whole "making sure the disability office was readily accessible and proactive" was a piece of advice we got from an educational consultant at an ICODF conference a couple of years before DS was ready for college. She led a great session about the college selection process (geared toward kids with OCD and anxiety disorders, but we found it to be pertinent pretty much across the board with respect to PANDAs, also), and this was one point she stressed. She cautioned that, for some schools, even having a Disability Office is something of an afterthought, and it might be stuck in some far-off corner of the campus with only part-time personnel, etc. So, yes, we investigated that by visiting the campuses, by asking the question(s), by scheduling an appointment with the Disability Office in advance so that we could stop by, meet the director of that office, etc. Finding out what the hours of the office were, who would be DS's "go-to" person should he need assistance, how to go about securing necessary accommodations (if any), how DS could reach someone (email? phone? appointment only?). I'm delighted to report that my DS is now finishing the first semester of his sophomore year, and he is doing GREAT! To be honest, we never could've dreamed of this level of happiness and success for him when he was in the throes of PANDAS, but he has really come into his own in the last couple of years. His PANDAS symptoms have pretty much entirely subsided, and though he still has access to some accommodations (reasonable extensions on projects/assessments, assessments in an alternative environment, private dorm room), the only one he still takes advantage of is the private dorm room, as he still values that privacy and opportunity to occasionally regroup in his own space. Also, by virtue of being registered with the disability office, he and other students similarly registered are afforded early registration for classes each semester -- about 5 days before the rest of the population can register; that's been great, too, because he's been able to be more selective about his classes and professors than might otherwise be the case. The disability office has been helpful, particularly early on, contacting his professors to make them aware of his accommodations, etc., though he has admitted he doesn't really turn to those personnel much anymore these days as he doesn't feel he needs the added assistance. DS is thriving, and because I think the key was getting him into college, and keeping him there long enough to find his "groove" and his "tribe," I do think the initial selection and the involvement of the disability office and the accommodations were key. Thankfully, as our kids do many things, he seems to be outgrowing his need for those things now as he's pretty much fully settled in, but had we not had them to begin with, I fear he may not have been able to stick it out through the transition to find this "happy place" he's now in. Really, this session at the IOCDF conference and my own, well-honed "helicopter parenting" skills through the junior high and high school PANDAS years are what I had to go on in terms of DS's collection selection guidance. Another thing that the consultant stressed in that session was to be wary of, in general, the high-pressure, competitive schools because even though our kids tend to be good students, many times even academically gifted, those environments don't tend to be very supportive of kids who may hit rough patches or need accommodations. And then the kid's sense of failure that may develop in that kind of environment can lead to a level of self-recrimination and lack of confidence overall. That's one reason we sort of steered our DS away from schools like MIT, even though he likely could have gotten in, at least for his first year. He can always transfer if he comes to find he needs something more challenging, or he can save the bigger name school for his graduate school studies. I've got the handout/slide print-outs from that IOCDF conference session around here somewhere. If you'd like me to send you a copy of it, feel free to PM me with an email address, and I'll dig them up for you. All the best!

DC24 -- You will likely get varying opinions as to whether to hang on with medical treatment, therapy and supplements and avoid "psych meds," including SSRIs, or whether to add an SSRI to your treatment regimen, if even only for a period of time. In the end, it is a very personal decision, and one you'll probably want to make in concert with your care team and your family. Some people think that adding psych meds/SSRIs to the mix can "muddy" the diagnostic picture as to how effective your medical interventions are. Others have concerns about the impact of psych meds on the brain chemistry, period, and feel that effective medical treatment, therapy and/or supplementation should successfully address all those needs, provided they're the correct interventions. Because my DS was diagnosed with "regular OCD" before we successfully secured a PANDAs diagnosis, and he had been in therapy and taking a low-dose SSRI for a few years before PANDAs treatment, I come to it with a slightly different perspective than perhaps more typical PANDAs families. I know what my son's quality of life was before SSRIs, and I know what it became after implementing an SSRI, and I wouldn't trade the positive impacts the SSRI brought to the table for anything. When we didn't know it was PANDAS initially, the SSRI largely gave him back a functionality he lost suddenly over the course of a couple of months in second grade; he forgot how to read, was anxious all the time, huge separate anxiety, etc. Even though we couldn't prove PANDAs and thus couldn't get anyone in our area at the time to give him medical treatment, the psych prescribed an SSRI and, out of some level of desperation, we accepted it. Knowing now what I do about PANDAS, I'm sure there was a measure of medical healing that played into things as well, but within about 3 months of starting the SSRI, the worst of his anxiety/OCD behaviors had evaporated and he stayed well, happy and functional for nearly another 5 years, until another round of strep and the PANDAs exacerbation to end all exacerbations. When he got very sick and dysfunctional due to anxiety and OCD several years later, we transitioned from one SSRI to another, chiefly because our psych at the time thought that the first SSRI had "burned out" and had ceased to be effective. Finally getting a PANDAS diagnosis and medical intervention (Augmentin), we came to realize he needed more than just an SSRI to return to himself, but we didn't take the SSRI away initially because we wanted to change as few things at the same time as possible. But especially once we'd finished with antibiotics, we came to realize that the SSRI was/is supporting his overall mental balance, supporting his mood and giving him leverage over the obsessive thinking that he can slip into, especially under stress. So, all that's to say, it really depends on the person and the circumstances. Plus, an SSRI is not, by any means, a "quick fix." While my DS and some other family members of mine have been able to feel the impacts of an SSRI within a few days, they generally don't achieve full efficacy for 4 to 6 weeks. In our case, it has been an important and beneficial component, though others will have contrary stories to share. Sorry the answer isn't clearer, but wishing you the best in your healing. Glad some of your concerns are responding well to treatment thus far!

Just in support of Suzanne's note, my DS's college actually has a disability program specifically geared toward Asperger's students (at an engineering school -- can you imagine!?! ) In addition to appropriate accommodations, they will set up a peer mentor system so that the kids don't isolate, get behind in coursework, etc. And this is a "regular" 4-year, private university. So these supportive set-ups DO exist, even if they may be somewhat unique.

Louisa -- Unfortunately, I don't remember the specific reason our psych felt anafranil was not appropriate for our DS, specifically. What does Genomind say about anafranil for your DS? Our psych is a big fan of Genomind and uses it to guide her treatment frequently, particularly in cases with patients who appear to be treatment-resistant. Our DS never had the Genomind as it has come along more recently, and her treatment regimen of Zoloft and Lamictal, without the benefit of genetic testing, seems to have been right on point. She's come to using it more recently, however. I came to the supplements we use with him by a variety of sources, including the PANDAs forum here. But one main source was Dr. Carl Pfeiffer's Biochemical Subtypes matrix which lays out, in very easy terms for the not-so-medically-inclined, what supplements and interventions are likely to be beneficial or contra-indicated for the under-methylated (histadelia or high histamine) or over-methylated (histapenia or low histamine), as well as conditions such as pyroluria, high copper, etc. It may be that, given my DS's presentation, behaviors, thinking/processing, etc., the psych took similar clues as to the anafranil not being appropriate for him. I know it impacts both serotonin and dopamine receptors, while Zoloft doesn't have an affinity for dopamine receptors. So, perhaps that's the difference? My DS has always had a high histamine response -- eczema, seasonal allergies, acid reflux, etc. And the matrix also places OCD under the under-methylated/high histamine column. So it all seemed to add up. Beneficial supplements for this condition, according to Pfeiffer, include B6, zinc, omega 3's and a few others. The NAC I added because of discussions and research shared on the PANDAs forum, including a Yale/NIMH study that used it to treat OCD. I tried sublingual B12 tablets with him, and they seemed to make his panic worse, so I stopped and decided to keep B12 out of his regimen. I started my DS out on 600 mg. of B6 per day initially, and we worked up to the 1,200 mg in the morning and 600 mg. in the evening over the course of a couple of months. It's hard for me to separate the impact of each medicine and/or supplement very specifically, especially something like the B6. But he slowly improved over time, and the B6 seemed to continue to support him over the next few years. The dosage, as I recall, same from some research similar to the NAC dosage coming from the Yale/NIMH study, but I can't seem to lay my hands on the B6 research at the moment. I have a massive library, but I unfortunately failed to label things as clearly as I should have. I will also say that lamictal was, at my DS's worst point, life-changing for him. It didn't impact the OCD directly, but what it did do was give him greater objectivity about it. Once the lamictal kicked in, the rituals and obsessions no longer had the power to drive him to melt down or fall apart if they were interrupted, or when he tried to take more control of his choices and options himself. It gave him a lot of leverage against the "being stuck" OCD can create and helped him get on with what needed to be done. Let me know if you're interested in the Pfeiffer matrix and don't already have it or cannot find it on-line. You can always PM me with an email address, and I'll send it to you, in that case. All the best.

I feel your pain, as we were in much the same place a couple of years ago. Fortunately for us, PANDAs hit our DS hardest when he was 12-13, so by the time he got to his junior and senior years of high school, his executive functioning and attention skills had improved/healed considerably, though he still needed a level of daily support and coaching. Following the PANDAs diagnosis, as we worked to get him back into school full-time, we were able to secure an IEP for him which, like a 504 Plan, gave him some accommodations with respect to workload, homework, assessments, etc., but additionally gave him access to a resource teacher and regular private and/or group sessions with the school psychologist to help him navigate remaining challenges in the school environment and build self-management skills. Have you tried zinc for the attention issues? We found it helped our DS more than any ADHD med ever did. College. First, you know your kid better than any of your friends or relatives, so I think you have to hold fast to your gut and do what you can to tune out their well-meaning, but potentially disastrous, advice. If you're not seeing signs of your DS effectively managing his needs at home, expecting him to just "step up to the plate" in an entirely new environment, without the daily supports you and your family give him, is likely a bit of a pipe-dream. Personally, I think your plan to apply to local schools and therefore have some flexibility as to whether or not he lives at home for the first couple of semesters and commutes to school, or go ahead and pack him off for the dorm, provided he shows signs of being able to manage that, is a good one. It gives everyone involved a sort of safety-net while also driving the ball down the field. While, in the end, a gap year may prove to be medically necessary, you do run the risk with that, I think, of halting any momentum you've been working to build up to this point. And it may be harder to restart it than it is to keep it rolling, if even only at a nominal pace. I think you'll be hard pressed to find ANY colleges -- in NY or elsewhere -- that understand or have a plan for dealing with PANDAs. That being said, there ARE schools with disability departments knowledgeable about a lot of the PANDAS-related behavior sets such as anxiety, OCD, processing differences (including executive functioning), ASD, etc. The only way you're going to know what these disability offices are prepared for, however, will be to make appointments while you're touring the campus and meet with/talk to someone in the department. While IEP's (and 504's, I think) don't technically transfer into a college setting, many college disability departments will accept high school plan paperwork and documentation and, to the extent possible, continue on those accommodations and supports on campus. My DS's college, for instance, took his IEP documentation and agreed that: 1) the disability office would contact each of his professors to let them know that DS may need reasonable extensions from time to time, and 2) may choose to take his assessments in an alternate (quiet, private) environment. The disability office also helped us to apply and be approved for a private dorm room so that DS would have one less stressor (dealing with a roommate). I don't know about an educational consultant in NY necessarily, but we attended a session at an IOCDF conference a few years ago about the college application and selection process for kids with anxiety/OCD, led by an educational consultant. She was excellent and gave us a lot of good ideas. It might take me a little time to dig it up, but I still have the hand-out (and her name) somewhere around here. If you think that might be useful, drop me a PM with an email address, and I'll dig that up and send it over to you. In the end, the college transition isn't easy, but it was doable for our DS. We limited his search to schools that were within a reasonable drive-time from home, so that we could get to him, and he could get to us. We limited it to schools that had a reasonable teacher:student ratio so that he wouldn't be in a ton (if any) classes that were survey-style in auditoriums with 100-200 students and a single professor. We met with the disability offices and talked over what accommodations and supports they would actively provide or pursue. We got him a private dorm room (one such accommodation that required a letter from his doctor) so that he would have a "safe haven" to escape to or even melt down in, if necessary, at the end of a long day. The first few weeks were tough. We had some tearful phone calls and FaceTime sessions. On at least two occasions, he even said, "I don't think I can do this." But we employed a little tough love. On top of encouragement and helping him think through solutions to some of his tougher moments, we also made sure he knew what the options were, i.e., if he threw the towel in on college so quickly, he'd be coming home to a different kind of lifestyle. He'd need to get a job and enroll for at least part-time classes at the local community college. There would be expectations. There would be rules. It wouldn't be a stress-free, free ride, even if he was "safe," at home. And this is that critical point at which they can, and usually do (I hope) "step up to the plate." Our DS did. Things got incrementally better for him week by week. So much so that, by the holiday break, he couldn't wait for the second semester to start up again so that he could go back to school and hang out with his friends, talk to his professors, etc. He continues to gain life skills for managing in less than ideal circumstances, and he's actually happy and highly successful now in his sophomore year. All the best to you. Take care!

In our experience, zinc and B6 are great supplements for combatting anxiety, so I would think you'll see some boost there soon via that. How much B6 is your DS taking? Ours took 1,200 mg in the morning and another 600 mg at night initially, though he has scaled back some in the last year or so to no ill effects. We tried zyprexa and didn't like it for a host of reasons. In our experience, though they are being used more and more frequently for a "quicker fix" for anxiety than SSRIs may provide, these heavy-hitter antipsychotics are not a proper (especially in the long-term) intervention for anxiety/OCD. I think Dr. Greenblatt's reduction plan on this (and hopefully elimination eventually) is great. Both my DS and another "non-PANDAs" family member suffer from anxiety/OCD, and antipsychotics (zyprexa, abilify, Seroquel, etc.) have not proven to be effective and, rather, unfortunately, have tended to take things the other, less positive, direction. Our original psych, when things got back with our DS several years ago and the psych couldn't seem to find an effective med, put him on anafranil. It was not the right medication for him. When we changed psychs and found our current one, she said anafranil was contra-indicated for a kid like our DS and was precisely the WRONG medication for him. I don't know about adding Prozac on top of the Zoloft as I've never seen this strategy employed unless the patient was going to be transitioned from one SSRI to another. Is it the case that your DS has been on Zoloft for an extended period, and so it possibly has ceased to have the effectiveness it once did? SSRIs do have a reputation for "burning out" over time. My family members have responded very positively to both Prozac and Zoloft, though not at the same time. My only concern would be potential for serotonin syndrome, in the event inadequate serotonin is NOT at the root of your DS's increased OCD of late, and the Prozac just increases serotonin levels beyond what's beneficial. I think it's still something of a mystery why certain meds work for certain people, and don't work or even seem harmful for others. That's why these genetic tests like GenoMind are getting increased marketshare, I think, as they're supposed to help identify meds that are best for your particular situation. I will say, though, too, that my DS and yours sound somewhat similar (pylouria, OCD, some of the same compulsion sets, like a necessary routine/ritual that threatened at one point to make him late for everything in his life!), and here's what my DS took that worked well for him: Zoloft, Lamictal, B6, NAC, zinc, D3, evening primrose oil, probiotics (mixed strain), quercitin. All the best!

Josyjoy -- It sounds to me as though there might be more than OCD going on here. You've posted here on the OCD forum, but the verbal compulsions sound as though they may be tics, and you mention probiotics, but not what has led you to give your son these on a regular basis. Are you familiar with PANDAS/PANs, or have you been on that forum previously? With both OCD and tic-like manifestations, I would consider the possibility that your son might have PANDAS or PANs. Also, mostly via exchanges on the PANDAS forum here (you can perform a search for "probiotics" there), it seems kids react differently to different strains; some kids do well with saccharomyces boulardi, for instance, and some do not. Any chance you can find (maybe on-line) a full list of the strains in the previous version of your brand and compare it to the current list? Perhaps there's a new strain or two in the more recent version that is not beneficial to your son. PANDAS is associated with strep, and there are strep-based probiotic bacterium that are included in some brands; doctors are not in concensus as to whether or not strep in a probiotic supplement is detrimental to kids with PANDAs, but, just to be on the safe side, many PANDAs families avoid them nonetheless. If you can share more of your son's history (when his OCD first appeared, any other notable events, illnesses, etc.), perhaps we can give some more specific feedback. Good luck!

Wombat -- Mental Floss is actually a monthly magazine. You can subscribe for either a paper or digital version, and their stuff is always cool. From trivia to long, investigatory pieces, I really enjoy it.

National Institute of Allergy and Infections Disease have published a new study: http://www.mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases

From our experience, maturation -- both physical (immune system) and mental/emotional -- can bring a lot of good things to the party. Especially if you have the supportive relationships and therapeutic techniques and tools in place to help along the way. Quannie, I really appreciate your "carry a cross of some kind," as it resonates deeply with me. Most families struggle with something at some point -- chronic illness, addiction, dysfunction, financial challenges, etc. I've often thought that, while my DS had a horrible couple of years that really tested all of us, I'm grateful that he remains, at his core, kind, gentle, thoughtful, bright, compassionate, loving and resilient. And all of those best qualities have "rubbed off" on the family, to some extent, making us stronger in the end. Maybe the heavier the cross, the stronger one becomes! All the best!

Re. GeneSight . . . There's another one of these genetic tests called GenoMind which is focused upon neurotransmitters and other brain-oriented genetic activity. It has to be ordered by a doctor, and the cost is generally not covered by insurance. We had several conversations with the folks at GenoMind as to our costs/liability, and the bottom line they told us was $300, although it is a $5,000 test. Supposedly, they are very aggressive with the insurance companies and handle all of that haggling on their end, but if all else fails, the most they'll bill the patient back for is $300. Unfortunately, we couldn't get them to put that in writing (said they can't do that because it might be construed as "advertising"), and our DS was doing well on his current regimen, so we didn't do it in the end. That said, I love the idea of testing for this purpose, and I'm glad to hear about another option to GenoMind as I think competition will go some way toward keeping the costs down. Good luck!

I certainly agree with caution, but not unlike kakrpa, I feel certain that the RIGHT psych meds, in the RIGHT dosages were key to my DS's recovery, along with the abx, supplements and therapeutic interventions he partook in, as well. I will say, anecdotally from reading this forum for many years, as combined with personal experience not only with my DS but another non-PANDAs family member, that I would be particularly wary of the sort of anti-psychotics that some docs are prescribing our kids (risperadal, abilify, zyprexa, etc.) as they seem to increase -- rather than help diminish -- anxiety and the behaviors that are borne of that anxiety. I think perhaps the docs sometimes reach for these because they are typically quicker-acting than general first-line anxiety meds like SSRIs, and by the time families agree to taking this step, they're generally after some quick relief. And particularly when a child is described as "raging" or "aggressive," they may turn to these heavier hammer anti-psychotics because they have a tranquilizing quality to them, as well. But similar to KLW's experience, we had nothing but bad results from this class of drugs. On the other hand, Zoloft (SSRI) did nothing but positive things for my DS, and my other family member, who's anxiety was controlled well for several years via Prozac before it ceased to be effective any longer, is now experiencing success with Pristique (SRNI). With my DS, we also found that lamictal was helpful in that it made him a bit less emotionally explosive and gave him more objectivity in those moments of high anxiety, i.e., he was able to examine his situation without getting so overwrought about it that he'd melt down instead of problem-solve. Of course, the tough thing about SSRIs is that they typically take up to 4 to 6 weeks to come to full effectiveness, and because our kids tend to be especially sensitive, we start with very low doses to begin with. All of that can drag out the positive impact time line, unfortunately. But my DS showed some improvement in mood and lighter anxiety within about 3 days of having started Zoloft, so I know it can, at least sometimes, have an impact sooner than is typically noted. Hang in there, and all the best. Try not to look at it as a "surrender." Quality of life matters, so doing what you can to help improve that for all of you is, IMHO, a worthy step.

401Dave -- I know a couple of families who've gone through plasmapheresis, but I don't have direct experience with it. I saw your other post, so hopefully some others who've actually had that procedure will speak up. Also, you might consider making a sort of "introductory post," if you haven't already (I can't recall having seen one) to tell folks on the forum about yourself and your history with PANDAs. There might be some other worthwhile interventions that others have used successfully and could speak to that would fit your circumstances, as well.

My DS had persistent acid reflux, particularly during the thick of his PANDAs. This can be a sign that your histamine levels are particularly high. High histamine in the gut can contribute to reflux, and high histamine in the brain can contribute to anxiety and "fight or flight" sort of feelings. You might try a Pepcid (a histamine receptor blocker) and see if that helps both the physical and mental symptoms? It did for our DS (he took a maximum strength -- 20 mg. -- during the tough days). If you find it helps and you decide to take it for some duration, though, make sure you use some probiotics to repair the gut flora that lower histamine levels can contribute to an imbalance of. Good luck!

Smarty -- Are these 504 accommodations, or does he have an IEP? I ask because it's my understanding that, with an IEP, there ARE no attendance requirements, so missing additional days shouldn't be an issue so long as he keeps up with the work and assessments as provided for within the ancillary accommodations. For a 504, maybe something like "additional absences, as necessary due to health issues, to be permitted providing notification of such to school and rescheduling of any missed assessments" . . . ? Crossed fingers!

If you are truly "obsessively" worrying, I would tend to categorize that as OCD, given the "obsessive" part of it. Not to mention, obsessive thinking seems to be a very common manifestation of OCD, particularly for older, adult sufferers as your intellect provides more vulnerable fodder for the OCD beast to exploit. That being said, and OCD manifestation or behavior doesn't rule out PANDAS/PANS. Personally, I'm of the opinion that, 20 years from now, there will be little, if any, distinction between "regular OCD" and PANDAS/PANS or OCD behaviors born of immune dysfunction or other biochemical processes. In other words, I think all the existing "regular OCD" diagnoses that have been handed out willy-nilly over the last couple of decades are probably mis-diagnoses. Or at least a failure on the part of the "experts" to dig into the root cause of the disorder, rather than just label it, medicate it and move on. Such was my son's story. Given your history with strep, I would definitely suspect a bacterial/immune genesis of your disorder. I would pursue all medical avenues, while also availing yourself of the therapeutic resources (CBT/ERP) available to you to help keep the OCD compulsions and obsessions in check as you search for and deal with the medical root of your current concerns. Good luck!

There's quite a bit of evidence that the "P" for "pediatric" in the PANDAS/PANS acronym is a misnomer . . . that people of all ages can suffer from the auto-immune response to strep and other bacterium. It sounds to me, based on your reaction (or lack thereof) to the amoxicillin that it is not an effective antibiotic for you, and given all of the other "infection sites" beyond the positive strep tests, you might have something besides strep going on? Any other testing done at this point, such as an immune panel to see if your IgG and/or IgA results are in the normal range? For my DS, amoxicillin wasn't a strong enough response for him when the PANDAS hit hard at age 12 (he was technically adult-sized, though, at 90+ pounds at the time), even though the only culprit we could discern in his case was strep. What we found to be effective for him was 1,000 mg. Augmentin XR (extended release amoxicillin plus clavulanic acid), twice daily. But I know many other suffers here have had success with other antibiotics, including Keflex, Cednifir, azithromycin, Bactrim, etc. All the best to you! Hopefully some other folks will chime in soon!

Found it! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2786037/

Does anyone here have any experience with Brintellix or Trintellix, and, if so, can you share it? I have a family member (not my DS) who has experienced a recent lack of efficacy with an SSRI (Prozac) they've been taking for a couple of years, and the doctor is now suggesting this medication. Would really appreciate any feedback! Thanks!

Great news, Rachel! Congrats!

Once my DS reached full-on teenage-hood, we had to find some new therapy tactics for him, as well, as he could pretty much find the hole in any argument within a CBT or even ERP exercise. We ultimately settled on ACT -- Acceptance and Commitment Therapy -- for the last 1.5 years or so of his therapy. It really did seem to suit his way of thinking/reasoning and helped him to move past some of the negative self-assessment tendencies. https://contextualscience.org/act All the best!

So sorry you guys are dealing with this! I wish I had more ideas for you, but it sounds as though you've tried the things that helped us (lamictal, zinc, taurine). And I have to say that, no, we didn't experience this pattern. The short-term memory deficit was profound at the height of his illness, but once he began to heal, that began to mend itself alongside all the other behavioral/psych issues. And even though he would regress occasionally in terms of OCD behaviors and anxiety, the memory issue really never resurfaced in any substantive way. I will attest, however, that when anxiety is very high, short-term memory during that anxiety period, is nearly entirely absent. But, in our case, it seems to be only that memory is entirely supplanted by anxiety in the brain . . . that he doesn't "record" anything because all of those synapses are dedicated to the anxiety itself. But once that anxious moment or period is past, memory function is instantaneously back. But your DS is not excessively "ramped up" in terms of overall anxiety? He can manage himself moderately well, but the memory issues persist? The only other thing I can think of is to maybe see if something like memantine might help?

I had a paper a few years ago regarding the link between strep and narcolepsy, but I looked just now and couldn't readily locate it in my archives. But that's to say, yes, I think that this link has been out there for a while.

Looks as though this thread got resurrected somewhat recently! Love to hear some feedback if anyone has found some sort of "customized" multivitamin company that's reliable, good quality and reasonably affordable? We were having a custom vitamin compounded by a company for a while that included all the supplements that my DS benefits from, and excluding those that do not suit him (B12, for instance, seems to be included in fairly copious amounts in nearly every commercially-available multivitamin, but because my DS is anxiety prone and high in histamine, it tends to do him a disservice); however, unfortunately, this company went out of business "because of new FDA regulations which rendered their services and products no longer financially feasible to produce," so they said. So, for the last year or so, we've been back to the half-dozen+ of individual bottles of supplements, and it's a drag! Any suggestions greatly appreciated! Thanks!