MomWithOCDSon

StillHopeful -- We were in a very similar spot to yours 3 years ago; DS could not attend school and had some homebound instruction, but he truly couldn't focus on anything or work without freaking out for more than 20 to 30 minutes at a time during the worst of it. He, too, felt most comfortable and at peace at his computer, playing games or just messing around. So we took to interspersing school work and computer time, breaking the work into manageable pieces. But even then, he of course fell behind in terms of the school work. He was also 12 and in 7th grade, and after having been in the gifted program for the last 3 years, we weren't sure he would even be able to move on to 8th grade with the rest of his class. Now, here's the good news. Once we got his medical condition under control, he caught up and then some. Our kids are so bright and so anxious to do well, once we get the inflammation under control and they can regain organized use of their brains for longer and longer periods at a time, they make up for lost time and material very quickly! So try not to get too hung up on the school/education piece of the puzzle at present. I know it's hard because the capable student you used to know seems to have exited the building. But when you get the condition under better control, he'll be back, even if only for short intervals at first. Put your focus on solving the puzzle and getting some real medical intervention for him. I will say, in our case, Abilify made our DS worse (activated him), so you might want to keep an eye on that. In the meantime, I would suggest doing just enough school work to keep his head in the game some, increasing the amount of work he's taking on according to how well he can handle it. While you don't want to exacerbate any feelings he may have of failing at the school work or getting too far behind, you also don't want him to entirely forget what it's like to contend with some academics, and since success can breed success, conquering small pieces along the way will help him. Hang in there!

All the best to you, Cyberdog, and try to hang in there and not get too discouraged. I hope that, even though you're an adult now and making your own decisions, you've got some support among friends and family while you try to regain your balance here. This ACN "family," however, has been a world of cyber-support for me and my family, so if you take advantage of it, you'll find lots of cyber-hugs, ideas, research links, etc. here, as well. The newer and ongoing research on antibiotics and mental health is pretty compelling, with beta-lactams being researched in conjunction with major depression, schizophrenia and even autism. They're using an old tuberculosis antibiotic -- d-cycloserine -- in conjunction with ERP therapy for OCD. If your integrative doctor needs any research to back up a trial, he should be able to find it fairly easily. Good luck!

I just purchased the book and downloaded it onto my e-reader. I plan to start it tonight, and though I missed the "Fresh Air," I'm going to download the podcast and listen to it, as well. Based on what you guys have heard already, it seems like we might want to reach out to this author and/or her doctor . . . I'm intrigued, inspired and encouraged.

DeeDee -- It sounds as though your DD might be dealing with some level of Sensory Integration Disorder (SID); maybe it's transitory and attached to her PANDAS/PANS, or it might be part of who she is. I agree that "The Out-of-Sync Child" is a great read; we had several "aha" moments ourselves, reading that in the days in which we were desperately searching for what was up with DS, pre-PANDAS. We actually had him evaluated by an OT group, too, and took him there for therapy a few times, but he hated it and we didn't see much gain because he was so resistent. We never/still don't get complaints that things "hurt," but despite overall good physical and mental health, DS continues to be "picky," especially about clothing. One brand of socks for the last 5 years . . . no other brand, no other size, even though his feet have grown at least 7 sizes in that time! Tagless everything . . . t-shirts, underwear; at least those are easy to find these days! One pair of shoes for all occasions and at one time -- usually Merrill's or Eco's because, legitmately, he has a strangely-shaped foot with a toe box the size of a rhino matched with a skinny, little heel. He wears the one pair 'til his toes are sticking out the front or all the tread starts to fall off, whichever comes first, and then we buy one new pair which he will again wear until they are no longer wearable. For years he wouldn't wear jeans . . . my DS was the George Costanza of elementary school, insisting on soft, fleecy sweat pants and shorts; Hanna Andersson saved him from constant ridicule because they make decent looking cargo styles without elastic at the ankles. By middle school, I'd talked him into soft, well-conditioned denim to the extent he would wear denim Scrubs, which also come in a cargo style and are very soft, with elastic and/or drawstring waists. I ordered him the "short" sizes and still cut 'em off and hemmed 'em, and took off the "Scrubs" tag on the back. Just a couple of years ago, he finally decided he could/would wear Dockers, khakis and even regular jeans, but he's still picky about the grade/weight of the denim and doesn't like a whole bunch of pockets that tend to bunch up and feel weird on the inside of the pants. Lots of times, I just cut the pockets out and sew up the openings (especially in the seats of pants). Now whether its just maturity or exposure over time or peer pressure, I see him getting more and more "normal" in this arena, so I'd think the chances are good that your DD will, also. Hang in there, and I agree that you should take at least one Pina Colada and then deal with this in the morning!

I forgot to mention a couple of other things regarding NAC, as well. Firstly, I would start pretty low on the dose and titer up slowly to the recommended dosage; if you go straight at a full dose, it is likely to cause intestinal distress. Also, when we first started NAC a couple of years ago, I recall reading/being told that it's important that you also give Vitamin C. I don't recall exactly why, and I'm looking for the reference in this regard but thus far haven't found it. I think it has something to do with the breakdown of the NAC in the system and successfully dealing with some by-product? I CAN tell you that a freshly opened bottle of the stuff smells somewhat "sulfurous," so maybe that's part of the issue? Just something to look into/check/ask your doctor about.

This just popped up in my Google alerts. Perhaps most helpful to some of us is another psychiatrist (her blog) with experience with (and a belief in) PANDAS/PANS. Max's Story

Smarty -- I'll look in my research library and see what I can find, though I am still a long way from understanding all this neurotransmitter stuff myself. Some things are precursors to other things, some things are agonists while others are antagonists . . . it all makes my head spin! Frankly, I think LLM understands this stuff far better than I do. Do you remember a thread not too long ago, along these same lines? I don't recall if it was specifically about NAC and why some kids respond well to it while some others respond poorly, but she hit upon a piece of the methylation cycle that might also play into how one's body responds to the introduction of some of these supplements. I remember being struck by how that might make sense in terms of some of the reactions we've all seen and/or read about. In a strictly KISS (keep it simple, Stupid) understanding of my own, I kind of boil it down to this: NAC is a precursor to glutathione. Glutathione, according to Dr. Perlmutter, improves the "efficiency of dopamine in the brain and also increases the sensitivity to dopamine and serotonin." So, if you/ your child already has enough dopamine and/or serotonin in the brain, then the addition of NAC or other agents that either increase levels or make them "more efficient" may result in activation/aggravation. It appears, in my DS's case, that he doesn't have excess serontonin given as he takes both a low-dose SSRI and NAC, both to his benefit. I think, however, that some of LLM's research might suggest that were we to be successful in adjusting his methylation, he might "naturally," without meds, better balance his serotonin/dopamine levels on his own. That the SSRI may be inhibiting him from doing just that. But how we get from "here" to "there" without grave risk in terms of quality of life? I'm just not sure. So we trudge on along our now well-worn path, for better or worse.

I've only heard of a couple of people here trying Namenda with their kids; if you searched and found any posts regarding it's use, then maybe you could try PM-ing some of the posters? One I specifically recall is Melanie, but her son, in addition to having PANDAS/PANS also is autistic, so I'm not sure that would be a ready comparison for you, either. Most of the discussion that I can recall has taken place on the PANDAS/PANs forum rather than this one, and many of them don't check in here very often, if at all. I'll also say, Lamictal hasn't actually diminished OCD in my son's case; what's it's done, however, is taken away his emotional "marriage" to the OCD, made it easier for him to look at the behaviors more objectively rather than feeling threatened when we (his parents), his therapist or even he himself try to get between him and a compulsion. It's made him more "rational" and less emotional about fighting back at it. I'm going to share with you one more anecdote, in the event you might decide to potentially go after an infection, even if you're not certain it's there or where it might be . . . . My son was diagnosed with OCD at 6, and he managed to be functional and happy with first just therapy alone, and then at 8.5 years, the addition of an SSRI (Lexapro). Then, at 12, it was like he fell off the edge of the world. His OCD became so bad and so intrusive that he couldn't leave his room; he spent most of his day curled up in the fetal position on the floor because anything and everything caused him distress. Anything and everything involved some elaborate ritual that zapped him of his time and strength. So he just gave up and did nothing. His psych kept trying different meds and different doses, but nothing seemd to help him, and some of them made him worse or just knocked him out (Zyprexa, Seroquel). We had to withdraw him from school. As an example of the grip of the OCD: He'd take a shower and, 30 seconds after he stepped out, start screaming about how he had to take another one immediately because he'd become contaminated when his hair brushed the sink countertop. It was surreal. He was classically asympotmatic for strep . . . never had a sore throat in his life, never had a positive strep culture. But I finally got someone to listen to me regarding PANDAS/PANS, and we started my son on Augmentin XR (1,000 mg., twice daily). Within 48 hours, after 4 doses, he was like a different kid. Not back to the way he'd been before he'd fallen so badly into the depths of his OCD, but still miles more functional than he'd been just 2 days before. He came out of his room. He ate dinner at the table with his dad and me for the first time in 3 months. Within another 3 months, he was back in school and climbing, daily, out of the hole he'd fallen into. And he was happy again. So, what I'm saying is, if you've tried the cavalcade of various psych meds to no avail, and "regular" doses of these meds seem to only intensify your activation/anxiety, if you could get a doctor to prescribe a beta-lactam antibiotic (there's research that suggests beta-lactam abx may be glutamate modulatory, too), would you try it? And see how you feel after, say, a week? I have a lot of research on the topic that you're welcome to, if you're interested. Just PM me. Sorry I'm not of more help with respect to the memantine . . . I'm sure it's worth a try, too. There're just so many things about your situation that resonate with what we've been through in the last 3 years, and I know you want relief. I hope you find it soon!

Yes, my DS takes NAC daily and has been for over 2 years now. He is "adult-sized," so he takes an adult dose as utilized in a trial conducted by the NIMH and Yale a few years back. There was also one conducted for kids, with a different dosage. He takes a total of 3,000 mg. per day: 1,800 in the morning and 1,200 at dinner. They're gelcaps, so they're not as big round as an M&M, but longer . . . sort of a typical gelcap size in my mind. We use the Vitamin Shoppe brand. In our case, it has helped mellow out some of the OCD. Just be aware, if your child by any chance takes another other dopamenergic or serotonergic meds or supplements (glutathione, SSRIs, inositol, GABA, etc.) that, because NAC works in the same "chain" of neurotransmitters and agents (it's a precursor for glutathione), that you'll need to watch your dosing of NAC. At least that's what our psych has told us. Otherwise, you might get an activation response. Here're the trial descriptions which we referenced for dosage: NAC for Pediatric OCD NAC for Adult OCD Good luck!

I don't get it all, either. I've just picked up on a few things that seem to add up for my DS and interventions seem to help him feel better. LLM is, I believe, our resident Parent Methylation Expert! Here's a previous thread she posted with some helpful information and links. Good luck! Methylation for Dummies

Sorry, we've not tried memantine/Namenda, though my son does benefit from two other glutamate-modulating meds: Lamictal and n-acetylceisteine (NAC). Many of us, however, have found that some of our kids are atypically sensitive to various psych meds, and some also respond poorly to NAC. Don't know if you've heard of PANDAS or PANS, but this is autoimmune disease that can result in neuropsychiatric behaviors such as OCD, ADD, ADHD, tics, general anxiety, etc. It is infection triggered (strep, walking pneumonia, Epstein Barr, lyme, etc.), and though it has been found most prevalently in kids (hence the "P" for "pediatric"), some adults have been identified with it, also. If you're interested/curious/think it might apply to you in any way, the PANDAS/PANS forum here has a ton of information. At any rate, PANDAS/PANS kids tend to be very sensitive to SSRIs and other medications, so that's one thing that comes to mind. Another piece of the puzzle that has contributed for some in terms of their response to meds/ability to process it properly is methylation, usually due to a gene mutation (MTHFR). I'm not very well versed on that, but, again, if you use the Search function here, you'll come up with some pretty good discussions about it, links to papers and web sites with additional information, etc. Ultimately, some of us have found that, yes, in very small amounts, psych meds can help even our most sensitive kids. But if you've had trouble with one after another of these classifications of meds and your OCD/ADD are still intrusive in terms of your daily life, there might be something else afoot that, if addressed, would improve your situation either with or without these meds. Good luck!

In our case, I would say it is less excitement and more anxiety. Those sorts of atypical situations . . . social, public, outside my DS's immediate control so he's not sure what might happen next . . . tend to induce anxiety, even when he's looking forward to it, excited by it, positive about it, etc. There's some research that suggests that anxiety itself can contribute to a more porous blood brain barrier, in which case that porosity could allow more antibodies through to the basal ganglia, and then you're in a cyclical situation whereby anxiety tends to induce more anxiety, etc. Maybe talk to your DS about the carnival and the birthday party . . . while you know he was happy and excited about them, was there anything that made him worry a little bit? Maybe he wasn't sure who else would be there, what he would/should do first, if there would be the type of food/cake he wanted there, etc.? Sometimes I think that we adults take some things for granted and forget how jazzed our kids can get over the fact, say, that they were expecting corn dogs on a stick, and all they could find were regular hot dogs!

Wow. I hadn't checked into this topic previously as I didn't really see anything that was applicable to my DS. But then a friend reminded me that her kids had been diagnosed with convergence insufficiency (CI), so I thought I'd read through this thread and see what it was all about. Thanks, especially, for the link to www.childrensvision.com. The examples posted there were very helpful in explaining to me how this condition manifests. Frankly, those examples combined with the mention of CI being frequently diagnosed along with various neurological disorders because of the basal ganglia connection . . . well, suddenly it all makes sense. These vision things really could be another piece of the inflamed/attacked basal ganglia puzzle, no? Another thing that struck me is that I have noticed some of these reading/vision differences in myself at times, particularly during allergy season or pre-migraine, as in, before I have any actual pain, dancing lights, etc. So, perhaps this is a condition that can/will set itself aright post-inflammation? But I suppose, like with some of the other behaviors (such as OCD), if the sufferer contends with it, and compensates for it, long enough, without medical and/or behavioral interventions, then it could become a stickier, more prevalent condition even beyond periods of flare or illness.

What kind of support does your grandson have with his condition both inside and outside school? Your topic subtitle mentions an IEP; does that mean your grandson has one? If so, does it strictly address the tics that come with Tourettes, without noting any behaviors and related accommodations for some of the comorbid behaviors (anxiety and/or ADHD-type issues)? Does your GS have a local doctor and/or therapist who can help assess his needs to modify the IEP? Unfortunately, some teachers are either uninformed or inflexible, or both. So it usually serves the child best to "overbuild" the IEP to help circumvent teachers who are more about following the letter of the accommodations rather than the spirit of the accommodations, i.e., serving the child's best interests so that he can function at his highest level in the school environment. Assuming your grandson has an IEP, I would review it closely to see exactly what's provided there. Should you find it lacking, I would request a meeting as soon as possible to review and potentially modify it. You may want to consult with your GS's doctor and/or therapist and see if they would provide some documentation (a letter) and/or recommendations for some of the issues and related accommodations that should appear in the IEP. Good luck!

Unbelievable. And "YMCA" supposedly stands for "Young Mens Christian Association." Hardly charitable or compassionate behavior, seems to me. Isn't that sort of discrimination illegal under the ADA, as well?

Another thanks from me, Sheila! It's always terrific to see more information regarding PANDAS/PANS put out by reputable and well-recognized sources that sometimes carry more weight in our respective medical communities than our own parental observations and impressions. But this scale will also be tremendously helpful to us!

Keeping in mind that I wear PANDAS/PANs-colored glasses, I have to ask you: Have you looked into PANDAS/PANS for your son? Many of us have found that our younger kids for whom a veritable alphabet of diagnoses have been applied due to various comorbid behavior sets are really responding to this autoimmune/inflammatory condition. Thus, in the end, its medical treatment (such as antibiotics) which set them on the road to health and recovery, rather than the prescription pad full of psych meds. I want to be circumspect and not automatically suggest that your son does, in fact, have PANDAS/PANS, but since your gut is telling you something about the diagnoses thus far are not right, I certainly think it's worth looking into. THere's a large forum here to research . . . . worth a look!

My DS has displayed ADD/ADHD symptoms as well, which vary between being more prevalent during exacerbation to non-existent when healthy, despite the fact that some OCD behaviors have proven to linger always and consistently. Each of our docs have warned us that any stimulant-based ADD/ADHD meds such as ritalin will only exacerbate the OCD, so these are not a good option if your child has comorbid conditions or behaviors. We tried a non-stimulant med -- Intuniv -- for about 9 months. Initially we thought that it might be helping, but it did make DS tired and lowered his blood pressure notably. We took him off because we couldn't see that it was having a positive impact on his attention issues after a while. What we've found to be most beneficial, however, is zinc supplementation. DS takes a highly bio-available form of zinc (Opti-Zinc) twice daily, and it has helped his focus notably.

Oh, okay. That sort of explains it. Sorry, we don't really have much experience with tics . . . mostly OCD behaviors on our end.

I PM-ed you, PhilaMom.

Basically, ACT is another branch of Cognitive Behavior Therapy that basically coaches you to accept the thoughts/worries you have without placing value judgements on them, rather committing yourself to moving forward with your original intention and necessary/appropriate actions, despite the "elephant in the room" that is what you're worrying about. In the end, the result is supposed to be not all that different from ERP in terms of, over time, "shrinking" that elephant-sized anxiety down to a more manageable, mouse-size. But instead of purposeful exposure to that which triggers you, it's a method of "accepting" the trigger when it comes upon you in your everyday life and, instead of freaking out about it or immediately assigning it a negative value, allowing it to "sit" in your thought space with you, accepting it for what it is . . . just another thought you had, and not one that should take precedence or crowd out all the other (potentially more constructive and productive) thoughts, and most of all, not one that you must act on. Our therapist decided to try combining this therapy with ERP for my DS because DS is very intellectual and tends to work hard at justifying his OCD and arguing on its behalf, rather than seeing it as a problem in all instances. I must say, it has seemed to help, and it makes my DS feel more like a participant in the process. Sometimes with ERP he's felt like some sort of "lab rat," forced to endure these exposures that he sees as contrived by someone outside himself and imposed upon him by people who don't understand what he's going through. The IOCDF has begun hosting some sessions on ACT at its annual conference, and here's a book that's pretty good on the topic. There might be more resources on the IOCDF web site, as well. ACT Book - Amazon

Thanks!

?? ?? Sorry I don't have anything to add . . . just questions of my own. I tried looking this up on line, and I'm not coming up with anything clear. What sets this therapy apart from Cognitive Behavior Therapy (CBT)? What are the primary precepts of CBIT? Do you have a link to an explanation or paper you could post? I'm interested/curious. We have done CBT, a more focused component of CBT known as ERP (exposure response prevention) therapy, and now we're mixing ERP with ACT - Acceptance Commitment Therapy. Thanks!

IMHO, how you respond to your DS's current condition is probably best gauged by your gut and by how intrusive -- or not -- his condition is in terms of his day-to-day functionality, happiness, and overall quality of life. You appear to be familiar and comfortable with the more holistic, natural responses. But those interventions typically take longer to take root and reach full efficacy, in my experience, right? So, if your DS is doing "okay," but not "great," maybe you can afford to try some of those things and see if they will help him. On the other hand, if he's having a really tough time, struggling on a daily basis, then I would think the intervention would need to fit the illness and probably be a stronger response in kind. I know that my family was finally brought to PANDAS/PANS by a particularly virulent episode after having treated our DS with a "regular OCD" diagnosis and typical interventions for almost 6 years. But when he fell off the edge of the planet at 12 and was completely dysfunctional, we knew for certain that this wasn't "regular OCD" and that he needed something the therapy and psych meds were not capable of giving him. What makes you think your DS is PANS? Do you have links to known medical triggers, such as lyme, myco p., etc.? Have you had testing for those types of known triggers? But you say "PANS" rather than "PANDAS," so you've eliminated strep as a potential culprit? Experientially, or through testing? I will tell you that my DS never had a case of "classic strep," including never having had a postive swab or culture. But when our world changed during his 12th year, we finally were able to get some blood testing done and found that his strep titers were exceptionally high, and they continued to move higher over the next few months, as well. Now, not every kid with PANDAS or PANS, even, will display high titers, but if they do, it can be a wake-up call that strep is playing a role, even if your kid has never had so much as a fever or a scratchy throat. Keeping your appointment with Dr. K. will probably assist you with some clarity on the situation as he has seen hundreds of kids with PANDAS/PANs and can give you some insight about your DS that may not yet have occurred to you. He can also provide an order for some immune panel testing, if you haven't had that done on your own as of yet. That doesn't mean that you necessarily have to follow through with his suggested line of treatment, of course. Which, if he believes your DS has PANDAs/PANs, is likely to be IVIG; historically, his protocol has been IVIG, followed by a course of abx to help protect the child while the immune system rebuilds. He may also prescribe a short course of steroids as a diagnostic tool, the thought being that if the steroids assist your child in terms of decreasing PANDAS/PANs behaviors, then chances are the behaviors are, to some extent anyway, the result of inflammation in the brain which the steroids are temporarily helping to quell. In the end, to the extent your DS continues to suffer because of the tics and/or other behaviors, and to the extent your gut is telling you there's something else in the picture that needs to be addressed, I would move forward with searching for, identifying and addressing the underlying cause of the tics or other behaviors. My family bought the "regular OCD" diagnosis for far too long, I now know in retrospect, and as a result, my DS and the rest of us took a very painful journey that I think may have been avoided had we gotten the proper interventions earlier. Good luck to you!

Personally, I think mixing it up is probably a good idea . . . Who knows which gut flora are flourishing in one's system and which aren't? We use a mixed probiotic that contains about a dozen different flora, and then also a sach b. -- not Florastor but a Jarrow brand version. Yes, supposedly sach b. is a beneficial yeast that can help crowd out "bad" yeast like candida.