MomWithOCDSon

I recently saw that Mrs. Meyers natural cleaning products (some of which are carried at Target) features cleaning products with geranium oil. And yes, I believe the title of that particular scent of products indicates "calming". If you have a local healthfood store or apothecary, I'm sure they can help you.

Yes, this guy is affiliated with Dr. Rosenberg's Wayne State team, as well. According to his bio at Children's Hospital, he is predominantly focused on TS, but if he's beginning to use Dr. K.'s protocol, then he's branching out somewhat and probably benefitting the OCD research as a result. Dr. Chugani Dr. Chugani and PET Scans This guy may be a GREAT resource and advocate going forward, especially given his access and areas of interest. But Tampicc, I can't find any reference to any specific trials or research studies he's currently running. If you hear/know anything further, please post! Thanks!

Hey Kara -- Well, I'm not a medical professional and our DS14 has had neither an MRI nor a PETscan in the course of his OCD/PANDAS. But I've recently been corresponding with Dr. Rosenberg's office at Wayne State and Dr. Grant at NIMH on the topic of the caudate nucleus, its inflammation (identified by Swedo/Grant in PANDAS), and the collection of glutamate in the caudate nucleus (identified by Rosenberg in pediatric OCD). And the short answer I've gotten so far is no, a brain scan cannot currently identify between PANDAS OCD and "regular OCD." They don't yet know which came first, the chicken or the egg; does inflammation permit the glutamate to collectin the caudate, resulting in OCD behaviors, or does the glutamate collect in the caudate, making it swell, with the OCD behaviors being the result of the inflammation, the glutamate or a combination of the two? I truly think, if we had the answer to that question, we'd be "golden" for at least effectively treating to a subclinical level, if not outright "curing" both PANDAS/PITANDS OCD and "regular OCD" (in quotes because I think it remains to be seen that there's any such distinction). It looks as though we're some time away from distinguishing/determining that causal relationship, though. Dr. Grant is currently involved with a glutamate/riluzole clinical trial, the participants of which may have PANDAS or non-PANDAS OCD as the criteria doesn't exclude either, and he's joining Swedo on the IVIG trial, as well. Meanwhile, Dr. Rosenberg at Wayne State has moved on to examining the role of heredity/genetics in the production of glutamate in the brain. While both of these guys use brain imaging in their studies, no one's seeing discriminating a PANDAS case versus non-PANDAS as a priority as of now.

I think some are "in remission" if not "cured" and are busy with their lives. I also think some have moved on to participate more fully in other forums that they find more applicable, such as a number of PANDAS families who've discovered that Lyme is an issue for them and are thus on the Lyme forum more frequently than they are here anymore. And finally, I know personally of at least a couple of families that are just taking an extended break. They feel they need to focus on family and home right now, and the forum, after months of participating and reading and sharing in ideas and research and exchanges of support has served its purpose for now, and they don't feel they have much to say anymore.

Sorry he's having such a tough time. The only thing I can say about the SSRIs is to wonder if maybe a really, really low dose might help him instead of make things worse, but I can appreciate your reluctance to give that another go. Many months ago, somebody posted on here about fish oils and the different omegas, etc. and about how for anti-inflammatory effects, you want to use Omega 3's and Omega 9's, but avoid Omega 6's because they're actually PRO-inflammatory rather than anti-inflammatory. Then there was this discussion about the ratio of EPA to DHA in the fish oil, too, in terms of supporting brain function and anti-inflammatory impacts. The recommendation was for a 7 to 1 ratio, EPA to DHA, and I've only been able to find one brand that covers all those qualities: Norwegian Gold Ultimate Fish Oils Super Critical Omega. It's one of the pricier brands, but I'm assuming it's because of the quality. I've found that less expensive fish oil supplements, while I'm not sure they hurt our DS, they certainly didn't help.

Hey Smarty -- I imagine the ideal dose varies from person to person. Plus, I would start it low and gradually build it up as dumping a large dose on him might cause a lot of excess gas. Our DS14, 150 pounds, takes 10 billion units of sach boulardis daily, 5 billion at each of morning and night. But he only takes abx twice each day, too. So maybe you could start with 5 billion and add another capsule after a few days, and if he needs more assistance, add another, too, since he's taking the abx 3 times each day.

Have you tried or considered a low-dose SSRI? We use NAC and a host of anti-inflammatory supplements (quercitin, D3, fish oil, curcumin), along with low-dose Zoloft. I do think the Zoloft helps him contend with the OCD and the anxiety underlying it. We've also returned to full-dose Augmentin XR and he's beginning to climb back out of a downward slump that began late January for him. Since beta-lactam antibiotics are thought to be glutatmate antagonists, I personally think the XR is assisting him in a number of ways, including "boosting" the NAC with respect to glutamate modulation. Is Danny still taking abx?

Yes, because my DS is symptomatic and remains on antibiotics, he doesn't actually "catch" an active strep infection. But if one of his friends or family has strep and he's around them, his antibodies go into excessive production (hyperdrive) nonetheless, and his behaviors deteriorate.

There's a new series on The Science Channel lately called "The Secret Life of the Brain." One episode a week or so ago was about people who had "alien limbs," arms or legs that either felt as though they didn't belong to the person, even though the person could control them just fine, or limbs (in this case, it was an arm) that acted almost entirely independently of the person. This lady had suffered epilepsy, had brain surgery to bring the epilepsy under control, and then from that point forward, her left arm began to "misbehave," waving without her "telling it to" in her mind, for instance. In all the cases, doctors did brain scans and found that two parts of the brain were failing to "talk" to one another in these people as they do in persons without the issue. Maybe something on a much smaller scale is going on with you? Maybe some residual or ongoing minor inflammation is preventing two very tiny pieces of your brain from talking effectively with one another, leaving that finger with a mind of its own or an inability to communicate with the "group mind" in your brain that speaks to the rest of your hand?

I, too, agree whole-heartedly. We're another family who wouldn't "qualify" under the strictest interpretation of "sudden onset," though I know I've read (though, admittedly not actually heard her say it) that she has adapted her criteria to include dramatic, sudden changes in Y-BOCs scores as well. Anyone have a link to actual paperwork or research attesting to that? Also, via her 2006 Mind Institute video, of which I took notes, I read her "episodic course of symptom severity" a little differently, as she contrasts it to standard "wax and wane" of "regular OCD." One of the things that sort of tipped our psych's scales into agreeing with us that DS's OCD was not "regular" was exactly that: the episodic course of his symptom severity.

Oil of Oregano?

Airial -- You have been so fortunate with your medical care and their broad, open-minded perspectives! And yes, I think that probably affords you some rose-colored glasses as compared to a lot of us. With the exception of DAN! Doctors in my area, my experience thus far has been that you even BEGIN to mention Autism in a way which implies/considers medical interventions as anything other than a management tool (as in, any implication that there might actually be a "cure" for Autism), you are met with scorn and a hand help up in one's face basically saying, "Hold on there, Jenny McCarthy! Don't start with me . . . . !" I am constantly surprised by the ferocity of that response, actually. Like somehow their profession is threatened by the mere entertainment of trying to get to the root of autistic behaviors' roots. Daunting.

I sincerely hope not, but I think the jury's out on this.

That's sort of a complicated question, at least for me. I think what I am less and less sure of is that the term "PANDAS," or even "PITANDS" is an appropriate one. What I am less and less sure of is that it might not be the case that ALL "mental illness" is actually a marriage of genetic susceptability and toxin/microbe that sets the genetics into motion. That 20 years from now, no self-respecting doctor will fail to test for infection when a patient suddenly turns up with OCD, TS, bi-polar, schizophrenia, dementia or severe depression. My DS was diagnosed with OCD at 6, and all inquiries at PANDAS or strep were completely waved off, in part because he was asymptomatic for the strep in all classic ways. But then, at age 12, at a sudden explosion of the OCD that pushed his Y-BOCS score well beyond a 20-point jump, I pushed for PANDAS treatment. And he responded remarkably well to antibiotics initially, and continues to respond, though the response grows more and more muted/subtle, and the setbacks seem to get deeper and more difficult to climb out of. We're exploring other underlying causes and potential treatments, though a part of me feels that puberty is at least partially to blame for the dramatic nature of these exacerbations, and that hormones are not just confusing his mind and his emotions, but actually driving inflammation as well. At the moment, a combination of abx and ibuprofen are keeping him functional, though not subclinical. So, is he "PANDAS" in the classic sense, or is he OCD? Well, if anti-inflammatories and abx make him better, then he must be PANDAS, mustn't he? But what if the "residual OCD" sticks around for the rest of his life? Does that mean he wasn't PANDAS after all? And then again, who's to say that abx and anti-inflammatories wouldn't help, to some degree, many, many people suffering with OCD, tics or other "mental" conditions, but they just haven't thought to try it? Now they're discovering that SSRI's have anti-inflammatory properties, so one classic pharmacological response to both OCD and depression may work, in part, for reasons completely other than serotonin modulation. Long way of saying, I guess, I see "PANDAS/PITANDS" everywhere. If it were up to me, every person with any "mental illness" would be tested for infections and immune function, and then be made subject to a trial of abx and inflammatory treatments and monitored carefully for their response. Oh, if I only ran the world . . . . . [sigh]

Thanks for posting! Maybe this will get some doubters' attention!

Pandas16, I SO appreciate all your input! It helps me see what may lie ahead for my DS14, and it seems as though anxiety as a bellweather is a thru-line, at least where the two of you are concerned. I can only hope and pray he learns to handle himself one day as well as you appear to today. Re. your gum story . . . do you know who Dr. Jonathan Grayson is? An ERP expert who has kind of an in-your-face, guerilla style of exposure therapy. DS and I attended a session of his on contamination at last year's IOCDF conference, and I think it was way too much for DS. Grayson brought in "chewed gum" . . . by whom, we don't know (I'm thinking it was probably finger-mashed under a running tap, given liability issues, etc.) in a shoebox and proceeded to pass it around the room. First he asked the non-OCD sufferers (family, supporters, etc.) to take a piece and put it in their mouths, and then he asked the sufferers to do it. My DS, at the time, was the youngest in the group, with the majority being adults and a few older teenagers at the time. He did it, but afterwards had a major breakdown and was basically incapacitated with regret that he'd allowed himself to be "peer pressured" into popping the gum in his mouth. Dr. Grayson spent some one-on-one time with him afterward, trying to help him walk away from the experience with a positive gain instead of a negative trauma. Tall order. DS used to chew a lot of gum . . . said the repeated, small motor action activity helped him sort his thoughts better and stay focused, kind of like someone else tapping a pencil or drumming their fingers. But he hasn't chewed gum again since that day last July!

Great find! Thank you for posting!

Hey WD -- You've EARNED your bragging rights! Go for it! Full disclosure: we're in your camp, as usual, so I'm not being entirely altruistic there. Our DS, too, has been identified as intellectually gifted, but when he's ramped up, you'd have a hard time knowing it. And yes, our DS has actually used a similar analogy to the card catalog although, being the 21st century kid that he is, his description is about a Microsoft Explorer list of files that have gotten moved around and jumbled up without his knowledge and now he can't find anything where he thought he left it. In this recent ramp-up, "confused" is his general state of mind when he's trying to tackle homework. Knock on wood, thus far, he's doing okay during the school day, but he does have an extensive list of accommodations and will sometimes ask for permission to leave the classroom so that he can go talk to his case worker or the social worker about something that's bothering him. But, in general, I think his classes are well-enough designed and run that they keep him tuned in and therefore push the OCD and its "best friend" confusion out of the way. But when he gets home, and it's just him, the book, and the assignment, that's another story. So far, the multi-processing approach -- speak it, write it, hear it, read it -- has been helping, but it requires either DH or me to be by his side to coach him and make sure he follows through. Another technique his ERP therapist came up with which works (though DS despises it) is that, if he's feeling confused and as though he can't focus, he needs to do something physical for a few minutes and then come back to the mental task at hand and try again. Living in the frozen Midwest like you, we've had to resort to having DS run the stairs to the second floor and back in the house, sometimes repeatedly, before he can settle back down for another try. Sometimes we have to send him for another run, and sometimes even a third run, before his "file cabinet" is sufficiently reordered to do that one piece of homework, but it has worked more often than it's failed. Sorry to hear your DS is struggling again, too; there must be something in the air/water/ozone layer that's making this period especially difficult for our kids!

Hi Kara -- So sorry for what you're going through right now, but can totally relate. Maybe the hardest thing is feeling demoralized because you thought you had everything under control, and now your DD is spinning out again. But you'll get it figured out; hang in there! NAC is n-acetylcystein, an amino acid that's been found in clinical trials to assist with some aspects of anxiety disorders, namely trichotillomania. It's also under investigation now for general OCD and depression. You can get it at the health food store, Whole Foods or the Vitamin Shoppe; we recently found a time-release version that we're trying. It works as a glutamate antagonist, and an excess of glutamate is now thought to be a significant factor in OCD. The advice is to start slowly and on a relatively low dose at first and build up from there. My DS14 is 150 lbs. and he's now taking 2,400 mg. daily, 1,200 mg. in each of the morning and night. Also, you've probably seen it here before, but I would really encourage you to consider some ERP (exposure response prevention) therapy for your DD. Even though it is a medical illness that is driving her exacerbation and the OCD behaviors, having some therapy tools available for better managing the OCD when it kicks in can help you and your DD feel in better control of the situation and help prevent her from completely spiraling out. Contamination was a big thing for my DS at one point, also, but the ERP helped a LOT. There are many threads regarding ERP here on the forum, so you could take a look for some more details or even specific ideas about contending with contamination OCD at home. I would caution you against "buying into" the OCD or contamination and trying to convince her, necessarily, that things are clean. The OCD is not rational, so rational arguments will only get you so far; if you give her the idea that her contamination concerns are in any way valid by washing more, cleaning more, etc., her concerns are likely only to grow, rather than subside. Rather, ERP would expose your DD to what she's fearful of until she comes to realize no harm follows in the exposure's wake; that touching a dirty sink will not make her sick or icky or any of the other stuff she fears. Once learned, these ERP skills are ones she can call upon whenever, if ever, an exacerbation brings those fears to the surface again. Take care!

Thanks! I'll be interested to see if they've got a new mouse study, of if they're referring to that Columbia University study that came out a year or so ago, and if the study is geared more toward genetics or microbes. I hope someone will be able to post a full version when it comes out!

Hey Lynn -- LLM has some great ideas, and we might try those, as well. Our DS14 has some homework issues, too, so I thought maybe we could compare notes a bit. Is your DS having trouble getting it done because he avoids it? Or is he sitting in front of it, but just not doing it? Does he claim to be "afraid" of it? Or confused by it? Or is it that he's spending his time doing other stuff and not even sitting down to do it until 9 p.m. or so? We've been in an OCD ramp-up recently, and our DS's thing is that he's confused by it or scared of it. The deal we have is that he gets home from school, he can have a snack and a 30-minute or so break, and then he needs to get started; if he's not finished in time for dinner, he breaks for dinner and then gets back to it right after. The only way he gets "free time" to play video games or watch TV is if/when he gets all the homework done, so sometimes that alone serves as incentive enough to drive him forward. Another thing I've discovered is that the "confusion" he claims is generally the OCD pestering and distracting him; it seems to literally disturb his ability to process what he's doing. So, when he's having a really tough day, I'll ask him to do his homework "out loud" . . . literally speak out his math problem as he's writing it down, solving it and working it. Most of the time, this engagement of more of his senses and processing, including speech and auditory, helps "push out" the OCD chatter in his head, and he's able to not just work through it, but actually feel good about it. It seems like success breeds more success. Finally, you might want to consider having an additional accommodation written into your DS's 504. I completely agree with you that sometimes some homework seems like little more than busy work, and it seems to do more harm than good to insist that DS muddle through it, at least in our house. You know, here we are trying to support the education system and help our kids make sense of having to undertake all this stuff in the name of "getting a good education so you can be who you want to be when you're an adult," and one lame teacher is having a 9th grader color a freakin' map!! So, anyway, we have two accommodations in our DS's IEP that helps reduce, if not entirely eliminate, that sort of homework excess. 1) During periods of exacerbation or "high anxiety," we get to eliminate all "non-essential" work; in other words, if DS can articulate his mastery of the geography behind the Cold War, he doesn't have to spend an evening coloring in the stupid map. 2) Another accommodation requires that teachers "Modify assignments for length, not content" because it can take our DS 3 times as long to do some assignments as it does a "normal" kid due to the OCD ("Obsessive Slowness" Obsessive Slowness by Fred Penzel). So, with math, for example, his teacher generally cuts his homework assignments down by half but makes sure that a problem of each "type" is represented. As DS can demonstrate in quizzes and tests that he's getting all the concepts without the multi-problem drilling some other kids may need, this accommodation has been a life-saver without causing DS any additional academic stress. Then, of course, there are those days where even those strategies don't work for us and it becomes a long, drawn-out drama. I'll look forward to hearing what you find works for you!

Michele -- Have you tried adding taurine? It is supposed to help with retrieval of short-term memory so that step-oriented tasks are easier and the "spaciness" can subside. For instance, there have been times where my DS would be in the shower, and he'd suddenly become distressed because he'd forgotten where he was in the process of washing up: "Did I wash my legs? I don't remember if I already washed my legs!" and so on. The Intuniv didn't seem to touch that, but the taurine has. Maybe it would help your child, also.

We've had some of that over the years, too; in our case, it tended to go hand-in-hand with the separation anxiety. There would be days where we'd walk away from our DS with him bawling, and us bawling, too, but we'd turn our backs to him so he couldn't see us. But we were worried that if we gave in and kept him home over the sensory or separation anxiety issues, he'd just become increasingly phobic about not wanting to go. So the nice thing about the 504, for instance, was that it let the teacher know, year after year, that this was a kid for whom certain "kindnesses" would be necessary; personally, I think it really helped us out in terms of teacher selection from year to year because our DS always got assigned the most flexible, positive, warm-hearted teacher. In terms of the clothing choices, any chance you could get her to pick out her outfit the night before, as part of her bedtime routine? Then she wouldn't have to get worked up over it the next day. This is a perfect example of how a 504 would help you. You could ask for an accommodation that notifies you well in advance of any of these special events: field trips, visiting presenters, etc. You could even ask (if they don't already provide) for a cirriculum guide that would tell you when they might be having Archie the Arachnid Wrangler in the classroom with his creepy-crawlers. And then you could go over those events with your DD and plan accordingly; you could arrange to be one of the chaperones, or you could take her to the field trip destination separately with just yourself, and meet the class there, or you could stop by the classroom that day so that she would have you for support the day Archie was coming, or, maybe as a last resort, you could go ahead and keep her home that day. We had a very similar problem with our DS in preschool, kindergarten and elementary school, off and on. The younger the kid, generally speaking, the more accommodating the teachers and, lots of times, they will just step up to the plate and help you out by getting the kid really absorbed in something right off the bat so that you can untangle yourself and get out the door. But as the kids get older and the general expectation is that a 5 or 6 year old can let go of Mommy's hand without having a circus sideshow provided to distract her, you don't get that automatic help anymore sometimes. So, once again, the 504 to the rescue. There could be an accommodation, for instance, that you could bring your DD maybe 5 minutes earlier than the doors open to the "general population" so that she could have her teacher all to herself for those 5 minutes to settle in and feel "special" and in control. Or you could, maybe, work in an accommodation that there is to be an age-appropriate task reserved especially for her upon her arrival to integrate her into the day, like feeding the class goldfish or setting out the art materials. Our DS became the class hedgehog's keeper, for instance, and woke the thing and gave it fresh water every morning, like clockwork, and that seemed to help him let go of us and warm up to being at school. Again, early on some teachers are probably more than willing to help your DD with things like this with no formal accommodations whatsoever. But having them spelled out can help in the event you need them to stretch into another school year on occasion, or in the event of a substitute, etc. Good luck to you!

Officially, an IEP does put the child in the category of Special Education; however, it does not, by definition, remove them from the regular classroom environment. By law, your child is entitled to the highest level of education available and appropriate for him/her, so if he can function within the regular classroom, then that's where he stays. Sometimes there will be a special ed resource aid in the regular classroom to help the kids who need extra support, but they still get to stay in the regular education classroom. My DS14, for example, has an IEP. He is in the regular, general education classrooms and the gifted education classrooms for all of his classes; the only exception is that he has a "resource period" built into his day (while other kids are taking an elective), so that he can touch base with either his caseworker or one of his other teachers if he needs to make up some time on an assignment, wants some additional help on something, etc. During exacerbation, that resource period has been a great "cool-down" period during the day, too, where he can just chill, organize his materials so he doesn't feel quite as at-sea, etc. The 504 is also in the standard environment, and it also provides for accommodations in the classroom. What it doesn't do, by definition, is give your child a case-worker who's job it is to help them advocate, nor does it give them a resource period or any social work assistance on a regular basis. In our experience, a 504 seems adequate for elementary school grades because, usually, your child is in one classroom most of the time, with the exception, maybe of fine arts or phys ed, so that one teacher just needs to be on the same page in terms of accommodations, techniques, etc. But once you get up into junior high and/or high school, where the kid is changing classes every 40 to 50 minutes and may have a team of as many as 7 or 8 teachers, assuming he still needs some significant assistance and accommodations during exacerbations, the IEP has made things a lot easier for us. The case-worker serves as our primary point of contact so, say, when he's moving into a period of exacerbation and we need to call upon an increase in his accommodations, all I have to do is get in touch with her, and it's her job to circle the team, fill them in, help DS advocate for his needs, etc. It really simplifies the process and gives you a "go-to" person.

We initially had a 504 Plan beginning in 3rd grade based on an OCD diagnosis. That plan was really just the bare minimum: more time for tests/quizzes, as need bathroom breaks, extra time for homework assignments as needed. When DS hit the major exacerbation that ultimately led us to PANDAS (he was in 7th grade by this time), the school actually requested that we transition from the 504 Plan to an IEP; the IEP provides for more on-site services and personnel available to our DS, and it also protects him from being held back strictly over excessive absences, etc. Now, in addition to general ed classroom accomodations, he gets two weekly social work sessions and an on-site caseworker who helps him advocate for himself and negotiate tough days and/or tough teachers. It's been a real blessing for him and us. His accommodations have been expanded, too, to allow for typing/keyboarding assignments rather than handwriting them, not being marked tardy when it takes him longer to go from one class to another, being able to enter the school early every morning so that he can get organized and prepared to start the day without feeling overwhelmed by all the noise and activity entailed with being at his locker when all the other kids are swarming through the halls, and my personal favorite: "adjusting assignments for length, not content." The school psychologist came up with that one, and it is BRILLIANT! So now, when he's in exacerbation or visibly struggling, his math teacher, for example, will have him do about half the number of homework problems as the other kids; he still gets assigned at least one problem of each "type" and must demonstrate that he knows the concepts, but he's not forced to spend all night drilling through repetitive problems that take him longer than the average kid not due to intellect, but to OCD. In short, our 504/IEP experience thus far has been very positive; I don't know where we'd be without them. Now the school is aware that it's not merely OCD, but also PANDAS that's at work, so the accommodations have been expanded that we be notified of suspected cases of strep in the class, etc. But the accommodations DO help and are applicable; they're just more applicable at some times than they are at others. I have to agree with LLM, too, about the "management" of behaviors in and out of extreme exacerbation through CBT techniques, etc. Because our DS had had an OCD diagnosis long before we came around to PANDAS, we've been steeped in the world of CBT for many, many years. As Laura said, a kid in the middle of a rage isn't going to readily access the tools and techniques that CBT offer, and certainly, we've seen also that in times of extreme exacerbation, it can take the patience of Job to coach our DS through a rough spot. But the CBT tools have been invaluable to us as parents and to him as a kid really trying to be as "normal" as possible because they prepare him for when he's not feeling quite so overwhelmed but still needs some help. I say go for it. If it can't hurt, and it might help, it's worth giving a try. Plus I know that 504's, because they entail no additional funding to the school and involve considerably less bureacracy or paperwork than do IEP's, can be "removed from the file" or terminated pretty much at parental will. So, if you don't see any benefits to it after giving it a fair shake, you can call a halt to it.