MomWithOCDSon

We've been giving our DS melatonin at night for sleep for over a year with no adverse side effects, behavioral or otherwise, that we've noted. Though, every kid is different . . . . maybe try giving it one night and skipping it the next and see what happens? Inositol used to be considered part of the B Vitamin family, but then it got pulled out and given its own classification. Supposedly, it works like a "natural SSRI," helping support the retention of beneficial serotonin levels in the brain and gut. I've been told that you need to treat it like an SSRI . . . start low and slow with the dosage and gradually work your way up. Also, there's caution against giving a child who's already taking an SSRI a separate dose of inositol as it may "activate" them.

So sorry you're slipping backward some; hopefully, you'll be able to stop it in its tracks and make up ground quickly, with the right interventions. Culturelle makes a powder for kids that can be mixed in applesauce, yogurt, even juice or a smoothie; you can get it at the Vitamin Shoppe. This is lactobillus GG which is not readily killed off by antibiotics, so you don't have to worry about spacing it out necessarily from the antibiotics, though that's probably still not a bad idea when you can.

Joan -- Is trust an issue for your son? I ask because we're going through an upswing in our house the last few days, too (I blame myself for trying to decrease his antibiotics in February, and a couple of viruses that have been going around at school). And the latest and most potent manifestation of his OCD now seems to be that he doesn't know who he can trust, including his dad and me. So when we instruct him to take ibuprofen, for instance, he says he has to "think" before he takes it, that he's not sure he should trust us when we give it to him, etc. In a rational moment, DS and I had this long talk because he's developed these thought rituals where he has to think about everything DH or I tell him/ask him to do before he'll do it, including walking out the door to go to school, taking meds, getting in the car (especially with DH at the wheel), etc., even though there've been zero traumatic experiences for him in this regard in his 14 years of life thus far. He said that he feels like he's being subjected to "peer pressure" when his dad and I tell him to do something, that we're dictating to him when he feels as though he needs to "think" about something. It's like standard teenage/untie-the-apron-strings independence angst "on steroids" thanks to the OCD! Even when I've reminded him that we're not his peers, we're his parents, and that he isn't doing rational "thinking" but rather getting caught up in an OCD thought ritual instead, he'll fall victim to the same behaviors the next day or the day after that. What it seems to come down to is trust; the OCD is his "constant companion" on some level, so he tends to trust it more than he does us, or his therapist, or his doctor, or his teachers . . . . . . It's infuriating and scary, and I'm not sure how to get past it myself . . . . . Thankfully, thus far, we can usually get past it and raise our real, rational DS from the ashes of a 15-minute episode and move forward with our day. But if the meds don't help him (and us) get a newly firm grip on things soon, I can see how it could spiral further. Honestly, like you guys, we've been immersed in the CBT/ERP world for years now, and I can't even begin to come up with an exercise that really addresses this.

Hey LLM, just curious. But if you're having to break the XR in half for your 8yo, thereby losing the extended release part of the equation, is there any particular reason why you/your doctor stick with the XR, rather than just going with regular Augmentin? In our experience, the regular is usually less expensive. And the regular Augmentin actually has a higher clavulanic acid ratio than the XR, I believe. Does that play into it?

The full, adult dose of Augmentin XR for conditions like sinus infections, etc. is actually 2,000 mg. twice daily, as compared to the 1,000 mg. twice daily many of us are giving our PANDAS kids, so it seems as though we're already accommodating them with a lower dose, aren't we? Colleen, as a nurse, you would know better than me, but I seem to recall having read somewhere that at 90 pounds, regardless of age, a kid is essentially considered an adult with respect to standard medications. Do I have that right? So, for antibiotics and OTC meds, is age really a factor, or weight? Our DS began 1,000 mg. twice daily of XR at age 12 to no negative results, including gut/intestinal. In fact, it seems to be easier on his belly than regular Augmentin, even at a lower dosage. They are monster-sized pills, though, so that might be the catch for some.

Generally speaking, I'm with you. I always want more information. The only hitch here is, let's say there's a genetic marker in common between autism and what will ultimately be determined to be PANDAS, once all the studies have been done and genetic markers for PANDAS have been identified. Between now and then, if your child displays one or more of those markers, is that just going to feed the PANDAS cynics more ammunition . . . look, I told you your kid had Aspberger's/autism! Is it possible that these tests could lead to MORE, rather than fewer, misdiagnoses? Of course, you're a lucky one with a very "present" pediatrician, so it doesn't seem he would be led down that path based on the marker evidence alone, but maybe it would be worth a frank conversation with him about the "end-game" of this testing. Is he participating in a larger research project? Is he following some hunch of his own? As a side note, I had a discussion with Dr. Rosenberg's office at Wayne State University last week. Dr. Rosenberg is the guy who's research on pediatric OCD helped identify glutamate as a "major player" in the development of OCD behaviors. Anyway, he's got a new line of research going now involving glutamate and genetics. I didn't inquire into any depth about that particular research, but I find it interesting that these folks are moving down the genetics vein of the research. Maybe there's some connection there, as well? Anybody else know anything further about this?

My DS has not had an MRI since his PANDAS diagnosis, but in her presentations, Dr. Swedo puts up an image (sorry, I'm not certain if there is a difference, necessarily between a "brain scan" and an "MRI") of the brain of a boy diagnosed with PANDAS. She uses the image for commenting on the enlarged caudate nucleus (a part of the basal ganglia) found in this boy, and how it shrunk down to normal size again following plasmapheresis. Also, you can Google it, but Dr. Rosenberg at Wayne State University, in his studies regarding pediatric OCD, found that scans of OCD brains revealed higher-than-average glutamate concentrations in certain sections of the brain, also, such as the caudate nucleus. I'm not clear on whether or not there was some sort of special "additive" to his scans, though, that made the tracing of the glutamate possible. Interesting stuff! I'll look forward to hearing from some more parents on this.

Silverbird -- I just came across your post and thought I would share our experiences. I'm not clear on what you mean by "interfering with sexual development." Do you mean that you're afraid some of these drugs may delay a teenager's sexual development? Or increase the speed of their sexual development? Or contribution to a lack of inhibition with respect to sexual activity? What, exactly, is the fear/concern in this regard? My son has been on low-dose SSRI's off and on for the last several years for his OCD. The SSRI decreases the rate at which serotonin is absorbed in the brain and the gut, thereby leaving it available for an extended period and helping the person to feel more positive, more in control of their thought processes, etc. In adults, the warnings here in the States include one about use of the SSRI may cause sexual dysfunction (to be blatantly frank: trouble becoming aroused and/or staying aroused), but that is a side effect that is also stated to be 1) sometimes temporary, decreasing as the person becomes more accustomed to the drug, and 2) impermanent, meaning once the drug is ceased, full functionality in that regard returns. So far as I've read or been told by our doctors, there is nothing "developmentally hampering" necessarily in these medications. That being said, I would completely agree and support being cautious about using any of these medications with children. In our case, we felt we were out of other options because he was being made so dysfunctional by the ferocity of his OCD at some points. As for supplements, again, here in the states, they are not regulated as prescription drugs are and therefore the mantra is always "consume at your own risk." My husband, like your doctor, frequently reminds me that just because it's "natural" doesn't necessarily mean it's "safe," but if you acquire your supplements from reliable sources, and if you start "slow and low" with them and then see if anything helps your son, and what helps. One thing I feel pretty secure in is the fact that, if standard amounts of these supplements were flat-out dangerous to consume, they would not be available without prescriptions or available at all. In the end, nothing is truly without risk. One could be hit by a vehicle crossing the street in front of your house. But its the weighting of risk versus reward. What is the quality of your son's life WITHOUT inositol or something that will help him with his OCD? What might the quality of his life overall be WITH some of that help? What might the quality of YOUR life be with some more help? Don't let the OCD (his or your own) call all the shots! You can do this!

Hi DandV -- Given daughter's sudden onset, I really think you're doing the right thing, looking into PANDAS. As for your son, having been diagnosed with a tic disorder at 10, can you look back at the time at which he was diagnosed and also recognize any "sudden onset" or even a dramatic exacerbation of the behaviors within a short period of time? Many times, if there's one PANDAS/PITANDS in the family, the genetic susceptability can be there for more than one. My son was diagnosed with OCD (we only see tics when he is really wound up with the anxiety) when he was 6; we inquired about PANDAS but were waved off. Finally, when he had a dramatic and rapid "ramp up" in those OCD behaviors at 12, we got some traction with investigating PANDAS, and he has improved dramatically with antibiotics. So it's possible that, even with the extended timeframe between the original diagnosis and now, your boy might be helped as well as your girl with investigating a PANDAS diagnosis and treatment protocol. I'm not as well versed on tics, so hopefully you've posted this question on the Tourettes board, also, and you'll get some feedback regarding supplements and natural rememdies there. As for OCD (and tics to some extent, too) PANDAS families use a lot of anti-inflammatory supplements in an attempt to decrease inflammation in the basal ganglia and subdue some of the behaviors: fish oil, Vitamin D3, quercitin, curcumin, coconut oil. We also use some amino acids like n-acetylsteiceine and taurine for glutamate modulation. Good luck to you!

I think that's a great idea! I'd written 20/20 and Dateline already several months ago on the heels of stories they did regarding OCD. I also contacted Oprah's producers . . . probably a year ago now . . . but never heard any response their, either. I'm thinking it's going to take a "groundswell" to get anything going. So choosing and focusing, with each of us writing in, might be the best answer.

I find myself somewhere in between optimist and pessimist. I guess our own experiences can't help but color how we see this issue. Beth Maloney isn't just out after the medical schools; her postcard campaign a year or so ago now was aimed at getting the word to our individual doctors' offices, therapists, psychiatrists, etc. I took those cards with me to each subsequent visit, but when they balked at putting a stack out for their customer base, I didn't push it with them. At least up to this point, they've all been willing to help my child, and I couldn't put that in jeopardy by alienating them about being willing to treat the "world" now. In my area, the biggest problem is as follows. It's not the individual pediatricians that are so resistent; it's that many of them take their leads from the exalted "gurus" among their individual medical groups . . . those docs who have made names for themselves as heads of departments at major hospitals, publish frequently, teach at the medical schools, etc. He sets the policies, for the most part, and if he's not willing to at least consider the possibilities, let alone "believe," you can almost forget being able to gain any major ground with any of his acolytes. Also, this particular know-it-all refuses to see PANDAS kids or perform any review or analysis of their medical histories; unless they have identifiable immune deficiencies, he immediately refers them out to psychiatrists. And even with immune deficiencies, he is unwilling to connect any tics or OCD or anxiety to those immune issues. He's even written papers nay-saying PANDAS in which most of his quoted sources are . . . . drum roll please . . . HIMSELF!!! What is it Daffy Duck says in the cartoons? "What a marroon!!"

Thanks, Kimballout! More ammunition for my growing arsenal!

Tony -- My 14 year-old son also has OCD (we believe it is tied to PANDAS, but we've been working on the OCD for more than 7 years now). He also takes Sertraline (generic for Zoloft, I believe), and he too struggles with some intrusive thoughts at times. Over the years, his primary manifestation of OCD has "morphed;" he's experienced everything from contamination to scrupulosity to intrusive thoughts. He also has some general and social anxiety; they get worse when his OCD is ramped up, I think because he knows he either has to hide or do without his compulsions when in most social situations, and that's stressful. Two things. The first, biggest thing is I would encourage you to find a therapist with whom you can start some Cognitive Behavior Therapy (CBT) and Exposure Response Prevention (ERP) therapy. This therapy will help you TREMENDOUSLY, and the combination of therapy along with the proper SSRI has been proven to be most effective for contending with OCD. Since you've had OCD so long, the drug alone is not going to be able to reverse all those years of your learned, accommodating behaviors. But the therapy can help tremendously. You can use the International Obsessive Compulsive Foundation (IOCDF) web site for help finding a good therapist that specializes in helping people with anxiety disorders. International OCD Foundation Secondly, there is exciting new research regarding an antibiotic called d-cycloserine and its help with both 1) making therapy for OCD more effective and 2) helping with social anxiety. You can Google it, and when you find a good therapist, they should have some familiarity with the research, also. It may be worth a shot. Good luck to you! Feel free to PM me if you need anything further.

Got your PM and responded; hopefully you'll get that notification. I'll second LLM and Vickie. Breaking through that OCD/anxiety wall -- either directly yourself, or with the help of a good therapist -- is important. With PANDAS, the medical help (abx, etc.) is key, but coping until the appropriate medical intervention can be sourced and given sufficient time to kick in is a minefield, too. In our case, ongoing therapy is helping, even after the abx have gone to work. Also, yes, I'm not sure amoxicillin, especially at only 14 days, is going to provide adequate assistance. Most of our kids are on stronger abx with longer activations and/or half-lives, like Augmentin XR and/or azithromycin, and many of us have used treatment doses of at least 30 days, and sometimes much longer than that.

Hi Smarty -- Well, we did OT for a while, also for sensory issues, after having had a formal evaluation on that front. DS was about 8-9 at the time, and he was very resistant. He hated it, in fact, and we weren't seeing a lot of gains by virtue of the therapy, either. Maybe if he'd disliked it less, we would've seen more gains and/or stuck with it longer. But he was just overwhelmed at the time, I think, trying to deal with school, CBT/ERP therapy once or twice each week, and just trying to be a kid and have some play time too. I think he resented it. In the end, we read "The Out-of-Sync Child" and "The Out-of-Sync Child Has Fun" and sort of built therapy into his everyday life with some of the ideas and exercises in the books. I admit, in the end and up 'til now, we've sort of picked our battles because there've been much bigger fish to fry in the last 18 months or so. So if he'll only wear one brand of socks, or one pair of shoes, or collarless shirts, or cargo pants but not jeans, well, so be it. At least he's not leaving the house naked!

Hey Teyla (and Jack) -- Your story sounds very familiar. We've been through all the psych drugs, the therapy, outpatient programs, etc. The truly horrific and hard part of our journey began when he was 12. He, too, dodged his friends, spent hours curled up in the fetal position in his roof, stressed out, or in front of the computer or game station, trying to have fun and forget his fears for just a bit. My son will be 14 in one week. Today he is functional, social, happy, even thriving. We continue with CBT/ERP, and he's on a low-dose SSRI (Zoloft) also. He's not entirely anxiety-free or OCD-free, and after almost 2 years of H-E-Double-Toothpicks, he's still relearning some things about self-sufficiency and being a teenager. But I know deep in my heart, without a shadow of a doubt, that we would not have arrived at this considerably better place without antibiotics. And I also know that if we can get to this place, so can you and Jack. When you say you convinced your pediatrician to issue a "maintenance dose" of antibiotics, what do you mean by that? A prophylactic (lower) dose, or a treatment (higher) dose? And which antibiotic? Have you seen any positive changes . . . however small . . . following beginning the abx? How long has he been taking it thus far? Stay tuned, keep reading and keep fighting for treatment opportunities for your son. We live in Illinois, too; I know help can be hard to find here, but you can find it! Feel free to PM me if you like.

Any chance you could start nicking away at those obsessions bit by bit, starting with a less intense one and working your way up from there. "Bust" his OCD logic by disproving the imagined consequences of doing something his obsession demands that he can't do? Say, for instance, he can't use the second step from the bottom "or else;" if you could get him to use that second step and then experience the absence of the consequence, would he be able to recognize that? Then maybe you could work toward the next obsession? I recall that you guys have tried a lot of treatments and therapies to contend with the OCD; is he in therapy now? Will he "work" his therapy exercises? Could the therapist maybe get through to him on this?

I'm not sure how old the boy is, but there's a great book out called "ADHD and Me," authored by Blake E.S. Taylor, a now-college-age boy who's suffered with ADD/ADHD ever since he can remember. He tells his own story and anecdotes from his "distracted" life from a young age, right up through high school. And at the end of each chapter, he has hints and ideas from a kid's perspective about how to deal and adapt to keep your head in the game, so to speak. I really enjoyed it, and so did my DS (he read it at age 12). For parents, I really like "Right-Brained Children in a Left-Brained World: Unlocking the Potential of Your ADD Child" by Jeffrey Freed and Laurie Parsons. Freed is an academic and teacher, and Parsons is the parent of an ADD boy. Freed's point is basically that, as many of us here would ascribe, ADD is mostly a label made convenient for teachers and administrators to place on our kids when they have learning differences that aren't readily adaptable to the historically left-brained-oriented educational system in the U.S. He explains how our kids are literally evolving . . . thanks to our increasingly visually-oriented world in which they're given black, white & red mobiles over their cribs and Baby Einstein videos from birth . . . to be more right-brained creatures/learners, and how many other systems, particularly the educational in many states, have yet to catch up and modify to address and hold the attention of these right-brained learners. He also has exercises and techniques in the book for helping your right-brained kid better navigate the world, especially in school. I credit Freed with teaching my DS to read; he was in an exacerbation in second grade and having a really hard time learning via phonics and that "part-to-whole" (sound out each sound, each syllable and put it together in a single word) method, so we worked at home with Freed's "whole-to-part" techniques (based on right-brained kids having exceptional memories), and DS grabbed hold and literally took off. He became a happy, avid reader instead of a shy, reluctant one. Hope those are helpful!

I like Wiki, too. It's not really the article itself that is "feisting" me up . . . it's the editor's sanctimonious railing at Buster on the "Discussion" page that got me going! Bet you're feisty, too! I've yet to meet a PANDAS mom who isn't!

Wow! I just finished reading the whole "Discussion" tab on that Wiki "PANDAS" article! Buster is a ROCK STAR! And so calm, cool and diplomatic in dealing with this piece of work, "SandyGeorgia," whoever that may be! Why is it when you tell someone a fact they don't agree with, you're lacking "impartiality," but when they repeat something over and over again ("controversial") without any concern as to the weight or tone that word/term conveys, that's somehow NOT lacking in impartiality?!?! I would argue that the Wiki editors are doing precisely what Buster is being admonished against doing. Does the article really need to state and restate the "controversial" nature of PANDAS? Isn't the mere term redundant in the face of a fully fleshed-out, neutral article in which all available information and points of view are made explicit?! Aren't the editors actually condemning the article to mistrust and lack of credibility by coloring it with that word -- "controversial" -- over and over again? Wouldn't it be better to just state the cases on both sides of the issue clearly and concisely, permitting the readers to see for themselves the level to which the topic is, in fact, controversial? Sock it to 'em, Buster!

Oh Joan, I'm so sorry. I wish I had some great idea(s) for you, but all I really have to offer is some support. I recall that Sammy Maloney was refusing to take his meds for a time, hiding them in the couch cushions instead. I don't remember Beth being specific about how she got him to take them again finally. Any chance they could be powdered up and put into food or drink? It sounds sort of lame, I know, and I'm guessing you've tried that. Have you or your doctors looked into the whole glutamate antagonist drug response for "treatment-resistant OCD"? I've been doing a lot of reading on that lately and have recently corresponded with Dr. Grant at NIMH and Dr. Rosenberg at Wayne State with respect to the role of glutamate and what treatments like riluzole, NAC, taurine and potentially even beta-lactam antibiotics bring to the table. I suppose if your son is unwilling to take anything, then even that option isn't available to you right now. But you wonder, if he were to finally take something that actually made him feel better, would he then be willing to continue to take it? Or is the "OCD alternate reality" so firmly ensconced right now that even that logic would fail with him? Hang in there!! And call in all your resources. If you were to take him, right away, for plasmapheresis, would the doctor's office/hospital help you get it done, even if restraints were required initially? Or would they turn you away because he would raise too much of a ruckus?

I think you should take up knitting in your "spare time" and knit this relative and her entire family some nice black and white PANDAS hats . . . complete with ears . . . for giving next holiday season. Make sure they're made out of really itchy wool so that they are annoying to the wearer, and maybe attach a megaphone so that their complaints about the annoying, itchy hats can be heard . . . repeatedly . . . by anyone within 20 feet of them. Consider adding an automatic locking device to the chin tie-strap that makes the hat extremely difficult to take off; that way, they'll be forced to wear them both to bed and therefore find sleep more difficult, and to public places and events at which they'll likely draw unwanted attention for "being different" and have to endure the sideways glances and "well-meaning remarks" from strangers, like "Well, why don't you just take it off, then?" THEN maybe they'll understand something about what it's like to live with PANDAS to the extent no Wiki article can EVER convey!

We've used both CBT and ERP for our DS, off and on, for many years now. He was diagnosed with OCD at age 6 and had a recent resurgence (we believe PANDAS) of OCD and general anxiety at the age of 12. ERP is especially productive, but because it requires the child to actually face the fear/trigger, it can be tough in the beginning. It also requires that the parent(s) participate wholly and don't "egg on" the OCD by giving in to anxiety demands on the part of the child. I would take a look at the International OCD Foundation website for some suggestions for practitioners in your area, and there are other resources such as the Chicago chapter of the Foundation which mounts "Expert Perspectives," really helpful, short papers by experts in the field, about OCD and how therapy assists. I would also highly suggest books by Dr. Aureen Wagner (she has some for both kids and parents -- "Up and Down the Worry Hill" is a great one for kids) which explain both OCD and ERP in a very easy, concise way. And, finally, for adults, taking a look at the research papers by Dr. Eric Storch from USF can be very informative and helpful, too. For instance, his team conducted a study about parental involvement/compliance in therapy and the outcome for the afflicated child. Here are links to the IOCDF and the Chicago chapter's "Expert Perspectives" section: IOCDF Expert Perspectives Good luck to you!

If the Intuniv seemed to be helping him except for the sleepiness, you might try it again along with frequent snacks to keep his blood pressure modulated. Our DS was sleepy at first for about a week when he started, but we kept him stocked with granola bars, and that side-effect seemed to diminish within 7 to 10 days.

Our DS's IEP testing addressed processing (auditory, visual, spacial) skills, so the school psychologist should be well-armed with the appropriate assessments, I would think.