MomWithOCDSon

Hang in there, NMom. For what it's worth, this does sound very similar to the activation result we were getting with our DS when our first psych increased the SSRI dosage and we didn't know enough to say, "No." Perhaps dropping the dose will give you some relief in that regard. I would stay at the low dose for a full six weeks before increasing it again, if ever. That's the full efficacy window of an SSRI.

Well, as you know, we are fans of low-dose Zoloft. And if her behavior and mood are generally much improved, I'm not sure what else abx would do for her at this point. You? When you say she's not yet 100%, what are the "hanger-ons" in terms of behaviors? Are they OCD-oriented? And the abx you were using before, was that azith or a beta-lactam, like augmentin or pen? I'm sure you've seen all the posts of late about glutamate and how modulating it has been helpful to some of our kids. To my knowledge (admittedly still needing some rounding out), SSRIs don't work on glutamate, so if that happens to be at the root of our DD's lingering issues, the Zoloft may not help. And if her mood is generally good, then it doesn't sound as though she is necessarily in need of Zoloft's antidepressant characteristics. Meanwhile, they're finding that beta-lactam abx do appear to work against glutamate, so something along the lines of augmentin or d-cycloserine might assist with the OCD. If you do decide to try the Zoloft, I would stay at the original dose for a full 6 weeks; we've found activation when increasing the dose too quickly, and most doctors acknowledge that it can take up to 6 weeks for an SSRI dosage to reach its full efficacy (though, experientially, I would say you'll probably know within 3 to 4 weeks if it's helping, and sooner if it's doing something anti-beneficial). And depending upon your DD's age/issues, 12.5 mg. might be all she'll ever need to take things just that next notch toward the better. Enjoy your vacation!

I have used the chart that Vickie posted, though I have to admit that sometimes it's a little tedious for my use everyday. I've resorted to a fairly concise digital journal these days where I note changes in supplements or meds, dosages, etc. And then I make some very basic notes (up arrows, down arrows, etc.) for key behaviors and how they're trending: obsessive thoughts, rituals, anger, overall mood, sleep, etc. So far (knock on wood), his doctors have been receptive.

Hi! I would tend to agree with the others . . . your son's increasingly negative thoughts one day after beginning Zoloft is more likely coincidence than related. Our DS14 has been on and off SSRIs over the last few years, and the quickest we've seen any impact (positive or negative) has been about 7 days, with full efficacy at about one month or maybe a little more. He's currently taking Zoloft and it has definitely been helpful. The doc who prescribed the Zoloft for your DS, is he/she "PANDAS-knowledgable"? What is the dosage? We've found that, even with our PANDAS-knowledgable (but admittedly, not expert) pediatrician and psych, they can tend to prescribe the "standard" dose of these types of meds without a full understanding of the parameters more appropriate for PANDAS kids (i.e., much lower doses, sometimes by half). So, depending upon the dosage you're currently giving your DS, if the negative thoughts/behaviors continue for the next several days, you might consider cutting the dose in half and see what happens then. It's possible he's being "activated" by the current dosage, in which case lowering it should be helpful.

I've read that olive leaf should not be dosed simultaneous with antibiotics because they might negate one another's effectiveness. I had thought that olive leaf is intended to be a "natural antibiotic," so while our DS is still taking Augmentin, DH and I have been taking olive leaf once per day as our own version of a prophylactic antibiotic, to try and keep the germs away from the house. It's supposedly an antiviral, also, so hopefully it's going to beneficial in many respects.

We use both curcumin and NAC for our DS14. I do believe they help, though he's been taking them so long, I'd be hard pressed to tell you their exact efficacy. And I'm not currently willing to take him off of either of them to find out what deficits removing them may cause. We buy the organic curcumin at Vitamin Shoppe and give him two capsules daily (for a total of 500 mg.). The NAC we also get at Vitamin Shoppe, and he's currently taking 3,000 mg. daily (broken into doses of 1,800 mg. in the morning and 1,200 mg. with dinner) based on studies at Yale and the NIMH for OCD. We originally began using the curcumin for its anti-inflammatory properties, but happy to hear there may be a glutamate clean-up component there, also! Thanks!

No lithium (homeopathic or otherwise) here, but DS14 has been taking lamictal for almost 3 months now, and we've seen tremendously positive results with it.

In exacerbation, when the OCD flairs violently, my typically math prodigy DS goes into a tizzy about math as well. First he avoids it like crazy, and when forced to face it does pretty much what everyone else is describing here: shrieks of "I don't get it!", breaking pencils, pounding his head with his hands, crying, etc. What I've found helps is the following, and in this order. Maybe it might help your DD, also: Use plain white paper to "hide" all the mish-mash of the rest of the textbook page or workbook page so that only a "window" leaves the problem to be solved visible, or have her copy the problem down on paper or in her notebook so that she can clearly see what the problem to solve is and not be distracted or distressed by all the other "noise" that appears on a book page. Ask her to explain the problem to you out loud and what steps she might take to solve it. My DS is at his best when he's the "authority" on something, and I think getting his verbal senses involved in the task just helps him better organize his thoughts and responses. If/when she says she "doesn't get it," gently remind her that yes, she does; she just needs to organize her thinking and you're there to help her do that. If the avoidance or meltdown continues, you can try pressing her a little harder for "what's the next step? What do you need to do next? Find X?" Sometimes that'll wake my DS out of his distressed fog sufficiently because I've inadvertently asked a really stupid question, and then he's back in the "driver's seat," knowing more about the math than I do and ready to explain it all to me. If all else fails, get physical. Our DS's therapist suggested that he do jumping jacks or hike the house's stairs a few times to calm down and get refocussed when he's stressed out about the math. We've found he really likes a big yoga ball. He'll bounce on it, stretch out on it, roll around on it, do sit-ups or push-ups on it, for 2 or 3 minutes, and then he'll come back to his desk with renewed focus and calm. Some tutors might be prepared with these or similar strategies, but my fear would be that no tutor will understand your DD or what she's going through like you do, and that might lead to more frustration, especially during exacerbation. Now, if it were a matter of her coming through a tough patch, having the calm and focus to work at the math, but suffering from some learning deficits because of what she'd missed while she was sick, I could really see the value of an outside tutor. But if she's still fighting OCD, that might be a tough call unless you can locate a tutor who's had experience with that particular animal. In our case, our gifted DS14 now knows a lot of math concepts we don't get, so helping him academically isn't possible for us. But we find that the help he really needs is in coping and focus strategies, and once he has THAT support going for him, he can teach himself the actual math concepts without flinching.

One of the interesting things that Dr. Swedo has said in her presentations, and it stuck in my mind because of our own experiences, is that the temporal relationship between exposure and behavioral manifestations tends to change with subsequent exposures. She has said that a 5- to 9-month lag may occur with the first exposure and presentation of PANDAS; however, with subsequent exposures, the temporal relationship tends to shrink to the point that, after 3 exposures or so, the child may actually present with PANDAS behaviors BEFORE a strep test will render a positive result! The link to this video has been posted before, but I have found it very useful in terms of reminding me of some of the key findings and perspectives of Swedo and her team at NIMH. Swedo Video at Mind Institute

We've not been there, but Rogers in Oconomowoc, Wisconsin has an excellent reputation. The IOCDF speaks highly of Rogers, as well, and we know several families whose teenagers and young adults have been helped there. It's always been "in reserve" for our family, should we need it. All the best to you!

Well, probably rightly so. This might be another instance of "Consider the source." Unless it comes from the leaders in research in either of these fields, I wouldn't place any particular weight on that "opinion." And even then, given the disparity amongst many of those parties in terms of their positions and perceptions at present, I'd probably think twice about jumping on that bandwagon. Too much disparity in professional opinions, too much at stake. Just MPO.

On top of which, as has been said many times here before . . . "Autism" is little more than a label placed upon a set of behaviors at present. The underlying causes and mechanisms . . . genetic, toxicological, environmental, etc. . . . have yet to be fully discerned or identified. I know experientially, as I've said before in other posts, that, during full-on PANDAS exacerbation following strep or strep exposure, my DS has magnified ASD/PDD-type behaviors; he has more trouble communicating verbally, he will engage in repetitive movements or speech (words and/or phrases), he will engage in less eye contact and avoid social interaction. But once the exacerbation is under better control, those ASD/PDD-type traits recede; in his best health, they are completely non-existent. So to the extent that, perhaps, both autism and PANDAS have, at their basis, inflammation to hold accountable, then there may be a tangential relationship. I remain curious, however, as to who it is who said that PANDAS is "an ASD disorder."

What are you referencing when you state this? As I recall Swedo's slide presentation, she notes ASD behaviors among the possible "comorbid" behavioral spectrum, along with ADHD, separation anxiety, emotional lability, etc. But she never said that PANDAS was part of the spectrum. And I have a paper by Robyn Cosford that speaks to PANDAS in autism, but again, does not put PANDAS within the spectrum itself. So I'm no clear what the source of your assertion is?

It's largely over my head, too. The only thing I'll say in sort of an admitted "knee-jerk" reaction, is that I see L-theanine referred to as a "glutamate analog," meaning something very similar to/exchangable with glutamate. And, from all the other research and our own experiences to date, the last thing we want to do in our DS's case is enhance the glutamate and behaviors coming out of that. But then, again, I see, also, that they think that L-theanine may increase GABA, and GABA in turn sort of neutralizes glutamate activity. So maybe, in the end, it would be helpful? I need a more scientific mind than mine to help sort all this out!

Wow, Mkur! Thanks! I have to say that I was mostly focused on the article at the top of the page and had only thus far scanned the lower story regarding the cough medicine. Once again, very interesting! It does make me wonder whether or not the Wikipedia authors have it straight; is it really acting as a non-selective serotonin reuptake inhibitor (I guess that would make it an NSRI, rather than an SSRI), or is it that it is actually glutamate inhibiting, as the other links you've researched appear to indicate? No, we've never tried dextromethorphan for behavioral purposes, and we've rarely given DS any cold medicines, per se. Back when he was very small and nearly every cold would become an ear infection, we focused on cold rememdy formulations, rather, that contained guaifenesin to break up the mucus and thick fluids and encourage the drainage. We didn't know about his OCD/PANDAS then, though, so we weren't on the lookout for all the behavioral "baggage" we now know is directly linked to his physical health. The Wiki article, however, also mentions that dextromethorphan can induce a histamine response, which is definitely something we don't need on this end as DS struggles with allergies and stuffiness already, as well as eczema; he's got enough histamine coursing through his system to supply a half-dozen people! Now, that could be another whole discussion, since they've found elevated histamine levels in people diagnosed with schizophrenia and a number of "psych drugs" (antidepressants) are also noted for having antihistamine characteristics. Remind me again why it's still so hard for so many medical "professionals" to believe that inflammation in the brain and/or gut can be at the root of any number of psychological conditions?!?!?

Maybe I'm just still playing catch-up on the research, but this is the first time I've seen the link made between glutamate and autism. For me, it explains a lot about the ASD/PDD-type behaviors we've seen in our DS during exacerbation. Mercury, glutamate and autism

Perhaps this is why some of our kids experience trouble sleeping during exacerbation: just one more area in which excess glutamate plays a role. Glutamate and Sleep The oral part of the pontine reticular formation (PnO) is a component of the ascending reticular activating system and plays a role in the regulation of sleep and wakefulness. The PnO receives glutamatergic and GABAergic projections from many brain regions that regulate behavioral state. Indirect, pharmacological evidence has suggested that glutamatergic and GABAergic signaling within the PnO alters traits that characterize wakefulness and sleep. No previous studies have simultaneously measured endogenous glutamate and GABA from rat PnO in relation to sleep and wakefulness. The present study utilized in vivo microdialysis coupled on-line to capillary electrophoresis with laser-induced fluorescence to test the hypothesis that concentrations of glutamate and GABA in the PnO vary across the sleep/wake cycle. Concentrations of glutamate and GABA were significantly higher during wakefulness than during NREM sleep and REM sleep. Regression analysis revealed that decreases in glutamate and GABA accounted for a significant portion of the variance in the duration of NREM sleep and REM sleep episodes. These data provide novel support for the hypothesis that endogenous glutamate and GABA in the PnO contribute to the regulation of sleep duration.

Dr. Jenny Yip, whom some of us may have met at last year's IOCDF Conference, has started a new blog called "The OCD Monster" to help kids with OCD and their parents. Here's a link to the new blog. I haven't read it yet, but I'm excited by the second post: "Mislabeling in the Classroom: Distinguish the Differences of ADHD, Anxiety and Giftedness." The OCD Monster

You're a research Queen, Laura! Thanks! I'm interested to hear some more feedback on this, and I'm going to look into whether or not my local Vitamin Shoppe carries any luteolin supplements. I hear you on the whole "guinea pig" thing, but that research is pretty darn compelling!

Great news, Lynn! So happy for you, and will send good thoughts that the improvements continue!

Oh yes! Melatonin is a life-saver when it comes to sleep! Another vote for that here!

Thanks, pandas16. Any chance you or someone else could translate into plain English for a science-neophyte such as myself?

Deedee and DCMom -- I am green with envy over you guys going to FL for the Storch/Murphy program. I've heard nothing but great things about that intensive, and having met Dr. Storch at the IOCDF conference last year, hearing him speak and reading many of his papers, I find he and his colleagues SO impressive in every way: knowledgable, compassionate, experienced, etc. Please drop a fresh topic when you get back and fill us in. We have a very good therapist and psychiatrist team here and pay pretty hefty prices for weekly therapy during the "ramped up" times and somewhat less regular sessions during the tamer periods, so I'm not sure our DS would have a whole lot to gain from the intensive or that we could afford it, either. But I am very curious about it and hold it in reserve, myself, for the "if we can't get this under control here, then . . . . " sort of peace of mind. Travel safely and good luck!

Hi MassMom -- Did your DD ever test positive via strep swab and/or culture to strep? Is that how you came upon the initial PANDAS diagnosis? Have you ever had her strep titers (ASO, AntiDnase- tested, as well? Has she been tested for other possible triggers (PITANDS, as opposed to PANDAS) such as mycoplasma, lyme, etc.? I guess, in the end, I'm just trying to clarify if you have a direct causal link to strep itself, of if it's possible her behavior could be attributable to other microbes that may require a differing response. My DS is PANDAS; strep is definitely his trigger, although we find that other standard triggers of immune response (viruses, allergies, etc.) can also now trigger an increase in behaviors, as can mere exposure to strep, even when he does not actually contract it. His ped has said that being exposed to strep, even though he remains on antibiotics and is unlikely to actually "catch" it, can cause his body to ramp up production of antibodies in order to ready his defenses against a possible intruder. Since he's always had a tendency toward being hyper-immune, that makes sense to us. In our experience, yes, ongoing antibiotics do seem to help with symptoms, including the behavioral. Not entirely sure why, but it has been true. When we take him off, his behavior holds for about 8 days before it declines again dramatically. We're hoping this phenomenon fades as he grows and matures, and his immune system grows and matures also. So staying on abx for a more extended period . . . maybe try 30 days initially . . . may make a significant difference in your DD's improvement and health. What kind of "counseling" is your DD receiving and from what kind of professional? Six weeks is probably a bit soon to see dramatic changes, especially if she's only attending one 45-60 minute session each week; she likely spent the first couple of sessions just getting accustomed to the counselor and the way in which the sessions are conducted. Has your DD and your family been given "homework" or exercises to work on when not in actual session? But it is important to line up the proper professional for the best results with anxiety/OCD. There is quite a bit of literature available regarding exposure response prevention (ERP) therapy and its efficacy with pediatric OCD, so you need a therapist well versed in ERP and its techniques. You can go to the International OCD Foundation web site for some recommendations of professionals in your area, and there are many, many posts here providing ideas on dealing with fears, books to read, books for kids, etc. if you use the "search" tool. For your DD specifically I might recommend Dr. Aureen Wagner's book "Up and Down the Worry Hill." Following is a link to the IOCDF web site and its "Find a Treatment Provider" database: IOCDF - Find a Therapist Also, because PANDAS/PITANDS is thought to be largely an inflammatory response, using anti-inflammatory remedies and supplements may give your DD some relief while you investigate what abx and other professional interventions might be best. Ibuprofen helps some, particularly on a short-term basis. Supplements like curcumin, Omega 3's (fish oil), quercitin and coconut oil also have anti-inflammatory properties. For our DS's more anxious times (like transitions, going somewhere he's uncomfortable about, etc.), we find that valerian root gives him an "assist" and takes the edge off the anxiety. You can find valerian root capsules over the counter at most pharmacies and groceries. Welcome to the forum, and though I know it can be daunting, thumbing through the pinned threads and some of the topics here will probably answer a lot of your questions in greater detail and give you more information to take to your doctors and therapists going forward. Good luck! Nancy

Cab -- Here I'll just echo what the others have said: you're a good mom, and you shouldn't beat yourself up. This is a complex illness and a complex issue, and we can't spend too much time and energy looking backwards and wishing we'd known more than we knew then, or done something differently then than now. We just have to look and move forward. I'll PM you with more detailed answers to your questions, so as to spare everyone else info they may already have seen from me. But hang in there and know that our kids are more resilient than they may appear, as are we; you and your DS can make headway yet!