MomWithOCDSon

Thanks SF Mom, Karen and Momaine. She does have allergies, and she's been treated for those in the past with respect to her ears and eyes. You would think, though, that the vet would've mentioned the allergic possibility for the toe issue, too, though. I'll check out those threads with regard to canine strep, too. It couldn't hurt! As for Strep B having the ability to "become Strep A," I'd love to have some additional info on that, if it's available! As I've continued to press the strep/OCD/PANDAS connection with our psychiatrist, one of the push-backs I've gotten from him has been that "strep is everywhere . . . its on your skin, its on objects, etc.," erego, it can't be the source of mental illness. But I'm pretty certain that the strain of strep that is "everywhere" is the more innocuous "B," correct, as opposed to to Strep A? But if Strep B can BECOME Strep A, then even his "argument" takes another hit!

Interesting. Have you ever put her on abx? She has been on abx in the past for various things, such as urinary tract infections, but not since we started noticing the toe sucking. Not entirely sure how one would go about testing a dog for strep. Guess we could ask the vet . . . they'd be only too glad, I think, to milk us for some more $$$ for another procedure! Her health care is far more expensive than ours!

It takes some getting used to, doesn't it? I remember shortly after we started the abx. My son was in the bathroom, washing up, getting ready for bed. We heard him make a noise, and both my husband and I responded almost instantaneously, shouting up to him, "What's wrong?" For months, he'd been battling contamination compulsions so badly that the bathroom was a "horror zone" for him, and we were accustomed to him shrieking, crying, sobbing, shouting at himself, etc. whenever he was in there. We thought we were facing that again. Imagine our surprise . . . delighted surprise . . . when he actually CHUCKLED and answered, "Nothing! I'm fine! I just thought of something funny!" Then he laughed some more! Until something tells me differently, I'm taking ALL of these new, calmer, easier going, cheerful behaviors as only good signs! We could all do with some good news and a positive energy feed!

Yes, please Dr. T, for those of us in the back of the class? Is it likely that it takes a combination of the genetics AND the infection to result in PANDAS, or is the gene solely a non-PANDAS OCD component? BTW, our dog, a beagle, definitely has OCD; it's even occurred to me to have her tested for strep. Left to her own designs, she would probably chew/suck her toes off! Vet says there's nothing physical at issue, such as a fungus or whathaveyou. She's just a little nuts!

I would hope so! My son has been sleeping much better as well . . . and volunteering to turn in early when, pre-abx, he'd angle to stay up as late as possible, and then he'd toss and turn for hours in his bed and still not be able to fall asleep. Lately, though, he goes to bed earlier, falls asleep faster, and wakes up on his own, even before we have to rouse him to get ready for school! I know my son's healing, and it sounds as though your daughter is healing, too, so this easier, more restful sleep must be part of the process, don'tcha think?!

Yes, it's the Westin O'Hare. The hotel room rate is only $99/night, which is an absolute steal for this market! Ribbons? Green, maybe, for new beginnings . . . ?

I live in the area and plan to attend at least parts of the conference. Once we have a schedule, maybe we can set up a meet-and-greet ACN cocktail event nearby? I'd be happy to pull that together if we have the interest. Wow! Putting faces and REAL names to all these avatars!

Hi Shannon! So glad your son is improving! That is great news. I'm sure you'll be getting lots of mixed results here in asking about CBT and its effectiveness. In general though, I think the concensus is that, once the truly rough, deep phase of a PANDAS exacerbation has passed, then therapy can really help with developing coping skills. My DS12 has been through both CBT and ERP, since he has both generalized anxiety and OCD-borne contamination issues. The CBT definitely helped him up until he "fell off the planet" during his latest exacerbation; then, until the abx kicked in, I don't know that anything would've helped him. But once in a relatively calm, controlled phase, I think the CBT is invaluable. It teaches them coping skills that they can pull out on their own eventually, when they don't necessarily have family to lean on (like at school); and the therapy gave us as parents some very practical tools for helping him through an anxious event, too. Perhaps most importantly, though, the CBT helped my son separate himself from the anxiety . . . to see himself not as "damaged" by the condition/disorder, but as a whole, capable person who just happened to have this extra component of himself to deal with. Hard to explain, but through CBT, he was able to externalize the anxiety, both for himself and for us, so that he didn't have to be defined by it, even when it was raging pretty intensely. He even gave it a name, and then we were all able to call out the anxiety, blame IT instead of DS12, when it tried to take over. These techniques have helped him maintain his self-esteem and confidence, even during some tough times. Just find the right therapist; if you or your son don't hit it off after one or two visits, then move on and find someone else. We've found that the rapport, especially with kids our sons' age, is really important. In our case, both our CBT and ERP therapists have been men, and I think that, especially as they're entering puberty, this can be really helpful. Good luck!

I'd just like to say that I'm truly impressed that you found a PSYCHOLOGIST who would go there . . . wheat free, gluten free, etc.! Heck, if all that stuff really helps your child, he might put himself out of work! There are several threads here about the benefits of such a dietary path . . . I'm sure that there are lots of benefits. But I get your concerns, too. Especially for a large family, the impacts on costs, shopping options, preparing meals, the TIME spent preparing meals . . . its an overhaul! I think one of those threads has a web link for gluten-free recipes, etc. Good luck!

I'll add a third, fourth or 15th suggestion for a second opinion! Man, that's what makes this whole thing that much harder: that even the "experts" don't agree much of the time! Not on symptoms, on onset/periodic/timing, on treatment, etc. It just makes me want to lock them all up in one room for 48 hours and say, "FIGURE THIS THING OUT, AND THEN GET BACK TO US!" Dang! "Kids with PANDAS don't seem to have good times . . . just bad and really bad"?! What the heck is THAT about?!?! Then what are all the experiences noted here about?!?! Maybe her experience is tainted by always seeing families in crisis who, because of costs, etc. step down off of coming in to see her when things improve?! If there is improvement on abx, then I don't know how anyone can absolutely rule out PANDAS. I guess it makes sense to make sure that there's nothing else physically going on, but before you accept a purely "psychiatric" diagnosis (i.e., OCD and/or bi-polar), please, PLEASE get a second opinion! I'm speaking from experience here as my son was "diagnosed" as OCD for over 6 years, and then more recently with ADHD and other autism-spectrum disorders. Funny, abx seem to be taking each and every one of those "diagnoses" down for the count, slowly but surely! Hang in there, don't give up, listen to your gut (I wish I had sooner), and stay in touch with us here! Sending hugs, positive energy, Light and all good things!

I like Meg's Mom's booklist; we've read and used a number of those books ourselves, and there's almost always one or two techniques/key words, etc. that will work, depending on the situation. Our DS12 has been through both CBT and ERP. Interestingly, and somewhat converse to what some families have found, the CBT worked well for him when he was younger, but when he got older and hit his latest, heftiest exacerbation this past spring, it didn't do kaka! He was just too distraught to apply "cognitivity" to ANYTHING. He was just one big bundle of angst and anxiety. So, we moved him to ERP. I'm not certain that he could've made any use of the ERP, either, until we got the exacerbation under some level of control with antibiotics. Now, however, the ERP is a much more direct way of dealing with his compulsions and obsessions than CBT was, and I feel as though it helps him make faster, more tangible progress. I'm not sure where you are located, so it's hard to suggest a therapist that might be helpful to you. I might suggest that you go to the Obsessive Compulsion Foundation website, or your local branch of the national Foundation web site. Many will list local practitioners. That's how we found our ERP therapist, and we really like him.

Since my son's "Great Exacerbation of 2009," I've been combing the shelves at our local bookstore . . . Barnes & Noble . . . for ANYTHING new on the topics of PANDAS and/or OCD I haven't already read. "Saving Sammy" was the only new "resource" I could find. Given the growing discourse on the topic, though, that's not to say there aren't more in the works or a perhaps some coming via international routes, maybe? If you find anything, please post! Thanks!

What wonderful news, Ellie! You must be very excited and encouraged. Only having one PANDAS child myself, I can't imagine trying to successfully help TWO! Good for you!

Hi EAMom! Would you be willing to share that Stanford doctor's name? That way, if my ped has any further questions, maybe she could contact him, "colleague to colleage." Many thanks!

My son had some bad itching, also . . . mostly his legs, his arms and his back. He has very dry skin and has been prone to ezcema in the past, so I initially chalked it up to just dryness. Topical moisturizing lotions did seem to help to some extent. However, like your son, when he's agitated in general (over homework or something typically anxiety producing), the itching seems to get worse "come from deep inside." That, I see as a compulsion at work, typical of his OCD symptoms. It's as though he's feeding off the anxiety in that particular direction. When I can get him to calm down and focus elsewhere, the itching and scratching stop. More advice, frankly, since you can't always be right there to prohibit the scratching: keep his nails really short! Otherwise, he may really hurt himself and make his skin ripe for infection!

As for articles on long-term abx efficacy, I'd love to see those, also. Hopefully seomone here will be able to chime in. Scientific American Mind can be purchased at most of the larger, national bookstores; we got our last copy at Barnes & Noble. You can also purchase issues on-line; I think the cost is $7.95/per, or something like that. For myself, I would like to have articles on long-term abx use for any issues relating to PANDAS, so I suppose that would be both "the efficacy in PANDAS diagnosed children" and "minimizing the severity of GABHS triggered auto-immune responses." Though if the latter talks primarily about rheumatic fever, I'm not sure how much sway it will have with some physicians. My pediatrician is new to PANDAS and has thus far been willing to write us prescriptions and renewals for the abx, but as she's only made them available one month or two at a time, she's clearly not currently thinking that we're on a track for applying this treatment for a year or more. THAT's the information I'd like to get her. Thanks!

As for articles on long-term abx efficacy, I'd love to see those, also. Hopefully seomone here will be able to chime in. Scientific American Mind can be purchased at most of the larger, national bookstores; we got our last copy at Barnes & Noble. You can also purchase issues on-line; I think the cost is $7.95/per, or something like that.

Okay . . . a new one! DS12 returned to school for a full day today for the first time since October! Once we got him on abx, we've been slowly re-integrating him, basically one class period at a time. We are SO proud of him! And I am very grateful for having found this forum and "Saving Sammy," which, were it not for both, I know we wouldn't be in the positive place we are today. Thank you, All!!

Unfortunately, Marilina, I don't have any experience with a similar reaction to Augmentin. It sounds as though there could be some allergy to it on your daughter's part. Can you absolutely separate any other changes in her life (soaps, laundry detergents, other supplements, other medicines) from the introduction of the Augmentin to know that the Augmentin is the only possible cause of the rash/hives/etc.? My 12-year-old son has been on Augmentin for the last several months, and we've seen no similar reactions. I think you probably need to return to your doctor and see if he/she would agree that the Augmentin is behind those symptoms. If so, you could try a different antibiotic; many here on the forum have had success with Azithromycin and/or Keflex, for instance.

the clav makes the ammox stay in the system longer, thereby being more effective. Angela Also, I don't know if it's the clav that makes the XR "time release" or not, but given the experiences we've had and those I see elsewhere on the forum (particularly WorriedDad), I've got to believe that the "time release" component is a substantial one in this whole mix. If the medicine stays active in the system/bloodstream more consistently from dose to dose, then there's less opportunity for the "bad stuff" to procreate, attack, etc. Right?

1. Was our first known manifestation sudden onset? Looking back on it, yes, though we didn't realize it at the time. 2. Was the first onset on the heels of cold/virus/flu/etc.? Not that we can recall (have requested medical records dating back that far, but because our pediatrician changed practices, it's taking a while to get the earliest sets); what we do know is that he was constantly bringing home notices that a case of strep had been identified in his school, though he never demonstrated the typical symptoms of having caught it himself (he was asymptomatic). He'd just bring it home to me! 3. Is there a family history of tics/OCD? My husband has a mild case of OCD, and I would say that I do, as well, though I'm not certain that mine didn't become more noticable following my own bouts with strep throat. 4. What is your and your spouse's occupations? I'm a partner in a real estate consulting firm; my husband is an artist. Math did not come "naturally" to me, though it's become a big part of my everyday business life; hard learned, late bloomer, etc.! My husband, though an artist, is extremely analytically minded (he's a scientific illustrator), and math and science come naturally to him. Our DS12 is an absolute math whiz, always in advanced classes and frustrated by it only when he's required to "explain" his answer because he just "knows" most of the stuff, and trying to articulate HOW he knows it or why he solves a problem a certain way drives him crazy! 5. Do you have more than one child you think might be identified as having PANDAS? Nope.

We have yet to try the Augmentin XR. Just getting the Zith was hard enough! Hopefully Dr. T can presribe that when we speak with him. When you say give them time to kick in and work - what time frame are you looking at? Like I said, we saw some very immediate improvements in terms of some of his more "minor" behaviors; specifically, his contamination concerns diminished dramatically within the first 48 hours. But then, over the next few days, those seemed to come and go again while his overall emotional lability began to slowly improve. It's hard because you're still contending with some disruptive and extreme behaviors at times, so I took a page out of Beth Maloney's book and started keeping a detailed journal. For the first month, sometimes I really needed to go back to the journal in order to remind myself that he was improving; his meltdowns were less frequent, less severe, less debilitating, and he recovered more and more quickly from them. There were still some really tough moments and some meltdowns, but it wasn't over every little thing anymore, and it didn't "stop the clock" in terms of making our lives grind to a halt while we attended to him over whatever had set him off. In the second month, life overall became a bit easier. Again, he still struggled over certain things, but I would estimate the total meltdowns had been reduced by 2/3. He could "soldier through" some compulsions and obsessions, rather than be overwhelmed by them. As we've entered Month 3, I would say that has only improved yet more; he's taken on more responsibility and activities, but he's been holding his own emotionally despite our pushing him out of his comfort zone more and more often. I have to acknowledge, though, that alongside the abx, we're also still doing weekly therapy (ERP). So, long way of saying, we were able to track subtle improvement over the first month, but there were definitely days in there where I might've been tempted to say, "This just isn't working. We might as well quit and try something else." But by recording pretty much every little thing, when discouraged, I was able to go back, read and recognize that while the improvement was slow, it was still very real. That's why I say don't give up too quickly . . . give it a chance. From what I've read here, sometimes abx, IVIG and steroids can have very quick, immediate positive impacts, but they almost always slide back a ways in the subsequent days or weeks, and then the family has to apply patience again and work through issues that resurface, though you thought they were gone.

Have you tried months-plus of Augmentin XR? Despite some saw-toothed recovery patterns, overall, our DS12 IS recovering, slowly but surely. And I've seen similar reports on the efficacy of XR. Hang in there and don't give up! Consult the experts, keep trying different abx, and give them time to kick in and work. I don't know about you, but when we saw some almost instantaneous (within 2 days) results from the abx, we made the assumption the improvement would continue exponentially at that rate. It hasn't. But it has continued, just not as dramatically as the initial results would have led us to expect. I will keep my fingers (and toes) crossed for you!

Someone else here on the forum has posited that perhaps higher-dose abx like Augmentin XR 1,000 mg. have an anti-imflammatory affect which is positive with respect to PANDAS. Maybe that contributes? One thing I feel good about, particularly with XR, is that it is time-release, so the drug actually stays active in his system longer. So I feel as though he's getting more consistent coverage/attack power against the strep.

Once again, Dad, terrific news! Since we're on the same path . . . about a month behind you . . . we're encouraged by your results. Maybe Sammy's response was not just a fluke, and it CAN be repeated! Back to Y-BOCS: okay, we're finally on the right page, there. My son's been suffering with various OCD symptoms and "waxing" since the age of 6 and we have definitely seen the "Extreme" end of the spectrum via the Y-BOCS scale this past summer. He probably went off the chart at that point in time! So, all told, we've been on high-dose abx (Augmentin 875 and Augmentin XR 1,000, both 2x daily) for a total of about 4 months, with the Augmentin XR for about the last 2+. Tonight via the Y-BOCS, he scored an 18, or "Moderate." Looking back at where we were in August-September, I've no doubt that the abx is bringing him back! And I'd put my money on the XR, as well, being as his steadiest gains have been while on that dosage.