MomWithOCDSon

Oh, I see. Well, I guess we created our own "intensive program." Initially, DS was having a therapy session 3 times each week; then after about 3 weeks of that, we stepped it down to 2 times each week, and after another couple of weeks, we stepped it down to once each week. We're now going in only once every 2 weeks, with daily homework in between. We are very lucky to have found someone not only good, but to whom DS relates so well. Thanks for the input, and here's wishing you and your son continued success.

I'm not sure which programs you're speaking of but would certainly be interested in some referrals. In general, no, not now, anyway, because he's in such a better place these days and the OCD isn't preventing him from living his life anymore as it was prior to the abx. At its worst, though, we did try an outpatient program at a local hospital which was a dismal failure; it wasn't strictly for OCD or anxiety, though that was one of the ailments the program was supposedly designed to address. Unfortunately, it didn't, and we pulled him out after one week. The only other program I'm aware of in our area is strictly an inpatient one held in Wisconsin, specifically for kids with OCD; I just think that would be traumatic for him, even at this stage. In general, I'm a little wary of the heavy-duty ERP "immersion" programs, at least as I've seen them represented in documentaries and talk shows, because they seem very heavy on the "Exposure" but very light on the compassion. DS has always responded well to one-on-one, so even though this ERP therapist can be somewhat confrontational and certainly insistent at times, he does it with kindness and compassion, and he's building a rapport with DS so that he trusts in what the therapist is trying to accomplish. I'm not sure he would feel the same way about a group program because I'm not sure I feel the same way about a group program. Does that make sense? We are, however, considering an OCD camp for teens that's held every summer outside of Seattle; I hear good things about it, and it is only a four-day thing, so it might not be overwhelming for DS.

Our son had been diagnosed with regular old OCD for so many years before we discovered PANDAS and abx, it seems inevitable that some of his OCD behaviors are now essentially "learned," and I just don't think that, even with the vast improvement the abx is bringing to the table, he's going to be able to shelve all of them entirely without therapy. He had been doing cognitive behavior therapy (CBT) for the first 4 years or so of his OCD diagnosis, off and on, and while it seemed to help him quite a bit during the "waning" periods, when he was "waxing" or, we now believe, in exacerbation, it didn't help much at all. Honestly, the only service at that point was the guidance it gave US as his parents to know to try and steer him in the right directions, coach him, encourage him, rather than always lose our patience and barrage him with our frustration. We began the ERP shortly after we started abx, having found this therapist through the OCD Foundation's web site. I have to say, this has been really terrific for him. This therapist helped us wean him back into school full time, and through the sessions and the homework, he's helping DS confront and dispense with some of the lingering OCD behaviors, one by one. I would highly recommend it because I think this skill set can help them not only in their recovery, but in getting through another exacerbation should it come (though, Lord willing, it won't!).

And congratulations on the new addition to your family, Dad! I grew up with a menagerie, so it's hard for me to think of "home" without pets, so it's really exciting to see our kids not just accepting but actually interracting with them again! DS has always "loved" our smelly, greasy, sheddy beagle, but enduring her sensorily has been especially hard for him the last few years. So, while it's a small thing to some families, it's giant for us! So glad your son is having such a great experience, and I hope to see ours follow suit in time. He's been talking about wanting a small terrier of his own -- a breed that doesn't shed, isn't inherently greasy and supposedly doesn't smell. But I told him we need to be sure he's ready for that. Seems as though he might be on his way, just like your boy!

Yes, as a matter of fact, he has. Honestly, he's frequently exhibited some ADHD-like behaviors, but the OCD behaviors were always so "front and center," we found we needed to focus primarily on them. Now, as so much of the OCD has been set aside, the ADHD-like responses seemed to kick up a notch. When he got back into school, for instance, he would report having trouble sitting in his desk or paying attention to the teacher, not because he was feeling anxious (like before), but because he just wanted/needed to be moving around. At first we thought he was just finally "feeling better" and even "feeling his oats," but it seemed to really interfere and make the school day tougher. Plus, we were seeing the same tendencies at home, especially with homework. Almost 3 months ago now we started Intuniv, a non-stimulant ADHD medication along the lines of Straterra. It really seems to have helped him; within a week he reported not feeling as "antsy" in school, and we saw the positive impact at homework time, too. It is Tenex, which lowers blood pressure, so we're monitoring his blood pressure pretty closely and we make sure he eats regularly, too. For the first few days he reported a bit of a pendulum swing -- actually feeling sleepy toward the end of the school day -- but that evened out and subsided within the first 7 to 10 days of the medication.

Our DS13 has been steadily improving on abx, but his OCD had achieved such intensity prior, we're realistic about how long it might take to dispense with all of the behaviors, or even the idea that he may live with some of them . . . hopefully to a much lower level . . . but still have to live with them to some extent for the rest of his life. So, along with the abx, DS is participating in ERP therapy, inclusive of "homework" the therapist suggests for him based on some of the behaviors . . . predominantly contamination concerns . . . that DS admits to during therapy sessions. And when the opportunity arises, we try to throw in some "homework" of our own to help him confront some of that, as well. We have a beautiful little beagle, but she's a beagle, and they are inherently musky and greasy, no matter how much you bathe them! We have pictures of him petting her, even hugging her, when he was 2 and 3 and she was a puppy, but until tonight, he hasn't actually laid a hand on her for at least 5 years. In fact, he has had fits about her brushing up against his pants legs at times because of her "greasy coat." So tonight he did some exposure therapy as designated by his therapist and then he wanted to go take his shower a bit quicker after that exposure than is typically permitted. So, I made a deal with him; I suggested he just touch the dog for 5 seconds, after which I would let him go ahead and get his shower. It took a lot of coaching and encouraging, but he did it! After more than 5 years of avoiding her like the plague, he actually pet her and stroked her! The poor dog was floored! But I'm gonna give her her "Therapy Dog" certificate any day now!

There must be something in the air today. Our DS13 hit a bump today, also . . . the biggest, longest meltdown we've seen in a long time. And it was over virtually nothing, too. I remember thinking, when I woke him up this morning, that his pupils looked larger than they had when I tucked him in last night, despite the lighting being identical. But he did recover, and he's held it together for the remainder of the day, too. Hang in there! This saw-tooth stuff can be demoralizing, but we just have to keep our eyes on the big, long-term picture. Your DD will return to her better state soon!

I didn't see so much the hyper-activity draw, but my DS was definitely drawn to the negative energy when the PANDAS was raging! I took to calling him Half-Glass-Empty-Boy, he had such a negative take on EVERYTHING! Whine and moan!

Since so many of us have kids on long-term abx . . . can you clarify something? Is "drug-induced lupus" reversible then? You stop consuming the drug, and the lupus recedes or cures or whatever? A little scary that there is another potentially serious side-effect to long-term use, other than that ubiquitous "super-bug" everyone's always warning you about!

I don't know if Dr. Latimer will do a phone consult if you cannot drive to meet her; I know some of the other doctors will (like Dr. K.), and I've heard, additionally, that Dr. K. will also consult with your local medical team, if that's the way you want it. You obviously feel there's a chance in your getting through to this neuro regarding PANDAS treatment, or you'd move on to another doctor, correct? I can appreciate that, as I really wanted to stick with my son's existing medical team if at all possible, so long as I could get them on board. Fortunately, his pediatrician came willingly, his psychiatrist is a harder nut to crack, but he has also grudgingly come along because I made it very clear that I would move on to another psych if he didn't and, in the end, he really does want what's best for my son. He's just a snob about the science. Have you gathered and presented the neuro with all the information, studies, etc. you may have gathered over the years, from sites like this one as well as others? I presented both our doctors with organized binders with everything from Dr. T.'s musings to Buster's charts to the Columbia mice study. I also bring my journal with us to every meeting, detailing behaviors, impacts (or lack thereof) made by medications and supplements, etc. I think because I am so serious about it and have taken the time to document all the moments of my son's life that they're not privy to, they realize I'm not generalizing or manufacturing or exaggerating, and that makes them more comfortable with granting me the assistance I'm seeking. I guess it doesn't hurt to try! Just based on our own experiences, I would ask for Augmentin XR, and a minimum of one month's dosage (1,000 mg., twice daily). I would commit to following up with him (via phone message, email, whatever) at one week to let him know what, if any, changes you see in your kids based on the medication. And I would lay the groundwork for expecting to be able to renew the prescription for at least another couple of months as, given your kids' ages and the length of time they appear to have been contending with the strep response, anecdotal evidence points to an extended need for antibiotic intervention. Do you feel the Zoloft and/or Straterra are making your son's behaviors worse? If not, I would probably leave those be for a bit, just so that the evidence of the abx helping (hopefully) will be crystal clear to you and the doc. Then, once you all can agree that the abx is having a positive impact, maybe then you could begin the wean off of Zoloft and/or Straterra. Full disclosure: my son remains on a low dose of Luvox which he had begun prior to our trying abx. Because I've seen no signs that it is harming him, I have left it as is for the time being; I hope to begin weaning him of it by summer, if not before, but we're having so much success right now that I am reluctant to change anything else up for the time being. Also, my son takes Intuniv which, like Straterra, is a non-stimulant ADHD med; the psych suggested it after we'd begun the abx and, I believe, after having read the copy of "Saving Sammy" I'd given him. It seems to be helping him in terms of focus with school and homework, so we will likely leave that in place for a while, as well. Good luck to you!

A double "AMEN" and "Hallelujah!" to that! If I had a nickle for every time I've heard the phrase "isn't proven" since I first heard the term PANDAS, I could probably fund not only my own son's treatment, but at least a dozen others as well!

OMG! I am SO sorry! We've been there, done that, so I know how you're feeling, really I do! Maybe you can give BOTH yourselves a break . . . to heck with homework, tests or even school. How will it hurt to take a couple of days of dialing down the stress while you get the test results and hopefully a better treatment answer? Hang in there!

Just watch your wallet, Meg's Mom. That sweet-talker IVIG's got expensive tastes! From what I hear, too, IVIG can be a two-timer (or even more)! Right now, abx and I are going steady; he's been nothing but true blue so far!

I applaud anyone and everyone who is willing to speak out. And until it's definitively proven to me otherwise, I will always assume that all of these folks . . . parents, kids, researchers, doctors . . . are prepared to do so in the best interest of all of us impacted by PANDAS, with little or no regard for personal gain. There's just too much we don't know, and the personal stories vary so broadly, and the expert recommendations can vary dramatically, too. So we need to, as someone on another thread recently recommended (I think perhaps it was LLM herself), be open to all the information available, be ready to "date" it, perhaps "break up" with it and "date" something else, maybe "go steady" with it, but realize that a lasting, committed "marriage" may be a few years off yet! So, in the meantime, I'll listen to everyone! And glad to have so much opportunity for some of the forum's own to step out and have their stories told!

I agree with Pixiesmommy, based on a series of email exchanges I've had with Dr. K. Have a phone consult first, and maybe drop him an advance email with a quick, succinct background. I can't remember your child's specific age or history, but I know that, especially with older kids, Dr. K. very much feels that IVIG is required. I may not have this straight, but I believe that Worried Dad was able to convince Dr. K. to do long-term, high-dose abx with his son. What I cannot specifically recall is if Dr. K. agreed to this BEFORE or AFTER IVIG. You might try PM-ing him to inquire. And I'm right there with you on this. I'm not afraid of IVIG in terms of safety or anything like that. I'm just not certain that it is necessary for my DS, particularly given how far he's come with abx alone. And then there's the disparity in opinions among all the leading docs with respect to treatment, dosage, frequency, etc. It's all a little unnerving.

I frankly don't know; guess we could Google them. They are on the speakers' list, alongside the names more familiar to us.

Registration is open, and what they are calling a "tentative schedule of events" is posted, as well: IOCDF Program Schedule It appears as though there are a few sessions that would be of interest to some folks here, such as: - Dr. K with Laura Matheos and Keith Moore, "When Children Suddenly Wake Up with OCD - Could It Be PANDAS?" - Cunningham and Leckman, "Sudden Onset OCD - PANDAS Research - Looking Bank & Moving Forward!" - Page-Voth, Latimer, Maloney and Nicolaides, "Catching and Curing OCD: An Overview of PANDAS" - Hoffman, Kothari, Moritz and Storch, "Researching OCD with Co-Morbid ADHD, Tic Disorders, and Autism Spectrum Disorders" The latter three are all in the "researchers" track, while only the Dr. K. presentation is noted for "families and those with OCD," but I think, if you attend, you can attend the research track, too, can't you?

Thanks, Smarty, yes I have heard of Marianne Williamson, though I don't have any of her books. I really appreciate the angels reference, though; actually gave me chills! Thanks again, and all the best to you and everyone else here for the good wishes and support. We'll continue to try and return those gifts in kind.

So sorry, Melanie! This really stinks! Hang in there and soak up all the light, positive energy and hugs from afar!

Never tried ativan; did have one bad experience with Abilify, never to be repeated!

Wow, okay. Nothing like that in our experience, thankfully . . . just dubious that it is having any effect at all. Any advice as to how one goes about finding an "integrative" physician? Is there an association or some other affiliation we could look them up under to find one in our area, do you know? Thanks!

Chemar -- What "psychotic side effects" did you see with Luvox? Our DS has been taking it (albeit at a pretty low dose, given his age and size) for nearing 5 months, and though we've not seen anything of that ilk (so far as I can tell), we're with you on not wanting him on it if we can successfully wean him from it. Albeit, there's a little trust there from us, given the success with Lexapro, and there's some fear about shaking up what's working for now, too. But still . . . Your doctor who's helped you with the supplements and their dosage (like 5HTP, samE, etc.), is this a naturopath, a DAN! doctor, or just a standard pediatrician?

Meg's Mom -- I've checked the web site and I cannot find any programming list regarding actual speakers, PANDAS-related programming, etc., so it appears you have some "inside scoop." Do you know when/if/how information pertaining to the actual speakers and program topics will be posted? I'd like to forward it on to some others, but want to make sure they can confirm the information for themselves. Thanks!

Lotafaith -- While there are many on the PANDAS forum (along with an article by Dr. Murphy) who will tell you that SSRI's and other psychiatric medications can be counter-productive for PANDAS kids with OCD symptoms, I will say that this hasn't been our experience. Since the PANDAS science is still evolving, I'm not sure if anyone knows for sure that there isn't also a genetic or organic component to OCD/anxiety that the PANDAS infectious component merely exacerbates, or what. Anyway, our son was originally diagnosed with OCD at age 6 (he turned 13 today); at age 7, he was given Lexapro, an SSRI which is a different formulation of the same components found in Celexa. It worked beautifully in terms of giving him leverage against the OCD and anxiety. With the Lexapro, he was able to fend off most of the compulsions (contamination stuff, mostly, but also perfectionism in school, etc.), and without the compulsions driving him, his general anxiety decreased, also. Unfortunately, I guess SSRI's are somewhat infamous for "poop-out" over the longer term, and when the OCD flared dramatically last May, the Lexapro didn't help him at all. He wound up having a classic panic attack. The doctor gave him clonansepam, which helps quell the anxiety but isn't supposed to be a long-term medication itself, either. They also tried risperadol for him which, again, takes the anxiety down but actually made DS sonambulent. Meanwhile, they weaned him off the Lexapro and onto Prozac, which didn't seem to do anything for him at all. Because his anxiety was just growing, they reached for the heavy mallet -- Zyprexa -- and he took that for a while. Again, I think it quelled his anxiety, but it had a whole host of side-effects (ravenous appetite, frequent urination, dry mouth) that we disliked immensely. Finally, they moved him from Prozac to Luvox. Honesly, I cannot tell if the Luvox is helping him at all at this point, but I'm 99% sure it isn't hurting him. Meanwhile, he's been on high-dose abx for almost 5 months, and this is the treatment we've seen to be most effective in the face of this latest burst of OCD on his part. We continue the Luvox because we don't want to mess with what appears to be working. In the end, given our experience, I am a pretty big fan of Lexapro. But the other OCD medications, I'm just not sure about.

Yes, our DS13 has done this for years; he was first diagnosed with OCD (at 6), and we have subsequently discovered the PANDAS component to it all. This is one behavior that has essentially evaporated with abx treatment. In kindergarten, his teacher used to tell us about how he would just "stare" for periods of time; we thought her choice of words were odd, as we'd seen it at home and more or less recognized it as him "zoning out" or "tuning out." Later on, as his vocabulary and self-awareness grew, he would describe it like your daughter: he'd "get stuck" and couldn't tune in or move on because some compulsion or obsession was commanding his attention at the time. And even if he could forego actually acting upon the compulsion at that point in time because of where he was (classroom) or what he was supposed to be doing (like taking a quiz), he would just stop in his tracks, unable to complete the task at hand or refocus. Yes, I would call it an OCD-type behavior.