MomWithOCDSon

Is it possible, also, that your emails are never being received? Have you tried asking his receptionist/assistant if she can view any of your emails on the office's end? Frankly, this just sounds out of character for Dr. K.'s overall practice. But I know that, on occassion, one web/email service provider will "block out" anything coming from another provider (like "earthlink") if there have been incidences of spam being generated by that blocked provider. We've had that happen with our home email provider in the past, so I know it can happen. It's possible that whatever company hosts Dr. K.'s email has, for whatever reason, blocked out any and all "XXXX@earthlink.net" emails, in which case he would not have every even received your send, even though it doesn't bounce back to you with an error.

So glad things seem to be going smoother these days, Melanie. Perhaps you've turned a corner. All good thoughts coming your way!

We saw Dr. K. in his office on Thursday. This was the first time we'd met him, and I have to say, all the positive reports about him appear 100% true. He was great with DS, great with us, a really good listener, a really good explainer, and excellent at "tweaking out" DS's symptom set. I had first reached out to him in October 2009 via email, to which he promptly responded; my email had been very short, though (a total of three sentences), and his response was equally brief. Amazingly enough, HE HAD HELD ON TO THAT EMAIL and matched it with my DS's file when I finally called his receptionist and scheduled our appointment just this past April! Therefore, from all appearances, he is thorough and responsive, but clearly very busy.

Interestingly enough, if I'm reading this right (and that's a big "if," given my scientific deficits! ), antibiotics in the class of Augmentin (b-lactam) are one class for which little data regarding anti-inflammatory properties is available. In fact, the paper says, "One of the major differences between b-lactam antibiotics and the other groups seems to be the lack of anti-inflammatory properties of b-lactams." And yet, many of our kids have done well on Augmentin. This seems to add further support to the idea that it is the clavulanic acid in Augmentin that provides and immune modulatory/anti-inflammation benefit. OR . . . is it that clavulanic acid has an anti-depressant/anti-anxiety effect? Check this out: Clavulanic acid And this: Enterically coated amox-clav (XR) and anti-inflammation in colitis

Peg -- Our DS does not have tic behaviors, but given that CamK/taurine study, I thought it was worth trying taurine here, as well. The first couple of days with the taurine were fine and his short-term memory seemed to be improving, but then about Day 3 he seemed to be activated . . . more anxious and fidgety than we have seen in quite a while. When I did more research on taurine and found out it's one of the major ingredients in those "energy" drinks like Red Bull and the like, I started to wonder if that was what was behind the hyperactivity. So we stopped giving it to him. You haven't seen with your DD in that regard? I'm wondering if we gave up on it too quickly, or attributed some behaviors to it that really didn't belong to it. Anyone else use taurine on a regular basis? Any thoughts?

Sorry, Meg. I know it's hard to miss out on one of those typical milestone experiences. You'll probably keep second-guessing yourself for a while about the call you had to make, but trust your instincts. You were thinking not only of your son and your family, but the other kids and their families as well. You did the right thing. We made our preschool graduation as PANDAS had not hit our DS yet, but as the years went by, there were so many similar events where, not knowing what we were dealing with, we tried to "habituate" DS to participating in these programs, being "normal," doing what the other kids did. When I look back on it now, I think we're lucky he doesn't have more emotional scars than he does from all of that. There were the summer camp end-of-session programs where he would stand in the right place and mouth some of the words to the songs and try to pretend to be enjoying himself, with tears running down his cheeks by about half-way through. There was the wedding he was supposed to be the ring-bearer for and became suddenly terrified, and I almost dragged him down the aisle because, having been laughing and goofing around just moments before, it read as simple willfulness and obstinance, rather than a sign of illness. You are wise and fortunate to be so much less clueless at this point than I was! Don't be too sad . . . this too shall pass.

I don't know that there's actually a puberty "cut-off" for PANDAS, per se; it's just that, definitionally, it's a pediatric syndrome. I guess if it first arose post-puberty, it might be referred to as PITANDS, rather than PANDAS? There are some adult PANDAS walking around, though; a few of them participate in this forum. There are some indications that hormones that surface around puberty can actually exacerbate PANDAS symptoms, and I think you're right . . . puberty is generally a multi-year process. There is another thread here about PANDAS, puberty and treatment protocols; as I recall, Dr. K. in particular has concerns about the efficicacy of PANDAS treatment post-puberty, and yet on threads here you'll see that some 17, 18 and 19 year-old boys and girls are experiencing effective treatment. Now, is that because they are experiencing delayed or prolonged puberty phases? Or is it because, like most things regarding PANDAS, there are the "rules," and then there are the instances in which all the "rules" seem to be dashed to heck?!?! Truthfully, I suspect that, for many kids, the conclusion of puberty can bring significant relief to PANDAS symptoms, if we could all just ride it out that long. Hormones can give you a run for your money, even without any additional extenuating circumstances, and they increase inflammation, which is a hallmark of PANDAS. So getting past that very active hormonal phase, along with the emotional and mental maturation, probably sees a lot of people feeling some relief from the major exacerbations our kids are experiencing pre-puberty and mid-puberty. Does that mean you "can't get PANDAS" past puberty, though? I don't know for sure, but I'd think not. I'd think it's just more likely both your body and your mind would be better capable of handling the onslaught by that point.

Cool! This was a local news program? Any idea how someone outside the original market area might view it? Does the station have video links on a web site or anything? Thanks!

Reallygood day Teacher says much more focused and calm today.He doesnt know hes taking the med .But dan has good and bad days so well see.Day 3 Oh and he came home took out his math work and just did it .Didnt fight about it and even got 1 wrong and was ok (usually gets mad when he gets one wrong) Maybe you're on to something, here! Keep the faith, and hold tight!

This is a fairly common "autism spectrum" trait and is typically related to Aspberger's Syndrome. Now, if autism and PANDAS both have brain inflammation in common (which, given some of the research and personal experiences, it seems to), then it would figure that you could wind up with these traits under either "label."

Why is she refusing? Are they causing gas or stomach upset? Or is it some sort of "principal" thing, as in, she's old enough to make that kind of decision so she's doing it? How long has it been since she started refusal? If you give it a day or two, do you think she might come back around to realizing that she feels better taking them than not? This is a tough one!

Oh man, it will depend on the psychiatrist and how well-versed they are. Anxiety is such a broad-based, spectrum thing, that they could wind up recommended everything from SSRI's to tranquilizers. But remember, YOU'RE the parent! You get to agree that he will or won't be taking a given medication. There are some with relatively short half-lives and more immediate results that may help your DS get through a particularly intense bout of anxiety or a panic attack, like clonapin or clonansepam. But an antidpressant like an SSRI will take WEEKS to build up to full efficacy, and it may not work at all for a PANDAS kid. There's also the possibility that, particularly if given in too high a dose initially, the SSRI could further activate some of the behaviors rather than mediate them (Dr. Tanya Murphy's study). I would tred carefully and do follow-up research before I filled any prescription for psych drugs. But what kind of PANDAS help are you getting right now? Do you have a doctor who recognizes PANDAS and will prescribe treatment for the underlying medical condition, like abx or prednisone? I doubt that there's a single ER in this country that is capable, at this point anyway, of receiving a kid in your son's condition and identifying it as a PANDAS or PITANDS episode, so barring a major fever or other physical manifestations, those doctors aren't going to prescribe anything for the underlying infectious agent, and even if they did, it would likely be only a 10-day course, which more than likely won't be sufficient in your son's case. You might need to take at least one meeting with the psychiatrist, just to satisfy your doctor and the ER that you, as a "fit" parent, are following up on recommended care. And who knows? You might get lucky and this particular psych might be aware of PANDAS and be willing to help you get the care your son needs. But, again, you get to make the decisions so if you're not comfortable with what this psych or any other doctor puts out there for you in terms of treatment, then move on and find another one.

Congratulations on getting into the program and yes, absolutely, behavior therapy can help with the OCD, especially once your kid is not so anxiety-ridden that they can't face the various exercises; it seems the azith has helped you sufficiently there. Just stick with it at home as well as within the bounds of the program, and you will see results, almost guaranteed!

Yeah, I would say one week would be a good time frame to start trying to measure Intuniv's impact, if any. It may be minor, but maybe you can get a concensus from your DS, a trusted teacher or two, and your own observations. We have tried LOTS of other meds, but this is the only one specifically designated for ADHD or ADD-type behaviors that we've tried. Does it help with the OCD? I think so, to an extent. It doesn't set aside some of the more intense behaviors (for us, that's contamination), but it does improve his focus on what he's SUPPOSED to be focusing on, so that curbs the OCD tendency to get distracted and obsessed by other things in his environment at a given time. Feel free to PM me if you want to talk about any specific medications; ufortunately, I think we've been through the gamut, frequently to no avail. But there have been some that helped DS through some of the rougher moments.

This is where the medication thing falls appart,1mg for a 140 lb 16 yr old? I was reading (again) on the web about case studies and like noone was on 1 mg it seemed everyone was on more. Will it help at 1mg? How long does it take? Im not giving him the klonipin meanwhile,MD said to hold off unless we have to go somewhere and he really is anxious,Like a party or something. Melanie While you may not want to wind up at 1 mg., it seems wise and common to start with a low does and see what it does to a person before increasing. My 130-pound DS13 is on 2 mg. now, but he was on the 1 mg. for about one month before we moved it up to 2 mg., and though the maximum dosing, I think, is 4 mg., we've left it at the 2 mg. mark for the last 4+ months. As for how long it takes to see results . . . that probably varies by person, also, but we saw it much quicker than several weeks. It was a matter of 2 or 3 days before he was reporting feeling more focused and less antsy in class. Then it was about 7-10 days before his system adjusted to the modulation of his blood pressure the medicine can cause and he stopped feeling drowsy in the afternoons. We're all so anxious to find a "magic bullet," but give it a few days and see how it goes. Maybe your doctor will want to up the dose eventually, too.

There is one in our area, as well! Great to know, in the event we go down the IVIG path. Wonder if they, too, accept insurance (assuming insurance agrees to pay for the process at all, that is) . . . .

Thanks for that! I've been searching the web for a convincing link between abx and anti-inflammatory affects thereof, so glad to add this to my arsenal!

Glad to hear it!

I know that Dr. T. has one, and then there are the Facebook groups, Lynn Johnson's foundation's forum, etc. But like you guys, my time and energy for this stuff is limited . . . on some days more so than others (frequently, it's my favorite form of procrastination at work ), so I've decided to focus on one venue: this one. It's so very active, with lots of knowledgable participation. Why divide the great energy? Frankly, that's been one concern of mine as I've seen folks strike out for other pastures . . . that the wellspring of knowledge and experience here would become diluted as folks got more involved elsewhere and less involved here, as a result. I am very happy to have noted that, at least thus far, that hasn't come to pass! I feel like the old, empty-nester Mom, begging her kids to get jobs that let them stick closer to home! PLEASE don't go!

So, Melanie . . . how was DS's night and morning with the Intuniv?

Okay, let's try this link instead: Sex Hormones and Inflammation Hope it works this time! This isn't the same mouse study as I attempted to cite previously, however, but another sex hormone/inflammation link. I cannot seem to find a working link to the mouse study, but you can "Google" it.

Sorry! I just got a cookie/session error, as well! Man! I'll have to see what I can find to recreate it or improve upon it. Basically, this was a study done -- in Sweden, I think -- with mice in which they injected hormones and found increased and prolonged inflammation in the injected set as opposed to the control set. Nothing very fancy, but just more mind-fodder when it comes to puberty and our kids. I'll try to get a new link up and running in the morning!

Suzan -- When our DS had a new ramp-up of his PANDAS behaviors about 4 weeks ago, despite still being on abx, MANY of the responses I got here made a possible correlation with seasonal allergies. I would have to say that, since we began some severe allergy intervention on the heels of that advice, he has largely returned to his previous slow, steady improvement climb. So I am now a true believer in the power of allergy control as it relates to helping control exacerbation. Our DS, like your daughter, takes Zyrtec in the morning, along with Flonase nasal spray. We're also giving him curcumin and a doubled-up dose of quercitin (natural antihistamine which is frequently packaged with Vitamin C and bromelaine). On additional advice from here on the board, despite some beautiful, breezy weather in our neck of the woods, we've shut the house up and bring all our air in through our HVAC system with its HEPA filtration system; as a result, we've noticed a significant decrease in dust and pollen sitting on the dark furniture, so it seems obvious that there would be less air-borne for DS to inhale, as well. Interestingly enough, we're ALL sleeping better with the house closed up, and even our dog (whom the vet has said seems to suffer from an allergy to various pollens) has stopped her weeping eyes and itching ears! I never would've thought it would make such a difference, but it is palpable. Finally, I believe it was Kim here on the board who informed me about the "allergy load," and how, basically, you try to start off the day with the lowest possible load and keep it as low as possible throughout the day because once it builds up, it is hard, if not downright impossible, to back down the symptomatic results. So we've been giving DS Benedryl every night, as well, even though he's not really stuffy anymore, with the thought that we'll keep his "allergy load" low throughout the night and start the morning as close to zero as possible. Again, there has been a very strong correlation between his behaviors and his allergies, and with the extremely high pollen counts we're seeing around here, it's not really any wonder! Based on our experience, I would definitely say go back to your allergy meds and do what you can to control the allergic triggers in your DD's environment. We haven't seen anything but positive effects -- no negatives!

I've been told that, in the U.S. at least, erythromicin is rarely prescribed any more; apparently, too many strains of bacteria have become resistant to it. I know this is what I was prescribed many times as a child for various upper respiratory and/or ear infections, but now I'm aging myself, eh?

We, too, have Just Right OCD in our house, and it is definitely worse when DS's overall PANDAS health is worse. That being said, perhaps because he's older and he was diagnosed with OCD long before he was diagnosed with PANDAS, we see that some age-appropriate behavioral interventions are helpful, if for no other reason than they help build skills and tools that can be at his disposal should there be a future exacerbation, or a similar circumstance. Our local OCD Foundation web site has these terrific "Expert Perspective" articles about various aspects of OCD. For instance, despite having lived with it for years, I didn't realize that it was DS's OCD that was translating into "Obsessive Slowness." Once having read that article and sharing it with some of his teachers, etc., many things became clearer in terms of that particular behavior on his part. You might try "grazing" through some of this site to see if there's some information here that would helpful in terms of some gentle, age-appropriate interventions while you're in the process of getting the PANDAS health issues under control. OCD Foundation of Chicago - Expert Perspectives Again, either the behavior itself entirely, or at least the intensity of the behavior, subsides in our DS when he's responding to auto-immune therapy through abx, probiotics, anti-inflammatories, etc. But having this information on hand and in mind when those moments occur in which he's less in control of the OCD has been very helpful. Good luck! Nancy