Worried_Dad

Ditto - very cool!!!

Hi, elf: Yeah, our PANDAS son got strep again while on a prophylactic dose of augmentin (500 mg daily - he's 14 and about 110 lbs) and had his worst exacerbation yet. Not until we increased the dose to the "Saving Sammy" level (augmentin XR - 1000 mg twice daily) did he start to make consistent progress with no further flares. I can't begin to explain the science, but our experience is like yours: the "standard prophylactic dose" of abx did not adequately protect our son from further infection. It may be that these kids' immune systems have unique vulnerabilities to GABHS that render normal abx dose / duration ineffective... or the strain that triggers PANDAS may be especially hard to eradicate. I've seen both theories. You might be interested in this thread. I sure found it educational: http://www.latitudes.org/forums/index.php?...c=5520&st=0

Cool - just ordered 'em too. Thanks for the scoop, Kim!

We only did the 5-day prednisone "mini-burst" per Dr. K. For us, the improvement was dramatic... but the slide back downhill was just as fast. Within a few days of stopping the steroid, our PANDAS son was back in the nightmare zone. Dr. K did tell us that the length of time post-burst during which symptoms remain milder varies widely from patient to patient. I think he mentioned that one patient maintained improvement for 60 days post-burst.

Many PANDAS experts (e.g., Dr. L) believe that ARF, SC, PANDAS, and other post-strep autoimmune disorders are part of a spectrum. Our son went from ARF / SC diagnosis (with symptoms best fitting that) to classic PANDAS symptoms (and diagnosis) with subsequent exacerbations. If you haven't already, you might want to check this thread: http://www.latitudes.org/forums/index.php?showtopic=8911

Our PANDAS son was originally diagnosed with ARF / SC. His initial symptoms were straight out of the Mayo list below. He had great difficulty walking or doing anything physical, had the migratory joint pain and shortness of breath, the rapid pulse, etc. At times his muscles would feel so weak that he would collapse to the ground: we called it the "rag doll effect." Abx definitely helped him considerably. Your daughter's case sure sounds hauntingly familiar!

Hi, Wendy: Nope, I was never treated with abx for Crohn's. Back when I was diagnosed, there were some theories about viral or bacterial triggers, but nobody was even sure that infection had anything to do with Crohn's. I did have a few courses of prednisone over the years to moderate symptoms during flares. So far (about a week into clindamycin), no dramatic change in Crohn's. I know abx can cause intestinal problems for some people, but - if anything - I'd say my Crohn's is at least slightly better. Interesting, eh?

Crohn's isn't easy to diagnose, unfortunately, or wasn't when I first got sick (about 20 years ago). I ended up at Mayo Clinic in MN after a year with no diagnosis locally. Mayo based the diagnosis on clinical history and the results of a colonoscopy, where they checked for the telltale presence of intestinal lesions. Not fun... but it was a huge relief to finally know what I was dealing with!

Not surprising to see this in a family history of autoimmune disorders... but I myself happen to have Crohn's. Always figured this increased our son's vulnerability to PANDAS....

I second the motion... and treat it aggressively. I tested with an ASO of 303 in March, so the doc put me on a month of zithromax but low dose (250 mg daily). I waited 2 months after the end of the zith - per Dr. K recommendation - and had titers redone. My ASO had risen to 443! It's hard for me to believe that this upward trend is benign, and I've been fighting serious sinus congestion for quite some time. So I begged our family doc to prescribe a month of "eradication dose" of clindamycin. The rest of our family had already started this, because all of our ASO titers were elevated. I won't feel comfortable until we see a trend in the right direction and all of our ASO levels are at least moving downward. In an e-mail, Dr. K echoed this caution: he said we "absolutely could not risk another strep infection" for our PANDAS son. Why take a chance? Elevated ASO at least indicates the possibility of a current strep infection, and with vulnerable PANDAS kids in the house, better safe than sorry!!!

Kelly and Vickie, U ROCK!!! This is simply awesome, and your efforts in making this happen were amazing. We can't thank you enough! Now crack open that bottle of champagne, relax, and give yourselves a break. You earned it!!!

Hi, EAMom: Too soon to know if the clindamycin is working for my wife and other 2 boys, I'm afraid. They're only a week or so into their 4-week prescriptions. Local doc has recommended we wait at least 2 months before re-testing ASO for them. My titers were both done at the same lab (Quest), so the 303 --> 443 trend should in theory be meaningful. Knock on wood, our PANDAS son is still doing great! He's doing a Programming class at a local Math & Science Center this week. We tried this 2 summers ago as an experimental prep for returning to school, and it was a disaster: when the time came back then, he fought against going and ultimately only made 4 of the 10 sessions. This time, he's actually excited about going, has a great attitude, and is even into doing the homework assignments. Totally different experience!!! Thanks to all of you who let me know your background or info on clindamycin, including the PMs. It really helped to know that folks like Dr. T recommend this abx for the stubborn strep cases. I begged for a script from our family doc (who prescribed it for the rest of the family) and he agreed! So I start my own 4 weeks of clindamycin tomorrow. Thanks again for the feedback. Invaluable!

I really need the advice of the "scientifically-minded" members of the forum. After my ASO came back at 303 in March, I was able to get the local doc to prescribe a month of zithromax. It was "minimum dose" though, I think: only 250 mg per day. It did seem to help with my persistent sinus congestion. But it didn't last. Per expert advice, I waited 2 months before re-testing ASO titer to see if it was at least coming down, since it should have declined in that time period (I've been told) after a full month of zithro. So I called yesterday to get the results. It's gone up to 443! Talk about the wrong direction... yikes! More frustratingly, this local doc told me it "wasn't a cause for concern" and that - unless I or other family members have pharyngitis symptoms - there's no need for further abx. That does not make any sense to me! Virtually every member of our family has now tested positive via ASO titer, and we all live together in the same house. Seems more likely that I was just immediately re-exposed. And if we aren't all cleared of strep at the same time, isn't there significant risk that we'll just keep re-infecting each other? I'm planning to push a different local doc to prescribe clindamycin for me, just as he did for my wife and non-PANDAS sons. I've heard this abx is very effective for eradicating stubborn strep. Does this make sense? Am I nuts in thinking this is in fact major "cause for concern" and that I shouldn't just ignore the rising ASO titer?

Our situation is a bit complicated. Our son had done 2 full rounds of IVIG with Dr. K 3-4 months prior to starting the XR. We had seen some very slight improvement in that time, but only maybe 20%, and we were getting desperate. Within a week of starting the high-dose augmentin, we saw obvious progress, and our son commented on it as well. No worsening of symptoms, just improvement. Within a month, many OCD behaviors had melted away. His progress was pretty steady from that point on, not much of the "sawtooth" pattern. So was it the combo of 2 rounds of IVIG and high-dose XR that did the trick? Wish I knew. But - in any event - we didn't see a flare of symptoms after starting the "Saving Sammy" dose.

From one PANDAS dad, thanks a bunch! This has been the best Father's Day I've had in 4 years. Our PANDAS son is 95% better, enjoying life again and having a "normal" kid summer. Still a few challenges... but the difference between today and the past 3 Father's Days is stunning! Here's praying that every dad on this forum has some happy, hopeful moments to cherish on this day, and that we all see signs of progress for our afflicted children!!!

Migrating joint pain (migratory polyarthritis) was our PANDAS son's 1st symptom. It's a classic rheumatic fever symptom and is (I believe) common in children with SC or PANDAS.

Hi, Eileen: FYI - you can archive older messages when your inbox gets full so you don't lose them. You can delete them but e-mail the consolidated list of deleted messages to your regular e-mail address in either HTML or Excel format, so you can store them in your local e-mail client on your PC and review them at any time. I do this periodically, and it works great! Check out the Help info about Archive Messages here: http://www.latitudes.org/forums/index.php?...DE=01&HID=6 Hope that helps!

Hi, Donna: Never seen it abbreviated as ABA... but our PANDAS son tested high on both ANA (which the doc called Anti-Nuclear Antibodies, and which we understood to be a general indicator of an autoimmune condition) and RF (Rheumatoid Factor - indicative of inflammation) at the very beginning, before we had a diagnosis. He retested high on both of these at intervals afterward.

Just wanted to share that - for our son - 3 rounds of IVIG alone were not enough to beat back PANDAS. An extended course of high-dose augmentin XR (1000 mg twice daily, same dose as Sammy Maloney in "Saving Sammy") made all the difference in the world, and we've seen sustained progress for 9 months on that dosage. Here's a post about our son's situation: http://www.latitudes.org/forums/index.php?...ost&p=40568 And here - later in the same topic - is an explanatory post from our resident scientist, Buster, as to why this might be crucial for some chronic cases: http://www.latitudes.org/forums/index.php?...ost&p=40577 Hope this helps. You might benefit from reading that entire thread, which includes Buster's original post and lots of other great stuff from him and others. FYI, our entire family recently tested positive for elevated ASO titers, so an infected family may explain why some PANDAS kids need higher doses of abx for much longer durations to stave off a relapse.

U kidding me?!? You know he's gonna say yes to that one!

Hang in there, Dale. Our PANDAS son did 3 rounds of IVIG at OBSC with Dr. K. On Day 1 of each 2-day procedure, he told me he couldn't do it and that we had to go home. After Day 1 of the 2nd round, he insisted he could not go back for the 2nd day and we wound up spending that whole night in the hotel room without sleeping... but we made it through Day 2. The good news: Dr. K and the OBSC staff are absolute experts at dealing with the unique challenges of PANDAS children. They always find a way. And - on the positive side - our son always did much better on Day 2 than Day 1. Here's hoping Day 2 is smooth as silk for you, and that IVIG leads to dramatic improvement!!!

I think you're right on the money, Fixit! Personally, my wife and I believe that our son never completely cleared his strep infection(s), which would explain why that 1st round of IVIG worked great for 2-3 months but then things went downhill again. Also, the fact that every other member of our family has elevated ASO could mean that our poor PANDAS son has been living in "Strep Central"! Our son's ASO titer did rise with each exacerbation, but we haven't had him retested since he's made all this progress. We need to do that to see where things stand. Also, we've been considering whether to re-test his CaM KII with Dr. Cunningham to see if that's come down as well. (Might get our middle son tested for CaM KII, too; he seems to show mild early signs.) I'll post updated test results as soon as we have them!

Good question! Dr. K did extend the XR prescription for us multiple times and never mentioned a specific "end date." But we now have a local doc prescribing this just for convenience (it's hard to get hold of Dr. K sometimes for a refill). So we've been on the XR for 9 months now. Frankly, we're not even going to consider lowering the dose until the rest of the family's ASO titers come down (all are elevated), and Dr. K agreed via e-mail that this is critical for our PANDAS son's protection. Based on his e-mail comments, I think he's fully supportive of continuing the "Saving Sammy" dose until we're sure the rest of the family are cleared of strep. I sure don't want to panic anybody, and Dr. K has been a lifesaver for so many PANDAS kids/families. It seems like this is an area where Dr. K is still assessing the data - I don't think he's certain at this point how much abx is necessary for how long, and maybe it varies widely from child to child, based on the situation?

My wife and 2 non-PANDAS sons were just started on clindamycin in the wake of their elevated ASO titers. You're right: it smells terrible! Luckily, our boys are going along with the program and taking it on schedule... at least so far!

We have great respect for Dr. K, but I feel compelled to sound a warning here. Our son (just turned 14) has done 3 rounds of IVIG with Dr. K in Chicago. We, also, were placed on the "standard" prophylactic dose of augmentin (not XR): 500 mg, once per day. Bluntly put - it did not work for our son. He caught several more infections while on this dose, including one which triggered his 3rd and most severe PANDAS exacerbation ever. Per Dr. K, we did 2 full rounds of IVIG (1.5 mg / kg over 2 days, repeated again after 28 days) last summer. Our son did not make much progress after these procedures. That was when - out of desperation - we begged Dr. K to try the "Saving Sammy" dose of XR for our son (1000 mg of XR twice daily). Only then did we see significant progress, which has continued steadily on that dose. So - based on our son's painful experience - I don't believe 500 mg of augmentin once a day is sufficient to protect a PANDAS child, even in the wake of IVIG. And our son is only about 110 lbs. If your son is 158 lbs, then 500 mg daily seems way too low to me. Just one opinion... but one formed after 3+ years of very painful experience. If you're spending the money on IVIG, I believe it's prudent to do everything possible to minimize the risk of subsequent infection!