Worried_Dad

Our whole family was elevated on ASO - I came in at 443 last test, our youngest was 597. None of us has ever had a positive throat culture over past 3 years, and no overt symptoms of strep throat. I was put on a month of zithromax after initial elevated ASO (303) in March (but low dose - 250 mg daily). In June, when I re-tested, expecting that it would have declined, it had risen to 443. I was then prescribed a month of clindamycin (along with the rest of our family) to try to clear everyone at the same time. We're still waiting to re-test after the clindamycin. I'll let you know how it turns out for our 2 non-PANDAS boys (ages 4 and 10). P.S.: our local docs are baffled as well. Say they've "never seen anything like this" with entire family having elevated strep titers but no clear symptoms. Guess they should meet more of us wacky PANDAS clans, eh?

You might want to re-emphasize to this immunologist that Dr. Cunningham has repeatedly referred to PANDAS as "rheumatic fever of the brain"... and nobody in the medical community argues with the necessity for RF patients to remain on antibiotics well into their 20's to avoid re-infection. Here's a somewhat relevant post with an e-mail response related to RF that SF Mom received from Dr. Cunningham. http://www.latitudes.org/forums/index.php?showtopic=5685 Hope that helps. For our son, 1st IVIG generated huge improvement... but it all spiraled downhill again with another infection. After 3 rounds of full-dose IVIG, our son didn't sustain his progress until we added the "Saving Sammy" dose of augmentin XR. Good luck!

Our son's urinary frequency didn't go away until treatment with IVIG.

Hmmm... interesting. Sounds like Dr. K is evolving his stance on this, or maybe just adjusts it based on the individual patient's situation? Last summer, when our son was utterly crippled by PANDAS, Dr. K specifically advised us to do 2 full-strength IVIG procedures (1.5 g/kg over 2 days each time) 28 days apart (in June and July 2009). He said this was to make sure that we "really knocked the PANDAS out" of our son. The rules are pretty gray, eh?

Hi, Tenacity: Yes, these are both very scary symptoms. Our son exhibited these as well. He was originally diagnosed with SC so I spent a lot of time on the wemove.org SC forum back then. The SC literature specifically listed suicidal thoughts and transient psychosis as well. And the paresis thing - man, did that scare the heck out of my wife and me! In the early days, our son would occasionally just collapse to the ground without warning, unable to move his limbs or lift his head for several minutes. It totally freaked us out. A number of folks on the SC forums mentioned experiencing this: they called it "the rag doll effect." Thanks for bringing these up!

This combo would have less total clavulanic acid than 500 mg of aug, but I'd think it's close enough for rock-n-roll to get things started. Good luck!

We tried it a couple of years ago in addition to prophylactic abx (not instead of), because some folks on this forum recommended it. Tried it for several months but didn't notice any impact, so we discontinued. I believe others on here have seen better results with it, but not sure if it was to supplement abx or replace them?

I know this is a complex issue with lots of solid arguments on both sides. Don't begin to know the answer. But I do know this in our son's case: we started with a DAN doc (who also happened to be an LLMD from the ILADS site) who originally diagnosed our son with ARF/SC, later PANDAS. Under his guidance, we tried countless combinations of different dietary restrictions, supplements, and natural abx / anti-virals / anti-fungals, etc. None of them, unfortunately, did the trick for our son. Even the "standard" prophylactic dose of augmentin was a complete failure, and our son had his worst exacerbation while on 500 mg of augmentin daily. When we went to the "Saving Sammy" dose of XR, it was magic. We've been on that dose for about 10 months and have seen the most sustained, dramatic progress since the PANDAS nightmare began 3+ years ago. Personally, I'm inclined to believe it's actual infection that's the culprit, as SF Mom and others have said: our son's ASO rose (even while on the low-dose aug), and now it turns out that every member of our family has elevated ASO despite no "classic" strep pharyngitis symptoms. My PANDAS son and I have both had chronic sinus issues, though. Strep in the sinus cavities? Don't know.... But since we've been fortunate enough to find docs who will continue to prescribe the high-dose XR, we're staying that course for now. Certainly there are risks with the long-term abx. But our son's life was complete H-E-L-L before we started the XR, and he's enjoying a normal life again. Don't want to take any chances on messing that up! At some point, we realize we'll have to start ramping down the aug dose. But we plan to wait until the rest of our family has shown at least a clear lowering trend in ASO, and we plan to reduce the XR dose very gradually. And if symptoms resurge, we'll crank the dose back up. As Dr. Cunningham has stated, PANDAS is essentially "rheumatic fever of the brain." It's life threatening (or at the least quality-of-life killing). RF patients are kept on abx for years or even decades to guard against re-infection. If an alternative therapy can be shown to be equally effective with less risk, that's awesome. Until then, though, the abx are our son's lifesaver!!!

Wow - this is quite thorough, and I'd say you're well prepared. And you show great courage to share this with the community! Many of your symptoms are familiar, based on what we observed with our son; he was never able (or willing) to verbalize them this way, though. Establishing the correlation between symptom flares and the positive throat cultures (if you can do that based on your history) should help reinforce the PANDAS diagnosis. I didn't see any mention of antibiotics: were abx ever prescribed for you? Which ones, and did they help at all? That might be useful info for the doc. Side note: I believe that you and emmalily have made a unique contribution to this forum and the PANDAS community by providing insights into what it's like to experience this disorder firsthand. Your willingness to share this "insider's view" of PANDAS could be invaluable to other children, teens, and young adults who are struggling with it. I believe emmalily is blogging about this at an "undisclosed web location" ( http://www.latitudes.org/forums/index.php?showtopic=9320 ), and another young man whose mom is a member of this forum has created a PANDAS web site specifically for the PANDAS patients, not the parents ( http://pandas-syndrome.webs.com/ ). Maybe there's a way you could combine forces to forge a "safe place" for PANDAS sufferers to compare notes and provide support directly to each other? I'd imagine it would be reassuring for many young people to realize they're not alone in this. I know you've got your hands full already with everything you're dealing with. Thanks for giving us parents a glimpse "behind the veil" (or ring of fire) that PANDAS places between us and our kids. It's eye-opening!

Use the dropdown menu in the upper right (where your forum name is), select "My Settings," then click the "Change Email Address" button / tab on the lefthand side.

Yeah, that surprised me, too. Dr. K told us he's seen haldol put PANDAS kids "completely over the edge." Maybe it's a matter of being very precise with dosing and keeping the dose very small? Interesting....

Hi, Colleen: I was told to wait at least 1-2 months after the end of abx treatment before re-checking titer. We've only been checking ASO, which is what has been elevated in our whole family (including our PANDAS son during exacerbations). My 1st ASO (back in March/April) came back at 303 and I begged the testing doc for a month of zithromax. She agreed but would only prescribe 250 mg daily, which is pretty low dose in my case, I fear (I'm about 205 lbs). I waited a couple of months, re-ran ASO... and it had risen to 443. So I recently finished a higher-dose full month of clindamycin (at the same time the rest of our family did a month of clindamycin as well). Our goal was to clear everybody at the same time, then have all of our titers re-checked in another month to see if they're falling. If our titers aren't coming down, don't know what we'll do next. Beg for longer-term treatment dose for all of us? I'll post the results when we're re-tested.

If your ped is sympathetic, maybe you can get her to do a throat culture and run titers (ASO, Anti-DNAse B ) to check for signs of new strep infection? And I'm assuming "daily PCN" is penicillin? Maybe you can convince your ped to try several weeks (or longer) of a "higher-caliber" abx like augmentin or zithromax? Our son also relapsed on a "standard" prophylactic dose of abx. Penicillin has a pretty high failure rate, as I understand it, especially if it's not taken on exactly the same schedule and at least twice daily. Hang in there - you'll find relief for our ds!

Because our son was in such bad shape, Dr. K administered a steroid (decadron) at the end of each day's IVIG infusion for our 2nd and 3rd rounds last summer. So - while this was only 2 doses on consecutive days, not a longer burst or taper - Dr. K clearly didn't consider IVIG and steroids to be mutually exclusive. Anybody else know of a reason this is an "either/or" decision?

Completed survey, picking answers that seemed "best fit" where I wanted to check multiples but only could choose one. I think it's tough to come up with one survey that fits all PANDAS kids, since symptoms vary from exacerbation to exacerbation and many of us have tried so many treatments at so many points, with mixed results. Very excited to complete this, though, and grateful to you for creating it, sir. Can't wait to see your results!!!

Karen: Don't feel bad about feeling paranoid! Man, can I relate to your situation. After 10 months of "Saving Sammy" aug XR, our son is doing far better than he has in 3+ years. We hardly ever see signs of the "nightmare times" now. We should be ecstatic and relieved, eh? What's weird is - like you said - as our son has improved to the point where he's totally functional again, my wife and I have just kind of crumbled. It's like the adrenaline rush ended and we crashed and burned emotionally. We're utterly drained. And - if I see even a momentary sign of the old symptoms - my heart tumbles into my gut and I feel a wave of foreboding wash over me. Rationally, I know it doesn't make sense. And we're still on the high-dose abx, so our son should be protected. But I can't fight the fear when he coughs, or sneezes, or complains of feeling hot or nauseous or lethargic or of resurgent joint / back pain. Our son has now missed 3 years of school. We met with the admin staff and plan to start him back in the Fall with 2 hours a day (he'll be heading into 9th grade - what a rough place to resume, having missed all of middle school!). We're excited, and hopeful... and freaking terrified, too. I think we all do the best we can to help our recovering PANDAS kids reclaim a little bit of their lives at a time. But it scares us as much as them - probably more, because we feel less in control and know how easily an infection could plunge them back into the abyss. And - let's face it - if they sink back into the depths, the whole family sinks with them. Personally, I agree with sptcmom. The prophylactic dose of augmentin was a complete failure for our son. We plan to keep him on the treatment dose of XR for the foreseeable future, probably through the "peak infection" period of Winter and Spring. Nobody who has been through severe PANDAS ever wants to see their child repeat the experience if they can possibly avoid it!!!

Yeah, Dr. K is hard to pin down consistently on this, eh? On the positive side, he's the doc who first prescribed the "Saving Sammy" dose of XR for our son and he kept renewing the prescription for months when our son showed dramatic improvement. We've been using a local doc to write the scripts for the past 6 months, though, just because it's more convenient. Dr. K has not challenged us to drop the XR - especially in light of our whole family testing high on ASO titer - but I've heard from other parents that they've encountered a different attitude from him on this topic. I'd say that if you reiterate to Dr. K that you saw great progress for those 2 months while your son was on the augmentin - and that you're seeing that progress again after a week back on the higher-dose abx - he might change his tune, at least for your ds. He always told us "I learn something new from every patient." Maybe it's your son's turn to teach!

Hi, bmom: At the time that our son started the XR, OCD was the most devastating symptom, although he did have motor and vocal tics (the vocal was the worst!). We saw noticeable OCD symptom improvement right away. The tics receded more gradually and took months to completely disappear. (They - very - occasionally show up now, but mild and isolated, not for sustained periods of time.) Per Dr. K, Dr. L, and others, there seems to be a general feeling that tics are among the most stubborn PANDAS symptoms and the last to fade away. (PEX may be an exception in terms of tic relief, but we haven't done that.)

Well, we're even then. My son is almost your age, and reading your post made me vividly remember what he went through with severe anorexia after his 2nd PANDAS exacerbation... and that darn near made me cry. As LLM said, this is a dangerous symptom. Your mom and stepdad need to understand what you're going through and how critical it is that you get that doc appt ASAP. You may already be doing this... but ibuprofen (advil, motrin) seems to reduce inflammation and provide symptom relief for a lot of PANDAS kids. That's an OTC med that you can pick up locally without a hassle, if you haven't yet tried it. Forcing the issue with your stepdad was an excellent idea. Don't let him off the hook! FYI: my son also paced relentlessly during his "anorexia" phase (almost non-stop, until he could barely stand from the fatigue). He wore a track in the rug in our basement. That went away with PANDAS treatment. Can't wait for the day when you can post about how completely you've defeated that b&w bear!

EA - don't lose faith. You are an amazing young woman and you will ultimately beat the damned PANDAS into submission and reclaim your life! I understand how frustrating it must be not to have a PANDAS expert clinician to guide you. But - even if IVIG or PEX aren't feasible at the moment - don't discount the abx option. My son is 14, had utterly crippling symptoms (couldn't leave our house, could only eat meals in my office, couldn't eat if he "saw" the food prepared or touched in any way or if we didn't place it perfectly on the paper towel on my office desk). He did have IVIG, but we believe the real key to his recovery has been the "Saving Sammy" dose of augmentin XR. Other teenagers who have had severe, long-term PANDAS (like MomWithOCDSon's ds) have shown remarkable progress just from abx of sufficient dose and duration. Maybe you could get in to see a doc from the list on this forum or on Beth Maloney's site who is in your area? If you could just get a trial of high-dose abx for 30 days or more (augmentin XR, zithromax), it's possible that this could give you noticeable relief. Our son actually told us within 2 weeks of starting the XR that "this is making a big difference, I can feel it." Don't mean to promise anything. As you know well from reading the posts on this site, every PANDAS sufferer seems to react differently to treatments. But I think the abx option is more obtainable from a local doc who's open-minded, and it might help until you can line up IVIG or PEX. A steroid burst is another option that might be easier to get prescribed locally by a sympathetic doc. Some kids on here have seen major symptom relief from that as well (although not always lasting). You inspire so many people in this community with your courage, sense of humor, intelligence, and determination to control your own destiny against this insidious disorder. Hang in there - you're going to win in the end!!!

You might want to check out these threads. Hope they help! http://www.latitudes.org/forums/index.php?showtopic=7122 http://www.latitudes.org/forums/index.php?showtopic=8559 http://www.latitudes.org/forums/index.php?showtopic=9193 http://www.latitudes.org/forums/index.php?showtopic=7699 http://www.latitudes.org/forums/index.php?showtopic=7144 http://www.latitudes.org/forums/index.php?showtopic=6680

This is so cool, it's POLAR!!! (Polar bears are cool... PANDAS, not so much.)

Per local doc recommendations, we tried our son on both risperdal and zyprexa (among other psych meds) at different times. For our PANDAS son, these were bad news - made symptoms worse. Psychiatrist kept insisting we increase the dose of zyprexa when our son was not improving until he had a dystonic reaction which scared the heck out of us. We tried zoloft, too, but it made OCD symptoms worse (well documented side effect of SSRI's for many PANDAS kids). Biggest warning I'd give: beware the benzos, like ativan and klonopin, for anxiety. Ativan completely pushed our son over the deep end into suicidal nightmare territory, and Dr. K warned us that he has seen this numerous times with his PANDAS patients. I know some parents on the forum have had better results with these meds. Every child's situation and body chemistry are different. I'd just advise extreme caution if you start a psych med: start with a very low dose and increase dosage very cautiously. One ped neurologist told us that after a brain injury like that induced by PANDAS, "it's impossible to predict how any given psych med will affect a given patient. It's a gamble."

Ditto! After our experience with augmentin XR over the past 10 months, I'm frankly terrified at the thought of ramping down or eliminating the abx. Our son's finally got his life back - can't contemplate things sliding back into the PANDAS abyss....

Personally, I don't think there's any doubt of some genetic component to PANDAS. I have Crohn's, an autoimmune disorder; my wife's family has a history of MS. At one point, Diana P was gathering case histories for Dr.'s Leckman and Cunningham from a group of families in her "PANDAS network." She found that 19 of 22 reported a history of autoimmune disorders.