Worried_Dad

Sigh... yeah, tragedy is the right word. Hopefully, the tide is turning. Kind of stressed today: our local docs are running out of patience with the long-term augmentin XR and want to discontinue, right as we're heading into peak strep season, our son's back at public school (after 3-year absence), and every other member of our family has unexplained elevated ASO. I just don't understand how the medical mind works, I guess.

Dr. Harry Chugani (director of pediatric neurology at DMC) has an excellent rep, although he doesn't specialize in PANDAS / PITAND. He does order IVIG for some patients with abrupt onset neuropsych disorders, and Dr. L (one of the "PANDAS Big 4" on here) told me she considers him "one of the best around." Might be hard to see, though, since he's the dept head. You could also try asking this question of the Michigan PANDAS Support Group. Here's a post on about that group (e-mail based): http://www.latitudes.org/forums/index.php?showtopic=8846 Good luck!

Wow - this is fascinating. Yeah, when our ds 1st got the SC diagnosis, we were told it would resolve on its own in time. All the web resources we found (like wemove.org) also called SC "self-limiting." None of them ever broke this down by symptom, though, or talked about the psych symptoms separately from the neuro symptoms. So we naively just waited for the magic moment when our son would recover... and instead, he wound up with a PANDAS symptom explosion that made the original illness seem mild. This makes a lot more sense. Wish I had known it in 2007, when the docs told us it would just go away. Thanks, Buster! Nice find Buster! I hope you kicked that info. back to the "self limiting" chorea crowd--

You GO, girl! Amen and hallelujah!!! It absolutely drives me up a wall when a "mainstream MD" (pediatric neurologist, rheumatologist, infectious disease specialist, ER doc) takes one look at my miserable, suffering son and tells me the problem is "not medical." Huh? Since when is mental illness not medical, regardless of the underlying cause? It may or may not be physiological, but it sure as heck is MEDICAL!!! You wait 2-4 months or more to see a specialist, and they take one look at a child displaying psych symptoms and cannot WAIT to rush you out of their office. Of the endless series of local specialists we saw, only one of them ever ordered a single test of any kind (ECG after our son had already been diagnosed with ARF/SC by another doc), despite our son's fevers and explosion of neuropsych symptoms out of nowhere following high fever. I recently read the book "Asleep" about the encephalitis lethargica epidemic in the 1920's. That book explained that neurology and psychiatry were one discipline in those days - neuropsychiatry - and nobody back then even questioned the logic of an infection triggering psych symptoms. Mind, brain, and body were treated more holistically. Then neurology and pyschiatry split and built a wall between their domains. I think patients have been suffering as a result ever since....

I think you're referring to Dan Geller, who was instrumental in treating Sammy's PANDAS? Dr. Geller is a child psychiatrist at Mass General. I've heard that he's expensive, though, hard to get in to see, and as a psychiatrist isn't comfortable prescribing things like abx, steroids, IVIG, PEX. He might be helpful with residual OCD, though, if that's your hope, Lisa. Although I think most PANDAS kids see a psychologist who specializes in OCD therapies (CBT/ERP) vs. a psychiatrist, who generally focuses more on prescribing psych meds to manage symptoms. Beth Maloney certainly raves about Dr. Geller, so he might be worth a try!

Hi, Joan: Posted about clonazepam (klonopin) on your other thread, but FYI, we also tried zyprexa for a while. It did not help our son at all - seemed to make things worse - and when we significantly increased the dose (per child psych's direction), it triggered a dystonic reaction for our ds. Our son's emotional state improved significantly after we tapered off of both the zyprexa and the ativan (another benzo, similar to clonazepam). Every kid reacts differently, but wanted to share our ds's experience with you. Praying that IVIG #2 brings your ds relief!

So sorry for your ds and family, Joan! FYI: our son reacted terribly to all of the benzos (valium, ativan, klonopin/clonazepam). These are supposed to be anti-anxiety meds, but they made him much, much worse - magnified the rages, hyperactivity (non-stop pacing), crying jags, and overall emotional lability to a terrifying level. Dr. K advised us to taper off the ativan prior to 1st IVIG, and within 2 days of discontinuing, our son's emotional state was immensely improved. (Still had massive OCD, but the rages, crying jags, and endless pacing were gone.) I'm no doc - and every PANDAS kid is unique - but thought I should share this. For our son, at least, ativan and klonopin were like pouring gas on a bonfire.

Interesting theory, but our ds's experience muddies the waters a bit. When he 1st became ill, he showed virtually no OCD (at least that we recognized). His main symptoms were migratory polyarthritis, muscle weakness, difficulty walking, seizure-like chorea episodes that evolved into tics, and cognitive fog. (Definitely some emotional lability, too.) Most docs considered him more Tourette's or "transient tic disorder" at that point, and nobody mentioned OCD. Then his 2nd big exacerbation hit, and overnight he turned into the "OCD-predominant" variety of PANDAS with the classic symptoms for that (massive contamination fears, anxiety, anorexia, urinary urgency, rages, crying jags, etc.). Third exacerbation was more of the same, so exacerbations 2 and 3 were completely unlike #1. To us, it sure feels like this is all part of a spectrum, and symptoms vary from flare to flare based on which part of the basal ganglia bears the brunt of the inflammation? Don't know. But docs like Dr. L felt that his initial symptoms were more SC, whereas his later symptoms were clearly PANDAS. This disorder is so damned slippery!!! I completely agree. In fact, it was Sammy who set me definitively on the PANDAS path, after having had my PANDAS inquiries repeatedly waved off in the early years of our DS's OCD diagnosis. The more I read families' stories here, as well as some of the research (most notably Cunningham's), the more convinced I become that OCD-predominant PANDAS and tics-predominant PANDAS may ultimately be found to have different ideal treatment protocols and recovery trajectories. If (and I suspect there is) a genetic component to each condition with infection serving as the "trigger," it seems entirely possible that getting at that trigger and abating the condition will require treatment "tweaked" to the basis of the condition itself, including the innate genetic component, doesn't it?

Hah - our sons seem to be on parallel paths, Nancy! Our ds is also back to school now for the 1st time in 3 years, after almost a year on the Saving Sammy dose of XR. He missed all of middle school and had to jump right into high school (gulp!), but he's doing fine so far (only 3 classes for now). But - like you mention - his one residual symptom is... homework pace. (VERY slow compared to the old days, but what he completes, he does well. We've told him not to worry about it and get done as much as he can. We're just ecstatic that he's attending public school again!) We haven't had the guts to lower his augmentin dose yet. Partly because the rest of the family still all have elevated ASO, even after a month of clindamycin for all of us. Please let us know how the dosage reduction goes for your ds, because we'll likely follow in your footsteps once we get rid of the "strep epidemic" in our house.

We've kept our son on the treatment dose (1000 mg aug XR bid) since IVIG, because prior experience with the prophylactic dose (500 mg aug daily) wasn't good. Knock on wood, we haven't seen a ramp-up in symptoms since going to the higher dose, which our ds has been on for about a year now.

Hi, Mati's Mom: So happens I just had a CT scan of my sinuses! All in all, as I understand it, the typical radiation dose for this type of scan is very minimal and low-risk (increased lifetime risk of cancer < 0.1%, and even that is theoretical for the low doses used for this type of CT scan). Here's a really good Google Answers post on this topic: http://answers.google.com/answers/threadview/id/742075.html Always a judgment call... but when you're trying to track down stealth strep infections for a PANDAS child, I'd personally vote that the potential benefit outweighs the risk. Good luck!

Yeah, it's all confusing, isn't it? The "classic" PANDAS presentation is episodic and sawtoothed: the afflicted child has an abrupt, dramatic increase in symptoms after a new strep infection, then very gradual improvement (but maybe not back to 100%) before another infection triggers another drastic resurgence. Unfortunately, the clinical gurus have found that few kids actually present with this classic pattern. Our son didn't: he essentially had "chronic" symptoms that did not improve without major treatment intervention (high-dose abx, steroids, IVIG). Dr. T actually showed a really cool slide with several graphs on it at his IOCDF presentation. He showed that some kids have this classic "sawtoothed" pattern, but others may be exposed to infection so constantly that the flares become so close together that there aren't really any visible "remission" periods. So if there's a carrier in the house, or if there are co-infections (something chronic other than strep), or other immune deficiencies, etc., the graph of the child's symptoms can make them appear chronic. Makes diagnosis confusing for most docs, and this probably contributes to the damned "controversy" around PANDAS / PITAND. And does PANDAS resolve with age / post-puberty? That's the question all of us parents would love to see answered! There is some "anecdotal" evidence that this is the case, but then again, we have members on here (EmersonAilidh, emmalily) who are (courageously!) fighting this disorder in their mid to late teens or beyond. Unfortunately, the studies on this haven't been done or published, and nobody really knows. We just hope!!!

After 1st IVIG, our son started eating like a HORSE - more food than I could imagine at a single sitting! In our case, we were massively relieved by this, though. He'd been anorexic before that and had lost almost 20 lbs (which was about 20% of his body weight). Almost seemed like he was "making up for lost time" and genuinely enjoying meals that had been pure torment for him prior to treatment. So - as long as your dd maintains a reasonable height/weight ratio - I'd say that's good news!

That seems to correlate with our son's experience, too. He's been on Saving Sammy dose of aug XR for almost a year now. We haven't had the guts to try lowering the dose yet, and don't know when we will, because he's so much better. Full-long-term abx and steroid bursts (2) have been enough up to now. We are waiting to see if they will be enough again, or if more is needed (such as IVIG.) I share our experience with full strength abx as these were very much a part of the entire healing process and maintenance of her health, much more then "just" preventative I believe-- There is no doubt that full-on antibiotics controlled OCD and ticcing for our child.

I'm pretty sure that Buster and EAMom have posted that their ds's immunologist (from Stanford, I think?) reassured them that this kind of zithromax dose should be safe for many years. EAMom, do I have that right?

Personally, I don't think this will work, based on our son's experience. He didn't have regularly scheduled IVIG, but we did 3 rounds with Dr. K. First round helped tremendously for 2-3 months, but then we had another severe exacerbation after reducing abx to a low prophylactic dose (not eliminating completely). Rounds 2 and 3 (28 days apart) did very little (20-25% improvement, max) for 3-4 months until we added the Saving Sammy dose of augmentin XR. We've since discovered that the whole family has elevated ASO, so that might explain why IVIG didn't work as well in isolation for our son. So my fear is that IVIG is ineffective or temporary unless underlying infection is eradicated. I wonder if that's why some folks (besides us) have reported underwhelming results from IVIG? If you were certain that the PANDAS child and whole family are definitely infection-free, then maybe IVIG alone would do the trick. Strep is so ubiquitous, though, I don't know how you shield the post-IVIG child from re-exposure. And, as others (and Dr. Swedo) have pointed out, after the autoimmune response is set in motion, any viral or bacterial infection can cause symptoms to resurge. Just one (paranoid) parent's perspective. Take it with a grain of salt!

Here's an old thread that might help: http://www.latitudes.org/forums/index.php?showtopic=6027

Myco P is Mycoplasma pneumoniae - a bacterial infection in the broader "PITAND" category that can cause PANDAS-like symptoms.

Welcome, and I hope you find the answers you need for your child! Yeah, finding the diagnosis that makes you feel confident you're on the right path is so agonizing for these types of disorders. So many similarities in symptoms, so many different triggers. I think you're right to be suspicious of the ramp-up following an infection, though. Nobody on here can diagnose your ds, but we can share our own experiences. My son, too, was diagnosed with transient tic disorder at one point following a very high fever (104). We, also, didn't test for strep because the school told us that flu was rampant and we assumed that's what it was. Several weeks later, our son started complaining of joint pain that moved from joint to joint, muscle weakness, gradually had more difficulty walking. At that point, the local doc suspected juvenile rheumatoid arthritis. Then 6 weeks later, our son started having severe seizure-like episodes that at times became more tic-like. That's when the JRA diagnosis started to morph into many other things, depending on the specialist we saw: transient tic disorder, TS (despite the lack of any vocal tic at the time - that came later), psychogenic movement disorder, GAD, etc. Long story short: an LLMD tested for Lyme (negative), then diagnosed acute rheumatic fever with Sydenham's chorea after ASO titers came back highly elevated. Treatment dose of amoxil for months led to the tics subsiding. But once we stopped the abx, another infection triggered the worst symptoms ever (including vocal tic, massive OCD, anorexia, etc.) and diagnosis changed to PANDAS. So - if you haven't already gone down this road - it may be beneficial (and give you peace of mind) to ask your doc to do some testing to eliminate a PITAND cause for your ds's symptoms. Strep testing (throat culture, ASO and Anti-DNAse B ), Myco P testing, and IGeneX Lyme testing might at least eliminate possibilities and make it easier to feel confident in the TS diagnosis. Every situation is unique. Our son's OCD and tics (and many other PANDAS symptoms) became so completely debilitating that he had no quality of life. We were desperate, and that led us to 3 IVIG's and almost a year now of high-dose augmentin XR that have gotten him back to 95%. So - for us - the extremity of his condition made it critical to try new things. If your ds is functioning ok, I can see why you're torn about how many medical procedures to subject her to. And if your older daughter outgrew her tics without intervention, that makes it an even tougher call. Overall, though, the testing seems minimally disruptive and provides some potential answers. If you have a cooperative doc, might be worth a shot. Best of luck!

Yep, migratory joint pain, muscle weakness (especially the legs), and difficulty walking were among our son's 1st symptoms. Those are pretty classic on the rheumatic fever end of the ARF / SC / PANDAS spectrum. I used to spend lots of time on an SC forum, and this was very commonly described there.

How does OLE compare to oil of oregano? Can they be used together, or is that overkill?

No worries, Fixit - I agree with you. Didn't mean to imply that we consider the Cunningham test to be "gospel." It's just another piece of evidence that helps corroborate our gut feel. For our oldest (definite PANDAS, way better after 11 months of Saving Sammy dose of IVIG), this provides a little extra assurance that he's on the road to recovery. For our middle son, the fact that it's well above the "healthy non-PANDAS" level confirms that we at least need to be vigilant (when added to his elevated ASO and emerging symptoms). It's only one piece of the puzzle... but I have to admit that the Cunningham test results 18 months ago really did give my wife and me that extra burst of determination to keep pursuing PANDAS treatment after every local doc we saw refused to even consider that diagnosis. If we had listened to those local "doubting docs"... man, I can't even imagine where our oldest would be right now. As you point out, he's still recovering from a traumatic brain injury, he's not 100%, and he's still at risk. I don't personally think PANDAS is "cured," just managed. this is what i'm saying about the score...how is 120 different from 117 or 105 for that matter..something isn't right..you know/knew that already...but your waiting on the number to tell you??? this is where this study scares me..if it becomes the determining factory so if your recovering son gets to 117 is he not pandas anymore..is he fully recovered..i dont' think so and i think you will still be seeing things ds' 1st was 105..i could have told you he was pandas as he still wasn't right..some tics...i think the number has to get to what ever normal is to be a signal that all possible triggers are probably gone did i really need to get to 160 to say i told you so???? And this is in no way aimed at you worried dad...it's just a discussion/a thought

Yeah, we just did this, too - re-tested our PANDAS son and did 1st test of our middle son, who's starting to show some symptoms. Good news: our recovering PANDAS son's CaM K II is down from 187 to 125. Not as good news: our middle son's CaM K II was 117, which is just below the "positive" level of 120. Like you said, Mati's Mom, it feels good to take precautions. Our middle son's still on the borderline, I guess, and maybe his currently mild symptoms (slight motor and vocal tics, mild OCD, anxiety, enuresis) won't get any worse. But if we see any signs of deterioration, you can bet we're gonna jump on it with abx in a hurry. Don't want to ever go through the nightmare of "exorcist syndrome" again!

Ditto. A doc prescribed valium to help our son sleep, since he'd been having a terrible time at night. The valium made him hyper and he ended up pulling an all-nighter whenever we used it. All the benzos (valium, klonopin, especially ativan) were disastrous for our son.

I'd say take the inspiration from where you can... but channel it into positive actions to get the medical help you need and deserve. After all our bad experiences with local docs, it's very hard for me to keep my cool sometimes - it's my son's life at stake, for god's sake! But I've learned that getting too "in their face" too quickly pretty much dooms any new doc appointment to dismal failure and another burned (or napalmed) bridge. Wish I could find it, but somebody on here had posted a link at one point to a doctor's blog entry where he candidly discussed why many doctors are intimidated by patients with chronic illness. He pointed out that these patients remind the physician of his limitations, make him feel like a failure for not being able to "fix the problem," and often confront him with somebody who has done extensive research and knows more about specific, rare conditions than he does himself. It was illuminating to gain a little insight into the doctor's psyche and understand their side of this. It doesn't begin to excuse the way you (or my son, or countless other innocent, afflicted kids with PANDAS / PITAND) were treated. But it reminded me that these rare, complex, multi-disciplinary disorders are hard on the docs, too. So take a deep breath, count to 10, and try to find that special doc in your area who is willing to be a true partner in your care, not a condescending autocrat or a stubbornly dismissive skeptic. And if you find him or her... do everything you can to nurture that relationship! (We had one of these docs - an LLMD - but he passed away suddenly in 2008, and we haven't found his equal in our area since.) Good hunting, EA!