Worried_Dad

Wow - our son had the same thing happen. Four - 5 weeks after IVIG #1, he developed his 1st ever vocal tic. Hope this is brief and mild for your ds!

I hear you. Tics were among our son's first symptoms at age 10 - started with violent seizure-like episodes of choreiform movements that landed us in the local ER 5 times, gradually evolved into less severe motor and vocal tics. He had these in some form throughout much of the years from 11-13. Don't recall them worsening on the XR, but they definitely spiked after IVIG.

I think some of us will just end up searching and spending time on more than one forum. Although the PANDAS/PITAND forum is our family's "home base" here, I've also browsed and posted on the Tourette's and OCD forums at various stages when we were exploring different options for our son. I think quite a few folks on the PANDAS forum "cross-post" when it's appropriate. Thank goodness for the "Search All Forums" option!!!

Knock on wood, the tics are completely gone now! Don't remember exactly, but I believe it was about 3-4 months after we started the augmentin XR (6-8 months after IVIG rounds 2 & 3) when we noticed that they were history. Hope you see this for your dd very, very soon!

For our son, tics were indeed the most stubborn symptom and the last to go. IVIG didn't make his motor tics significantly worse, but he did develop a brand-new vocal tic after IVIG #1. As a rule, I've heard folks like Dr. K and Dr. L say that PEX seems to be generally more effective at resolving tics, while IVIG is generally more effective at resolving OCD. Hope things improve very soon for you both!

This is how our son's illness started, a few weeks after a very high fever: migratory joint pain, muscle weakness, difficulty walking. Six weeks later, the seizure-like chorea episodes began. These are classic symptoms of acute rheumatic fever / Sydenham's chorea, which was our son's original diagnosis. Reactive arthritis is another in this spectrum of post-strep autoimmune disorders. So it's not at all surprising that PANDAS kids might experience joint or leg pains. (For our son, the legs were the most painful.)

Dr. Dan Geller of "Saving Sammy" fame is at Mass General, I believe. But he's a psychiatrist, so I don't know that he'd be willing to prescribe abx, steroids, or order IVIG. He'd probably refer you to someone else for these types of treatments, I'm guessing?

Hang in there, Rachel. If your ds has an active infection, then the abx can absolutely make things worse before they get better. Are you familiar with the Herxheimer reaction? If not, SF Mom has posted some great stuff on this: http://www.latitudes.org/forums/index.php?showtopic=7800 We've seen this kind of spike with some of our son's treatments (both abx and IVIG - Dr. K calls it "turning back the pages" post-IVG, for example). We saw a brand new vocal tic emerge, for instance, after our 1st round of IVIG. It's very scary, for parents and kids... but if the abx is doing its job and killing off the infection, the immune system does get stirred up before things settle and you start to see improvement. Other folks on here have posted about 10-20 days or more of treatment-dose abx before they saw the noticeable progress begin. Dr. B is top-notch, from what I've heard. If you have doubts, definitely contact him... but it's not at all unusual for children's symptoms to worsen in the first week or two after starting serious PANDAS treatment. As you may already know, many parents have also seen short-term symptom relief from ibuprofen when PANDAS children are really struggling. Maybe try some Advil PM for your ds at night to help him get to sleep? Melatonin also helps many sleep-challenged kids on the forum. Our son had terrible sleep issues, but these seemed to help him. If things get really rough, you could also ask Dr. B about a steroid taper to help reduce inflammation and moderate the symptoms. You definitely have more options to explore if necessary. Good luck. You're in good hands with Dr. B!

Hi, May: I'd try to make sure they do this over at least 2 days, and with a sufficiently slow infusion rate (6+ hours each day vs. the standard 4 hours). We tried to have a 2nd round of IVIG done locally for our son - it was disastrous. Only got through half of day 1 of 2: they were supposed to be using Dr. K's protocol, but they didn't and infused 50% faster, even though I repeatedly mentioned that Dr. K did this much slower at OBSC in Chicago during our 1st round. In the end, they cancelled the procedure and refused to reschedule because they said our son had an "adverse reaction" to the Ig. We later discovered from multiple sources (Dr. K, web resources) that our son's issues - dizziness, shortness of breath, headache - are a very common side effect of a too-rapid infusion rate. Dr. K starts with a very slow rate and gradually increases it over the 6 hours of infusion each day; our local clinic insisted on doing a steady rate (no "ramp-up") over 4 hours maximum, just saying "that's how we always do it." Most documented adverse reactions to IVIG, especially in children, are directly related to the infusion rate! Here's an article from Pediatric Nursing that discusses recommended infusion rates for children, based on the dose of Ig they are receiving: http://findarticles.com/p/articles/mi_m0FSZ/is_n4_v22/ai_n18607140/ Hope that helps, and best of luck! (P.S.: Our son ended up having 2 more IVIG's with Dr. K in Chicago after this aborted local IVIG and he had no adverse reaction whatsoever. The right infusion rate makes all the difference!)

Oh, Nancy... that just plain sucks! So sorry this happened to you. We had a similar experience about 18 months ago when we tried to get IVIG done locally ( http://www.latitudes.org/forums/index.php?showtopic=4447 ) - not nearly as brutal as what you just experienced, but I can empathize. Based on our experience back then, though, I think you're doing exactly the right thing by pushing forward and trying again. We ended up delaying while we tried (in vain) to find some other way to get IVIG done locally; 6 weeks later, our son had his worst PANDAS exacerbation ever. I've often wondered how things might have gone if we'd gotten that 2nd IVIG as planned. Have you spoken to Dr. L about this (I'm assuming she ordered it)? From what I know of her, I'm sure she'll be livid that your daughter was treated this way and will do everything in her power to get you that procedure ASAP. Don't give up!

Yep, excitement is a form of stress in this context, I think. Our son's symptoms (tics especially, but OCD too) used to spike when he got very excited about something.

We've been agonizing over the same thing. Now that our oldest (14) is finally winning his battle against PANDAS, our middle son (10) is exhibiting some symptoms. They're mild but unmistakable: a slight vocal tic (kind of a chirp), heightened anxiety, some OCD-like contamination issues. At first we thought these were learned behaviors, and that he was copying his older brother to get some parental attention. (He's our middle child and has been short-changed over the past few years, despite our best efforts to give him quality time.) Now I'm not so sure. I've noticed the vocal tic emerging when he's totally engrossed in something (a show, a video game) and is oblivious to the rest of the world around him. And he's suffering from enuresis: not something anyone would be likely to fake or be able to control. Can't tell you how big a lump has formed in my throat when we've observed these mild symptoms emerging. We just did a blood draw for him and sent the serum to Dr. Cunningham's lab for analysis. If it comes back in the normal range, awesome - maybe our fears are unfounded. If not... well, at least we'll be on the alert then. I have so much sympathy and admiration for the parents on this forum who have multiple PANDAS kids. Don't know how you do it... or how we'll manage if it comes to pass. Hope your youngest's symptoms resolve quickly, Robin!

Every PANDAS parent can appreciate how momentous these milestones really are. Congrats, and may the healing continue!!!

Hi, LMama: Every child's situation is different - and I don't want to be alarmist - but personally, I'd try to pursue prophylactic abx to protect against future infections. Has your ped checked your son's ASO and Anti-DNAse B titers? If they remain elevated or rising, that's a warning sign that strep is still lurking. The reason I'd suggest considering prophylactic abx: each of our son's PANDAS exacerbations became more severe, longer, and more resistant to treatment. Other parents have reported this pattern as well. Dr. Cunningham and other PANDAS experts have called PANDAS "rheumatic fever of the brain," and long-term abx are the standard of care for RF patients, sometimes for decades. Just one perspective. Good luck!

AWESOME news, Mom MD!!! Out of curiosity, what abx (kind and dose) is your ds on now?

Cyber-Dads, too! (Or maybe weird cyber-uncles you try to avoid at the family reunions?) Keep fighting, EA. Vegas odds have you winning by a knockout!

Yeah, I've been using one for a couple of months. Recently switched to the squeeze bottle style for more "force." Unfortunately, it hasn't made a difference as far as I can tell. No way would my kids do this, especially PANDAS son during exacerbation! (Well... maybe if it was an energy drink instead of saltwater?)

Wow - that fits our situation, too. From Day 1 of his PANDAS journey, our son always complained of congestion and drainage. An early MRI showed sinus infection for him. I've had chronic sinus problems for 4+ years now and am finally pursuing it medically since my ASO titer keeps going up (now 443). It was 303 back in March when 1st tested, and all I could get from the doc was 1 month of low-dose zith (250 mg daily). Seemed to help, but then the sinus congestion rebounded. Recently finished a month of treatment-dose clindamycin (whole family did this at same time to try to clear us all, since we all have elevated ASO). Again, it seemed to help considerably while I was on the abx... but now the sinus congestion has rebounded worse than ever. Sigh.... Saw the allergist last week and he agreed to order a CT scan of my sinuses, which I did this morning. He and I were discussing family health history, etc., and I reminded him of our son's PANDAS diagnosis. He immediately perks up: "Your son has PANDAS? What doctor is he seeing locally?" Turns out that the allergist's own nephew was just diagnosed with... PANDAS! Small world, huh? And this is in a small town in SW Michigan. Maybe PANDAS isn't all that rare after all, eh? Anyway, I know there were a number of threads on the forum in the past where parents repeatedly mentioned sinus infections / sinusitis accompanying their children's PANDAS flares. If anybody out there knows of a "magic bullet" for eradicating strep from sinuses, please shoot it into a post!

Hi, Lori Ann: The "classic" PANDAS patient has the sawtooth pattern, with abrupt, explosive exacerbations and slow, uneven healing over weeks or a few months afterward. But - in the real world of PANDAS - it's not that simple or consistent. Our son, like Sammy Maloney in "Saving Sammy," did not improve on his own weeks or months after a flare; things just stayed pretty horrible until we intervened with some major treatment (high-dose abx, steroid burst, IVIG). Dr. T had a really nice chart he presented at the AO conference where he showed that the PANDAS symptom severity patterns are all over the board; some kids show the classic pattern which wanes without intervention, others display more "chronic" symptoms. Nobody really knows why. In our case, we now suspect our son kept getting re-exposed to strep after each treatment. Our entire family recently tested positive for GAS infection via ASO titer, even though none of us had strep throat symptoms or positive cultures. And many parents on this forum have posted that their child's symptoms resurge after abx dose is lowered or discontinued. So hang in there. The resumption of zith may still do the trick, given more time. If not, you may want to try different abx, make sure the rest of your family is clear of strep, and/or test for other infectious agents (Lyme, myco P?). Good luck!

AWESOME!!! Love these kinds of posts - they're golden!

Hi, Indiana Rose (I was born in Fort Wayne myself): I'd be cautious about the disposable gloves, because that could quickly escalate into a full-blown compulsion. It did for our son (now 14). During has last exacerbation, he couldn't touch anything with his bare hands - not even allow them to brush against his shirt or pants - due to OCD contamination fears. In desperation, we offered him latex gloves. He become totally reliant on these, and we were going through more than a box a day (50 pairs) at one point, buying them in bulk. It's so awful when you just want to help your child... but some of the help turns out to empower the PANDAS OCD instead of the child. Wish I had more useful advice!

Yep, guilty here too. My Crohn's has been flaring for the past year, blood pressure is too high, not enough sleep... familiar stuff, eh? Finally started trying to find out what's up with chronic sinus issues that have been growing worse for the past 3-4 years because I'm paranoid these are intertwined with my PANDAS son's issues: my ASO is 443 and rising, and the darned strep is hiding in there somewhere! And the beer and wine posts hit home. Drinking a lot more of that than I used to: it's my OTC medication of choice!!!

This ROCKS!!! It's about time, but better late than never. The folks like Dr. C, L, K, B, T, etc., deserve a huge vote of thanks. But I honestly believe that this forum and this community had a lot to do with the belated affirmation from NIMH that Dr. Swedo's original work needs to be acknowledged (and respected) by the medical establishment. Thank you SO much to Latitudes, Sheila, Chemar, and the folks who preserve this "safe internet harbor" for us to compare notes, help each other, and save our sanity. It's made a huge difference for PANDAS children and families! (Hey, Forum Family... I love u guys. Group cyber-hug, anybody?)

I agree, Elizabeth. Just watched Dr. T's presentation at the AO conference on DVD, and he basically said the same thing, calling them "PANDAS-like illnesses." Essentially, he believes that a number of infectious triggers can cause the same spectrum of symptoms, GAS being one of those... and that's part of the reason PANDAS has remained embroiled in medical controversy. Not every case that presents like PANDAS turns out to be primarily or exclusively related to strep... or even related to strep at all. That being said, I do believe that PANDAS is one distinct "subtype" of these awful pediatric neuropsych disorders. Doctors like Dr. Swedo and Cunningham and many others have done extensive research to establish the connection to GAS, identify the mechanisms by which it triggers the autoimmune response and the attack on the basal ganglia, etc. In our case, we started with an LLMD who initially suspected Lyme: he's the one who ultimately diagnosed our son with ARF/SC and later PANDAS. He clearly considered Lyme and PANDAS to be distinct disorders... although he always cautioned us that there could be secondary infections / co-infections involved as well. Frankly, I'd be ecstatic if the medical establishment wound up saying "PANDAS is just one subcategory of a much broader PAND / PITAND constellation of disorders that exhibit overlapping symptoms" as long as that translated into acceptance of the diagnosis, adequate treatment, and insurance coverage for our kids!!! What drives me nuts is hearing folks like Dr. K confide that this "medical controversy" largely amounts to political infighting, stubborn pride, and experts on both sides arguing over "a few words." Argh....

Interesting - our PANDAS son had frequent bloody noses and some hallucinations (especially when on prescription sleep or psych meds), but I never thought to mention those. No shouting very loud, though: he had sensory defensiveness and couldn't tolerate any loud noises. Bloody noses, hallucinations and shouting very loud all stood out in the OTHER responses.