Worried_Dad

This concerns me as well. Dr. K was our son's main PANDAS doc, and we have great respect for him and gratitude for what he's done for us. But we followed his original formula - IVIG and low-dose prophylactic augmentin - and our son relapsed worse than ever. We then tried 2 more rounds of HD IVIG 28 days apart. Helped a little, but not nearly enough. Not until we went to the "Saving Sammy" dose of augmentin XR did we see sustained, steady progress. Our son is now pretty darn close to 100% after > 1 year of high-dose abx. I really believe he would be struggling mightily if we had not maintained that dose for so long (especially since all of the rest of our family have elevated ASO). So - no disrespect intended to a doc who has done tons of good for suffering children and the PANDAS cause - but I have to differ with Dr. K on this one. For our ds, long-term abx didn't cause a relapse; it seems to have finally prevented them. This confuses me a bit. Did he mean that for some, long-term abx will cause the patient to relapse and that for others, long term abx will help cure them faster? So each child's response may be different and fall into one of these two camps? My child is on long term abx, so I want to know whether I should be worrying that, in the long run, they could make things worse. Or if I can relax because she is in the group that is being cured faster (fingers crossed). Thanks for passing all this info from your appointment on to us. I love hearing the different doctors' perspectives. Kara

Vickie - U ROCK! LITERALLY!!! LOVED the musical choice - Tom Petty is perfect. I'm going to share this with everybody I can. What a great inspiration going into the Holidays. Makes be believe that the New Year will bring even better news for everybody tormented by PANDAS / PITAND. Thank you!

I thought Beth M's PANDAS Foundation was sponsoring / fundraising on behalf of an augmentin XR study at Mass General, with the involvement of Dr. Dan Geller of "Saving Sammy" fame? Haven't heard a peep about this lately, though.

Our ds also had the hours-long crying jags (interspersed with rages) during the worst of the "PANDAS storms." As Nancy said, we attributed this to the classic emotional lability associated with SC or PANDAS.

Very interesting. I wonder what has changed the PANDAS docs' perspective on this? In summer of 2009, Dr. K strongly recommended that we proceed with 2 more HD IVIG's (full 1.5 g/kg over two days each time) 28 days apart to "knock the PANDAS out" for our ds, who was in absolute crisis at the time. Those were rounds 2 and 3. I've seen several folks post about Dr. K meeting with Dr. Swedo on this topic. Is that what changed his thinking on multiple IVIG's? Confusing, because (as others have pointed out) I believe Dr. S used multiple rounds of IVIG with some of her original SC / PANDAS study participants. Guess we're all blazing new trails through the PANDAS jungle, eh?

This seems plausible to me. Our son's symptoms definitely changed from exacerbation to exacerbation, and insomnia was one of his most persistent PANDAS symptoms.

From what I've read, heard from others (like local parents of kids with "classic" OCD), and been told by some PANDAS docs, the severe emotional lability is a distinguishing aspect of PANDAS vs. traditional OCD. In the extreme, docs like Dr. T and Dr. K describe the PANDAS symptom explosions as "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, anorexia, tics, rages, suicidal talk, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable. Like your dd, our son could not even attempt CBT during exacerbations. Like trying to extinguish a bonfire with a squirt gun. Don't know if specific types of OCD are more common in PANDAS? For our son, it was crippling contamination fears and anorexia (along with continuous pacing in circles).

We joined NORD in the early days, when our son's diagnosis was Sydenham's chorea, which NORD did include in its list of rare disorders. To be honest, for our situation, it was pretty worthless. They had no useful resources for ARF or SC (less than I found for free on other sites) and no other SC members with whom we could compare notes. Just our experience... but in hindsight, I wouldn't bother joining again.

I live in Michigan. For us, every year it's guaranteed that the Lions will make us feel like recycling our Thanskgiving feast....

Ditto - Hope you all get plenty of turkey and a a break from the b&w bear today! P.S.: EA, our PANDAS son (14) chowed down a while ago on his delicious tofurkey, a mountain of mashed potatoes, and some pumpkin pie (where he just ate the filling and ignored the crust). I think you and he are kindred spirits!

Our son had an intense (but thankfully brief) dystonic reaction when our local child psych (who "didn't believe in PANDAS") told us to increase his daily zyprexa dose by a factor of 6. Huge mistake! Luckily, when we tapered off the zyprexa, the dystonia abated (along with other nasty side effects). So neuroleptics in particular can cause dystonia, and (from what I read) it doesn't always remit even after the offending medication is discontinued.

I actually did a poll on this a while back because I'd noticed so many parents on here mentioning sinus infections for their PANDAS/PITAND children. More than half of the respondents said their kids did in fact have sinus infections. Here's the link: http://www.latitudes.org/forums/index.php?showtopic=6421

Been thinking about you, LLM, and hoping that things have been going better for your ds and family. You've given so much to the PANDAS/PITAND community with your posts, your articles, your presentations at conferences. If anybody deserves a break, it's you!!! Relieved to hear that the LLMD is on the job and that you're seeing positive results. Finding the right doc is so critical, eh? Thanks for updating us. Your online family worries about you, and it's wonderful to hear encouraging news! Take care, and carve out some well-deserved "you time." We'll leave the light on for ya!

I don't mean to discourage you... your mileage may vary... but we did the Cunningham test in April 2009 and they generously expedited it for us so we'd have the results in time for our 1st appointment with a new local pediatric infectious disease specialist. We thought the results were just the "smoking gun" we needed to overcome all of the skepticism we had faced from local docs. For us, it made no difference. This doc looked at the results, the notes from Dr. Cunningham herself, and the copy of her journal article on the testing and said "I don't know what this means." Ultimately, he dismissed it as just a research study with no clinical value. Sigh.... But my wife and I have no regrets about participating in the Cunningham study. Our participation helped a researcher who is fighting hard for all of our children and (we hope) may help other PANDAS kids in the future. And - even if the local docs dismissed it - the result made a big difference to us! At a time when we were starting to doubt ourselves (since every local doc told us we were in denial), those results corroborated everything we had learned and suspected to that point. It gave us the strength to keep fighting for proper treatment. For us, in the situation we were in at that time, the results were invaluable! And the results did eventually make an impression on other local docs (a DAN doc, a new pediatrician at our family practice). So, all in all, definitely worthwhile! Based on our experience, I'd say you're wise to seek an appointment with one of the major PANDAS docs, at least as a safety net in case no local doc comes through for you. We wasted a year searching in vain for local support, and in that time our son's condition deteriorated badly. Best of luck!

I think you're right to be concerned. Our PANDAS son became anorexic during exacerbations and lost 20 lbs in about 5 weeks (for a 12-year-old kid who only weighed 100 lbs at the time). Every meal was torment. We seriously worried that we would have to check him into the hospital to get nutrients into his system. Buster and EAMom did in fact have to hospitalize their PANDAS ds for a time for this reason. So don't want to induce panic, but definitely remain vigilant on this. Frankly, during the anorexic phase, we were thrilled to get our son to eat anything and didn't worry so much about nutritional value, just wanted him to consume some calories. If your son consistently refuses to eat meals, I'd encourage him to eat whatever he's willing to eat while you work to resolve the issue.

PANDAS kids can definitely react and have an increase in symptoms just from being around others with active strep infection, even if they're not infected themselves. And - if the abx dose isn't high enough - they can indeed be infected as well. Our son contracted strep infection while on a low dose of augmentin (500 mg daily for a boy weighing 100+ lbs at the time). Here's an awesome thread by Buster where he explains the phases of GABHS infection and how abx work (bacteriostatic vs. bactericidal, etc.). http://www.latitudes.org/forums/index.php?showtopic=5520 Hope that helps!

We did a 5-day prednisone burst at the beginning with Dr. K. As he explained it: he uses the steroid burst mainly as a diagnostic tool; he's found that kids who respond well to the burst tend to respond well to IVIG. The idea is that the steroid burst provides immediate (but short-term) symptom relief due to its anti-inflammatory and immuno-suppressive effects. So it would in theory reduce inflammation in the basal ganglia and dampen the autoimmune attack. For our PANDAS son, the 5-day burst gave us noticeable improvement within a day or two, but the improvement only lasted about 4 days before things spiraled downhill again.

Congrats, EA! Here are some quick examples you might consider for your 504 (although you know much better than we do what aspects of school are the most painful for you). Reduced workload (only essential homework required) More time to finish assignments, tests, quizzes. Possibly allowance to take some tests / quizzes home overnight. Permission to leave the classroom when necessary by providing agreed-upon "signal" to teacher. Right to use a calculator on math assignments / tests / quizzes. "Safe zone" provided somewhere in the school (office, private area, etc.) where you can take refuge from the chaos when/if necessary. Those are accommodations we received from our local school for our PANDAS son at various times over the past 3 years. There were many more, especially since he remained primarily homebound during that time. Just some ideas for a starting point. You're the expert on what would be the most helpful for your own situation. Best of luck. Great job pursuing this!!!

Ditto. This is one of our son's lingering symptoms: he wears sunglasses all the time. Much worse in the past during exacerbations.

A number of researchers (like Dr. Leckman) have found that stress can worsen PANDAS symptoms and even lead to exacerbations. I'd imagine the physical and emotional stress of a broken arm would qualify. If your son had strep exposure in Sept, then maybe the stress has opened the BBB and allowed more of the "bad" auto-antibodies to reach the basal ganglia? If so, then abx and ibuprofen do sound like a prudent precaution. Maybe Buster or one of the more scientific folks can weigh in on this?

Great news, Priscilla, thanks for sharing! Here's hoping you see nothing but continued progress.

Hi, KelC: This was my 1st thought as well when I read your post. You undoubtedly remember from "Saving Sammy" that too low a dose was ultimately ineffective for Sammy Maloney. They started him on pure penicillin with temporary improvement that quickly faded. Then had to ramp up his augmentin XR dose to 1000 mg twice daily to see and maintain progress. Any attempt to lower that dose during the 1st year led to a resurgence of symptoms. Our experience has mirrored that. Our son was on the "standard" prophylactic dose of augmentin (500 mg once daily) for many months, and it was useless: he contracted further infections while on that dose. When we got a doc to write the script for the "Saving Sammy" dose of XR (1000 mg twice daily), we saw significant improvement within 10-14 days that has remained steady for over a year now. XR has given our PANDAS son his life back! So I'd caution that - with PANDAS - if the abx dose is too low, or too short, it does little if any good. Another abx is certainly worth a shot, but I'd also suggest asking your doc to increase your son's augmentin dose and give it a solid month at least. Our son is about 55 kg and 14 years old, btw. Also, we tried an SSRI (zoloft) and many other psych meds (ativan, klonopin, zyprexa, risperdal, etc.). They were worse than useless for our son - they actually made symptoms much worse. Proceed with caution on those, definitely start with a very low dose and increase it very slowly if you go down that road. Best of luck, and welcome!

Wow - this is fascinating. When our son 1st became seriously ill, it was a couple of weeks after he had 2 consecutive infections. He came home from school in March 2007 with a very high fever, aching and shaking all over, but the school told us flu was rampant and we assumed that's what it was. The following week, our entire family had a (different) severe intestinal virus that our youngest brought home from daycare. My wife and I have often wondered if that combination of bugs a week apart led to the PANDAS.... Thanks for sharing this!

Ditto! Our son's experience mirrors Nancy's son's in many ways. We had tried lots of different treatments over a 3-year period (supplements, lower-dose abx, 3 rounds of IVIG, even a variety of psych meds... the psych meds were a disaster). IVIG worked well - round 1 gave us 3 months of immense improvement - but nothing lasted. Then in Oct 2009 we begged Dr. K to try our son on the "Saving Sammy" dose of augmentin XR - 1000 mg twice daily. (Our son is now 14 and about 115 lbs.) Within 10 days of starting the higher dose of XR, our son told us he could "feel it working." His massive OCD contamination fears melted away (dropped from a Y-BOCS score of 35 to 9 in 4 months!). We've been on that dose of XR for just over a year, and our son has maintained steady progress over that time with no symptom spikes or regressions. He's probably 95% now and back to school for the 1st time in 3 years! So - for some kids, like Sammy Maloney and our son - the right dose of the right antibiotic for a sufficient duration seems to allow the process of healing in the basal ganglia to occur. And dose is critical. Our son was on a 500 mg/day "prophylactic dose" of augmentin for months prior to the higher-dose, and that did not work at all: he had another major infection / exacerbation on the low-dose abx. In our case, we think we know why our son needed the higher dose. Our entire family have tested highly positive for ASO titer (titers now slowly coming down following a month of clindamycin). Our PANDAS son is currently the only member of the family with an ASO in the normal range! So ensuring that another family member isn't carrying strep is also crucial. Good luck!

Here's a topic I started a while back on this subject: http://www.latitudes.org/forums/index.php?showtopic=7430 Based on our experience, I'd consider this a serious warning sign. Turned out that every member of our family (besides our PANDAS son, whose titers have come way down thanks to a year of high-dose augmentin XR) had elevated ASO despite no overt symptoms of strep throat. We've been treating our whole family with eradication doses of abx (clindamycin, 1 month) and it now looks like all of our titers are coming down except my wife's. So she may be the "mystery carrier" in our family; family docs are still monitoring her ASO trend while we wait for a referral to an infectious disease doc. In any event, our son's PANDAS was pretty much chronic for 3 years, until the "Saving Sammy" dose of XR. Three IVIG's helped but only temporarily. We believe the reason is that our son was living in "strep central" and was continuously re-exposed... which is the worst possible situation for a PANDAS kid! I'd strongly recommend discussing an eradication dose of abx (clindamycin, rifampin, or even a combo of both or similar abx) with your doc. ASO doesn't guarantee a current strep infection, but it's a serious warning sign and definitely indicates a recent infection. Why risk it? Good luck!