Worried_Dad

Our son has not showered or brushed his teeth in more than 6 months. Contamination fears prevent both somehow (brushing is "messy"; getting out of shower makes it impossible to "stay clean"). He chews lots of sugarless gum with xylitol to clean his teeth (best we could come up with). Instead of showering, he does hot tubs because the chlorine in the water is "decontaminating" to him. Interestingly, Sammy Maloney had these same symptoms (couldn't shower or brush teeth) per "Saving Sammy," and I noticed the same thing in one of the other recent threads that linked to another mom's online article about her son's PANDAS experience. Recall seeing others post about this, too. This seems to be a common pair of symptoms for PANDAS? As far as clothes go: since this thing started, our son will only wear black clothes - shirts, pants, socks, shoes - and they have to fit exactly right or he won't wear them. But he does change his socks and shirt every night, which is a relief!

Yeah, our son fits Dr. K's "PANDAS phenotype." Very bright kid, doing great in school before this nightmare hit. Then he missed all of 7th grade last year. Sigh....

When our son first got sick, he had almost constant, crippling headaches. I always attributed that to the brain inflammation, like you suggested.

One of our son's most persistent and maddening symptoms was the inability to sleep. At peak points during exacerbations, he would literally pull all-nighters 2 or 3 times a week and be up for 40+ hours straight... would not collapse into sleep until the following day's normal bedtime. And of course, extreme fatigue made all his other symptoms worse. Stressed our entire household to the max! When he first got sick, we tried everything: melatonin, valium, ambien, sonata. The drugs (valium, ambien, sonata) made things worse: instead of putting him to sleep, they made him hyper and hallucinatory. Then our DAN doc suggested desyrel - an antidepressant that is prescribed "off label" for insomnia. That, in combination with melatonin, did the trick. His sleep cycle finally stabilized and the all-nighters stopped. But over time, we had to keep increasing the dose and seemed to be seeing side effects. That made us nervous, so we eventually tapered off and just tried nightly benadryl instead. Honestly, the best cure we found for our son's insomnia so far: IVIG and mega-dose augmentin!

Dr. K is our son's main PANDAS doc (he's only 3+ hours away), but we also did one phone consult with Dr. Latimer last Spring after our son's last (and worst) exacerbation hit. They both impress me: both seem very knowledgeable and compassionate. Interestingly, our phone consult back then with Dr. L did get "delayed" and she ended up calling us back later that night (much later than we'd been told). Both used to be very responsive to e-mails, too, but I've noticed that this has become less reliable over the past 6 months. I really get the feeling that both are overwhelmed by the number of desperate PANDAS patients coming to them from all over. This disease is too darned widespread for 2 doctors to handle!!!

We did an echo as a precaution (since our son was originally diagnosed with acute rheumatic fever with Sydenham's chorea) but it was normal. What a relief!

This is what we've experienced, too. Three major exacerbations and each one worse than the last. More severe, longer time to recover, even with treatments like IVIG. Saw something on the web a while back where a medical site (Australia or New Zealand, I think) stated that the brain injury from PANDAS is cumulative, and that - after enough repeated bouts - the damage may become permanent. That scared the heck out of me! Yes, even after 1.5 years on abs we were noticing a "baseline change" with strep exposure and exacerbations from other illnesses (flu etc)...hence our decision to proceed with IVIG.

Hi, Bubba's Mom: Wanted to share our experience re: psych meds. Our son was also put on psych meds (ativan, zyprexa) about 6 weeks prior to our 1st IVIG with Dr. K. Our house became a war zone: our formerly pacifist son would rage, cry hysterically for hours, and paced non-stop in circles from morning until night. At one point he lost it and pretty much destroyed the basement before we settled him down by explaining that - if he could not stop - we would have to take him to the hospital. We were hanging on by our fingernails, trying to survive until IVIG. Then Dr. K warned us that these types of meds "put PANDAS kids over the edge" and strongly advised us to taper off them. We did... and within 2 days of stopping them, our son's behavior improved dramatically. The rages stopped, the hours-long crying jags stopped, the pacing stopped. We were amazed... and so relieved! That made the trip to Chicago for IVIG possible (didn't know how we were going to make it otherwise). Don't know which meds your son is on, but - for our son - ativan in particular made things much, MUCH worse. Kind of like pouring gasoline on a bonfire. Just wanted to share that. Every child is different, but many on this forum seem to have had major problems with psych meds.

YA-HOO! THAT ROCKS!!! I pray that Ryan's progress continues, Judy. And I can totally relate to being afraid to post successful news because that might "jinx things." Been feeling that paranoia myself! FYI, my son's progress continues. He's been on the Saving Sammy dose of augmentin for about 3 weeks now, and every day he sheds some more OCD behaviors. He's much calmer, much happier. Very encouraging! On the poignancy / break-a-parent's-heart side: the other day he told me he can't really remember what life was like before he got sick. He said it pretty matter-of-fact - no anxiety, no obvious sadness - but it sure put a lump in my throat. I told him now that he's getting better, those old memories will return... and we'll make more of them. Man, I hope I'm not making false promises. But the recent success stories give me so much hope!!!

Hi, Marci, and welcome! Those of us on this forum greatly appreciate what you and Beth Maloney are doing! The more people who share their children's stories - especially success stories - the better. The challenge (as you probably know well) is that most docs don't know much about PANDAS and often just remember seeing articles or abstracts that dispute the PANDAS hypothesis. So (like Beth Maloney) we parents end up searching for months - or years - to find any doctor in our area willing / able to help. It's maddening that so many docs are happy to prescribe high doses of psych meds but not high doses of antibiotics! We had 2 rounds of IVIG this summer that helped but not as much as our doc expected. We were getting desperate. I had exchanged e-mails with Beth Maloney several months before the book came out and tried to get a higher dose of augmentin prescribed for our son, but even the experienced PANDAS clinician treating our son wouldn't "buy" the high-dose abx option. Only 3 months post-IVIG when things weren't progressing well did he agree to try a higher dose... and it seems to be working! Since we started the "Sammy Maloney" augmentin dosing, our son's progress has accelerated considerably. So that's another challenge for all of us. Even if we convince a sympathetic doc who's a "PANDAS believer" to prescribe abx, they want to stick with a standard dose for a standard time period, because (understandably) doctors are trained to avoid overprescribing abx. But Sammy's case pretty clearly shows that - for kids who have a severe case that goes undiagnosed for a long time - the standard dose doesn't cut it. We do still believe that IVIG helped our son and is a useful treatment for PANDAS. Our son's first round of IVIG (October 2008) triggered dramatic improvement (about 70%) in the first month... but another infection sent him downhill again, even while on the "standard" prophylactic dose of augmentin (500 mg daily). So it seems like pure abx can do the job if PANDAS is diagnosed quickly and treatment starts ASAP. But I wonder, after reading "Saving Sammy": would Sammy have recovered even faster if he had done IVIG in combination with the mega-dose augmentin? Seems like the 2-pronged attack - high-dose abx to eradicate / neutralize the strep and IVIG or PEX to modulate the immune system - might do wonders.... I understand why Beth was leery of IVIG 7 years ago due to the risks associated with "pooled blood products" at that time, but the safety of this procedure has improved dramatically since then, and it's now commonly given for many immune conditions. Guess this just makes it obvious that a lot more research needs to be done on PANDAS, and doctors need to stop saying (as we heard at various times): "it doesn't exist"; "it may exist, but your son doesn't have it because [plug in invalid / misunderstood reason here]"; "your son may have it, but there are no effective treatments other than psych meds and CBT therapy." Arrrrggggh! Again, thank you for publicly sharing your son's story. That takes courage, and it will help other children and families who are being tormented by this disorder!

Our son became a vegetarian (on moral grounds) about a year before the PANDAS hit. So he was a "selective eater" already. But after the PANDAS hit, he became the pickiest eater on the planet (at least, our part of it). He had borderline anorexia after his August 2008 symptom explosion and every meal was agony. We came close to hospitalizing him at one point, after he'd lost almost 20 pounds in about 2 months. And sensory defensiveness resulted in him complaining about the way things smelled and tasted (too strong). He eats better now... but (OCD symptom?) his variety / flexibility has collapsed. Like Sammy Maloney in the book, he has to eat the same thing every single morning (in his case, fried rice - long-grain brown - with egg and peas mixed in). It's torture trying to get him to vary his diet or try new things. Has improved a bit in the last few weeks, since we started the mega-dose augmentin. We're praying the progress continues!

So far, we've been lucky. He hasn't had any obvious stomach issues anyway. We do use a probiotic every day. Have tried different ones, but our new DAN doc recommended Bifo Viden ID, so that's what we're using now.

Ouch. Yeah, I'm afraid these are big pills (1000 mg twice a day). When our son first got sick 2+ years ago, he couldn't swallow pills very well and we had to get liquid everything. But after 2 years of this - and an endless procession of different vitamins, supplements, and meds we've tried - he's gotten really good at scarfing them down! FYI, Judy: I asked our pharmacist about the "XR" version of augmentin and whether it made much difference vs. regular augmentin (which is what Dr. K had been prescribing previously). He told me it didn't make a difference if you took multiple pills per day - said 1000 mg of every 12 hours would be just as effective as XR. So maybe you'll be able to work it out with liquid doses more often each day?

Hi, Judy: Actually, per the book, Sammy gained some weight as a side effect of some of the psych meds and I believe would have weighed close to your son's weight (definitely over 100 lbs). And 1500 mg of augmentin didn't work for him: they had to up his dose to 2000 mg of augmentin XR daily to eliminate the symptoms; anything lower (like 1500 mg) and the behaviors came back. I've traded e-mails with Beth Maloney on this, as well as reading the book, and Beth said that they had to keep Sammy on 2000 mg of augmentin XR daily for a full year, then 1000 mg for another 3 years. As you probably know, Judy (per our PM exchange), we just started this same dose (2000 mg daily) with our son (13, 106 lbs) and it really seems to be making a difference! For these severe, chronic PANDAS kids, it just seems like the "normal" abx dose for the "normal" time period doesn't cut it. Don't know if they're fighting "super-strep" or if they're just vulnerable and it hides out inside them where the abx can't reach it all... but I'm starting to believe that Sammy Maloney needed that full year's mega-dose for a reason. Hope that helps!

Hi, Greeneyes: I believe Dr. K's folks at OBSC used dextrose solution before and to flush after Ig? Not positive about that, though....

I'd say it took about 5-7 days to be obvious. My wife and I started noticing the difference after about a week, and our son himself said it "was really helping" at about the same time. FYI: at an appt with our new local DAN doc this past Friday, our son told her that the augmentin "was making things [OCD-wise] a lot easier." May not seem like much... but our son has been very pessimistic during this latest exacerbation, and this is the first time since last December he has said things are getting easier. So to my wife and me, this was HUGE!

Hi, Faith: Yeah, our son has essentially missed 2 years of school (6th and 7th grades). We did homebound schooling (with a tutor supplied by the middle school who came to the house a few hours a week) and managed to squeak through 6th grade. August 2008 (before start of 7th) is when our son had his overnight explosion of PANDAS symptoms (massive OCD, tics, anorexia, rages, crying jags, suicidal talk, etc.). He was utterly crippled and incapable of any kind of schooling until after IVIG round 1 (October 2008). We got him back to "semi-school" for a month (6th-period Science class as a start), but then he had another minor exacerbation that January (after 3 days of school following Christmas Break). That set him back, and he could not return to class. Then the March 29 "mega-exacerbation" made him a virtual prisoner in a few rooms of our home due to massive OCD contamination fears. Given all of that, we didn't even think about sending him back into a public school setting this year. My wife is his teacher now, using Keystone Middle School online curriculum. (My wife's a stay-at-home mom by choice, and we're paying to put our 3-year-old in full-time daycare so she can focus on our PANDAS son's schooling.) As far as his relapses: we're honestly not sure if he contracted strep again from outside sources or just still had strep hiding in his system, waiting for a chance to resurge. Hope that helps!

Hi, bmom: Yeah, the book (and Beth Maloney's e-mail) specifically mentioned XR (Extended Release, as you indicated), and I mentioned this to Dr. K. But the 2-week script he called into our local pharmacy was just for regular augmentin (no XR on the bottle, anyway). I plan to ask our pharmacist about this tomorrow and will post what I find out. Haven't really tried any other abx except amoxil at the beginning of this adventure (which helped but didn't lead to full recovery to baseline). Had convinced our (now deceased) original local DAN doc to prescribe 30 days of zithro based on advice from this forum before we hooked up with Dr. K, but he (Dr. K) then had us switch to augmentin after just 10 days of zithro. Did a 5-day prednisone burst per Dr. K early on, and it worked wonders... but the miracle only lasted about 5 days before things went downhill again.

Hmmm... wish I had a simple answer to that one. Our son definitely shows a rise in ASO titer following exacerbations. Whether it's "high" or not depends on whom you ask. When our son first became ill, he was diagnosed with ARF and SC based on an ASO titer that came back from the lab as "off the scale." Unfortunately, that lab usually tests adults and considered anything above 200 to be off the scale. So we have no way of knowing whether our son's titer was 201 or 1201. As a result, many specialists we saw dismissed his 1st 2 elevated ASO titers because some medical resources consider anything up to 330 to be "normal" for a child our son's age and we could not prove that it was over 330. His titer did come down into the 130-140 range between exacerbations and went above 200 following exacerbations, so the trend seems convincing to us... but not to many of the local docs we've seen. Neither was the PET scan, nor the Cunningham blood test result. Frankly, sometimes it seems like nothing will convince a "PANDAS skeptic." Anyway, I've seen other posters point out that with ASO and Anti DNAse, it's the trend that matters more than the absolute number. So in that sense, I think our son follows the pattern described by Dr. Swedo in the early days. As far as strep or symptoms - our son has mostly been out of school for 2 years so is only exposed to what his brothers bring home. We don't know that he was exposed to strep in Jan or March, and he doesn't show classic strep symptoms (no sore throat); we only have the indirect evidence of the rising ASO titers (and the behaviors). In January he was actually back at school (after 1st IVIG, we got him back to school for about a month) when he came home and said he felt "hot, sweaty, nauseous" right before the Jan exacerbation. Didn't do a throat culture then because our family doc said the augmentin would "skew the result." The major March exacerbation seemed to hit after he got an upper respiratory infection I brought home from work. Nobody in our family had a known case of strep, and the rest of us all cultured negative (tested the whole family as a precaution). Our PANDAS son's throat culture in May was also negative (he's never had a positive throat culture). Sigh. Nothing is ever simple, consistent, or straightforward with PANDAS, is it? Hope that helps!

Hi, DCMom: My son is 13 now and weighs about 105 lbs. He has been on 500 mg daily augmentin for prophylaxis (per Dr. K) since Sept 2008. That dose didn't work. Even after IVIG in Oct 2008, our son had 2 exacerbations (mini one in Jan, major one in March) while on that dose. His recent ASO titer was double what it was last Feb (before the "exacerbation from Hades"), so it seems apparent that strep A did him in again despite the abx. Dr. K agreed to try an increased dose (875 mg augmentin twice daily, total of 1750 mg) for 2 weeks. Because it appears to be helping, he now wants to try upping the dose again (1000 mg twice daily, total of 2000 mg) for another month. This is the same dose Sammy Maloney took for a year. (Sammy was almost the same age and weight as our son at that time.) As I understand it, this would be considered a "mega dose" at the upper limit for kids this age and weight? (Maybe somebody with more abx expertise can chime in on that one?) Hope that helps. We'll keep ya posted!

Oh, okay, glad you have a support system with Dr. K! And that sucks about Children's. It baffles me how one doctor in a dept can be excellent, open-minded, and completely accept PANDAS as real, while all of his colleagues in the same dept can be utterly close-minded. And Dr. C is head of the dept there - you'd think other docs would follow his lead! It's like they never compare notes.... FYI: just got an e-mail response from Dr. K to our 3-month status update. He actually wants to increase our son's daily augmentin dose now, from 1750 mg to 2000 mg (same daily dose as Sammy Maloney)! I'm supposed to have our pharmacy call his office on Monday. So it appears he's open to this approach when things aren't progressing. You might want to bounce this off him, too. Good luck!!!

So sorry, greeneyes... we can totally relate to that drained, desperate feeling post-IVIG when things have stagnated or even seem to be going backward! Us Michiganders need to stick together, eh? Can't remember if you and I exchanged posts or PMs about this before, but have you tried Dr. Harry Chugani at Children's in Detroit? I've heard that his colleagues in the ped neuro dept there aren't very receptive, but he seems to be different. Our son did a PET scan study with him in March 2008 (showed inflammation in basal ganglia). Never really did treatment with him (he's 3+ hours away), but he was awesome about responding to e-mails and personally intervened to get us an appt with our local ped neuro dept (in SW MI). He also advised us via e-mail that he would recommend 3-4 IVIG infusions for kids with severe symptoms like our son's. I know that Mustang Carole has raved about how helpful and open-minded he has been in treating her son. Also, I just posted about the apparent effect we've seen (after slow, discouraging progress since 2 more rounds of full-dose IVIG with Dr. K this summer) from trying "Saving Sammy" Maloney mega-dose of augmentin. ( http://www.latitudes.org/forums/index.php?...ost&p=40568 ) It's still early days for us, but it might be worth a try for your son, too? Wish I had better advice. I still wonder if some of these kids need monthly IVIG infusions for a while to totally overcome PANDAS. (SF Mom posted about a Dr. K patient who had monthly infusions for about a year before he finally reached that "conversion event" and symptoms resolved.) For us, though, we had to pay up-front again for the 2 rounds this summer, so we just can't afford it. Best of luck. Feel free to PM me if I can help in any other way.

I don't know if I would test positive for ANA, but my son has tested positive every time this test has been performed for the past 2 years. And I have Crohn's disease - an autoimmune disorder. So I've been feeling that "irrational guilt" about passing on the genetic vulnerability to my son.

Thank you so much! Can't tell you how badly I've wanted to be able to post something positive, to provide some hope for others... just as others' shared good news has lifted our spirits in the past. I'm still paranoid about jinxing things, since we've had so many setbacks in the past 2+ years. But the last 2 weeks have given us reason for renewed optimism (when we really needed it). Here's hoping we can all celebrate success for our children soon... and that "Saving Sammy" and our kids' experiences can finally tip the scales so that the medical community accepts the reality of PANDAS. Children and families should not have to endure this trauma with the added stress of endlessly searching for doctors willing or able to help!

Yeah, actually, another recent blessing for us: after a year of fruitless searching (since our original DAN doc passed away), we finally found another local DAN doc who seems to be a keeper! She's open-minded, supportive, sympathetic, doesn't question the PANDAS diagnosis at all, and actually listens to parents. What a huge relief! Anyway, she ordered a bunch of blood tests, including an ASO titer. It was double what it was before his 3/29/09 exacerbation (143 in late Feb 2009, 280 now). Not super high, but if this is residue from an infection last March, I'm betting it peaked higher and is on its way down. (This is after 2 rounds of IVIG this summer, too. Would that lower the ASO titer level?) So I don't know if this elevated ASO titer in any way indicates a current strep infection or just shows evidence of an older one. I'd say the increase pretty clearly indicates that strep slammed him again to trigger that 3rd exacerbation, though. Thanks for thinking of us, Elizabeth!