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Everything posted by Worried_Dad

  1. Ah, interesting. Our PANDAS son's night sweats weren't drenching, more like low-grade fever leading to damp sheets, pillow, etc. He did tend to spike fevers intermittently for a long time, before we had a clear diagnosis. And he's extremely sensitive to heat and light. I've been told that this general sensory defensiveness is very common with basal ganglia injury / inflammation: even our OT mentioned this. So I'm not sure of the mechanism. Chronic strep infection? For our son, very possible: our entire family continues to have elevated ASO titers (although falling finally after month of clindamycin). Although our son is still heat-sensitive, the night sweats are no longer a problem now that long-term abx have beaten back the symptoms. It's all confusing, for sure, with lots of symptom overlap!
  2. Yeah, this topic comes up from time to time, and there definitely seem to be a lot of gifted kids affected by PANDAS. Here's an older thread on this topic: http://www.latitudes.org/forums/index.php?showtopic=5672
  3. Yep, our son too. He's still very heat-sensitive, but the night sweats disappeared on high-dose augmentin XR.
  4. Our son was originally diagnosed with Sydenham's chorea due to seizure-like episodes of choreiform movements that eventually evolved into tics. For a long time they were just motor tics, then vocal tics emerged. His later exacerbations, though, were characterized by more debilitating non-tic symptoms: OCD, anorexia, rages, cognitive fog, urinary frequency, etc. The tics were the main symptom in the beginning but became secondary to OCD over time.
  5. I wonder if they're talking about drugs like Haldol and Orap? Those are supposed to be dopamine antagonists and were mentioned as meds for treating SC in a lot of the literature I read back when our son was diagnosed ARF/SC. Dr. K told us that he'd seen haldol in particular really put PANDAS kids "over the edge" though, so seems like this is pretty risky for PANDAS.
  6. Here are a couple of threads that should help. http://www.latitudes.org/forums/index.php?showtopic=7430 http://www.latitudes.org/forums/index.php?showtopic=9956 Bottom line - have the whole family tested first with throat swab and extended cultures. If that's negative, request that your family doc order ASO and Anti-DNAse B titers for everybody (or those who had negative cultures). This has been a big problem for our family and probably explains why our son's PANDAS condition remained chronic for a long time.
  7. I hate our healthcare system that has no idea how to help our kids... and all too often, no apparent desire to even try. I hate dragging a suffering child to an endless succession of doc appointments only to be shot down in the first 10 minutes, without any tests ordered or any of our accumulated evidence considered. I hate being told that the fact we've seen so many local docs "raises a red flag": none of them offered to do anything, so why should that count against us?!? I hate not knowing if the remission will last... or if the local docs will continue to write the abx scripts... or if we'll ever figure out why our whole family seem to be infection magnets, and how to clear it. I hate the fact that this illness has a strong genetic component, so my other 2 boys may face the same nightmare. I hate how this disorder has "broken" our whole family and not knowing how long it will take us all to heal, individually and collectively. And I hate the feeling in the pit of my stomach when our PANDAS son tells me that he really doesn't remember anything from before he got sick. All of those happy, precious memories stolen, at least for now. But I love the strength and support of this online community: the one place where we've always felt welcome, where we've gotten actual answers that made sense, where we've been pointed in the only directions that didn't turn out to be dead ends. Thanks, y'all!
  8. Emmalily, your posts are so instructive and inspiring for us PANDAS parents, who observe the impact that this awful disorder has on our kids but can't really appreciate it firsthand. It's awesome to hear that things are improving and that you're reclaiming your life one step at a time!!! Our son (14) is also continuing to heal. Still struggles with homework a bit, and has extreme light sensitivity, but that's about it at the moment. He does complain of feeling hot all the time and often feels very warm (almost low-grade feverish) to the touch. Craves cool temps, runs the fan even on cold days. Have you experienced this during your healing period?
  9. This is a tough one to answer. The way things worked out for us, we didn't have a chance to try the higher-dose, longer-term abx until after 3 rounds of IVIG. Round 1 of IVIG made a huge difference but didn't last: another infection made things worse than ever. Rounds 2 and 3 didn't do much (maybe 20-25% improvement after 3-4 months). Adding the augmentin XR made a major difference within a couple of weeks. So did the 2 rounds of IVIG "set the stage" for the progress our ds made after starting the XR? Maybe. We'll never know for sure. But IVIG is a big deal and very expensive, especially if your insurance denies coverage. So - purely personal opinion - this is how we'd approach things if we had it all to do over. First, we'd try the high (treatment) dose of a "proven PANDAS" abx (augmentin XR, zithromax, etc.) for at least a month or two. It's the cheapest, quickest, least invasive option. If the 1st abx wasn't working well after a month, we'd probably try a different one before proceeding further. Although we never had this option, we'd next be tempted to try steroids for a longer, tapered dose (not just "burst") if we were certain we weren't dealing with another type of infection (e.g., Lyme) that might be aggravated by this and weren't dealing with Tourette's, where steroids can make things much worse. Dr. K doesn't go this route, but I've heard from others on the forum that Dr. L uses this treatment very effectively to get severe PANDAS symptoms "under control." If abx weren't helping or were only partially effective (not getting ds back close to "pre-PANDAS" baseline), we'd pursue IVIG or PEX. (IVIG was our choice: easier to find a doc / facility to administer it, can even be done in-home after 1st infusion.) Only if nothing else was working and we were desperate would we consider psych meds. (We tried a bunch of 'em along the way, and they were awful for our ds; made things much worse.) That's just one opinion, based on one specific child's experience (so far). I'd imagine you'd find many differing opinions on here, based on far different PANDAS journeys. But one lesson we learned the hard way: IVIG is probably only a "temp fix" if your child is not on a sufficient dose of the right abx before, during, and after the procedure.
  10. Actually, our son first became ill just before his 11th birthday. Originally diagnosed with ARF/SC, later PANDAS. Symptoms changed pretty dramatically between exacerbations and got worse with each one. Started the high-dose augmentin XR after 2 more rounds of IVIG (rounds 2 & 3 28 days apart) about a year ago, when our son was 13. He's now 14 and a totally different kid. There are parents and children on this forum who've been dealing with PANDAS (usually undiagnosed for a long time) for many years, much longer than we have. Don't know how they do it. Feels like the last 3 1/2 years have lasted a lifetime!
  11. Oh, man... did we ever! But I always considered that pure OCD, not sensory. In spring/summer of 2009, our son was going through 3-5 cans of Lysol a day: spraying everything until it was soaked, including his own skin. He would spray his arms until they dripped and made big Lysol puddles on the ground. We knew this was terrible for him, but when we tried to stop this, he completely freaked out and begged us to kill him. It was utterly terrifying; even shocked Dr. K when our son did this with the Lysol during IVIG rounds 2 and 3. During this time, he literally could not touch anything without wearing disposable latex gloves (like the healthcare pros use). He'd go through 30-50 pairs a day. We were buying big boxes in bulk from a local pharmacy (they must've thought we were nuts). He couldn't watch anyone prepare food, place it on the placemat (in my home office - only room in which he could eat), carry it, etc., and would squeeze his eyes shut until we left the room. If he saw, he could not eat a bite of it. Could not shower or brush teeth for about a year. So here's the good news: ALL of this melted away once we started the "Saving Sammy" dose of augmentin XR. Now he takes out the garbage for us, plays with our (filthy) puppy, rolls around in the dirt and laughs about it, just acts like a normal (i.e., sloppy) teenage boy. It is wonderful just to see him laugh when his 4-year-old brother slimes him with something! So - based on what I've read and what Dr. K told us - our son was a pretty extreme case of OCD contamination terror (35 on the Y-BOCS scale). And this completely resolved with appropriate PANDAS treatment. So have faith: your DD will recover!
  12. We tried OT for your son's severe sensory defensiveness. For him, it didn't help much, unfortunately, although the OT was very compassionate and supportive of the PANDAS diagnosis. Almost all of our ds's sensory issues have resolved following IVIG and prolonged abx (augmentin XR). Only lingering issue is sensitivity to light, and our ds just wears sunglasses outside to cope. (Even got an accommodation at school to wear the shades in class. Thinks he's James Dean now!)
  13. Feels weird congratulating you on having Lyme... but just knowing what you're fighting must be a huge relief. Kick those microscopic bacterial arses, EA!!!
  14. My gut feel (and fear) is that there is still strep in our household and that one (or more) of us isn't cleared and keeps re-infecting the rest. Guess we'll see what the latest round of ASO titers look like. If you're pretty sure your one dd is the carrier, then it might be worth trying the clindamycin / rifampin combo if your ped is receptive. Wish I had better answers. Will post more when we get the latest ASO and see what the docs want to try next. We also requested Myco p titers for everybody to see if we're dealing with co-infection. So many things to check!
  15. We haven't done this yet but may be headed that way. I remember reading posts several years ago from some parents whose infectious disease specialists were using the combo of clindamycin and rifampin as an "eradication protocol" for PANDAS kids (or their siblings) who seemed to be GABHS carriers. At least one mom had commented that this always worked for her child and eliminated the PANDAS symptoms as well. I feel your pain and frustration, FA. Our whole family have elevated ASO, we all did a month of clindamycin together, then waited a couple of months to retest. The ASO came down somewhat (except for my wife's, which rose slightly) but are all still highly elevated. Our family doc is baffled, was sure the clindamycin would bring our titers down much more quickly. We're waiting on results from another round of ASO titer tests and the family doc has referred us to a local infectious disease doc. And adding to the stress - the pediatrician is starting to balk at refilling our PANDAS son's augmentin XR prescription. It's been a year on the XR, but we can't stop while the whole rest of the family has elevated ASO!!! Anyway, I e-mailed Dr. Cunningham to get her advice. She did say that - for some people - ASO titer levels come down very slowly. Nobody knows why. She advised us to re-test and definitely pursue the infectious disease specialist referral. If you can find an open-minded ID doc, they seem more likely to prescribe a "heavy duty" combo eradication protocol like clindamycin and rifampin. Best of luck, and let us know how things go!
  16. Here's an old thread that might help: http://www.latitudes.org/forums/index.php?showtopic=6027 Now here's the bad news. We found out that hard way that - although the diagnosis codes don't change that often (as far as I know) - the procedure codes change every year. It's like a perverse guessing game between the service providers and the insurance companies: new codes are created each year, the old ones no longer work, the service providers have to try to figure out which codes are most likely to be covered for a given procedure, but the insurance company won't give them any hints because they don't want to cover them. So we had IVIG 3 times in 2 different years. Codes that worked great for reimbursement the 1st time (although took 9 months to get any money back) were no longer valid, and the "new" codes were reimbursed at a much lower rate. Sigh... Hate to repeat myself, but I really hate our healthcare system!!!
  17. As others have mentioned, our experience was that - even though psychiatrists can legally prescribe antibiotics - they aren't comfortable doing so and will just refer you to a different doc for this. If you're lucky enough to find a sympathetic child psychiatrist who believes in PANDAS/PITAND and is also willing to write an abx script, you hit the jackpot!
  18. I just want to add that while I appreciate that there might be a lot of diagnostic confusion that goes on amongs us here, I just have to put in the word that most of these lyme doctors are very, very skilled and have the training, expertise and clinical experience to diagnose people infected with lyme and other infectious pathogens. Good point. In our case, we started with an LLMD who suspected Lyme. He ultimately diagnosed ARF/SC instead, then later changed that to PANDAS.
  19. Unfortunately, Dr. E, it's even more complicated than that to distinguish Lyme from PANDAS. Our son's symptoms started with physical symptoms often associated with Lyme: joint pain that moved from joint to joint (migratory polyarthritis), muscle weakness, difficulty walking. Six weeks later the "seizure-like episodes" of chorea began. I believe these are common physical Lyme symptoms... but they're also classic symptoms of acute rheumatic fever with Sydenham's chorea, post-strep autoimmune disorders that are considered part of the same "spectrum" as PANDAS by many experts. So even the physical symptoms overlap considerably. No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!
  20. This is "Do What You Have to Do" from the album Surfacing. Awesome song - I love Sarah's stuff!
  21. Yeah, Dr. K told us this as well: that PEX seems to be more effective for PANDAS kids primarily afflicted with tics, while IVIG is more effective for kids primarily afflicted with OCD. Not sure if this is based on his own experience, comparing notes with other clinicians, or on the studies already cited. When our son first became ill, he had massive chorea / tics and no recognizable OCD. But his next exacerbation led to an overnight explosion of OCD which dwarfed the tics in terms of incapacitating him. So by the time we saw Dr. K (post-exacerbation), OCD was our biggest concern. So that's another maddening aspect of this illness. The symptoms morph from flare to flare. Tics may be the major issue today, but OCD or anorexia or rages may be the major issue after the next infection hits. Tough on the docs, and tougher on the kids and families!
  22. This post throws me back into the "nightmare days" when our house felt like a war zone and my wife and I were totally shell-shocked. Our son (like many on here) had been such a mellow, pacifistic kid before PANDAS began tormenting him, then that all changed during his Summer 2008 exacerbation. Can hardly bear to dredge up those memories, but here are some quick thoughts. Is your ds9 on any psych meds? These made our son's rages 10 times worse. In our case, ativan was the worst, but klonopin was similar, and zyprexa didn't help matters. When we tapered off the psych meds, things got much better. We made it clear to our son early on that hitting or hurting Mom, Dad, or his brothers was not acceptable no matter what. He seemed able to grasp this and the consequences after initial warnings: we told him we would have to take him to a hospital if he couldn't control himself enough to avoid attacking other people. In our son's case, the basement became his "haven" when his rages exploded beyond control. He would go down there, pace, and kick and punch things. He trashed the basement at one point, but better objects than people, we figured. Our biggest concern back then became a fear of him hurting himself rather than others. Frankly, he channeled most of the destructive energy on himself: hitting himself, punching concrete walls, etc. We tried desperately to find some way to distract him during these episodes. For our son, reading to him was the only thing that worked very often: we read the entire Dresden Files series (11-12 novels) about 10 times, my wife and I taking turns. Looking back, I don't know if this was right or fair, but we did lay down an ultimatum: if he started hurting family members, seriously injuring himself, or refusing to eat (he had terrible anorexia at this point), we would have to take him to the hospital for his own protection and the family's protection. That threat haunts my conscience sometimes, but it did seem to work for our son: it brought him back from the brink. (Although there were times where we feared we'd have to follow through on it, and that was a horrifying thought.) Wish I had more to offer. What ultimately eliminated the rages for our ds was serious PANDAS treatment: high-dose abx and IVIG. Best of luck, and our prayers are with you!
  23. Our ds (14) has also been on the "Saving Sammy" dose of augmentin XR, 1000 mg twice daily, for almost a year now. He's probably between 115 and 120 lbs at this point. It's been working very well for him to date: he's back in school after a 3-year absence. Mom with OCD Son - we've been trying to figure out when to try a lower dose, too, but are scared to death to try it. (Rest of family still has unexplained high ASO, despite a month of clindamycin.) Please keep us posted on how things go with your ds on the lower dose. We hope to follow in your footsteps!
  24. I've heard from docs and other parents that tics seem to be the most stubborn symptom. For us, they were the last thing to go, especially the vocals. Wish I knew why!
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