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Everything posted by Worried_Dad

  1. In our family's experience, a big challenge for some PANDAS families is that we don't exhibit normal strep throat symptoms and don't have positive throat cultures. Our entire family's ASO levels were elevated last summer, despite no obvious symptoms. At the time, our local ped actually recommended treating all of us with a month of clindamycin as a precaution. Yeah, might not have been necessary for us as individuals... but if one or more of us were carriers, that would be disastrous for our PANDAS son. And - lo and behold - after the month of clindamycin, all of our ASO titers dropped significantly. Seems to me that this indicates active infection for which the abx were effective; just too coincidental that our titers all dropped after treatment. Our youngest recently spiked a high ASO again, despite no strep symptoms. Our new LLMD (and Dr. K, via e-mail) strongly recommended another round of abx for him. I think it's risk mitigation if nothing else: if he did have strep (and several cases were reported in his daycare) and was an asymptomatic carrier, then the exposure would be bad news for his PANDAS brother. So happens, our PANDAS son has had his most noticeable "rough patch" over the past month, since we found out about the youngest's ASO spike. Coincidence? Maybe... but we (and the docs) didn't want to risk it. I understand that docs in general don't believe it's necessary or wise to treat based solely on elevated ASO. I get that, for the general case. But when there's established PANDAS in the family, I think that "general" standard of care goes out the window, because the risk of exacerbation far outweighs the risk of abx. Something else weighed on our minds as well: our youngest didn't show classic strep symptoms and may in fact be a carrier... but some PANDAS docs suspect that years of "symptomless carriage" of GAS may gradually increase a child's risk of an eventual PANDAS autoimmune response. Did our PANDAS ds have elevated titers in his younger years and we never knew to even check because he didn't show classic symptoms? So some experts suspect that the "strep carrier state" is not as benign as most docs assume. That scares me!
  2. Welcome, Sharon. Great to have somebody with your expertise on the forum! You'll find a lot of medical pros on here (MD's, RN's, OT's, folks who work in pharmaceuticals, and at least one research scientist). Your perspective should add a lot of value - us laypeople appreciate insights from the pros. Thanks for joining us! (P.S.: even Dr. Trifiletti himself was a forum member here for a time, but his move to private practice made it tough for him to participate so he dropped off. You'll probably see some of his old posts, though; he shared some great info while he was here.)
  3. Hi, EA. This may well be a Lyme symptom, but it's also a common PANDAS symptom (and SC too, per the SC boards). This is one of the symptoms that 1st plagued our ds and still lingers even after OCD and tics have resolved. I think any disorder that affects the brain can cause sensory issues. Our ds is allowed to wear sunglasses in his high school as an accommodation. More comfortable... And it makes him look cool and mysterious! Maybe you could arrange for this as well? Keep up the awesome academics. Counting on you to rescue the PANDAS/PITAND kids of the future!!!
  4. Another vote for chronic infection or chronic exposure. Our ds's PANDAS symptoms also did not remit except after major treatments (like IVIG). Instead, he was more chronic, but each new flare took him even farther from baseline. Like your dd, our ds was on a "prophylactic dose" of augmentin (500 mg once a day) that didn't seem to protect him at all. As others can attest, a once-daily dose of this kind of abx is not effective; don't know about 100 mg of zithro, which seems low but has a longer half-life? For us, though, we didn't see improvement until we increased the abx dose to treatment level: 1000 mg of XR twice daily. Been on that dose for > 1 year. For our ds, it's been magic, but it still took months for him to climb out of the pit PANDAS dug for him. Another possibility that could complicate your dd's recovery - when we tested titers for our entire family as a precaution, we found that every one of us had elevated ASO despite no obvious symptoms of strep. A month of clindamycin brought our titers down, so it certainly appears that one or more of us were carrying strep. That constant exposure in the home might explain why our ds was "chronic" and didn't really remit. So - if you haven't already done this - might be worth having your family tested for infection? Hang in there, eljomom. Find a doc who's open-minded and willing to keep trying things. Keep testing for various infections. You'll find the answers!
  5. Yeah, it is kind of daunting, eh? Seems like there is some anecdotal evidence that PANDAS kids can "grow out of it" over the long term as their immune systems mature, but nobody really knows. Autoimmune disorders are notoriously hard to cure: I have Crohn's disease, and there is no real cure, only ways to manage symptoms. Based on info from Sammy Maloney and pandas16, it seems like PANDAS kids are still vulnerable as young adults but have milder exacerbations when exposed, as long as they take steps (abx) to mitigate the risk of active or ongoing infection. Personally, I still believe the abx are crucial. Our ds's current "flare" is nothing compared to what he had to live with for the 3 years prior to starting augmentin XR. And this is his 1st noticeable rough patch in about 18 months. Prior to the high-dose abx, he was in the "nightmare zone" on a regular basis, completely crippled and miserable. So I think there's great cause for hope. If PANDAS kids get effective treatment (abx, IVIG, etc.) and are shielded from full-blown GAS infection, I believe they heal. And - over time - there does seem to be evidence that the immune system "calms down" and the autoimmune response diminishes. At least that's what I repeat to myself over and over when I'm tryin' to get to sleep at night!!!
  6. Here's a quick layman's understanding. (Our son is also hitting a rough patch right now, even though he doesn't seem to have an active infection, but his brother and other classmates do.) Once the PANDAS autoimmune reaction is entrenched, anything that causes a ramp-up in the immune system is bad news and will trigger production of the auto-antibodies that target basal ganglia instead of GAS. As Swedo published, any infection caused flares in the PANDAS patients she tracked once the autoimmune cycle had been established. So - for PANDAS kids who are exposed to infection but don't seem to display the traditional symptoms - they may indeed have avoided active infection. But they are still exposed to the pathogen to some degree, and their immune system is "marshaling the troops" to fight it off. That troop buildup includes some of the soldiers that keep injuring the brain with friendly fire, so PANDAS symptoms increase. The immune system may successfully repel the viral or bacterial invaders, but there is collateral damage. Enough war analogies. All our kids deserve a ceasefire!
  7. Hi, Wilma: This wasn't for OCD, but for our ds's extreme insomnia. He was pulling all-nighters all the time, which made all other symptoms worse due to constant exhaustion. Anyway, our DAN doc at that time prescribed desyrel: it's an antidepressant used "off-label" for insomnia. It did help stabilize our son's sleep cycle. Over time, though, we had to keep upping the dose and side effects became more pronounced, so we discontinued. For our ds, all other psych meds were disastrous, made things worse. Traditional sleep meds (ambien, sonata) were equally bad, causing hallucinations and not helping him get to or stay asleep. For whatever reason, desyrel did help for a while. Big caution, though: in children, meds like desyrel can be dis-inhibitory and can lead to suicidal thoughts. After a later "exorcist syndrome" exacerbation when our son's OCD / insomnia were worse than ever, we tried the desyrel again - sure enough, triggered suicidal thoughts. We stopped after one night. Praying you find sleep and relief soon. Hang in there!
  8. Our ds had an MRI in the early days, which was deemed "unremarkable" by the local docs who analyzed it (although they commented that an "artifact" - tic-like twitching - made it difficult to interpret). Later on, we enrolled in Dr. Harry Chugani's PET scan research study and the PET scan was abnormal, showing inflammation in the basal ganglia (just as predicted with SC or PANDAS). Dr. K told us that the MRI's generally aren't sensitive enough to show the effects of PANDAS in his experience. That's one reason Dr. C prefers the PET scan for kids with these types of symptoms.
  9. Hi, Laura: Yeah, we're from Michigan, too (SW side). Dr. K treated our ds as well. After 3 IVIG's weren't helping as much as expected, Dr. K did agree to increase our son's augmentin dose to the "Saving Sammy" dose (1000 mg of XR twice daily). That made a HUGE difference for us. If you have concerns, I'd definitely discuss them with Dr. K. And we did recently find an excellent LLMD whom we really like. He splits his time between Detroit area and Grand Rapids, so he covers a good chunk of the state. PM me if you'd like more details on him. Good luck!
  10. Don't know if it was directly OCD-related, but insomnia was one of our ds's worst symptoms during the "dark days" of full-blown PANDAS. At one point, he was pulling all-nighters 2 or 3 times a week, which is horrible for anybody's physical and mental health. We tried all kinds of supplements, prescription meds like ambien and sonata, off-label stuff like desyrel... nothing helped consistently, and most made things even worse. For our ds, effective PANDAS treatment (IVIG and high-dose augmentin XR) eventually did the trick, and the insomnia (thank goodness) faded. He hasn't pulled an all-nighter now in more than a year. Huge relief for the whole family!
  11. Ah... yeah, I should have added that our LLMD did recommend some new supplements (cat's claw, allicidin (garlic extract) ) for our PANDAS ds. These are supposed to have general anti-microbial / immune support benefits, I believe. Maybe those are stirring something up?
  12. You totally have our sympathies! We're experiencing a mild version of this right now. Our PANDAS ds has basically had no bumps or backslides for over a year, since we started the "Saving Sammy" dose of augmentin XR. Then the past few weeks, he's had some struggles: dizziness, fatigue, says his thoughts are "all jumbled, like somebody took the pages of a book and mixed them all up." Very mild stuff compared to the "dark days" pre-XR, but still concerning. Our situation is similar to yours in that our youngest recently showed a dramatic spike in ASO titer despite no overt strep symptoms. (But, of course, NONE of our family have ever shown classic strep symptoms or positive throat cultures.) It's very hard for us to dismiss this as coincidence. Our PANDAS / LLMD agrees and has prescribed a month of clindamycin for our youngest as a result. We're hoping that clearing our youngest will benefit our PANDAS ds. Buster has posted some awesome explanations of the science behind this, but as I understand it, PANDAS kids are basically "allergic to strep." So - in the same way that exposure to tiny amounts of peanut can cause a severe reaction in a child with a peanut allergy - exposure to strep from a friend, classmate, or family member can trigger a ramp-up in symptoms for a PANDAS child, even if he/she is on abx. Hope I didn't butcher that. Maybe Buster or another of the scientific gurus on here will clarify!
  13. When we were in crisis mode after our ds's 1st "exorcist syndrome" exacerbation, folks who really knew their stuff (like Diana P) advised us that it would take at least 10 days on average for us to see improvement after starting treatment-dose abx. That's pretty closely correlated with our experience. Waiting sucks... but hang in there. The right abx make a huge difference for many, many kids on here!
  14. Yep, our son experienced this when things were really bad. Terrified us. The meds they gave him for his insomnia (ambien, sonata) made this 10 times worse, so if your dd is on any sleep or psych meds, these could have an impact as well. All of this has resolved for our ds with effective PANDAS treatment. Your dd will recover, too!
  15. Absolutely, we discussed this with our LLMD. But - since this just recurred after discovering that our youngest has a rapidly rising ASO titer again - he wants to wait and see if the clindamycin for our youngest has any effect on our PANDAS ds's symptoms. Will keep everybody posted! (FYI - our ds tested negative for babesia on the IGeneX co-infection panel.)
  16. OMG... today is my little bro's birthday, too. Do you get teased as much as he did? Does Cupid deliver your presents via bow and arrow? Anyway, have a hearty birthday, EA!!!
  17. Hi, Dedee: Yeah, we had both an EKG and ECG done on our son at various points. Luckily, both were normal. HUGE relief, as rheumatic heart disease is still a deadly complication from ARF, and our son was 1st diagnosed with ARF/SC. When I used to hang out on an SC forum, these symptoms were described as very common among the posters and their afflicted kids. Probably there are various infections (Lyme co-infections, ARF / SC / PANDAS, other PITAND stuff?) that can trigger this, though, as others have pointed out. Interestingly, our PANDAS ds has been complaining more of the dizziness, nausea, shortness of breath in the past month. Even has stopped going to tae kwon do, which he loves, because the last 2 times he went, he experienced the chest pain / dizziness / shortness of breath during exertion. So happens our youngest recently spiked a very high ASO titer again. Coincidence? Maybe... but this is the 1st time our PANDAS ds has complained about these symptoms in a long time.
  18. Yep, our PANDAS ds complained frequently of chest pain, racing heart, difficulty breathing, dizziness, nausea. He had great difficulty walking at the onset of his illness, when he was originally diagnosed with Sydenham's chorea. That all resolved with effective PANDAS treatment. So we, at least, believe there's definitely a relationship between PANDAS flares and these kinds of symptoms.
  19. Hi, lismom: We "sort of" did zithromax a few times, but not for any length of time. Did 14 days a couple of times early on (before Dr. K asked us to switch to augmentin), then did the standard 5-day Z packs a couple more. Honestly, I don't think we did it for long enough to gauge its effectiveness for our ds. I know zith worked very well for Buster/EAMom's dd and Diana P's ds. Our son definitely did have terrible fatigue, joint pain, and tics. In the early days, these were his main symptoms: he did not have any OCD that we (or the docs) noticed, but was originally diagnosed with ARF/SC rather than PANDAS. Don't want to oversell the augmentin XR - it doesn't work for everybody - but it has been amazing for our son. He has not had any stomach issues at all, but of course we've loaded up on probiotics to try to avoid GI problems. Since we went on the "Saving Sammy" dose in Oct 2009, he's made steady progress with no real bumps or backslides (knock on wood). Good luck to you and your ds. You'll find the right treatment!
  20. Yep, MomOfGirls, that's a nice summary of our ds's experience. The augmentin XR sure seemed to be the catalyst for our son's dramatic improvement after years of struggle. And here's another plug for the LLMD's. We recently had our whole family's ASO tested again (by the family doc 5 minutes away) and found that our youngest's titer had spiked back up to 499. Naturally, we wanted to repeat the clindamycin dose that had dropped his ASO from 597 to 254 back in June. Didn't expect much resistance... but the local doc declined to prescribe abx this time. He had consulted with a local ID specialist who advised him "not to chase titers" and that "there's no medical reason to treat" without sore throat symptoms. I asked for a follow-up meeting with our family doc to beg for the abx, given that none of our family has ever shown normal strep symptoms and that this "non-standard" reaction to strep seems to be the hallmark of PANDAS vulnerability in many afflicted families. He just abdicated responsibility by saying he "couldn't go against the advice of an infectious disease expert" (who's never seen any of us as patients and was unwilling to do so) and lectured me about "evidence-based medicine." I kept my cool, but I seriously wanted to slug somebody. So today we take our youngest to see the new LLMD who has just taken our PANDAS ds on as a patient. He reviews the titers, listens to our situation and prior experience with the clindamycin, shakes his head, and says "this seems like a no-brainer, doesn't it?" Without delay or hassle, he calls in a clindamycin prescription for our youngest. What a relief!!! We love our new LLMD. A doctor who actually uses common sense: what a concept!
  21. None of our family ever had classic strep throat symptoms or a positive throat culture, but all of us had elevated ASO. Interestingly, after abx treatment (augmentin XR for PANDAS ds, clindamycin for the rest of us), all of our ASO levels came down. So - to a layman - that seems to indicate that we indeed had active strep infections despite no standard symptoms / immune response. Unfortunately, many docs don't agree. Our youngest's ASO came down from 597 to 254 after a month of clindamycin, has now spiked back up to 499 after confirmed cases of strep at daycare. Our family doc decided he can no longer prescribe abx for this because a local infectious disease specialist (who declined to see any of us as patients) told him that "it's a mistake to chase the titers." So they told us to bring our youngest in if he complains of a sore throat and they'll do a culture; otherwise, no abx. So I'd say a lot of ID docs still believe that high titers or a "carrier state" are benign in the absence of classic strep throat symptoms, even for a PANDAS family. Argh....
  22. Personally, I believe that brain plasticity and the resilience of youth are on the side of our PANDAS kids as they mature, assuming they receive effective treatment. Maybe wishful thinking... but I tell myself that my ds can continue to improve and eventually completely kick PANDAS's butt. On the other hand, I have a hard time believing our ds will emerge completely unscathed and unchanged by this traumatic illness. I have Crohn's disease (another autoimmune disorder), and the fact of that illness is that inflammation tends to take a toll on the affected tissues over time. At dark moments, I worry terribly about what inflammation has done to ds's brain. But I take major solace from stories of "PANDAS survivors" like pandas16, who have learned to manage the disorder so well that they are able to excel in college, have a happy adult life, enjoy friends and socializing, and just generally inspire other PANDAS sufferers to keep fighting. Pretty wishy-washy, eh? Like most of us, I pray for the best and fear the rest.
  23. Our son is at about 95% now after 16 months of high-dose augmentin XR, but he went un- or under-treated for several years. We're assuming it just takes time to get to 100% in that case. Several neurologists told us that any brain injury will take several years to fully heal once the source of the injury (infection or post-infectious autoimmune) is controlled. So we're hopeful that he'll get there, given time (and protection from strep). During his "un- / under-treated" period, he would have exacerbations from exposure and each one seemed to drop him farther from 100%. His "baseline changed," as other parents on here have observed. Praying that - now that we know what we're dealing with and how to fight it - he'll never experience that dramatic baseline shift again. Very interesting to hear about your experiences, pandas16. Kind of reinforces my belief that there is no "complete cure" for an autoimmune condition like PANDAS, only effective ways to manage it. Would you agree with that, or do you think it will completely resolve given enough time?
  24. I'm gonna pick on the medical professionals a bit... 'cause, heck, they've made our ds's life pretty miserable for the most part over the past 4 years. "No, it can't be PANDAS. PANDAS doesn't come on this abruptly." - from a local child psychiatrist "He's doing this on purpose so we can't examine him. Young man, we're not going to help you until you stop that!" - head of nearby pediatric rheumatology dept when our son could not stop a "seizure-like episode" of chorea in the early days, before diagnosis "There's no medical reason to treat this with antibiotics." - from a local infectious disease specialist dismissing elevated ASO in the absence of strep throat symptoms / positive throat culture "Have you ever heard of OCD?" - local GP as our son was spraying himself with tons of Lysol in the examining room after we'd been trying to explain PANDAS to him "I'm an expert on PANDAS. I don't actually believe it exists, but I believe strep can aggravate latent OCD and Tourette's." - another local child psychiatrist "Yes, I spoke with your out-of-state experts. They haven't published anything, so their information is anecdotal and utterly irrelevant." - a local pediatric ID specialist "I don't know what this means, but it doesn't mean he has PANDAS." - another local pediatric ID specialist, about Cunningham results that placed our ds at upper end of PANDAS range "It can't be SC because the movements aren't continuous. And it can't be PANDAS because that doesn't exist." - local pediatric neurologist "This doctor (Dr. K) isn't qualified to make a PANDAS diagnosis. He's just a pediatrician." - another local pediatric neurologist who admittedly had never treated a case of PANDAS Gonna stop now. I feel my blood pressure spiking....
  25. Hey, Mati's Mom. Very sorry to hear about this. Our family is having similar issues with ASO spiking despite no positive throat culture or "classic" strep throat symptoms. Just wanted to give you a word of warning about seeking out an ID specialist, though. Our whole family (excluding our PANDAS ds, who's been on the "Saving Sammy" dose of XR for 16 months) had elevated ASO last June. Our local family doc (PA, actually) consulted with their new on-staff pediatrician who (amazingly) was familiar with PANDAS, believed in it, and recommended a month of clindamycin for all of us. Hooray! Thought we had it made. Our PA also said he was trying to refer us to a local ID specialist to evaluate this ASO situation for our whole family. Well, the ID specialist declined to see any of us as patients, saying that there was "nothing more to be done medically." Sigh. Worse, though, our youngest DS recently spiked high ASO again (rose from 254 at last check in Oct to 499 a few weeks ago). Again, he has no overt symptoms of strep throat, but there have been documented cases of strep in his daycare. We naturally asked for a repeat of abx to protect our PANDAS ds from exposure. The PA "consulted" with this same ID specialist who declined to see our family. He stated that there is "no medical reason" to treat our youngest based on the ASO rise in the absence of positive culture or symptoms, despite the fact that he's living in the same house with a PANDAS child. Now - even though she recommended clindamycin in the same exact circumstance back in June - the pediatrician says she can't go against the explicit opinion of an ID specialist. So we're stuck: our family practice won't help anymore. Just saying, be careful what you ask for. An uninformed or close-minded ID specialist can do much more harm than good to your cause!
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