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Posts posted by LNN

  1. In my experience, general practice pediatricians have heard of PANDAS, but many still consider it a theory. Most are reluctant to treat with more than 10 days of antibiotics, regardless of whether a child presents with "classic" symptoms. As a result, illness can quickly stretch from what "should be" a quick resolution following aggressive treatment into a protracted illness with months and years of ups and downs and re-exposures.


    My son should have been a text book case. Unfortunately, we're now approaching our second anniversary with this disease, even with Pandas doctors and plasmapheresis on our side. Diana's son, even with treatment from Dr K, needed two IVIG treatments and a year of recovery before she could tentatively claim success. So I think it's wise to add caveats about treatments and recovery.


    There's still so much unknown, so much yet to be "proven" and agreed upon, that it would be unkind to tell parents "hey- do this and your child will be cured." Expectations need to be tempered by a very real risk of setbacks. I know of kids who've recovered, outgrown, moved on. But I also know families who still struggle in spite of prophylactic abx and aggressive treatments. So I don't think the community can write letters to former pediatricians and claim victory. It's what we should - an end to the controversy and a re-framing of the problem so we can focus on cure. But the science is complicated and the public health policy still very controversial.


    I have shared my story and will continue to do so. But it's filled with caveats and pitfalls. I don't know that there are unequivocal success stories yet. We are a work in progress - all the more reason to share, exchange ideas and research. But we are all still a bunch of zebras until money is directed at the problem.

  2. If you can't get hold of the docs, go to www.ilads.org and send them an email with your location. They will email you a list of lyme-literate doctors (LLDs) near you. You can take the blood work results to them and get a treatment plan in place. Working with an LLD is probably your fastest path to a solution.


    Good luck and please keep us posted.

  3. We had a worsening, esp. at week 2, then we saw improvements over the next few weeks. The difference was that pre=pheresis, symptoms would ramp up like a bell curve - symptom 1, then add symptoms 2+3+4 then at peak, symptom 4 would go away, then 3, then 2 then 1.


    Post-pheresis, it wasn't a bell curve. More like fire works. A half day of symptom 3, then quiet, then a flash of symptom, then a burst of symptom 4. It was random flashes, not the predictable pattern we used to know. So we could tell something was different, even tho things were initially worse. Once things started to get better in week 3, they continued to get better.


    I hope things work out for you and your son. Any chance of trying it again or doing IVIG?

  4. We too have been wrestling with IVIG. We did plasmapheresis last summer after a horrendous 10 months (partly because it was easier to get insurance approval for pex and partly because tics were such a dominant symptom). It helped immensely, but thru this winter, we still saw two significant episodes (tho way milder than pre pex) and have finally reached the decision that we can't keep playing Russian Roulette.


    However, because my son is in remission at the moment, we have the luxury of deciding when to do it. We're not in crisis. We plan to do it at the end of the summer, just prior to the germ-fest of school. I too worry that we'll upset the apple cart. But one wayward sneeze from a classmate could do the same thing and send us into a bad episode. At least if it happens as a result of IVIG, I'll know we've given him a fighting chance of getting well longer term (opposed to having to battle back from another episode with his own deficient immune system).


    It's not an easy decision. I guess you just have to ask yourself which decision will leave you with the least regrets -not doing it unless he has another episode, or doing it as a preventative measure. Only you know which is the right decision for your family. But trust that you've gotten this far and must be a great advocate for your family, so chances are you'll keep making sound decisions, whatever they might be.

  5. Joanne,

    I am so glad to hear your story - while I know it's no blessing to have several co-morbid diagnoses, it must be a huge relief to have answers and have the support of knowledgeable doctor(s). Give your tired family a pat on the back for sticking with it and persevering!


    I'm half way thru Cure Unknown and am speechless - not just because I had no idea of how insidious Lyme/batonella/ehrlichia et al can be (as I type from my forested back yard in Connecticut). The politics of scientists and government bureaucrats against long term antibiotics, the egos on both sides, the bias and intensity of proving the other side was "wrong" instead of putting that energy into curing very ill people, and the witch hunts against the doctors who dared to use anecdotal patient experiences as a basis for treatment against the narrow confines of CDC sanctioned guidelines...it is terrifyingly similar and I pray with all my might that we aren't doomed to the same future.


    After reading this book, I'd caution everyone about making sure we protect our doctors' reputations and not put them at risk by "talking out of school". They are taking a much larger risk in supporting our children than I ever realized. I also had no idea how wide spread our story is - the Lyme, Chronic Fatigue and Fibromylagia communities all share our frustrations.


    I second your advice to parents whose kids may not respond entirely to PANDAS treatments or whose symptoms fall slightly outside "classic" lists - it's entirely possible there is more than one thing at play and we all need to keep looking at all the puzzle pieces. I love that this is a place where we can toss out ideas and bounce things off of each other - not a one size fits all forum of commiseration and uniform solutions. I hope we keep learning from each other.



  6. Kara,

    Unless your pediatrician is insisting on it, I wouldn't test titers until you've seen the new doctor. If they fall, the pediatrician might want to pull the prophylactics. Best to let sleeping dogs lie and focus on symptoms. I also second Wendy's post about pursuing other blood work instead (tho this may be part of the blood work that gets ordered with the new doc - might be worth a call to the office to see if the blood draws can be ordered before your first visit so you have some results to discuss as part of the initial visit).



  7. How does your childs behaviors differ from someone with Lyme disease?




    We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme.


    She does not get headaches, joint pain, no lethargy, no feeling "icky", no cognitive fog or memory issues...I wouldn't even consider Lyme except for the discussions on this board and the positive P41 band on her blood work a few weeks ago. But she was also sick a lot this winter - on antibiotics 4 times for sinus and impetigo - so perhaps the P41 means she has antibodies from a previous infection not specific to Lyme. So I'm not sure anything is warranted other than a note in the log I keep. She is absolutely perfect at the moment. Happily uses the couch as a trampoline and is razor sharp academically.


    Her only issues on the radar are 1) a loss of appetite/complaints of feeling like she's going to throw up (reflux?) and a few days later, constipation. As soon as the constipation is relieved, she bounces back and starts eating normally again. (normal for her is to eat like a bird - has since birth - and avoid vegetables at all costs). and 2) ocd-like behaviors and sensory complaints about feeling like her bottom is wet and avoiding underwear. These issues seems to crop up together and seem to coincide with illness (mostly sinus and a rash that resembles impetigo but not quite on her bottom 3 times this year). The only common thread is that it all points to her GI track from the start to the end. But it could also be that she just feels more hyper-sensitive when she's ill. She is by nature a drama queen. Doesn't take much to illicit a strong emotion from her even on a good day. So there's nothing we can really put our thumb on at the moment.


    Given the thousands we are spending on my PANDAS son these past 2 years, it's hard to drag her to doctor after doctor without something more specific. That's why we spent $1500 on an immuno work up for her (we have a ridiculous deductible plan). She turned up with a specific antibody deficiency for pneummo and the P41 and off the charts seasonal allergies. But nothing that screams for a specific treatment, aside from allergy shots and vigilance when she's sick (which we do anyway b/c of PANDAS son).

  8. Ok, I have a facebook account. But I am facebook illiterate. I figured out how to invite friends to vote. But then one asked "How do you vote?" and I don't know the answer.


    Give me Madeleine Cunningham's "The pathogenesis of streptococcus" and I will do everything in my power to understand it. Ask me to find the right button to click on facebook and I'm a social idiot.



  9. I just wanted to pull out a comment Lyme Mom posted in another thread about the book Cure Unknown by Pamela Weintraub.

    Meg's mom has me reading it and I'm riveted. It's about Lyme - so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.


    I'm only in the early parts of the book but I've already met characters who remind me of Dr K, Diana P., Beth Maloney - and Lyme's Dr Steers is a ringer for Kurlan/Singer. This is a non-fiction book but it's not a dry medical read. It's more of a novel and explains things in very easy terms.


    We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.


    I highly recommend the book.

  10. I would call the office and ask them to fax you a request for lab work - to either you or to the lab of your choice. That way you can have blood work done prior to your visit and have results to discuss at the visit. There are standard things they'll test for initially - ASO, anti Dnase B, pneumococcal titers, et al...


    Also send in any medical history you have - previous blood work, a write up of illness history/symptoms, etc. The more the doctor has in front of him at your first meeting, the more bang for your buck. Just make sure it's short and sweet. It's going to be skimmed, not read like a novel. (this is true for any doctor - I'm not speaking specifically about any one person). If you use an excel chart system, that's very helpful. Or you can do a table:



    1/1/10.......sinus infection/amoxicillin ............ocd, hyperactivity, joint pain..................5 weeks


    3/15/10.....sibling strep/zithromax ................ocd, poor handwriting, anxiety...............3 weeks


    If you've done the Cunningham test, fax or bring those results as well.


    As you gather everything, think about the story you want to tell. Organize things in a way that will make sense quickly. Be prepared to explain why you've come to think PANDAS makes sense for your child. But remember that you're going to see a PANDAS believer. So you don't have to go armed for battle. Be ready to be open to ideas and questions. Have a list of questions. What part of your story doesn't make sense to you? What comes next? There are other diseases that could be at play. The goal is a correct diagnosis and treatment plan.


    You're about to spend $10/min with a doctor. The more you put into getting ready for the appointment, the more you'll get out of it. Good luck!

  11. Ok, I have to play devil's advocate, freely admitting I don't understand immunology. My incomplete understanding of allergy shots (having successfully taken them myself for many yrs) is that they do not excite the immune system. They desensitize it. The allergen, in a very small dose, is exposed to the body in the same way a new friendly visitor is introduced to your attack dog. Over time, the body learns to recognize the allergen as something that does not need to be attacked.


    In contrast, a vaccine introduces a masked man to the attack dog and teaches the body that this is indeed something that should always be attacked whenever it comes near the house.


    I have a big interest in this thread because my daughter (non-pandas but on the radar) is about to start allergy shots. She had a skin test 2 days ago and is extremely allergic to all trees and grasses. We have no choice. By May, when all the trees are in full bloom in CT, her eyes will be swollen shut and she will not be able to leave the house for 4 weeks. She's only 5. Each year it gets worse and will continue to get worse unless we start shots. She's had a full immuno workup and has very similar results to my Pandas son - they are both specific antibody deficient (he failed 13 of 14 pneummo titers and she failed 8 of 14). Both have overall strong IG levels, neither have rising ASO or anti-DNase despite both having had sinus infections and my daughter having had 2 bouts of impetigo in the past 10 weeks.


    So here's my devil's advocate question - let's say I don't give my daughter shots. Well, she's going to be bombarded by pollen for 8 weeks, in high doses, and again in August when ragweed season starts and again in the fall when the molds from the falling leaves grow. So how would shots aggravate the situation? if anything, exposing her body to miniscule amounts of the allergen all year long will eventually desensitize her (they changed my quality of life immeasurably and they get their weak immune systems from your truly). And it's not like NOT giving shots is going to keep her body calm and unexposed.


    From what little I understood of Dr T's posts, allergens probably aren't activating the same TLRs. the body isn't seeing pollen molecules and thinking they're strep and producing Rambo-like strep antibodies that set off to attack the neuronal tissues of the basal ganglia. Instead, the body sees the allergen as something to be eliminated and over produces histamines to flush it away.


    I'm trying to understand how the allergic reaction can trigger a PANDAS reaction - and I do ask this with a sincere desire to understand - I have a lot at stake with this topic.


    I do get how IVIG could theoretically help allergies go away, as you get all sorts of antibodies from the IVIG, including the normal ones for step and allergens. But can you help me understand what you think is going on medically that makes the shots a PANDAS trigger?



  12. Go to youtube and search on "chorea" or "sydenham's chorea" and you'll find several videos that might be helpful in understanding what it looks like. Just realize the examples are just that - if your child doesn't do the exact movement, it doesn't mean they don't have chorea. That's something only a trained physician can decide. You can probably do the same for "milkmaid's grip".


    Milkmaid's grip is when your child grabs on to the doctor's fingers and squeezes. If during the squeeze, the doctor detects pulsing movements in the grip - a squeeze/release/squeeze pattern like a milkmaid milking a cow's teats - it indicates a neurological issue. Same thing if your child holds their arms out straight in front of them for quite awhile and as physical stress sets in, their fingers involuntarily move up and down as if they were playing the piano.


    I used to get upset when my son, even at his worst, didn't play the piano. Maybe it really was TS...turns out he showed chorea more in his toes than in his hands.


    Suzan - have you taken your daughter in to see a doctor about this? Sounds like chorea, but should be checked out so you have documentation.

  13. My DS7 had eye and hearing test issues last year during exacerbations. This year, no issues. Eye exam at optometrist shows 20/20 with strong healthy eyes.


    He used to complain a lot about the lights flickering. Our doctor didn't think it was related to Pandas, but I do.


    I agree it should be checked out by an optometrist (just found out my non-pandas dd5 has astigmatisms and needs glasses). But I wouldn't freak. Just one more way to spend some of that extra change in your pocket that you didn't know what to do with...

  14. We consulted with Dr L in Feb, and she did not think my son had PANDAS. She made a comment that kids with PANDAS don't seem to have good days - just bad days or really bad days. We've since had a second opinion with diagnosis of PANDAS/PITANDS, and a PK PETscan that confirmed inflammation in the brain. But on my off days, her comment rings in my head, making me doubt what I am looking at.


    During an exacerbation, my son never had "good days" - clearly nothing that resembled pre-pandas days. But he did/does have good days in between exacerbations and at the end of an exacerbation, as symptoms start to have longer periods in between (e.g. when a tic might only appear once every three hours instead of every 3 minutes or you might go a whole day without a melt down) those relatively "good" days do start to give you hope.


    I guess I'd rephrase it by saying they don't have "symptomless" days mixed in in the middle of an exacerbation. But "good" becomes a relative term when you're in the middle of insanity.

  15. prior to plasmapheresis, when my son would go into an episode, his symptoms would chart like a bell curve - First Symptom 1 (a tic), then add symptom 2, then add 3, 4 and 5. As he started to recover, symptom 5 would disappear first, then 4, then 3, then 2 then symptom 1. So in our case, a tic was always the leading symptom and it was always the last to go. Others have refereed to this as "healing in reverse".


    After he was healing from pheresis, we had explosions of symptoms, but it wasn't the bell curve we saw in an episode. It was more like fireworks...a flash of symptom 1 for 36 hours then quiet. Then a flash of symptom 4 for a few hours, then quiet, then a burst of symptom 2 or 5...


    Since last summer's pheresis and prophylactic abx, he's only been sick once. But he's had several episodes due to exposure to others who were sick. We no longer see a predictable pattern of symptoms. Maybe because he himself isn't the one who's sick. Don't know.


    Maybe what you're seeing is a sign of healing - or maybe it's due to exposure to someone who's sick?


    Also, we too use a variation of Buster's charting system. But if anyone has ideas on how to illustrate the whole family's health in correlation to Pandas DS symptoms, I'd love ideas. I know my daughter's bouts of sinus and impetigo infections correlate to his exacerbations, and I have also had several sinus infections this winter. How do you illustrate the overlay of how the whole family effects the system?

  16. Close the doors of stores


    My own "light bulb moment" just now. DS, at 3, would rage if he wasn't ALWAYS permitted to use the handicapped panel/button to open doors . . . to his preschool, to the mall, to a store, anywhere public. If someone was right in front of us and was polite enough to hold the door open for us, he would throw himself to the ground and refuse to move until the door was "all his" again. We knew we didn't see any other kids of his age having this issue, but we didn't know it could be tied to anything of note, either. It just seemed as though it was a part of who he was during that stage of his development.


    Eventually we took to just hanging back if someone was close ahead of us, waving off their polite offer to hold the door open for us with an, "Oh, that's okay, thanks anyway. He likes to work the door." :)


    YES!!!!! We too had to wait until the door closed so that my son could open it. Especially handicapped doors and unique doors - like the bi-fold doors at CVS that not only open when you step on the magic spot, but then open in a way no other automatic door does. Had a fascination with doors since before he could walk - also around the time he had his first eye blink tic that lasted 2 days. The family laughed in a polite way that made you feel defensive and strangers just thought he was quirky. it's one of those oddities that made me google asperger's more than once. We were spared the temper tantrums you describe, but we too had to adhere to letting him wait so he could be the one to make the door open again. (he is finally able to observe social etiquette - tho he still enjoys the automatic doors, he's now able to deal with it if someone else gets there first).


    That's why I answered "overnight, but with previous quirks". Because we'd have weird 10 day "episodes" of rages, ocd-like behaviors, clumsiness in toddlerhood...could never point to an illness trigger, but he was also known to have double ear infections without complaint. So who knows. But then on September 13, 2008, our world changed - three days after strep and scarlet fever.

  17. It's the y-boc scale that measures OCD. Swedo has a great presentation that she gives that was one of a few light bulb moments for me - LLM has that one - hopefully she will post the link, or I'll pull it up at work tomorrow.


    I knew my ears were ringing for a reason...

    here's the link to the Swedo presentation

    Dr. Swedo webcast Fall 2008 autism conference

    Progress and Pitfalls & Notes on PANDAS



    The link brings you to a complete list of that day's presenters. You have to scroll about half way down to find her particular presentation. It's one one of the best 30 minutes I've ever spent learning about the disease and it cleared up a lot of confusion for me. Lots of aha moments...

  18. I don't know that 5 days of prednisone is long enough under certain circumstances. They prescribe 10 days for for poison ivy because it takes more than 5 days to squash the inflammation. Our Pandas doc uses a 3-4 week approach, with 7-14 days at full strength, then two weeks of slowly tapering down. This has given us great results. We have not seen miracles in the first 5 days - improvement yes, but not complete. Tics were the most resistant symptom. So I don't think you can consider results after only 5 days conclusive either way.


    The one thing you should be aware of - if there's an infection, the prednisone could actually make things worse once you're done with it, because the pred would have suppressed the body's ability to fight the infection. I think this explains the uptick of symptoms after a burst in some cases. However, if you do pred after the infection is gone, then I think you may enjoy some longer lasting improvements. That's been our experience anyway.

  19. He told us that our son had a 20% chance of having PANDAS, the main reason being that my son could “function” at school. He said that it would be virtually impossible for him to turn his behavior "on and off.”


    I have to agree with Dr. T. who said that the parents on this board know more about PANDAS than 99% of the docs out there. I just think some of these docs (even Dr. Leckman, who has great intentions) might have some trouble with diagnosis just b/c he/she hasn't "lived it" first hand. Also, they also don't always "get" that this dz might not have sudden onset, that symptoms can vary greatly from child to child (compare "sneezing" Lauren Johnson vs. my dd who had severe OCD/anorexia/bi-polar beh.), that some kids might have "chronic" symptoms for years, that some kids are able to function (perhaps not optimally) at school, that symptoms can be more subtle (ie not all PANDAS is full-blown), that strep titers might be low, that kids can have strep throat without symptoms (sore throat, fever), that strep can be in non-throat locations, that PANDAS kids react to non-strep illnesses....


    I see an opportunity for another "Buster"-like table here.


    If you started with Swedo's original definition (the 5 core symptoms plus the dozen secondary symptoms), how would this community refine the definition? You want to include kids, but you also have to come up with something that differentiates it from traditional OCD/TS/ADHD. "Sudden onset" is one of those traits that seems to distinguish PANDAS kids from other kids as long as you expand "sudden" to include "or dramatic increase e.g. an 18 point jump on the YBOCS scale" - meaning you can have low level stuff all the time but that you see a "sudden" exacerbation in connection with exposure/infection with an agent (bacterial or viral). Something that distinguishes behaviors from the traditional waxing/waning pattern - e.g. "sawtooth"


    What would we suggest as a diagnostic questionnaire that would help a doctor decide if PANDAS should be explored vs. traditional TS/OCD?


    I will start a new thread if anyone's interested in pursuing this...

  20. I read it a from a few different angles. I do not like the controversial label. Actually, I hate that. However, I don't read the response as a big "anti PANDAS" rant. I read it as they believe PANDAS exists and the defintion should be changed, but they think parents are starting to think every TS or OCD is PANDAS. Now, I am not getting into the whole "would TS and OCD even exist if strep didn't exist" thing. I'm just thinking Leckman and the other doctor is saying there's a surgence of parents saying PANDAS and they are fearing the overuse of antibiotics.


    Now, I don't know Leckman's stance on chronic PANDAS. From this article, I get that he is more for the sudden onset defintion. Does anyone know?


    He also talks about a new IVIG study. Does anyone know the current status of that? i thought it was shelved for now?


    If anything, that article backs up why a diagnostic test is neeed and why Cunningham should get funding.


    I had the same take on it. I know he believes in PANDAS. Don't know his preference for definition, other than I suspect he's in the camp that would like to see "strep" dropped or changed to infectious agent. But that's speculation on my part.


    I know he's been working with Dr Swedo and Dr Cunningham on getting the IVIG study resurrected. But I don't know the timing of when they hope to get started.

  21. I don't think bacteria live outside the host for very long (few days at most?). Unless you think the brother may have infected your son's friend or the family, I echo P. Mom. If they're in school, on the bus, in the grocery store - they're going to be exposed. It will cause you endless distress, but it's also important that your son be able to live beyond the disease and not be caged by it. A gut-wrenching choice, I know.

  22. We had tic-dominant PANDAS for the first year. Now, post-plasmapheresis, we only have an occasional/brief tic and it's more OCD. Prior to pheresis, tics - weren't nearly as frequent as yours but were violent (e.g. he'd make the whole table shake if his hands were on it, if he held a glass of milk, his hand would jerk so spastically the milk would go flying across the room). He looked like he was being electrocuted. We suffered with echolalia and other vocal tics too.


    Like EA mom, we first saw mood improvement, then reduction of rage, anxiety and OCD, then tics - which subsided very slowly. The last tics to go were the ones that resembled "normal" behaviors only exaggerated - like the cough tic. My son was an antibiotics for three months and had a T&A and had done a month of prednisone and most stuff was gone but residual tics remained. That's why we opted for pheresis - the tics and cognitive fog weren't completely going away and a new school year of germs was on the horizon.


    To this day, when I see a tic, even if only for a few hours - I go thru the roof with anxiety. I can't explain why, since the OCD is actually more crippling. But the tics just bring such flashbacks of fear.


    Since pheresis last Aug, my son has been much better. I credit the pheresis with eliminating 99.5% of tics and in the 7 months since, we've had less than 10 days with any tics whatsoever. But DS hasn't enjoyed long remissions from other symptoms - he's a canary and between Oct and now it's nearly impossible to keep him away from other kids with strep. So we are probably headed toward IVIG. He's only 7, so we need to do something to keep this from getting worse.


    I don't mean to imply that you have to do pheresis or IVIG to get rid of the tics. I don't think anyone knows the answer to that. But you may have to prepare yourself for a long slow recovery from tics with just abx - and I would do everything in your power to get prophylactic antibiotics - a 10 or 20 days course probably isn't enough time for the body to calm down on its own. Without the abx to keep new infections at bay, the tics may never have a chance to fully subside. That was our experience anyway.


    That being said, do try to enjoy the gains you're seeing too. It's so easy to be distracted by the tics. You have to try, as hard as it is, to look past that and savor your hard won accomplishments for your child.

  23. LLM,


    I've seen "canary" reaction posted a few times. Can you please explain what that means exactly?




    In the "old days" coal miners would take a caged canary into the mines with them. If there were toxic fumes building up in the mines that were odorless, the fumes would overwhelm the canary and it would drop dead. The canary's small body made it more susceptible to small amounts of poisonous gas than the miners and it gave the miners a warning to get immediately out of the mine.


    So to be a canary means you're more susceptible to something and your reaction lets other know something foul is afoot.

  24. He was on the azith for about 2 months and we felt that he was starting to backslide. I think I probably just panicked, but we are in the northeast, and I had read that there could be some strains of strep that were resistant to azith around here. At the time he was on 250mg/day. I decided to try the augmentin xr because others had had luck with it. I also thought that between augmentin and azith, the augmentin would be the lesser of two evils for long term use.


    This is why I've wanted more guidance... lol.. I feel as though I'm flying by the seat of my pants and don't quite know wth I'm doing half the time.


    I'm not sure any one abx is "the" answer. One immunologist (non-Pandas doc) suggested switching them every few months. I think both zith and augmentin work well for our kids, but I'm not sure either can prevent the "canary' reaction, since there's really no true infection for the abx to fight, just an autoimmune response to a perceived threat. For that, I think you need to look to an anti-inflammatory in conjunction with the abx to calm things down. Not sure if Motrin is enough or glucosamine or if you need to resort to prednisone (which, like DC mom, we have found to be an effective treatment, not strictly a diagnostic tool). I don't think it's just a matter of giving the "right" abx. That would be far too simple.

  25. My son's ASO titers were 30 the day we started pheresis. They dropped to 3 when we were done. My son's ASO came back "negative" (no numeric value) 3 weeks after a raging strep infection where the rapid strep test turned + in 30 seconds (and it was his second strep within 6 weeks).


    We've only had one Anti DNase B test done - 2 weeks ago and it too was "negative" - (suggestion - don't use Clinical Labs as they don't give numeric values). Now that could be because he hadn't had an infection in over 9 months. I've seen the study where they say between the two tests, 90+% of strep infections will show up.


    But my son also failed 13 out of 14 pneumococcal titers, so he qualifies as having a selective antibody deficiency - in other words, his body fails to produce sufficient levels of strep antibodies to kill the stuff off (and those he does produce attack his brain). So my response to doctors is that these expectations might be fine for the general population. But I don't think they apply to kids with immune system issues. I think the fact you didn't see a high level right after a confirmed infection gives you some reason to think your child falls into this category.


    Thankfully, the experts we've seen haven't been too focused on any one "measurement". They look at all the pieces and don't discount a diagnosis because of titer results. My personal experience is that if you feel like you've hit a wall with a doctor who seems to be closed minded in their diagnostic tools, move on. There are so many unknowns about PANDAS and no doctor should be acting like any measurement is definitive.

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