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Posts posted by SarahJane

  1. Been thinking & this reminds me of the link Stephanie2 posted on 10/14/2010 about vaccines after age 50. I don't know if there's a way to reference to that thread, so I'll just put the link here again.




    May be worth asking your neighbor if she had any vaccines prior to the "URI" or in the general timeframe. Will be interesting if she did. Maybe shingles or something as I'd think flu or pneumonia wouldn't have been done before Sept. Are we going to be seeing this "rare" issue pop up with the youngest & oldest segments of the population? Hmmmm....

  2. Interesting...please keep us updated if you can. She is lucky to have you as a neighbor. :)


    PANDAS has rocked my universe and world. Once you know something, you can't not know it. So it surprises me that so much that the medical community knew about effects of illness went out the door once Freud lit his pipe and uttered the words "it's all your mother's fault." (I'm paraphrasing there, of course!) I've used this example in explaining it: back in 1891 if the dairy farmer's daughter fell ill & soon afterwards started only hopping and counting eggs to evens and pulling out her hair and screaming for no reason and had difficulty sitting still and showed any other myriad of mental illness symtoms, the traveling doctor would have likely been able to link it to her illness. It would have been incurable but explainable, and she'd become the "crazy" or "touched" dairy farmer's daughter--poor thing. Now, if in 2010, the dairy farmer's daughter had those symptoms, it'd be home/school stress or psychosomatic or too much TV or permissive parenting or a bunch of other explanations that would ignore the fact that a month before she'd had strep or the flu or pneumonia or a vaccine, etc.... And there would be a pill she could take & if that didn't work another pill could be added. So is the increased use of SSRIs in the 80's/90's part of the problem? Back in the 60's/70's, mother may have had shelter with her little helper but her 6-yr-old didn't get the pills. What did they do if a kid presented with PANDAS symptoms? OR since the vaccine schedule was so different & abx/pesticides weren't as abundant in our food supply, did as many kids have these issues? It truly boggles the mind.

  3. I was thinking about this thread this afternoon. The bright kids have bright parents who were able to figure out the PANDAS diagnosis often with little or no medical help - sometimes even with medical interference. These parents are online searching for answers and options. Meanwhile I can't help but think there must be children of all levels of intelligence with PANDAS whose parents are accepting the advice of their doctors (as I did for almost 4 years). So these kids are being misdiagnosed and mislabeled and filed away into the world of mental illness and no one stops to question why. It scares me and makes me angry. That was our situation for 4 years, and as much as I would love to take credit for figuring this out on my own, it all came down to a suggestion from a friend to look at strep. But I'll still take the credit for being able to act on that suggestion with non-stop research and tenacity when it came to convincing doctors. Just thinking out loud...



    This is what makes me so angry as well. That schools are quick to judge a kid who act out and turn them into a behavior problem despite it being a major change in their personality. And if there has ever been a question about development, doctors will quickly go back to that despite those issues being far behind the child. And doctors and teachers do expect you to just go along with whatever they say. Are surprised when you don't. And I feel so badly for the kids without advocacy, as much as I feel my advocacy was inadequate as I didn't push as hard as I probably should have with our school or doctors. But this takes a toll on you as a parent too...I still can't drive by his old school without a bit of panic. And there's a shock when you show a doctor something and they don't believe you. I'm a smart lady and usually a rational/objective person...opinionated but rational/objective, but if you want me totally irrational/subjective then have something involve my kid. I've never felt this out of control...ever. And the shock of having a doctor tell you to your face that it's not something when you have read everything you can find on it and can see it and can show it and are living it...well...I'm sure I don't need to say anything else about that. Those of you who haven't lost time trying to get the dx are very lucky.


    Our ds was gifted, & started gifted classes just at the time his PANDAS symptoms flared last Feb. IF he hadn't been a top kindergarten student with no drop in his academics, he would have been relegated to a certain category due to his behaviors. And I say his academics didn't suffer, BUT he wasn't working at the level he could have been working at since he was mostly doing K work & clearly could have been doing higher grade work. And once he started getting bad marks in his behavior categories during the 2nd half of the year, he no longer got any stars for "exceeds expectations" but only got checkmarks for "progressing as expected." He was in K doing 3rd grade spelling & above grade reading & was still just getting "progressing as expected" in the 2nd half of the year. His first 2 grading periods were full of great marks. Seems silly to argue over a getting a star vs. a checkmark in K but a lot of it is subjective as not many grades are handed out. And he did great on most of his unit tests (some of the math units in the 2nd half of the year showed difficuly with material--likley due to PANDAS). AND there was a comprehensive test done at the end of the year, where they put on his report card that his score dropped from a 89% in 1st half (national avg was 76%) to a 68% in 2nd half (national avg was 87%) and they didn't even question it. I requested the printout scores & he actually had a 95% in the 2nd half of the year. But they put down the wrong score & didn't even double check it tho' it totally stands out on his report card. His teacher did at least acknowledge thru it all that it was a big change in his personality, BUT that didn't make it much better. And after four months of behavior issues in the last months of school, it was like the first 6 months of school when his behavior was good didn't even happen. I did keep waiting for the teacher to change her story & say he misbehaved the entire year, but they had a color system for behavior & it totally showed the shift in his behavior beginning in Feb (one month after he'd had strep...so I didn't have sudden onset...blah, blah, blah).


    And I say all that because I'm angry. And I do believe that kids can likely have separate issues (like ADHD, OCD, TS, etc...) and not all may be PANDAS, but it's all just suspect to me...especially if 2 or more exist. And I do believe this affects so many more kids than we know...and maybe adults. And in some ways, I feel that all us parents doing the fighting now, will be able to teach others how to do it. If we aren't too tired. <_< Or maybe someday, there won't be a fight & it will just be accepted & treatment will be a given.


    I'm actually in touch with a leading psychologist for gifted kids. I plan to communicate with him about PANDAS (sorta why I asked this question). Many of the symptoms of this illness are what gifted kids are misdiagnosed with, which IMO cannot be a coincidence. Seems that there could be a link to a physicality of brain development as well as the infection. I don't know who has all the brain research on gifted kids, but I'd love to get them in a room with the PANDAS experts. I'd love to see the correlations.

  4. My son has complained a few times of the soles of his feet hurting. Would it be a constant pain or occasional? He has only started saying this recently & only a few times. I do know he's had strep, but I have no idea about ticks but am sure about PANDAS. We're not in an "affected" area, but I've started Cure Unknown & am sufficiently freaked out. I wasn't planning to even check Lyme...now I don't know.

  5. Just wondering how many of our kids fall under the gifted category (or advanced). This would be whether or not you've done formal testing or not...maybe you just suspect your child is gifted/advanced. Dr. K's phenotype mentions that many PANDAS children usually have early speech development & usually (prior to the illness) excel in school, particularly math & sciences.


    Our ds(6) knew his alphabet by 2 (NOT just by rote recitation--could put jumbled letters in order) & was spelling/reading by 2.5 (words like "elephant"). His first words were around 9 months, but he did have a speech delay that he outgrew by around 4.5 (did therapy, OT, etc...). We did WPSIII testing when he was 4.75 & his verbal scores were thought to be underestimated (wouldn't always cooperate with tests), but his processing was above average, performance was at 99th percentile, general language was at 98% percentile. His full scale IQ was at 94th percentile BUT was affected by his lower verbal score...so it too would have been underestimated. His reading was 4 standard deviations above the mean (age was 4.75 & he was able to read on 2nd grade level w/ mid-1st grade comprehension). His math scores were also advanced for his age. His memory is remarkable.


    The IQ testing was done when he was so young because we kept facing development questions during what I think were mild exacerbations since I suspect early onset (when I was totally in the dark that PANDAS even existed). We did formal ASD evaluations after DOCTORS started questioning his development at 2.5 (2 months after his 1st ear infection & in reaction to our concern about speech delay), & in the evaluations, we were told no autism but speech delay & the questions still kept resurfacing. The episodes would last about a month (we thought they were growth spurts) & then he'd seem so much better & we'd wonder what we were worried about. Sometimes the episodes did coincide with an illness, but I didn't make the connection until I reviewed his medical file. Once I got the "gifted" term, it explained a lot of the behaviors we'd see, and we had 1.5 yrs without questions (right after his tonsillectomy--adenoids were taken out separately back when he was almost 3). We even thought that giftedness was part of the school issues we had back in the spring when the 1st major exacerbation started. I do still think his giftedness was at play, but PANDAS was the cause. We did a questionnaire on ASD this past spring when ds's behavior changed & school was so affected, and were told that while ds showed some ASD behaviors, he did NOT meet the DSM-IV criteria. We did receive an anxiety dx. Now, we do have the PANDAS dx from Dr. K, & IVIG is next month.

  6. There are no KY PANDAS docs on the lists. There are some who say they treat PANDAS patients, but I don't know that they made the dx since they said ds(6) didn't have it despite all signs pointing to yes. (And I'm highly suspect we had early onset.) If your SIL is willing to learn & get herself on a list as a PANDAS dr, that will help KY & IN. Potentially even southern OH and sadly northwestern TN. And to make it even worse...maybe even WV since it's 4 hours from Huntington (where I'm from originally) or 5 hours from Charleston. And if she knows anybody in Lexington and can talk them into being a source, that would be even better. I finally found someone who was very nice & even did some research before our 1st appt even tho' everything didn't go exactly as I planned since ds(6) threw a fit at 1st appt. But, he believes in it, which is great. And I'm coming to him with the dx vs. asking him to make it. :)


    And that question about remission...there's no cure. So another infection/exposure may or may not cause an exacerbation. Depends on if your treatment is working (abx or IVIG or with some also SSRIs/mood meds). Hopefully, puberty will bring an end to it but not always. From what I can tell too, you might be in remission but still not be back to 100%, meaning there's no infection/exposure but all tics/OCD/behaviors didn't abate but it's not quite an exacerbation. OR your child may have learned bad habits during the illness that may need to be addressed with therapy.


    EDIT: There is a pediatric neurologist on one list. Forgot about that. Need to give him props! w00t But other than that...nothing else on the lists anywhere & KY is a pretty big state with lots of tri-state areas too.

  7. VERY COOL! :)


    I'm actually planning to send a letter to local med schools to let the dean know I have a PANDAS kid. I'd encourage everyone to do so. Beth Maloney said she sent all the deans her book, right? I thought it would be good for them to see a real, live PANDAS mom. (If only to practice their "it's not PANDAS" line. LOL!) Of course, I'm sure when they got the book that they sat down & read it in basically one sitting like I did. ;)

  8. Did you do Pred again for symptom relief? Was it strep exposure? Wonder if he has MP or other issue like FluMist shedding exposure. Is he on abx? If so, what kind? (I've heard MP doesn't respond to penicillin.) Are you going to do 2nd IVIG or wait it out?


    I hope this post finds you a day later and in a MUCH better place. :)

  9. I remember reading about this girl being on the Today Show when Lauren was on. At that time, yes, I thought PANDAS. But is it bad of me, now that she is involved in this, to not want to bring PANDAS into the picture with her?


    Even if she does have PANDAS, it doesn't mean that caused her to take part in this murder. The thought of this disorder being dragged into this when it may not even play a role in it, would worry me. It also worries me how people may view our children. I can see a spiral occuring with that.


    Any untreated mental illness can cause issues. PANDAS is a physical disease that presents with mental illness symptoms. So, IF it is mentioned, I think it could blow the lid off the fact that many "disturbed" teens/kids could have an underlying physical concern that does mean they're unable to control themselves. Not saying that's the case here...many factors obviously go into this specific matter as well. Kids aren't even expected to be able to control themselves until their 10 or so due to regular brain development. Throw in an undetected autoimmune disease that attacks their brain...whew. Even treatment doesn't guarantee results but does give a name to it and explanation. And if you treat the mental illness presentations with undx'd PANDAS, you're still pumping chemicals into a child with unknown future effects (tho' it can be necessary for functioning...not judging...just saying). And to make matters worse, chemical treatment can make actual PANDAS symptoms worse, which leads to MORE chemical treatment in the undx'd. I hope that at some point we are able to help ALL the kids out there. I do believe this is more widespread. And I can imagine lots of anger will ensue from the mis-dx's & lost time. I think the release of info should be done in a prudent manner so as not to incite panic. But at the same time, I want to SCREAM about this possibility to everyone I know & meet. I just want our kids to be well. ALL OF THEM! And I want ALL OF THEM to get the help they deserve no matter what other dx's they may have.


    P.S. I realize that we ALL want ALL OF THEM to get help. I was on a roll. :)

  10. OH MY!!!!! The HORROR!!!!


    Forget the PANDAS...trust your instincts...mother your child ever however you feel compelled & however you feel he needs it. Whether you (s)mother him or not, it won't make it any easier. And this is enough to make a "average" kid be not-so-average. My advice is hold him as close as you want. (Something like this would make me really cling-y to my ds.) Not letting him do it isn't going to mean he's not going to want it any less.


    So sorry for everyone involved. Whew. Good luck in dealing with an added issue.

  11. You are likely on the right track with PANDAS despite the "great" test results. I'd say that reaction to amox was really an exacerbation. We used to think it was the abx making ds act a little whacky & prepare ourselves for it...never thought it was the illness until now. We'd find that sometimes he seemed more mature after an illness, which was proably just when we finally cleared an infection & he his brain wasn't being attacked. I also had my ds on allergy meds & stopped using them due to the "side effects", which I think now, might've been exacerbations too. (If you read on any of those web sites that show side effects of meds, it's probably actually a good source for PANDAS test subjects.) We've seen "hygiene" issues before & now figure it was strep. And strep can hide in the body anywhere. We think we had early onset with mild exacerbations until he got dx'd with strep A. & then it wasn't so mild anymore. Whether he'd had previous infection, I don't know because he's asymptomatic. Had what seemed like a virus or flu when Dec strep dx'd. Before positive culture, I dx'd 2nd case of strep in Sept based on behaviors...no fever, no pain, no complaints (unless OCD, rages, tics can be considered complaints for PANDAS kids & I think we can safely assume they are).


    Your son's likely being exposed all over the place at school to strep & flu (including the shedding of the shot) & all kinds of stuff that's causing his reactions. My ds would have good days, bad days, & HORRIBLE days at school. And not to scare you (tho' it will), I hope that your son doesn't ever rage at school, because if you want to feel a sudden shift in your relationship with absolutely everyone at school...have that happen. They're helpful up to then...after that, not so much. And even tho' I thought they were panic attacks, it didn't matter. And even tho' I was doing everything I could think to do to help him, it didn't matter. They will pick apart every single thing the kid does & watch them like a hawk & increase the anxiety & keep activating that fight/flight/fear response until your kid shows them EXACTLY what they wanted to see & then relish in telling you ALL about it in meetings/phone calls/notes/etc.... We're homeschooling now.


    P.S. I PM'd you too. Long one. :)

  12. I'm kinda new here & my searches didn't turn up any data on this (tho' I figure it's here somewhere), so I'm gonna post info about an info source I found.


    At the Autism One Conference back in June, there were several PANDAS presentations. Some of you were likely at the conference, but for those of us who weren't, we can buy the DVDs. You hear the audio & see the PowerPoint slides. I ordered a few weeks ago & got them yesterday. So far I've watched/listened to all but Cunningham's, and WOW! Great info & understandable (tho' they've made reference to the advanced nature of Cunningham's presentation...LOL!). There are actually other DVDs for sale that would be also interesting, but here's the link & a description of what's there on PANDAS: http://www.autismone.org/conference_dvds


    $23 Dr. Madeleine Cunningham Autoimmunity and Behavior: Syndenham’s Chorea, PANDAS, and Related Disorders - 27845

    Autoimmunity and Behavior: Syndenham’s Chorea, PANDAS, and Related Disorders


    $23 Dr. Rosario Trifiletti PANDAS and Related Illnesses: No Longer Black and White - 27850

    PANDAS and Related Illnesses: No Longer Black and White


    $17 Dr. M. Elizabeth Latimer & Laura Matheos PANDAS – A Clinical View and Treatment Options - 27857

    PANDAS – A Clinical View and Treatment Options

    <NOTE: Dr. L wasn't there...hello to Laura if she's on here--enjoyed your talk!>


    $17 Dr. Denis Bouboulis and Lynn Johnson The Immunological Role of PANDAS - 27864

    The Immunological Role of PANDAS

    Dr. Denis Bouboulis will talk about the importance of diagnosing cryptic Strep, diagnosing Strep in the whole family, and erradicating Strep from the whole family. He will also discuss how the immune system is affected by PANDAS. Lynn Johnson will talk about the parent side of the journey, finding a doctor, and treating the whole family for maximum success.

    <NOTE: Lynn, if you're here...WOW! All 3 kids and the different symptoms. Wow.>


    And to all the doctors...THANK YOU for all that you do!!!

  13. I don't know if I can claim "wise" PANDAS parent status yet, but I'm a VERY, VERY quick learner! I actually just listened to a presentation that Dr. T did at the Autism One conference back in June (ordered the DVD, which shows the slides--excellent & I will post separately on those too). On there, he said something about how there are additional tests for strep that can pick up a few other classes that ASO/DNaseB don't get (like maybe 3 more, I think). So maybe they'll look for those other strep strains if not done in the testing.


    I'm not familiar enough with your son's symptoms to know if he had recurrent ear or sinus infections in past or if this was from the FluMist only. Does he have his tonsils/adenoids? If so, how do they look...enlarged, white patches, etc....? I do wonder how seasonal allergies play into this...it's never mentioned as a cause but it seems many of our kids have them too & can be a trigger maybe (not sure that I've seen that documented or that I'm extrapolating association). PANDAS is so new, I personally wouldn't rule anything out yet. Especially if you didn't see any of this before the FluMist. Have you culled thru the medical records to every illness to see if you can find behaviors/incidents after treatments (including any negative strep tests since they're so unreliable). If you've done a steroid burst & he responded, then maybe that will be enough. That he is responding to abx points to some kind of infection inducement IMO. And EXPOSURE is the key too...he may test negative but the immune system has been activated for whatever infection.


    And what irony...normal test results cause concern. Just one more thing to be mad about & what this thing does to us! :angry:

  14. When I had a strep test recently (white patches, swollen tonsils, no pain), it came up negative, but they still gave me abx. Told me at the Urgent Treatment that their swab test was for Strep A ONLY & that I probably had another form of strep or a staph infection. We hit three gold bars while there: I got abx for throat, son got abx for dx'd ear infection (had just been treated for strep--I read somewhere ear infections are common after strep), & dh got abx for sinus infection. That was a good week when all of us were on abx! :)

  15. I've actually been thinking that all juvenile detention intakes should include strep tests (tho' negative tests might be common if exposure was the trigger, so blood tests would be needed...and I suppose Lyme, MP, and other infections should also be tested but strep at a minimum). And, could PANDAS actually be part of what is happening to our school system? Instead of Waiting for Superman, should we be waiting for the strep test results? Are "ineffective" teachers, strep carriers? Just a thought and after I get my son well (priorities!) then this may be worth bringing to action, eh? I know we're told this is "rare," but is it?...really?

  16. Yes, I consider the slide whistle a vocal tic. It was a sound that he used to do sometimes when he's playing (sound effect from some show), but it's become a tic now.


    And I think that his impulse control is so low at times that telling him NOT to do something puts it in his mind & does makes him do it...no matter what it is whether it's a compulsion or not. I'm a parent tho' & a big part of our job description is telling our kids not to do something. Maybe that's my thing...the more I know I shouldn't tell him NOT to do something, the more I do it, the more he does what I told him NOT to do, and so on and so on...vicious circle. Yes...day 3 of 5-day burst to try to reign things in a bit prior to IVIG. Still need to do the immunoglobulin tests...that's going to be a blast. I think at the dr's office he might have gotten a little freaked due to another mother saying her daughter was getting a flu shot even tho' I reassured him that he was NOT getting a shot. (I held my tongue & didn't go into a sermon with her. Heck, last year I still believed in them.)

  17. Does anybody else's kid out there do what I call the slide whistle? It's a loud, piercing scream that sounds simliar to a slide whistle or a whacky type of whistle. He incorporates it into some play, but lots of other times he just does it. And sometimes it's when I've asked him not do it because it is literally cutting into the middle of my brain. That's usually when he goes "hey Mom...<insert slide whistle sound>." On purpose? Or is telling him NOT to do something the trigger that makes him do it? Hard to tell...and the "hey Mom" preceding it really drove me bananas. AND the day he was watching a show & they were using a slide whistle and then he went rummaging around & found his slide whistle & was alternatively using the whistle & making his own noise & using a regular whistle...oh, that was fun. Fortunately, that was short-lived. (Reminds me...I should go find that thing & hide it!)


    Wowza. Bad day. Tantrum/rage at new doctor. DS's fine now. It will take me all day to recover. He was literally fine (PANDAS-y fine...hyper, active, bouncy, but talking up the other kid in the office & looking at fish, etc...) until the nurse called our name and then BAM! 10 minutes to get him to exam room with him full prone on the floor at times, trying to run from me, screaming, badmouthing, etc...and then the exam didn't go any better with him being disruptive the entire time. I guess the doctor is still interested in having us as patients. (Need to get my records sent there now! NO takesy-backsies.) I did have to leave without paying since ds was throwing such a fit. (He wanted to leave, but when time to go, of course, then he didn't want to leave.) I held it together until the elevator doors closed while I carried him out & then started sobbing. Then it was at least half an hour to get him into booster seat & buckled. We're on day 3 of steroid burst we're doing to try to get relief from symptoms...thought it was working yesterday when I was able to take him to a play at the children's theater. (REALLY! He was restless but made it thru the hour-long play.) Today, I'm not sure. IVIG next month. And of course that carries no guarantees. Whew.

  18. Our explanation of IVIG said that it shuts down the child's own immune system for a while (weeks-months--I'm assuming this is that critical phase when they can't get sick) since the body doesn't need to produce antibodies. Then when the bone marrow does need to make antibodies (presumably when the IVIG donor source is depleted or I guess when new invader is detected), when it "reboots," it no longer makes the "bad" antibodies that attack the brain.


    Would like to understand low dose, high does a bit more.


    Just a thought...and don't we all just have thousands of those...but could it be that if during that critical period an invader/illness shows up that's not been represented in the thousands of IVIG antibodies, then that's why the treatment is aborted because the body had to react. So, if there's a super-bug or new strain or whatever that's not been successfully fought by plasma donors, then that's why the IVIG "fails" or effects are short-lived. OR can the neuro-antibodies also be transmitted thru IVIG? So what if...going out on a limb here...someone who has OCD (undiagnosed/no treatment...had it since childhood but never affected their life in a big way...they're just a perfectionist or maybe pull out their hair) donates plasma & it turns out that OCD standalone also has neuro/bad-antibodies as its cause but for some reason doesn't bring ALL the behaviors. Or is it a bacteria vs. virus response since antibodies ignore viruses. Oh GEEZ. We have IVIG scheduled next month for ds. Way to scare myself. Happy Halloween.

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