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Posts posted by SarahJane

  1. Happy that you're recovering well. Hopefully, you'll get to rest easy for a while. Remember to rest & take care of yourself!!! If there's ever a time to take a Percoset, it's today. :)


    Saw my ENT on Fri & he extended my abx based on being around ds & PANDAS. Mentioned a tonsillectomy as a possibility but didn't jump at the chance to remove them. My EBV test was high but clinically it didn't seem like I had it (just showed I have had it before). Strep titers were rose a little bit over the week (84 to 110) but still low (but it still could be strep I guess). So, I'll be watching your progress just in case I get to join ya.


    Take care! Get well soon!

  2. Hello! I just got off the phone with what I thought would be a last ditch effort to get things approved. (I misunderstood a lot when it came to the insurance process. Grrr.) ANYWAY...when I called the insurance company to double check the process, they said it was approved & gave me the approval codes. I repeated it back a few times to be sure of the approvals (procedure & med) & YES INDEEDY. (Pssst...ins co. starts with an H. I'm too leery to put too much on the forum in case they call back & revoke approval. But YAHOO!)


    I woke up this morning with a start (after only about 3 hours of sleep) wondering about what are we doing. I'm taking my ds(6) 7+ hours away to have IVIG in a few days. It's a procedure that should/could/might/maybe work. No guarantee. And no timeframe to know when. We don't even know how/why it works (just theory). And we saw abx seemingly fail, so we didn't even go that route. Steroids worked some (he was sleeping at night and not raging and we could go out a little bit), but we only did the pred because things were SO BAD and we needed a bit of relief...hoped for a lot & got a little. We've basically been in the throes of exacerbation since Dec when his first dx'd case of strep made the 2nd part of kindergarten awful. Summer was better (not 100%...maybe 60% or 70%) then he got sick again & dx'd strep in mid-Sept after presenting with mental symptoms (no sore throat, no fever). Couldn't get local docs to see PANDAS, and we got in touch with Dr. K. Dx was on 10/13 & that seems so long ago, but it's only been a month. A month! (I do suspect early onset & that PANDAS has been with us for a while but not in the monster form it is in now.) I didn't sob as much after I got the dx, but it doesn't really make any of it any easier. The past few days have been okay (hope I'm not jinxing it because this upcoming trip will be much easier if things are more okay than if they're not). That's why I am wondering...what are we doing. I have to remind myself how bad it can be and how sad it all is...or my son will remind me when he flies off the handle at something insignificant. :( And that even tho' things seem a bit better, that it's better compared to terrible, which is a low bar of progress. I read the success stories and hope that I get to write one. I read the not-successful-yet stories and feel for those parents/kids and hope that healing comes soon. I'm weepy now as I write this. And I've always been proud of my ability to be objective and strong and calm in a storm. I'll admit it...PANDAS beat me. I'm so fragile now that it doesn't take much to get me started. And I'm so mad because this is a condition that makes sense. If you have RF & SC & all the other crappy things strep can do, then why not PANDAS? Why did it have to get so controversial? And why do we have to fight so hard for treatment? THESE ARE OUR CHILDREN! And I feel for the undx'd families out there...and I hope that they find answers soon & that the PANDAS controversy goes away for all of us. (Fingers crossed that the elusive white paper brings great things.) Those not going thru this just cannot understand that it affects everything in our lives. EVERYTHING!


    I would like to thank everyone here. Those who have shared the ups and downs of PANDAS. I wish I was the only one going thru this, but I recognize that it's the company of parents (and kids!) like you that have helped me get thru the days/nights & helped me understand so much more about PANDAS. And I am so very thankful for the doctors who do so much work for our kids. The ones that will call it PANDAS and give our families help. I'm not even sure how many blessings I will need to count next week on Thanksgiving, but please know that I will be thinking of everyone on this forum, the doctors, the researchers...and all our precious babies. THANK YOU SO MUCH!

  3. Thanks so much for posting this! We are taking ds(6) for IVIG this week. I've been dancing around the subject a little bit. He knows we're going to Chicago. Knows we're meeting a doctor on Wed. Knows he's getting medicine on Thurs & Fri & that the medicine will help him feel better. (Best way I can explain it.) Knows he's NOT getting a shot :), but it might seem like a shot...kinda like when we got some blood out to run tests & he was so brave then. This book could help with me explaining why & shows the kids getting IVIG. I learned some stuff too! :)


    THANKS again!

  4. Thanks for the article Vickie! :) Interesting. Not sure I'd agree with the idea that more vaccines are what we need tho'. ;)


    I love that science is going back to finding the root of mental illnesses. To me, all mental illness is suspect knowing what I know about strep now. Throw in Lyme Disease & other tick-borne illnesses & that makes mental illness even more suspect. I do believe there are "organic" versions, but infections, the interactions of the immune system, allergies/cytokines & such make so much more sense to me. Especially if you view the brain as a machine...why would a machine sabotage itself? Invaders that create reactions just makes sense to me. It seems far-fetched that we have evolved into beings incapable of overcoming a childhood memory when we used to have to survive harsh weather conditions, forage/hunt for food and outwit terrible predators. It seems far-fetched that we could be taken down by a tiny bacteria or virus cell too...but then we all know the awful truth of that reality.

  5. Here's my 2 cents...tho' some of it's the same as the others. Just call one of the experts. Get your kid the dx & then worry about finding a local doctor. That's what I had to do. Or do both consecutively. My ds(6) has what I suspect is early onset PANDAS, but bigtime exacerbation hit after he had strep last Dec. Behavior changed within a month. We thought it was school issues (and I'm still convinced the stress he experienced there was a BIG factor). I found PANDAS in May & took it to my dr. I too found it thru Google after trying to figure out what was going on with my kid. (I didn't find this site then OR I probably would've pushed harder than I did back in the spring.) When I talked to my dr, I was told it couldn't be PANDAS for various reasons, which I know now were bogus. I met with our doctor EIGHT times to discuss behavior and/or possible illness from March - May...and she still said no PANDAS. I focused on getting him out of kindergarten in as few pieces as possible (we had an official anxiety dx)...and over the summer he got a bit better. Then he got sick with a cough at the end of Aug...I took him into the dr's office mid-Sept for a strep test based on the mental illness symptoms I was seeing (ds is asymptomatic for strep...like many of our PANDAS kids--he had vocal tics, fears, OCD, rages & more--basically, it was a "classic" PANDAS presentation of strep). The swab was negative & the doctor told me I needed to take him to the psychiatrist & put him on meds for the anxiety. Then the culture grew & he DID have strep, so I expected the dr to at least consider PANDAS. Nope! We had drawn titers in order for me to get abx, so the titers were too low for PANDAS (or so I was told, but again...that's bogus as the culture actually trumps the titers to show a current infection). So I go to another dr to try to get a 2nd opinion...nope, not PANDAS...my kid had PDD-NOS according to her (but he doesn't! & she wasn't qualified to say that anyway!). And, I want to tell you that both of the doctors I saw locally said they have PANDAS kids in their practices & treat them. They knew what it was...CORRECTION...they thought they knew what it was. So, even if you're successful in finding a local dr who has PANDAS patients, don't automatically assume that your son will fall into their definition. When I talked to Dr. K, he said he was 95-100% sure because nothing else would have the symptoms we were seeing. Nothing else. We got our dx from Dr. K on 10/13 & go for IVIG in Chicago this week. I did find a local doctor by asking around for a referral...he'd never seen PANDAS but has read the book (Saving Sammy) that I gave him & other materials. I also believe, like many others on here, that PANDAS isn't all that rare but rarely diagnosed.


    So...don't waste your time. Call one of the experts and get their advice. It'll take at least a week to set up a call...maybe more with the holidays coming up, & they'll want medical records, so go ahead & get a copy on Monday. You've done a lot of thinking about past illnesses, so you already see the pattern. My son got all wild when he took abx...or so I thought...now I figure it was PANDAS but I didn't know it then. Looking thru his medical records let me realize that many times when he'd been sick, I could remember issues at preschool or home or whatever. He was also basically sick off & on from 2.5 (1st ear infection) until just before he turned 4.5 (when he got his tonsils out). Then just one sinusitis & seasonal allergies & a 1-day virus last fall...then his first dx of strep throat in Dec & our world got turned upside down. Another dx'd case of strep this past Sept & everything went even more topsy-turvy.


    Good luck! There are several other sites with articles you can take to your doctors & schools. This forum is a great place to find the answers to your question. Here, we know where you are coming from & what you're going thru & you have a virtual support group that's there behind you during the darkest hours. Hang in there!


    P.S. Not sure how the immune panel will turn out. Even if the numbers are normal, it doesn't rule out PANDAS. Likely your doctor is looking for another way to tell you no. (I have trust issues now...can you tell?) You may want to stay at the same practice for various reasons, but I'd advise you to go ahead & start looking for a new one. We stayed after previous issues when our son was young & just would only see certain doctors. BUT, now I wonder if we'd switched back then if we'd have had to go thru everything we went thru while we stayed there. So...I say now that if you sense issues just go ahead and switch. It's your son's health & your insurance & your co-pay...you do not need to feel compelled to stay where they don't want to listen to you. YOU know your son better than any doctor could in the 15 minutes they see them when they're sick or getting a well-child check. If you stay with this practice, just be prepared when they start using these "behavior" issues YOU keep bringing up to explain the development issues THEY'RE seeing. (Again, yes, I know I have trust issues, but they're there for good reason.)

  6. Here's something I found way back when I was pregnant (ds will be 7 in Feb '11). This passage lends itself perfectly to this discussion. It speaks to us the parents & to our babies and shows His infinite patience.



    When God wants something great done in the world,

    He doesn’t dispatch a legion of avenging angels,

    Neither does He call forth a whirlwind nor

    ignite volcanic fireworks:

    No commandeering of troops into battle nor discharging

    zealous crusaders to holy causes;

    He does not orchestrate the burst and boom of thunder nor

    display His fiery arrows’ majesty across the sky to

    bring His purpose to pass.


    When God wants something done in this world…

    He sends a baby – then He waits.



  7. I've been guilty of saying that I wish God didn't trust me so much. I do feel like there's something I'm supposed to do with all this information that's in my head about PANDAS. Not sure what yet tho'. And I do look forward to being able to hold my son up as a success story (hopefully soon!) as I educate others. But I do feel like I have to get to the other side of things before I can help others...to try to do it now while I'm in the middle of it is too much. I can educate those who need to know in my immediate vicinity right now & focus on finding the others in the near future. Part of PANDAS was feeling so alone/confused/etc... & then realizing that I wasn't the only one going thru all this when I found this forum...it was a big weight lifted. But it's still so sad that we have so much company & so many out there who feel alone because they haven't found us yet. I do feel that great good is going to come from all this suffering...and the breakthroughs will be likely be BIG & far-reaching. And if I'm supposed to be a part of it somehow, then so be it...and I hope I do my part well.


    But I'll send a HUG your way Phasmid & out to all the others on here too. Here's to all the PANDAS kids & PANDAS parents! Cheers!

  8. Hey Kayanne...you posted a goldmine. This PANDAS article was also in that issue...found it following the 2nd link you provided. It's a Journal of Child and Adolescent Pharmacology...Special Issue on Obsessive-Compulsive Disorder and Tourette's Disorder. Good stuff!



    Comparison of Clinical Characteristics of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Childhood

    Obsessive-Compulsive Disorder

    Gail A. Bernstein, M.D.,1 Andrea M. Victor, Ph.D.,2 Allison J. Pipal, M.A.,1 and Kyle A. Williams, M.D.3


    This article gives the PANDAS characteristics as opposed to non-PANDAS OCD to help differentiate. Says more study is needed, but maybe docs will ask about strep or illness or other symptomatic responses to help identify PANDAS kids vs. just treating OCD. There's a good chart with characteristics (use it to check off the symptoms of your child...mine had almost all of them).


    I don't recognize these authors, but maybe some of y'all do. And maybe this is old stuff, but it's new to me. Are these the articles that needed to be published before the white paper comes out? Wasn't there something about that from Dr. L a while back? Hope so!

  9. So happy for you and your daughter...your whole family. My ds(6) goes for IVIG on the 18th & 19th. Good to hear that there are stories where only 1 IVIG is needed. I have PTSD, but we're still in the current vs. post phase of it all. Have PTSD about kindergarten last year when we were undx'd. And there's the feeling that you never can do quite enough to make things better (if you can even imagine that things are going to ever get better). But I will take comfort from your story and know that there are "happy" endings. And we will do the IVIG, which is what we can do right now & go from there. I hope to post a success story on this forum someday. And I hope that someday this forum won't exist because PANDAS won't exist & nobody will have to go thru what all of us are going thru. Best wishes to you & yours & THANK YOU!

  10. My ds(6) had his tonsils out at almost 4.5 & had no dx'd strep up to that point. When I took him to the ENT, his tonsils were really big & we went thru at least 2 rounds of abx to try to shrink them with no luck. The tonsils were very large & infected-looking (record called them "hypertrophic" which basically means they were swollen so much they were touching & infected). His adenoids were removed when he was almost 3. He'd had sleep issues at first, which led to the adenoidectomy & then was sick a lot (not with strep or pharyngitis...mostly sinusitis or allergies). Had 1st strep case in Dec '09...14 months after tonsillectomy. BUT he wasn't sick (except seasonal allergies) during those 14 months. 2nd strep dx'd 9/16 but he's asymptomatic & the PANDAS behaviors showed up a few weeks before that & still showing behaviors. We got dx'd the middle of last monthg & IVIG week after next.


    I'm actually fighting a tonsil/throat thing myself. Treated it with abx back at the beginning of Oct & since there was no pain & neg swab I didn't give much more thought to it...have been preoccupied with ds's exacerbation. Went back the other day because I noticed my throat was still inflamed (still no pain) & am on abx & a decongestant with a neg swab for strep (again!) but a culture & titers still being processed. Should know tomorrow or Mon. If I do have strep & I am to blame for the extended exacerbation (as if I need more guilt right now!!!), then I'm going to go to ENT for a T&A consult. Am hoping for neg results obviously, BUT I've got something going on in there. The doctor said she would maybe send me to an infectious diseases doctor which both scared & intrigued me...it's the PANDAS Mom in me. A chance to find out anything/everything that's wrong with me & try to clear it?...I am so there!

  11. I agree that you are going to do something GREAT in your life. And in some ways, you're already doing it. You make terrific contributions to the forum here for sure. To be so self-aware at your age is rare & to be able to be so motivated to get well when it's likely that all you wanna do is lie in bed sometimes is awesome. You are an amazing kid!


    I don't have any 504 advice for you other than to think about what specific issues you have at school & what could help make them better. It sounds like you have some good teachers on your side & that you'll be involved in the creation of the plan. Maybe you could somehow get and extended number of medical absences in there so that's not an issue. ;) I'm sure you'll get some good advice from others on here & even using Google once you have your issues determined may help you define accomodations.



  12. http://www.washingtonpost.com/wp-dyn/content/article/2006/03/29/AR2006032902182.html

    There are likely other articles out there, but I ran across this good one the other day that deals with brain development & intelligence. And, if you Google the name of the researcher at the bottom, Sowell @ UCLA, you can get to some other cool stuff on her research site & the main site. I estimate that you can kill at least an hour or more going down the Internet rabbit hole with all this. Have fun Alice. :)



    This is neat graphic about early brain development too.


    It is important to note that nurture vs. nature is also at play. Being supported & loved & in a good atmosphere does wonders for a child, and clearly all of us here work to do that for our kids. That's how we all found PANDAS for the most part & why we wrestle with our decisions so much. I think we're all aware that there are lots of kids with this condition that are out there undx'd/misdx'd for various reasons...it does take diligence, persistence, & a certain gumption to pursue all this. We are pioneers whether we like it or not.

  13. Talked to Amend today. Mostly it was a whirlwind of me telling him how I had to go about getting the dx & treatment. He said that certainly the medical side has to be involved and agreed that the dx made sense with my ds. (Apparently he worked with another patient a few years after their dx...wasn't involved in dx'ing. I told him to give them my name--they're not here in this city tho'.) I did tell him that me & a few others would love to see PANDAS in the next edition of "Misdiagnosis" since the symptoms read like the Table of Contents of that book, which he said might be revised for the DSM-V. A lot could happen with PANDAS before the next DSM is released in 2013 (let's hope so anyway!), so maybe it WILL be in there. :) I gave him my theory of it being part of the asynchronous development seen in gifted kids, and that it could be in the brain development because it was so weird that so many gifted kids are affected. I know my theories don't hold much scientific weight. BUT he is a respected doctor in the field, so maybe it will help the cause.

  14. And add to all this, not all PANDAS docs do all the testing. (I think maybe some are participating in research studies & do more extensive work-ups.) We've only been requested to run the Immunoglobulin panel (& we were prepared for the worst but ds didn't make any fuss at all when they took 3 vials). We weren't advised to do Cunningham, & I'm sure PANDAS is sufficiently confirmed clinically to not run it. BUT, I'm still wondering about rising titers (ours were low during acute infection), but I might've missed the window to see any trends. I wonder about MP. I want to see a CBC with diff (becuz we did a few in the past, when he was 1 & when he was 4, & he had H Lymphocytes & L Neutrophils on all his tests--would like to see current). And there are other things I'm curious about, but I'm not a doctor. BUT I know once we do IVIG in 2 weeks (wow!) that I won't be able to run tests for a while. So...I'm likley going to try to talk our brand new doctor into running some things to have on file. That way we'll know.


    But saying all that, then I also think that IVIG & the subsequent abx will work to rid ds of any infections that are likely there. So maybe it doesn't matter what they are. There's an Augmentin/penicillin allergy anyway, so we'll be treating with macrolides or other (OR should I run a test to be sure of that allergy since it limits treatment options?) I look forward to the first frost and a calming of seasonal allergies that may be working against us right now. And maybe after I do IVIG, I will feel comfortable using an allergy med (OTC or natural agent)...I ditched them except for occasional use due to the side effects, which I wonder now if the behaviors were maybe from PANDAS.


    Good luck eljomom in making your decisions. I know you don't want to force a PANDAS dx, but something is leading you to look at it. At the same time, you wouldn't want to ignore PANDAS either if it IS there. And maybe the bloodwork will help confirm one way or another for you. We all have these same questions & can only do what we think is best for our kids.


    (@kiera: Did you tell your PCP that it's not like you can look in the phone book for a PANDAS specialist, and that if he helps you that he has the chance to be one? Will Dr. L consult with him to get your meds? Also, I thought they were on abx for months post-IVIG.)

  15. In addition to being 2ce Exceptional (gifted with a learnind disorder), it's important to note that there are different ways to be gifted. You tend to think of the kid who is the brainiac, but definitions can extend past global intelligence. For example, here's the definition in my state: “‘Gifted and talented student’ means a pupil identified as possessing demonstrated or potential ability to perform at an exceptionally high level in general intellectual aptitude, specific academic aptitude, creative or divergent thinking, psychosocial or leadership skills, or in the visual or performing arts.” In some cases, psychomotor may also be considered...think of the star athletes. Whether your child is identified or not, they may excel in an certain area that may not be picked up on in general gifted programs. Great hand/eye coordination for video games likely counts! Maybe they're artistic or have a flair for showmanship or drama. My son is not really a little professor...he does well academically, but he'll blow you away with his creative/divergent thinking. (For example: he was a thunderstorm for Halloween--and was the only one on our block.) He makes many connections that you'd think a child wouldn't be able to make. It makes sense to me that "giftedness" or something else (not sure what) works as a defense mechanism for our kids. I told my husband that it could even be a function of evolution. My son likely wouldn't have been a hunter (not sure he could take down a wooly mammoth). BUT he could act out the hunt by the bonfire as entertainment or help devise a system for ensuring clean water. Like maybe he needs to stay in the cave so he can help find a new cave when ones needed. ;) And who knows, maybe he could get the mammoth too but it would involve a highly devised attack vs. spear to the chest in a face-to-truck showdown. After we get our kids thru all this, who knows what they'll do in the future. Now mine is destined to be an archeologist studying wooly mammoths or a speleologist (scientific studier of caves--was going to say spelunker but Google tells me it means amateur & apparently cavers are in the middle). ;)


    I do think there's something involved with brain development here. Whether it's happening to gifted kids OR there's another common feature...I hope someone is looking for the connections. I think once PANDAS (or whatever they end up calling it) is unlocked, it's going to affect so many other things. It's related to psychology/psychiatry (obviously), so many areas of biology--neuro/immune/endocrine/whole body really, education system (as it shows how behavior conformity is valued so highly), doctor/patient relationship (listen to parents!), pharmacology (meds, vaccine schedule), parenting books (does any of that stuff EVER work for you? Me neither!)...really so much can be affected. Maybe it will all be worth the wait! :D But I wish they'd hurry up...I get impatient waiting for microwave popcorn.



    Ok, I will not put my big girl panties back on and get on with life; wherever that may lead.



    I like your Freudian* slip of the word "not" that was supposed to be "now", right? ;)


    I agree with everything you say! First do no harm...don't they believe that anymore? You moan, whine and cry as much as you want to for as long as you like!!!




    * Note: Reference to Freud does not in anyway reflect any agreement by the poster with his psychological methods, which have most assuredly helped limit the chances of us getting PHYSICAL ILLNESS diagnoses for our mentally ill children. He may have made some contirbutions to the field, but BOY did he set some of us back centuries.

  17. Yes Amend is the expert I'm talking about here...did our ds(6)'s IQ testing 2 years ago & saw us this past spring & wrote a report. So he's seen at least 2 PANDAS, but one stayed undx'd (my ds) until recently. So, my planned communication might not be anything new to him, but maybe will remind him to ask about strep. <_< We'd actually switched to another psychologist who was a more available for our immediate crisis back in the spring since Amend travels extensively. I found our new doc just after I found PANDAS in May & he wasn't that familiar but knew it was tricky. But the symptoms subsided over the summer (maybe natural course of symptoms--4 or 5 month exacerbation with sawtooth) until ds got sick again. Then the mental symptoms are what alerted me to the strep dx'd in Sept (of course, still a struggle for the dx tho').


    I got the book "Misdiagnosed" 2 years ago & was thrilled that one of the authors (Amend) had a practice in my city & made an appt. I think it's interesting that the symptoms of PANDAS reads like the table of contents from this book (Anxiety, ADHD, OCD, ODD, Bipolar, Depression, Eneuresis, Sleep Disorders, Writing Issues, Mathematics Issues, Sensory Issues, etc...). I actually called his office yesterday to get our records because I wanted to see the raw data from the spring questionnaires if I can get it. I know ODD & some rigidity in thinking (likely OCD) were issues that showed up...just wondering what else. We did think a lot of it was giftedness back then & reacting to his environment...in retrospect, much of it was the PANDAS too.


    I don't think giftedness is particularly a trait of PANDAS either (didn't mean it that way). Just find it interesting that there seems to be so many cases where they coincide & wonder if it means anything (and it may not...bacteria are everywhere & we're all equally at risk to it). And I don't think PANDAS is a rare disorder either...just likely underdiagnosed. Maybe such an alphabet soup of symptoms as a presentation like many of us have is rare. But if you treat your child for strep and then a month later (or even as far as 6-9 months later per some of the experts) they start wetting the bed, have attention issues at school, and show some sensory issues then you may never connect it to strep/illness. And if they're 11 years old and they have intermittent issues for a year or two until puberty, then you are more likely to say it was a phase rather than search out PANDAS, and you might have gone on meds in the meantime. It's these missed cases that likely do help support the idea that there aren't long-term effects. It's the extreme cases that I think are so baffling as to why they aren't caught...a child with so many mental issues would seem to raise a red flag for PANDAS vs. anything else. (At least once you know it exists.)

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