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Posts posted by SarahJane

  1. We should all get t-shirts that say "Unless you can disprove PANDAS, shut up!" and wear those to all our appts. How's this one "Don't treat me like I'm a Crazy Mom unless you want to see me get CRAZY!" And "Just because you went to medical school does not allow you to be a butthead." And one more "I may just be a Google MD, but my PANDAS research is more up-to-date than yours is!" Ok...one more "PANDAS is only controversial because doctors keep saying it is!"

  2. I'm NOT making light of your child's FB addition at all. But what would constitute an addition to FB or this forum? (Or...Angry Birds...hypthetically, of course.) :D How many hours or how many checks per day? I probably should get parental controls on my computer...but my parents don't know how to use the computer...and I'm 40. ;) Plus, you'll never get my iPhone away from me now that I finally got a new one. My old one was holding a charge for maybe 5 minutes for the past 3 months. Got a new one Sat & am already on level 12 of Angry Birds...hypothetically. B) It is nice to have a mobile phone again tho' vs. using it while standing at the kitchen counter while it's charging.

  3. Peg, I'm so sorry you're going thru this...BUT I'm glad that Allie got good treatment at the hospital!!! I'm glad that you got someone that can see Allie and not the other A too!!! Good luck!


    I'm actually taking my ds(7) who is on 250mg zithromax daily for strep titers today & circulating immune complexes. Am going to get the ped to throw in an MP test too, just in case. Could be that the zith-resistant strain is circulating this season. :( We are 4 months post-IVIg...he was doing good & has deteriorated over the past 1.5 weeks. Of course it was slow enough for me not to put it together until BAM! it was obvious. Dang PANDAS!

  4. Wow Malke...you still have friends. :) It really is something that you cannot explain verbally to those not experiencing it. There's something that happens inside to us parents that really is indescribable. It's hard to explain the simultaneous feelings of hope, guilt, doubt, despair, anger, love, loss, <fill-in-the-blank>.


    We are in a rut of wondering what "normal" would even look like. I get SO MAD that my son went untreated for so long. And that when I FINALLY FOUND PANDAS ON MY OWN (no thanks to the doctors), that it was brushed aside as not being a possibility (really no thanks to the doctors!). And even with the diagnosis and treatment, the emotions are all still there. I don't know that I will ever get over it. Even once we heal our son(7), which WE WILL HEAL HIM. I'm changed.

  5. These capsules are junior size. Not those HUGE things. He can do it. There's a little bit of Omega 6 & 9 in it too...but it's mostly EPA with some DHA. Strawberry flavored too. If you have a Whole Foods, you could check it out there to see if you think he could do it. Jesse's doing zith in pill form too...they're maybe twice the size of the zith. And like I said, we just do one pill, which is just under Dr. K's recommended dose. When I did 2, that's when he flipped back in Jan. I tried 2 again on Fri, and we did not have a good weekend. Skipped it altogether yesterday & we did not have a good night. I'm not sure it's even related, but my PANDAS paranoia is high whenever I change something & see a behavior change. I think his issues have been building for a few weeks tho'...just all spilled out last night. I hope that was all. I need to wake him up & see how he is today. I know things weren't this bad a few weeks ago because I'd planned some outings for this week--now I need to cancel all of those. Total bummer! I had a 3-day mini out-of-town trip planned & really to go since 3/17 is a bad PANDAS anniversary (1st time I was called to school & my son was out of it like I'd never seen him before). Instead, I get to relive all that "fun" in real life. BLAH! I'm very affected by these anniversaries (that's part of MY OCD)...last spring was so bad. I was really hoping this spring would be good. And if we do head for another IVIg, are we going to be confined to home again for the spring/summer months? GRRRRRRR. I'm not sure Dr. K would do one so soon tho'. I need to get that email written & sent. I'm procrastinating.

  6. When my son was little (3ish--he's 7 now), he would do the hugging. We were undx'd then. Would do it at Gymboree with other kids mostly tho'...you'd think that'd be more normal than it is. Kids hugging other kids. But we would always be apologizing for it. Whew.


    Jesse wants to be the center of attention now too...will bug people to look at him & stuff. We homeschool, so he probably does need more social opportunities (but we're also PANDAS, so that ain't gonna be happenin' anytime soon.) And I'm that weird lady that will strike up a conversation with you in the middle of Target because I need more social opportunities since I'm SAHM, homeschooler, PANDAS Mom. ;) I don't hug people tho'...too many germs!

  7. We're using the capsules of fish oil (MorEPA). It says for 10 & up (I think becuz it's a pill vs. the chewable version), but I just give one vs. two as recommended. When I give 2 he wigs out for some reason (or at least that's what it seems like...may not be related). I skipped it yest & he wigged out last night. So...I'm not sure if the wigging out is related to the fish oil or not. I may have to check out those vitamins...right now I have him on a multi w/ extra C but it's not Ester-C. And I spoke too soon about the hair pulling...caught him doing it again last night. He twists until he has a knot & then can't get the knot out so he just pulls it out. I'm emailing Dr. K today. Last night, we had maybe our worst night since Nov or early Dec (we're right at 16/17 weeks...IVIg was 11/18-19. I got some ibuprofen in him & he calmed down after that but was up til probably 5am. I think we're going to be heading for a 2nd IVIg at some point. Could be because he was undx'd for probably 4 years since we suspect early onset now...as soon as we got the official dx we did IVIg. We'll see what Dr. K says.


    @tampicc...I know the symptoms you're describing--we saw/see those at times.


    @LauraMary...I figured that was you on FB this morning. :) I usu go by Sarah but just like Sarah Jane. Glad your sister spells her name correctly. (You too S&S!) ;)

  8. The worst symptoms are the ones that they've never have that show up & leave you scratching your head & then they're gone. Jesse's been going thru a phase of pulling his hair out. Has a little spot on the crown of his head. Made it in just a few days...now the "habit" seems to have passed. And actually writing that about the fish oil got me to thinking, & I halted ours again. His big flip back in Jan happened when I changed brands, then I started giving it to him a few weeks later with no issues. I stopped the fish oil today as an experiment. We'll see. DS(7) actually reminded us that he didnt' have it today...luckily he takes his medicine okay. We'd been to a museum on Wed, so it could be he was exposed (or my dh brought something home from work). After 2 weeks, my son hit a stride & did really well...then a kinda big flip around 6.5 weeks that passed within a week. Now, even at 16 weeks or so, we're still on the roller coaster. Just make sure your arms & legs are inside the car at all times. ;)


    Good luck. If you ever wanna compare notes, just sent me a message. :)

  9. I'm not sure if the symptoms are a sign of another infection, but you will not be able to run any tests until like 12-weeks post-IVIg due to the extra antibodies. My ds(7) had IVIg back in Nov w/ Dr. K & would have occasional fevers for a few weeks afterward. He also slept a lot. He will complain of light sensitivity occasionally even now but its never been to a high degree (& was not a major symptom). We are coming up on 16-weeks post-IVIg, & there's still healing happening. Some days are better than others. Have you been doing the fish oil Dr. K recommends. I know it took me a little while to find one my son could take. If you've just started that, perhaps there's been a reduction in brain inflammation inducing the headache...or just the IVIg & abx doing their stuff. Don't hesitate to email Dr. K if you feel like you need to do that. I know about the not going out much post-IVIg...can get stir-crazy staying inside all the time. :) I find even now that when we do go out for extended trips even now, we'll see behaviors that night or the next day(s). Good luck with the healing of your son.

  10. We had the mini-exacerbations that would come from nowhere & then go away...until we had the BIG ONE that didn't go away. By the time we figured out it wasn't going away, I wouldn't say it happened suddenly. Some symptoms did, which since ds was being bullied a bit at school, I attributed to that...and looked for other things I KNEW to look for (diabetes, anemia, eye issues, sensory). Maybe what we need to do is focus more on awareness for parents (like the Got Strep campaign), so that when THEY notice the differences, the doctors can't ignore it. I'm thinking that even if you had a sudden onset, that's really going to fly up red flags for a mental illness vs. anything physical. Maybe the SUDDEN ONSET is to keep everyone from running into the dr when all this PANDAS stuff finally hits mainstream. Or to keep parents from being scared of strep (like we are!). They do mention episodic course in places, but the thing is, by the time you're realizing that they run in episodes (or if you're like us & go 1.5 years WITHOUT an episode after tonsillectomy), you already needed to have treated your child. There was something it seems that said it took 2 exacerbations to dx it...but in the study they just want one. I want to try to find info about when the autism awareness programs started and if that's when the autism rates started rising. The trouble would be, how do you get the docs to differentiate between ASD & PANDAS if it's a toddler? They look so similar when in exacerbation, but treatments are different. AND how much would it hurt to run a course of abx on a suspected ASD case to look for improvements. Okay...I'm starting to ramble...brain is scrambled a bit.


    And where is that white paper???? I forgot all about it.

  11. I should add here (since I'm the one that brought it up), that my son is not autistic. The symptoms never matched up to the dx, but the drs did look at it as a possible explanation for his behaviors. We never thought that it made sense...especially when symptoms would remit. Waxing & waning of autism? I think not. And the drs didn't think it made sense or otherwise our son would've gotten the dx...he was basically evaluated 3 times (as late as last spring...that time it was via survey, BUT the symptoms were all over the place & luckily the dr had previous contact with my son). My son has also never been on pychotropic meds either, tho' the ped was pushing us to get him on an SSRI for anxiety, which was the dx he ended up with last spring because it was such a strange manifestation. I would've resisted SSRIs for a 7-yr-old despite anxiety. And the more I read about PANDAS now, the more I see the signs in the past that he very likely had early onset PANDAS.


    So...that is my fear. That in order to EXPLAIN away PANDAS versus finding the cause & a cure, it will be lumped into a category, which for various reasons autism comes to mind as the most "logical" fit. IF that happens, and I really hope it doesn't, then parents may be given a "treatment" to try, but the ASD bias will also be there. So if that treatment doesn't work, then there's nothing that can be done about it since it's ASD. The fact that the prevalence of that condition continues to creep up in our nation's children is frightening to me. And that while much is likely being done behind the scenes, we don't see a lot other than certain protocols to treat symptoms. And if PANDAS ends up on the spectrum, I'm afraid it will fall off the map. Look at how vocal the ASD community is, and the evidence they point to for potential causes is consistently explained away. Meanwhile, more and more kids will end up with PANDAS or whatever it ends up being called because it's certainly easier to categorize a condition than it is to cure it. Treat it all you want, but eradication if possible, should be the goal. And Lord do not mention vaccinating for it! (And if an autism case IS cured, then it's likely said that it wasn't autism in the first place...and you know what I say to that? EXACTLY!)


    I do keep peglem's comment from a while back that autism itself is a collection of symptoms...I'm paraphrasing. I think most people...WAIT...I KNOW most people don't look at it that way. I thank her for that wisdom. And I do believe there is such a thing as autism that is mysterious and unexplained. But now I also believe that not all of those with an autism diagnosis have autism...sort of like how now I don't think individuals with OCD & other alphabet soup dx's necessarily have a mental illness.

  12. I'm confident my ds(7) has PANDAS. There really is nothing else that can explain what we see now...and the episodes we saw when he was a toddler. Of course, saying that I'm confident he has PANDAS does NOT make me confident in anything I'm doing. I hope the IVIG and abx work to heal him, but I worry about his future.


    I'm paranoid that they're going to somehow put PANDAS...a physical illness...onto the Spectrum just so drs can say "see...we told you your kid was ASD" and continue prescribing meds for mental symptoms with a physical cause. I read autoimmune disease books, articles, web sites. I read Lyme books, articles, web sites. I read Mycoplasma books, articles, web sites. I read vaccine books, articles, web sites (higly recommend "The Virus and the Vaccine" if you can read & scream at the same time). I read immune system books, articles, web sites. I read organic food books, articles, web sites. I read A LOT! I have a little bit of info about a lot of things and am trying to piece together what I think makes sense (devoid of any medical background & only 1 year of college biology ;) ). I'm totally lost in this new world where up is down & down is up.

  13. You Go You Crazy PANDAS Mom You! :) Seems like you might have enough for a local support group in that audience, eh? That's terrific that you were there to at least put PANDAS on those moms' radars tho'. And that is heartening that the dr didn't dismiss it. A little PANDAS exposure can go a long way for education, & planting the seed of the condition for the others in light of the comorbidity rate with ASD was good too. Thanks for sharing! Hope all is going well.

  14. Is there anything official from NIMH about avoiding the flu shots & would that be sufficient to placate the dr? This isn't an "official" study or anything, but Dr. K's web site says the following: Wax-and-wane pattern of symptoms. Symptoms exacerbation is frequently associated with or may occur following an infectious event and/or live virus vaccine administration." This under #5 on the clinical cases page under the "Updated PANDAS Signs and Symptoms" (http://www.webpediatrics.com/pandasclinicalcases.html). It goes on to say that the 1st exacerbation is usually strep but later ones don't have to be. It's more anecdotal than scientific, but it is on the web site & can be shown in printed form if that helps any. Good luck!



    Regarding Chicken Pox:

    I read something (Mercola) about how shingles are more common among older people because of the chicken pox vax too. Apparently, the exposure to chicken pox would keep your natural immunity up (think parents/grandparents being around kids/grandkids with chicken pox). With the vaccine, nobody gets chicken pox anymore. And the same co that makes the chicken pox vaccine came out with the shingles vaccine as an answer...TA DA! There's also concern about the immunity passed from breastfeeding to newborns & how the chicken pox vaccine may affect that. http://articles.mercola.com/sites/articles/archive/2010/11/02/chicken-pox-vaccine-creates-shingles-epidemic.aspx


    I broke out in shingles the day after I had my son. NOT fun at all. The will hit one side of your body the way EAMom explained. I had them on my ummmm...left "chest" & on my left shoulder blade. Maybe had 6 places in all...biggest the size of a quarter. That pain will stop you in your tracks & take your breath away. I had a very strict schedule for my pain meds & would get antsy 30 minutes before a dose. Not a fun time, except that I had a brand new baby boy. The stress of giving him chicken pox was great tho'. He didn't get them. (I do wonder if that's related to all this PANDAS stuff. But really, I wonder if everything is related. :blink: )


    And for a chuckle...my ds(7) gave himself chicken pox the other day with a red marker (got the idea from a Calvin & Hobbes book). Face, neck, back of neck, arms, hands, chest, belly, legs, feet...covered with red spots from a "washable" marker. This was on Wednesday...it's now Friday & 2 baths & a shower later, many of them are still there. I posted a pic on Facebook for my friends to see there. :)

  15. If it helps, I don't think you sound crazy. You have some very real concerns & many things on this list are PANDAS symptoms (separation anxiety, OCD, tics, sensory, dilated pupils,attention issues...). Hopefully, the dr you are seeing tomorrow will be well-versed enough to recognize & help if it is PANDAS. As far as tests: reg strep test (swab AND culture). You'll want to check the strep titers (ASO, Anti dNASE B)...this can catch if there has been a strep infection if swab/culture negative. The cough could have been mycoplasma pneumonia/walking pneumonia, so that'd be worth checking if you can get it. Others may also say Lyme since that can be a neuropsychiatric culprit, so maybe consider that if you think it's a possibility. Not sure about the Cunningham test. We didn't do it for our dx back in Oct (did IVIg in Nov).


    I know what you mean about wondering what in the world is going on & then thinking you are crazy when it goes away. When our ds(7) was a toddler, we'd go thru phases of panic followed by thinking we'd imagined the stuff. The fact that the symptoms would clear kept me baffled and from letting our ped push any other dx's. Got to where we just thought they were growth spurts...until he had one that didn't go away last spring after a dx'd strep infection, which was his first major exacerbation after 1.5 years of hardly anything. The other things were likely less intense exacerbations, and when I went thru the medical records, I saw where they typically coincided with an illness (hindsight is 20/20). The 2nd strep infection in the fall caused a doozy of an exacerbation that led to us getting dx'd & IVIg. He's still healing but much better than he was


    The good thing is that you found PANDAS now. You are very likely on the right track. Good luck!

  16. My ds(7) is Dr K's patient. We did IVIg 3 months ago. We're still recovering but we ARE recovering. I would recommend him. I agree with tampicc's info. Took a week to get our call (& that's because I had to send records). Then when we said yes to IVIg (we were already seeing abx not work), we could have had it in 2 weeks...we chose 4 weeks to give more time for insurance. It was covered for us. We did steroids but only to try to get some relief from symptoms...didn't need them for dx since dr was 95-100% sure it was PANDAS. PM me if you want to know more. :)

  17. I can't give advice on local drs, but I will say the emotional labilty was the big thing with our son. Just out of the blue behavior that was off the charts. Rages, tantrums, overreactions, ODD, etc.... He did have OCD too, but it wasn't as noticeable as the emotional lability, tho' I will say that it is likely that the rages/tantrums/etc... were set off because his OCD issues were triggered somehow. I still don't have all those figured out & he keeps surprising me by telling them to me...NOW...a year after the fact. He does things in evens. He has a bunch of favorite numbers & they say "I love you" when he sees them (he imagines it...doesn't hear it). He gets surprised when he hears the word "forever." He does this exaggerated shake of his body if he hears a loud noise. Makes lists. And I'm sure there are more. In addition, he developed insomnia, sensory issues, ADHD, perfectionism, anxiety (actually ended up with an anxiety dx before PANDAS...& that was because nothing really fit & it was such a strange manifestation). He'd had strep before the behavior stuff started. Then the next exacerbation/strep gave us some mental illness symptoms/vocal tics, but when the rages came, THAT'S when I went in for a strep test...positive culture.


    So...anyway...yes, it was the emotional lability/behavior stuff that sent me into the pediatrician's office last year over & over. That & the fact that he was getting in so much trouble when he was in public school last year (homeschool now). Sent us to the eye dr, psychologist & OT too. It was a long spring last year! We finally got a dx from Dr. K in Oct (no luck with local drs) & did IVIg. Just finished our 3 month period post-IVIg & he's doing better. Not 100% but better. No rages since before IVIg in Nov.


    Good luck!


    P.S. Saving Sammy Facebook page posts a list of docs too. Might try there if you're on FB. Someone else here might have dr advice too.

  18. Even if he doesn't have strep, he could begin to react to the exposure. To be safe, why not go get it checked since so many of our kids are asymptomatic. And be sure to get the culture. The sooner you know, the sooner you can get him on abx if it's strep (if he's not on them already). Fear of strep...WE totally get it & have it. :blink:

  19. The mom from Oprah has a Facebook page (Saving Zach) and is launching a web site tomorrow: savingzach.org. (Sounds familiar, eh?) I've already posted comments on Oprah's FB page, Oprah's site, friended the mom on her FB page & sent an email to an address she had listed in a comment. Not sure what else I can do without her getting a court order to tell me to stop talking about PANDAS. ;) I know that so many of us have mentioned PANDAS in our comments to the show & to the mom. I've also been mentioning Lyme & MP as possible infections. I hope they at least consider infections, since it seems that all the focus was on mental issues (surprise...not). It was a very hard show to watch. As someone else said on here, I hope it has a happy ending too. I seriously don't think the producers knew what they had on their hands, which is weird because of the research that goes into the shows. And usually they have medical experts out the wazoo...none on this show. I hope they do some kind of follow up. You have to think that it doesn't have to be on Oprah's show...she has OWN now too.

  20. I find that my son(7) has some sensory issues when he's in exacerbation & during healing phase. Then he's fine. BUT to me, if it's his brain inflammation causing the issues, then OT is not going to help. We've done the eval twice (when he was 4 & when he was 6) & both times I believe the issues arose due to PANDAS--I know it did the 2nd time. We've done OT before & he enjoys it & I don't think it hurt anything (unless he got frustrated and then it put him in a "mood"). I do think that sensory issues could be comorbid with PANDAS as a standalone dx that would remain after PANDAS symptoms are "cleared." And if there are any lingering effects, then it could help. So if that's the case, the OT is a good option. Plus, I'm not sure how many of the techniques I use naturally that make things easier since I've done lots of reading & my ds did OT...my exposure to it has very likely helped with my son. And I think OTs are a GREAT first responder for PANDAS! I plan to contact our past OTs to make sure they're aware of PANDAS. (I know the OT that did our last eval probably thought I was an awful parent because he was an emotional mess...likely thought I'd ignored the signs since we'd had the inital eval when he was young. She didn't particularly seem to believe me when I kept saying that the behaviors had just started & he wasn't usually like that. Whew!)

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