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Posts posted by SarahJane

  1. My ds was at 59 on IgG subclass 3. Hmmmm. That article is over my head or maybe I need more coffee to understand it. I'm more up on bizarre effects of infections than I am the immune system components. lol @LauraMary, myco p can cause cardiac issues & a whole host of other things. Check out www.immed.org for the best myco info. Dr. Garth Nicholson is THE MAN for it. If your husband has ever had "bronchitis" or even if he hasn't, a myco p test could be good...especially since your ds tested positive. Was he ever in the military or a paramilitary organization? That could be relevant with mycoplasmas. Here's another site with myco info: http://www.shasta.com/cybermom/asimple.htm


    I finally was able to talk to a real, live person at my husband's dr's office. That nurse was supposed to have someone else call me back. Also have a message into PANDAS doc about hubby's myco p IgG to see what he thinks we should do for ds. We still have another week of Biaxin but were supposed to add the steroid burst this week if we didn't see improvements on Biaxin last week. (Some slight improvements but nothing major.) On another post, I got warnings against doing steroids for myco p, but can't find articles that indicate an issue. (In fact, I found the opposite...that steroids with abx was supposed to be good for myco p.) So I'm confused. We didn't see a big improvement on steroid burst prior to IVIg...we did one without abx when we were trying to get symptomatic relief. We did get about a week of less-than symptoms but didn't realize that's all we were going to get until the rages came back. It's hard to feel like you are spinning your wheels. I wanna do what's best for all of us in the family (including the fact that I should have my myco p levels tested), but I'm unsure what the best course of action is for us. Whew. Will it be better or worse when all the protocols are finally figured out for PANDAS. At least now, it seems like the treatment options are unlimited in a way. If they are defined, will that put us in more of a bind if something doesn't work. Hmmmm.

  2. I read that the daughter wanted to go to middle school, & the vaccine injury happened when they were catching up on her shots (multiples given in one day). The mom sought help afterwards & ended up with the Risperdal rx. It caused violence, so she was going the holistic route to heal her daughter instead. CPS showed up with the police because she wasn't giving the meds...that's when the stuff went down. I've been following it via Age of Autism. It's a terrible situation all around. Can't condone the gun, of courseb but also my heart goes out to the family. They were supposed to give the girl to family as part of her surrender, but they didn't & nobody has seen her yet...last I'd read anyway. Need to catch up on Sat's rally and such.

  3. I'm not at home to look at my son's tests, but LauraMary, I looked at them after our other communications. His levels were all in normal range but igg 3 & maybe 4 were low...still normal tho'. Just wondering what T said was low. You can PM or email me if you don't want to post here. My hubby didn't reach the dr's office on Fri, so we'll have to call Mon. Argh! Your hubby's doc can run them but might press back. Has he had "bronchitis" because sometimes it gets listed that way. Does he have asthma? That's what my hubby was dx'd with...mild asthma (which I think is really his current/chronic myco p infection). I'm starting to think that myco p is even nastier than strep...and I hate strep.

  4. LOL! Herd. HERX totally makes sense! SEE what lack of sleep is doing to me! I even Googled it & found something about myco infections in pigs. That was confusing. ;)


    I think I will try melatonin. Maybe I had seen past negative reports that were embedded in my head. I have heard good things but just haven't tried it.

  5. Thank you all for the advice! I'm not going to be able to do anything until Mon because I'm going out of town this weekend...alone. Some ME time with my sisters. Will have to force myself not to talk all about PANDAS and all the various topics that I've educated myself about in recent months (CFS, vaccines, immune system, myco p, Lyme, autism, and more). If there was a big PANDAS Parents party, I could add a lot to the conversations...just sayin'.


    I'll probably go to Whole Foods or one of our local stores to get melatonin. I think I have epsom salts. I think that cream is the same stuff others have said is good when kids go swimming to combat the chlorine. I am just tired of being tired. And the thing is, usually if he does go to sleep early right now (4am is early), I can't sleep...so I'm still up until 6am or so. Will try melatonin for myself. I would like to consult with my new ND before trying it tho'.


    And Lyme Mom...what is a herd? We did steroids in the fall to try to get symptomatic relief before IVIg. We're supposed to start steroids thru PANDAS doc on Tuesday if the Biaxin doesn't help. I do need to let him know about my hubby's positive IgG too (IgM & IgG were negative on his test last month...now IgG is positive but dr is treating it as past infection). I'll start searching for a LLMD too. Nothing local tho'...of course. Will at least check with my ped's office tomorrow to see if he has a source. I couldn't find anything about steroids & myco p (tho' I did find stuff about not doing it for Lyme). Ah geez. So now it's good my son's up all night...I have much to Google.


    THANKS again everyone!

  6. My son didn't need a sedative for his IVIg, but he came really close. Took 2 nurses & Dr K to get the IV in & then he was fine. I bet the infusion center could advise and give a dose of something to take prior to getting there. Good luck with this endeavor. Funny how you traveled across the country on your own for the first one, but the local one seems more daunting. Definitely don't mean funny as in "ha ha" tho'. Whew. Will be thinking about you both.

  7. Okay...last week we found out my PANDAS son has high myco p IgG (677)...positive per the lab. Via the phone, my husband's myco p results were negative. Hubby got the test results today, and they show 1.86 high (diff lab & that's a positive). So they tell him that's showing a past infection...not going to treat it. Well, a month ago, a diff dr ran a myco p test and both hubby's IgM and IgG were negative then. So, correct me if I'm interpreting this wrong, but the positive IgG is now showing a current infection, right? He even told them about PANDAS and our son's levels. He'd taken the previous test results with him to the previous appt, but I'm not sure they were copied for his file or if they were, maybe they didn't look at them.


    So, I've made a phone call and am waiting for a call back...not holding my breath tho' since everyone was out. Did shed a few tears tho'. What are we supposed to do when even the tests show the need for treatment, but we don't/can't get it? Meanwhile we've made a shift in my son's treatment to try to get rid of the myco p. And hubby has been trying to get this illness treated since December...suspect chronic myco p, but now we have a positive IgG, so I'm not sure if it's acute or chronic now.


    Wishing I didn't have to know so much about this. Wishing harder that the people that are PAID to know about this stuff actually knew more. Blah.

  8. I just assumed he couldn't get it in his eyes, ears, mouth. I'll read up on melatonin AND epsom salts. I actually have put 3M hooks up and bought an extra clear shower curtain liner that's high enough to keep the water in the bath tub (Cut off about 1.5-2 feet or so & stuck it up. That was my solution to "griping" about the mess he made with every bath. Now I don't gripe as much...except when water gets on the ceiling. Seriously. I will be glad to see this spash obsession fall by the wayside. And for a while, he was doing the tidal wave trick he learned from a Calvin & Hobbes book...I halted that real quick!

  9. No real results from Biaxin yet. Maybe a bit more compliance on the first request when we ask him to do something. He swims in his baths (splash obsession) so I don't think I could really do epsom salts. Maybe I need to just do more melatonin research. Am new to homeopathy & like I said, intimidated. Thanks!

  10. Is anyone else dealing with a child that's up all night & sleeps all day? We've been in this cycle for a few weeks now, and it's taking it's toll...on me. At least I got him to stop running in to wake his dad to tell him miscellaneous facts in the middle of the night. That made for a grumpy guy going to work all day. When this happened back in the fall, Dr K explained that it was anxiety in PANDAS kids vs. a day/night confusion. I had been using Benadryl, but that has no effect right now. Calm's Forte did nothing when I tried it the other night. I am intimidated by melatonin. I wanna let him sleep since he very likely needs it. I'd just like to join the masses of people who get to function on a "normal" schedule. I homeschool, so it's not doing anything to that...well, I've not been able to do much of that during this flare. (I've held some stealth lessons because I'm getting homeschool refusal...GRRRRR.) We are 4 months post-IVIg. This stuff got started just after I sent a pretty positive 3-month update to our PANDAS doc. We've been in contact with him & actually found high IgG for myco p (677!) and switched to Biaxin to see if that makes a difference (may add a steroid burst next week & a possible IVIg booster is in our future). We've mostly lost all the gains from IVIg & are back to not being able to leave the house & homeschool issues...going on 3+ weeks now. Tho' thankfully, the rages haven't returned...have seen a few but not as intense...and a few tantrums/rantrums.


    If you have any advice (other than "just wake him up" because I've thought of that--Duh!), please let me know. I am torn between letting PANDAS rule our lives/schedules and salivating over having a normal life/schedule. I know I should accept this new "normal" but just can't. Part of me thinks I should just let this symptom cluster run its course & do the treatment & go from there. But that's the awake me. The me that is dog-tired at 4:30am when my son shows no signs of fatigue & is running around, she's not so understanding nor accomodating.


    Thanks! (Oh...and Go Cats!)

  11. Hope you're a step closer in getting this resolved Tami. You got me all fired up yesterday...still am. The nerve of some people who are supposed to be in positions to HELP children. It truly puts me at a loss. I'm wondering if it'd be possible to get a school nurse job deccription and look for "diagnostic functions" in there. I'm thinking "act as impediment to effective accomodations for sick children with official medical diagnoses" may be there...that line must be in a lot of school job descriptions. ;) Geez!

  12. I don't wanna complicate your decision any more than it is, but my son(7) started trichotillomania AFTER IVIg with K. I already posted in a diff thread, but hair pulling was not an original PANDAS symptom for us. We saw it in the post-IVIg system-gone-wild-freak-out-phase (that's the technical term, right?), but he really got into it 3 months out. It was actually right after I sent a good update report to K. We found high myco p IgG levels a few weeks ago, which may be related (and we're treating with Biaxin now...original advice was to wait 2 months, but I sent another email ;) ). So...YOUR SON stopped pulling for a while with LD, so that seems to be more of an indicator than my son's unique presentation. Just letting you know. (((((HUGS))))) and Good Luck!

  13. My son started pulling out his hair AFTER HD IVIg. We had a day of it in the 2 week post-IVIg period...then he stopped. Then another day of it when he had a big backflip in Jan. Then at 3 months, he started pulling. He'll twist into a knot & then yank it out, which breaks a lot of hair off & pulls some out. He is pretty thin on top with some bare spots & peach fuzz growing back in. He's a blonde & light anyway, so it's not as noticeable unless you're his parent obsessing over his compulsion. :blink: And I found his stash behind his bed last week where he'd hidden 10+ clumps. That made sense to me because it seemed like BOOM the damage was done, & I guess he'd laid in bed one night & did most of it. I think (think) he's stopped for the most part, but still catch him twisting. We're seeing other stuff too...not just the trichotillomania (which I've learned to pronounce & spell now :( ) This hair pulling was NOT one of his PANDAS symptoms...came on after IVIg. He has always twisted his hair when he was tired, but this is a whole different ballgame.


    We found high IgG myco p (677!) in a test we did 2 weeks ago (his strep titers don't rise, so it could be strep too but they weren't high). We are trying 2 weeks of Biaxin to see if that helps (250mg/2ce a day). If after 1st week, we're not seeing improvement then we're adding a 5-day steroid burst. If marked improvement, we'll likely be heading for an IVIg booster with K. I didn't get any instructions as to what will happen if we see no improvement. ::SIGH:: I guess we'll go for a buzz cut & get real cozy with our DVR & On Demand & premium cable channels. We've not been able to leave the house for 3+ weeks due to PANDAS. ::DOUBLE SIGH::

  14. I recently found out that I have very high aluminum myself. My ND is treating some other things before even addressing it (apparently my body can't handle us working on all the things at the same time...YIKES!). She asked where I had gotten the aluminum, & I wasn't sure. I haven't had another appt, but I did have a tetanus shot last summer. I also did weekly allergy shots last summer, 2 shots each week. I need new pots & pans too. The paperwork said to avoid foods in cans except tuna & beans. She mentioned using BioRuella once we get to addressing the aluminum, but I don't know any more than that. Good luck.

  15. Just found out that my son has a 677 IgG on myco p. We are just over 4 months post-IVIg. I have a different post with various questions about our situation. Myco p seems to be nasty stuff from what I've read. (I've also read Dr G N's "fictional" book, but that's a different strain in there but they are all clearly much nastier than most people think.) I wonder whether or not you can ever really get a positive for chronic myco p. Unless you are lucky enough to get IgM as positive, which shows a current infection instead of chronic, how do you get a definitive answer? We didn't run a myco p test prior to IVIg, so I don't have a comparison. It seems like a high IgG would be significant. Good luck getting it figured out & taking your next steps.

  16. THANK YOU! I'm just of the opinion that high IgG is likely relevant and want to treat it vs. wait two months. Our doc usually does one IVIg and waits. He's been known to do another one, but after a sizable wait. My hubby had neg IgM/IgG on a myco p test last month, & I thought for sure it would be positive (he's been sick since Dec). A different doc ran another test last week on hubby...verbally today they said it was negative, but I don't have a copy to look at any numbers. It just seems like myco p is not treated as seriously as it should be...or I'm just paranoid...or both.


    Thanks again for sharing!

  17. Okay...I'm gonna do MORE research on this (more than I've already done). And I kinda know the answer, but 2, 3, 4, 5, 100 heads seem better than one when it comes to PANDAS.


    DS(7) has PANDAS. We did IVIg in Nov '10 after 2 known exacerbations to dx'd strep...we got PANDAS dx in the middle of the 2nd one. We did not test for other infections. Saw good results start 2-weeks post-IVIg. Then a big flip at 6.5 weeks or so...an ok recovery from that. Sent a positive 3-month report, even tho' we were still seeing some things. Well, those things we were seeing stayed & got worse. Trichotillomania started during this time...bare spot on his head now & considerable thinning. (This was not a pre-IVIg symptom--we had a day or two of it post but nothing like what he was doing a about 2-3 weeks ago! And I found the stash of hair earlier this week...he twists a knot & then pulls. It has seemed to have stopped tho'...for now.) His age regression makes him more like a 3-5 year old at any time. Have seen some rages over small things. Can't say no or he tantrums. Carries a stack of books & stuffed animal around. Insomnia is back & he won't sleep in his bed. Some other OCD things that he's had for a long time. Perfectionism. Can't take him out of the house due to the unpredictability of his behavior. Had to cancel a lot of things I'd planned because prior to this dip, things were going well. (I know they were, because if they weren't, I wouldn't have planned outings/trips.) Haven't been able to homeschool for the past 2 weeks (public school would not be possible if we were going). Impulivity. Low frustration threshold. There's more...you can imagine. We're not quite to pre-IVIg dark place, but all the positive things I put in my 3 month post-IVIg are basically gone. And we'd had all positive reports. It's heartwrenching to have lost the gains we'd seemingly made. And I'm back to feeling crazy & on the computer all day & not feeling like doing anything but all PANDAS & related research, all the time.


    So, I ran some tests (strep titers & circulating immune complexes) per the expert. I threw on a myco p test since my hubby has been sick since Dec, & even tho hubby's myco p test was neg it's such a tricky bug. So...my son doesn't run high titers even with a current infection, so those were low: ASO, 21.6 & Anti-DNase B, 1:60. (For reference, with an acute infection in Sept his titers were only 24.1 & 1:85.) Immune stuff negative/normal. Myco P was negative on IgM but 677 on IgG. Dr thinks this may or may not be significant and wants to keep him on 250mg zith/daily and wait two months. Two months. I've sent another email (like any good PANDAS Mom would do if you said something might be significant). I didn't worry about myco p as much pre-IVIg because I figured if it was there that the zith WOULD take care of it post-IVIg. Now, I know way more about the possibilities of chronic myco p & how it hides & how negative tests can be false...I know too much probably but still not enough.


    So...here are the questions if you didn't get thru all that rambling:


    What would you do or think about a 677 myco p IgG (>320 is positive)?


    Can it be zith resistant?


    Anyone with similar IVIg response that had a myco p co-infection showing with high IgG?


    Since hubby has had 2 neg myco p tests, should I let that one go where he's concerned? (I'm all paranoid about chronic.)


    Anything else (other than Lyme) that I should think about? That's already in my mind but I have myco p result now.



    It's tricky too because I trust my dr but this is MY KID. And we did IVIg already, which is a bit scary.


    Thanks in advance for your take on things. I have a new computer that stretches things across a big 21" screen, so it doesn't look like I'm writing as much as I'm sure I did.

  18. Bless you for being able to leave your kid with a sitter. Don't feel bad about it. I'm glad things are still going well for y'all. :)


    It's a good letter. You might want to have them note any other strange behavior they see, since he may show certain things to a sitter that he wouldn't show to Mommy. I'd add a bonus too, because they are likely earning their money. ;)

  19. I'm getting ready to post about myco p since I got a test run & son's IgG is 677/IgM ngeative (I know...may or may not be signifcant). Went to an ND for me & found a whole bunch of invisible things wrong with me. (I was going to say a whole "host of invisible things", but I've sent out a parasite test, so that seemed icky to me. Had to check other things too.) It just seems that when you're dealing with these clinical dx diseases that it doesn't take much to get a check in every box for all of the conditions. (Was gonna say "tick in every box" but again...semantics.) This doesn't help anything, but it seems that parental medical history should just play a part in it besides strep titers.


    I hope everything gets sorted out for your son soon (and anybody else who happens to read this...and me too!).



  20. The meds were a red flag to me. And the stacking of dx's. They lived in CO, so I thought of Lyme too. I still need to log back in there & do a comment somehow. Had to create an account & wait for an email. Way too long for me to hold one thought nowadays. It wasn't as easy as the Oprah thing last month. :). Sometimes I think I just see PANDAS everywhere. I guess confirmation from another PANDAS Parent counts. ;)

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