eljomom

I am sure many of you are tiring of me and my repeated questions....thinking it part of perimenopause but one minute I grasp it, and then I don't.... So, in thinking about symptoms of pandas/pitand--how some kids have distinct "exacerbations" and then remissions to baseline or almost, but there's a definite beginning and ending....and why some (or at least us) may have had that MILDLY so it wasn't even noticed as a pattern (or maybe having 4 kids in 6 years kept me too busy to notice). My question is: WHAT EXACTLY IS CAUSING THE SYMPTOMS? I mean, I get that it's autoimmune...I think. That body is attacking its own basal ganglia in some way (but NOT causing damage???) and causing signaling issues with dopamine. But what makes it "wax" or remit or lesson in some kids, and in others, not? I know some will say "underlying infection." Okay....that is a possibility....BUT, let's look at those kids who have tried every abx under the sun, tested for every infection under the sun, and everything is negative, and the kids still have continuous tics, etc.....WHAT IS THE ISSUE? Is it inflammation in the brain? If so, from WHAT? (if no infection)? If Cam K is high, then there are inflammatory cytokines running around, right? Which can be a normal response in a healthy person, correct? But also, if anti-dopamine antibodies are high, then antibodies are running around, right? With no infection? So they are just running around in blood, on a mission to attack basal ganglia? Sigh...breath...sigh... Thoughts???

well, I did call and ask, and he said it was to view some videos of kids' movements to say if it was chorea or tics, or something like both, etc. Nothing miraculous on the pandas front We did not go back to him, as he said we needed one hand stirring the pot, so to speak. he would have tried abx, but is VERY VERY against trying steroids...said he'd pick IVIG before steroids if he had to pick....

EAMom--dd weighs 45 pounds. I truly feel that strep is NOT an issue right now. She was on a month of Augmentin (treatment dose) before the Zithromax, and I feel confident that would have treated any strep. And she has no different symptoms physically or behaviorally. I feel like chasing around different abx for an autoimmune disease is like giving ...oh, I can't even think of one....like giving Motrin for a cough. I just am stuck on the ledge with my dd being generally functioning, albeit ticcing...and when you take the risks involved with IVIG....and risk making thins worse....and who know what else down the road...

WorriedDad---I agree....our pandas doc sent us to I.D. doc when I asked about testing the family...this was at our 3rd visit...I.D. doc said there's no point....so getting someone to test is an issue!!

mommakath---just curious why you pursued Lyme if there were no positives on Igenex?? Did your son have other physical symptoms too?

Band 41 is NOT Lyme specific, from what I have been told. A huge portion of the normal (uninfected) population will test positive for it. Also, unless you do the Band 31 confirmation test on Igenex, I would not make Band 31 be the ONLY reason to believe Lyme. My daughter's Band 31 was ++ and ended up being negative on confirmation test.

Me: the tics are still there, no better. separation anxiety may be a LITTLE better. Dr.: oh, don't pay attention to the tics as an indicator....she's doing better... Me :(in my HEAD..not out loud)---hmmm....and you know this from the 2 minutes she sat paralyzed with fear in your office...do you LIVE with her..... Me : (again in my head, but wishing I'd said aloud): don't use tics as an indicator?? well, the sudden onset of about a dozen tics almost overnight was THE REASON we went beating down the pandas path! Pandas...sudden onset of tics and/OR ocd....what about the kids who ONLY have tics......

Is there any way one of Dr. B's current patients could call the office Monday and ask for a quick phone question....ask him HOW he can be certain by looking in the nose that it is strep? OR how about someone who JUST saw him and had him say this, run their child to a Minute Clinic or local doc and ask for a swab of the nasal cavity?? I am really, really curious about this, as we were considering the trip to Dr. B. But between this diagnosing strep in everybody's nose, as well as the strep pneumo. titers relating to strep A discussion, I am now weary

bump

Hello, I usually post on the pandas forum, but though this question may be answered here. Just wondering if there is any point in retesting for Lyme now that dd7 has been on zithromax for 2 months (low dose) and one month of augmentin before that? She was negative on Igenex but had a few IND's on lyme bands. Do they need to be off abx for a while before re-testing? Also, anyone know what things may cross-react with certain bands (like 31, 58, 66)? Thanks.

Just wondering if there is any point in retesting for Lyme now that dd7 has been on zithromax for 2 months (low dose) and one month of augmentin before that? She was negative on Igenex but had a few IND's on lyme bands. Do they need to be off abx for a while before re-testing? Also, anyone know what things may cross-react with certain bands (like 31, 58, 66)? I will post on Lyme forum too.

I have heard that strep is not the only thing that will cause Cam K to be elevated. That Lyme and myco. p can too. Has anyone else heard of anything else that might cause it to be elevated? Also, what exactly does it mean that "normal" kids with strep are showing elevated Cam K? Does this mean it doesn't really tell that there is an autoimmune issue??

Well, after another "teaser" few days where we thought the tics and ocd were decreasing, it's back to full body tics (shoulder-arm-hand-mouth-eyes-tongue....). She's been on steady Zithromax 100 mg/day for over 2 months. Doc says 100 mg "should be fine"---fine for WHAT?? prophylaxis for strep? or for treating underlying infxn? Which brings me to my question---since her sudden jump from a couple tics to over a dozen this summer after a high fever (not strep) and 3 months close contact exposure (and infection at a couple points) to staph Impetigo, she has not been tic/ocd free at all. CamK was high (168). Antineuronal was high. (D1). So since Pandas is supposed to exacerbate and remit once an infection is cleared, does this mean she does not actually HAVE pandas, or that there is still an infection? She does not have myco.p, strep, or symptoms physically of anything else. I know, Lyme is out there, but Igenex was even negative. Just feeling rather paralyzed again...spinning wheels. Thanks for listening

I had a phone consult with a pandas doc who specifically told me that since my daughter mounts a good response to most of the strep titers (of the 14), therefore she would likely show an ASO and antiDNaseB response to strep????? Huh

Then why are the pandas docs testing for the strep pneumonia titers? Does that mean that strep pneumonia is just as much a cause of pandas as Group A strep?

Yes, dcmom, i am wondering the same thing.....

WorriedDad--great explanation. But then is there a "cure?" Does plasma exchange take out the bad antibodies and "cure" them? Or will they still be produced when even "exposed" to strep?? Other than keep our kids in a bubble, prophylactic abx then almost seem like a bust. They might prevent strep infections, but kids will still be exposed, and what about viruses?? This is depressing

Glad you got to see Dr. B. I have been thinking about it for a while now. I do have a question about removing the tonsils and adenoids in ALL your kids??? Are they symptomatic?? Recurrent strep?? Or is it just in case they are carriers? Thanks, Wendy

I am just taking a stab here based on what I have "heard"---the DNase may continue to rise for a while---they do so weeks after ASO rises. Honestly, again from what I have "read and heard"---and I shudder to think I am going to say something I've been told by a few "pandas-exists-but-titers-are-it" docs, that people will have all sorts of different "baselines"---some school age children will have your level titers with NO strep (negative cultures, negative symptoms, no pandas) and that just means they have been exposed. Just a thought...

Malke--can you tell me what signs you go by for yeast??? Thanks! Hi Colleen, DD is taking 200mg (1tsp) daily of Zithromax, and she weighs around 42 or 43 pounds. I did get a throat swab for strep today b/c of a really bad sore throat, but I think that'll come back in 24 hours and I'm not even sure it is strep -- I was just a little worried, as I'm sure you understand, and had to make sure. Other than that, we haven't yet tested myself or my husband for strep (just the three of us here). How should we test for being strep carriers? A throat swab, right? And tell our docs to grow it out for the full 72 hours, like you mentioned? At that point, I think I read that we should go on a course of abx ourselves if we test positive, and then get tested again? Thanks for your perspective on the abx. My instinct would be to get her off abx as soon as possible -- daily abx from age 3 months to 3.3 years (for a mild birth defect in the urinary tract, now resolved) is what got us into this mess in the first place -- lots of yeast and leaky gut from that, which exacerbated her the sensory issues she was born with and probably made her susceptible to the PANDAS. But I may reconsider and keep her on them, especially if she seems like she's doing okay, with no side effects. We're giving custom probiotics (no strep strain) and she seems to be doing really well in her gut, all things considered. There's been less signs of yeast than before we started abx. Why do you think our kids need a longer course of abx? Thanks again! Malke

Is there a way to test for staph underlying infection??

Is there really a way to correct the underlying immune system malfunction?? That is what I want to know....does IVIG fix it?

The capsules sort of taste like vanilla pudding when you open and pour it right into the kids mouths....so they say. My oldest took the adult capsules when she was 2 years old after having C.difficile....loved the taste.

I thought Mono was a virus---not understanding how keflex would help with that???

Another interesting tidbit from I.D. doc (at Georgetown Univ. Hospital---department head)....she does not like Zithromax for Group A strep It seems like everywhere I turn, I get a different doc saying this or that abx is good/bad, etc.....I guess it really does depend on the kid. I was not comfortable putting dd on clindamycin b/c of my past experience with it---major diarrhea after just 2 days!