JAG10

Hi Lfran, I'll take a stab at this, but-disclaimer- might not get it exactly right. Your situation is somewhat similar to my two girls although both are asymptomatic of strep and I have mild pandas suspicions on the younger one. My understanding is that a carrier swabs/cultures positive repeatedly, but does not have symptoms and, I believe, does not develop the infection (which is indicated by a rise in the titers you mentioned) thus the carrier state has the reputation of being benign, which is questionable. So, it would appear that your younger son had an asymptomatic strep infection sometime in the past several months, but you can't tell exactly when because you only have one measurement and there is {no or not definitive} data on the rate of fall in titers. Hopefully someone else can confirm or amend this for accuracy?

Joan You're asking about reacting to somebody elses kidney infection, not the pandas kid, right? I wouldn't think so...

If you still have your little friend, you can send the tick to that Genex Lab (i think that's what it's called.) That's what I did when my daughter was bit in 2006 abd it was $60 back then.

Friends: You're working so hard, your effort and dedication are shining through! A gentle reminder that we cannot vote for our friends at WMS as that is our agreement with Tacoma Swim, nobody ahead of them. There are about a half dozen PANDAS comments on the WMS page today, so please pivot your vote in another direction. We gave our word. Thanks and keep up the fabulous work!

Just to piggyback on what Kelly and Vickie have already said..... KEEP IT UP!!!!!!! VOTE VOTE VOTE The weekends are CRUCIAL!!!!! Those that closely monitor the contest activity observe the most movement on the weekends! Perhaps others only have access to computers at work, who knows, but we can make real headway on the weekends. Memorial Day weekend will also be CRUCIAL!!! If you are going away with no computer access or just know you will be too busy, PLEASE PM Kelly or Vickie and arrange a way to get your list to one of us who can log your votes for you!!! MAY IS NOT OUT OF THE QUESTION!!! Keep gathering emails, voting, smiling!!!! WE have to be our kids' heroes!!!

Yes, we saw Dr. Elia at CHOP, she's a psychiatrist and first pointed us in the direction of PANDAS. It takes a long time to get an appointment. Her treatment options are SSRIs, minimal, short course abx or PEX, no ivig at this time. Are you in the Phila. area? I'm in search of local PANDAS friendly docs and may have a good lead.

Cyber kiss for ya! Love you!!!!

EAMom, Do you think they need to be on full strength abx post ivig or the prophylactic dose? If full strength, for how long before you taper down dosage?

Confused again here!! Tacoma Swim Club has comments posted ALL OVER WMS's page? Yes, they are in the same category. So, we are not to vote for WMS, but they are? Are they confused or phony?

Yeah, well...this part could be the tricky trust them part. Mr. Thomas may have told his students to stop commenting for today, we just won't know. But I will say this, we held steady today and WMS dropped a spot. We're assuming the closer to the top a group is the more fragile their standing. We know voting tends to drop-off on the weekends and surges upward can be made. Maybe with weekday voting resuming, this is why they lost a spot. I know we have all been voting in mass numbers for them all day! I'm glad you held off on the scolding Peg!!! I truly believe these kids and their teacher want all their cyber friends to win a grant. If you scroll down for Gavin Thomas' comments you can see where he writes to the kids about their "true supporters" and we are in that group.

Everybody hold on... The comments on Maharishi's page are old. There in ONE from today, some science teacher. Those other comments were there and we knew about them. WMS has also been supporting Chance for Bliss which is another 50K competitor. I've been watching there comment page today too and they dropped off there today too. They have been keeping there word for the exclusive voting FOR TODAY. In my opinion, WMS is not trying to be deceptive; maybe altruistic thinking we can all go to the top together, but they are, from what I can see, keeping their word with us about today.

One of my colleagues had pink eye about 6 weeks ago. It went away after about a week and a few days later, she developed typical symptoms for strep throat and did culture posiive. So, my pink eye is gone, I used a topical antibiotic eyedrop, but do you think I should get tested for strep? Neither of my girls ever show typical strep symptoms, they are always assymptomatic.

Very Cool!!!! And I'm sure it was your vote too. Pepsi updates the ranking precisely every half hour, so if you are out there voting like crazy and nothing happens, check back at the next hour or half past mark. It won't update instantly.

It's just certain people.... do you hear anything different in these people's speech? You can google it DAF, delayed auditory feedback stuttering (try those four words). I wouldn't buy one, especially since you work in the schools and it would really be an experiment. That's why people borrow them, to see if it is effective first. My pleasure, no charge

Melanie, I have not heard of this except from you, here. The only thing I can think of that is somewhat related is DAF, delayed auditory feedback which is a device for a person who stutters themself and delays the feedback/hearing of their own stuttering speech resulting in making their own speech fluent. It would be VERY interesting to see if that device may a difference for Danny when this happens to him. If this starts happening again, your school's special education department should be able to let you borrow one for a trial. I have a contact at LaSalle University who is a stuttering specialist that I could ask? When this happens, does EVERYONE he hears speaking sound like they stutter or only certain people? How long does it usually last? Jill

Melanie's recent strep prompted me to ask if those of us who work in schools, daycares, ect., how often do you get pink eye? I get it 3 or 4 times a year which I never gave much thought to before, but now that I think about it, I don't think my colleagues get it as often as I do. So, if it is most often strep or staph, is that the same kind of strep infection that goes through your bloodstream? I mean, they only prescribe topically antibiotic eyedrops, not ones you ingest, so besides passing on the "pink eye" to the girls, which has never happened, do I need to worry about this? Does this indicate something about my immune system that I get pink eye so often? I am a speech therapist and my hands are all over kids' mouths and faces all day. I'm constantly using sanitizer! Has anyone's child ever had a symptom exaserbation from pink eye or someone around them having it?

Is strep A rare? What did it mean by rare variant?

I think we should consider collecting our own email lists, similar to sponsorship donations except we only need your name, email and permission to vote as our leaders deem best strategy. I'm thinking, if we need to for June, start to form relationships with those that did really well, but didn't quite make it, vote in blocks with less comments. It would probably be faster than what we're doing now. But that won't work for May and hopefully we'll start gaining ground again tomorrow. I think I'm going to start asking folks and middle school students at work.

Hi Andrea, I don't know much about this, but I thought that in IGa that was below 20, IVIG was contraindicated bcs of how the body would respond to the IVIG regardless of the condition it is being prescribed for. I also don't know what steps can be taking to increase IGa. Lots of smart people reading will give better info soon! Hang in there! Jill

Which Backpack program, Kelly? I've got a few votes left. We've had a rough day. Many of those we steadily support have maintained or advanced. Is there anything we changed today that needs to be reconsidered?

I was reading this book to my girls last night and when we got to the part about the Specialists and the Experts and all their guessing with pills, potions and therapies making Camilla's condition worse and worse, Court said "That sounds like me!" with a big grin. She asked me if I thought lima beans would make her normal again. I laughed, but later I cried. The story is supposed to be about being true to yourself, but through PANDAS eyes, it takes on a different meaning. I wish lima beans would work.

Didn't SMA already win once in a different category? So, if they are the same, they'd be going back for seconds and thirds? we slipped again Does anybody know what "shift voting" is??

I don't remember seeing a specific cause at a certain time, but Kelly had indicated block voting for those we've identified at: 8:30 1:30 6:30 9:30 The idea being groups would see many PANDAS comments one right after another and maybe even a bump up in number we could take credit for! Maybe this is why we dropped? Are most of us used to voting in the am and some people are now waiting?

Perhaps I'm a little irritated we slipped this morning, but I'm laying the guilt on now... ACTUAL PANDAS vote being cast for you every single day!! Please, honestly support our cause. Our children sincerely need your help!! PLEASE!!!

That sounds good; I'm glad you saved a group for the evening. Are those ESTs?