JAG10

Vickie, I saw a couple comments by JETT that said for PANDAS to be sure to sign into the daily reminder system so they can keep track of our votes??? What are they talking about? We're all voting for JETT like crazy and they are going up, up, up. We agreed to no comments and, unless I missed something, don't know what the daily reminder system even is. We expect their support for our faithful, consistent committment to them for the second month!

On an aside, I have to admit...I wondered if Dr K was the archetype for the ER writers when they created Dr Kovac. I mean the name is a shortened derivation. Seems a little more than coincidental.... And it took place in Chicago, right? Hmmmm.... Oh, come on, somebody has to have the nerve to ask him! I nominate Ann!!!

How about that handsome Croatian doc they had on ER? Luka was his name, I think. That oughta work for you just fine, my friend!

I know EXACTLY what you need... a good, trashy romance novel! I'm sending you one of my favorites in John's IVIG survival kit. (BTW- the ivig survival kit is a gift, I'm not selling them to supplement my income )

Folks- You've gotta VOTE, VOTE, VOTE!!!!! That Los Pen Academy is right on our heels!!! That had dropped from 7 or 8 down to 14 yesterday and now they are back to 11. EVERY SINGLE VOTE COUNTS! GET THEM IN BY ALL MEANS NECESSARY!!!!

Great job to you, Vickie

WE'RE BACK IN THE TOP TEN!!!!!!!!!!!!!!!!!!! Every vote counts!!!! Get every single vote you can!!!!! WOOOWHOOOO!!!!

I really don't want to sound like I'm trying to relate everything under the sun to PANDAS. My dd is 10 1/2 and one could have nothing to do with the other, but... for those of you with children in the prepuberty-puberty years, have you noticed any relationship between treatments and acne in your kids? When she first tried zith, she broke out a lot on her forehead, then when she switched to biaxin another cluster of acne began to appear on the forehead. Now she just started augmentin and another surge of acne has appeared by the hairline. I would have thought 10 is young for acne to become this frequent, but maybe not? Or is it possible the different antibiotics are bringing this out early in her?

Folks, we have several schools ahead of us right now. We need to take advantage of the weekends again! Mid work-week is always our toughest time, so let's gain as much ground as possible over the weekend to give us some cushion. There's a chance these school groups could struggle toward the middle and end of the month as everyone splits for the summer. We need to stay in ready position when this happens. Turn over every rock looking for votes. For our senior or computer-challenged supporters, save the link in their favorites and show them how to find it. Anybody hosting graduation, birthday or little league parties? Let your guests use your computer and show them how it's done. WE NEED EVERY SINGLE VOTE WE CAN GET OUR PANDAS PAWS ON!!!! PANDAS first, everything else is gravy.

WOW! That sounds scary and must keep you up at night!! I think it is Dawn's family that have recently tested with the crazy high DNAse B's 3000-7000, I think. Drs. K and T were both floored and very concerned if i remember correctly. I think they are waiting to be retested soon. It means something, just not sure what. Maybe it is a particularly nasty strain of strep indicator.

EAMom- We know w/i range ASO/DNAseB titers do not r/o PANDAS just the same as above range ASO/DNAseB titers do not dx PANDAS. But the PANDAS docs all seem to see significance in extremely raised ASO/DNAseB, like over the 99%ile, titers over 1300-7000. Do you know why that is deemed significant for PANDAS? I wonder when we get to the day where subtypes of PANDAS can be diagnosed, if it will be by symptomology or by biological markers such as elevated titers or not?

In the rules that Pepsi outlines in the application, a specific goal has to be identified with progress that can be measured and that information has to be shared with Pepsi so they can publish it. So, it could be something like... 125 children were tested @ $400/test, but I don't think it can be a buffet of choices at Dr. Cunningham's discretion. Kelly-Did you have to identify a specific research "goal" when you submitted or can that be amended once the grant is won? The 2-3 wk waiting period after voting stops is for Pepsi to make sure the purpose of the application meets their guidelines. I would hope if there are issues, Kelly would be given the chance to make adjustments.

Well, Kelly, considering all of the effort and love you've poured into this project... and that you submitted the application.... I would think she would weigh your opinion considerably!

Isn't FDA approval what would result in the most significant advance foward in terms of definitive dx and insurance coverage? Would that be the most meaningful use? It may take awhile, but it'll never happen if they don't get started. This isn't going to come off right, but... using the money to pay for the tests of those who would struggle to come up with the money on their own... won't help to get the treatments the child could need, covered by insurance, if their subsidized test comes back PANDAS. Also, while the connection with Lyme could be fruitful for both diseases, this grant was intended to further PANDAS research. Lyme has way more public recognition, so perhaps the Lyme experts could come up with their own funding for Dr. Cunningham. I tried to go back and make this post sound less crabby, but not much luck

I'd like to add about the medication issue; IMO, they frequently don't work they way they are supposed to in our kids anyway. We were on this rat wheel with my girl for four years and she didn't respond the way doctors told me to expect. If it was a med that was suppose to take 4-8 weeks to build up in her system, she'd show good improvement after two days and that improvement would be gone by the time the med was just supposed to start working! The psych who first identified her PANDAS, still wanted to treat her with the same psych meds that in any combination and dose hadn't worked in all that time! I would say over and over to these different doctors..."something's just not right".... one psychologist, in a condescending tone, said "it's never going to be right"... this was after her meeting my then 6 y.o. ONE time!!! We NEVER saw her again. Geez, why don't you go work for Burger King then! No study or anything but my experience to back this up, but.... I felt like the medication failures or inadequate relief of ADHD and OCD symptoms was my girl's body's way of telling me- NO, this isn't right! Keep looking!!! ...and her body was correct!!!

I'm going to PM you

Alex: I am always so impressed with your ability to cut through all the garbage to the very essence of what really matters... in a way that even Dr. Rue-the-day-he-messed-with-PANDAS can comprehend!

Do you think doc meant side effects or risks? The risks are that bcs it is a human blood product, there could be some disease out there that currently is not identified and therefore the product is not currently being tested for at this point in time. It is a risk, but make no mistake about it...going through childhood, adolescence or adulthood with untreatable mental illness has numerous, more likely risks.

What if...for now... we stay with the status quo, plan from yesterday? Voting for others with their permission is not posted on their website as a violation. Pepsi cannot expect everyone to call for clarification and the representative Vickie spoke to could be mistaken, right? It's not like we don't ALL have experience with that with insurance company reps giving us the wrong info we then go and make major discussions upon!!! I'm sure most people aren't calling nor do they have any idea there was a rule change. If you're going to do something like that, you have to make people click a box they read the rule change when logging in or something to ensure they were notified. If they disqualify votes later, sobeit. There is no getting around it; if Pepsi decides to sift through and disqualify votes, it won't only be "our votes" but all of our alliances votes too. EVERYONE will have disqualified votes! What I'm saying is everyone will be in the same boat and it will not reflect poorly on the disease. But, if we let days go by and turn out to be wrong, we'll never be able to get those votes back. Up to this minute, people are posting "sending you 25 votes" ect. I think we should keep our plan in place until something is officially posted addressing this specific issue. If Pepsi decides to sift through all the votes, everyone will have issues!!

That IP address scenario isn't going to work for them either. There are groups that are setting up laptops at their community centers or churches so people who don't have computers can vote. They have "voting sessions." So, how is that going to work?

I work for a school district and the page load is just as slow. Perhaps someone needs to approach Pepsi this way... the policy of not being able to physically cast a vote for someone who has given you their permission is disciminatory. It discriminates against the elderly who do not know how to navigate computers or the internet. It discriminates against the poor who do not have access. It discriminates against the handicapped who do not possesses the physical abilities to utlize a keyboard. These are among the very people many of these grants aim to benefit. AND many of these people are Pepsi customers..... at least they were!!! Vickie, I wonder if you spoke to a different Pepsi rep. if you would get a different answer. Anybody on the board an attorney who knows the tone and how to handle this conversation to get them to see the light?

LOOK at the symptoms, comorbid conditions and clusters Mom w/OCD Son listed!!!!!!!!!!!! -- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%). This is a HUGE problem for the toddler/preschool/under 5 onset crowd!!!! The range of "within developmental limits" for the symptoms listed for the under 5 kiddos is very broad! Periods of equilibrium and disequilibrium are the norm for this group! If we don't have pediatricians that are constantly on the look out for strep (and how about all those ear infections!)... where's the red flag that isn't going to get brushed off as developmental? I just keep thinking to myself.... if my girl was born today instead of 10 years ago, would she still get missed? You bet she would!!! At this point, I still think the standard has to be PANDAS has to be ruled out prior to an early childhood (6 and under) mental health referal because these criteria lists do nothing to protect our very little ones.

Vickie, you are doing an amazing job with all of this!!! JUNE is our month, I have no doubt!

May- We totally understand where you are coming from as we are standing in the exact same situation. This month was fruitful in many ways; learned the ins and outs and pitfalls of this contest for an unknown, orphaned disease, our competition and future allies know we are a tenacious bunch rallied, grown and continue to expand our powerful voting base developed leadership to coordinate and maximize our efforts toward the goal represented our love and committment to our children with honor and integrity The hope of the "commenting" efforts of May is that we have demonstrated the credibility necessary to maintain strong, faithful and determined alliances for June. The creative "get us noticed" comments of May were needed to reach that end or folks would be replying back to Vicki and Kelly "Who are you? I've never even heard of that!" We also learned that many of the top players now in winning position have relatively few comments compared to us, their groundwork was already laid. We also know how much the comments slow down our page load. Do NOT think your hard work from the past 4 weeks or through this weekend is for nothing!!! IT IS NOT!!! It is absolutely necessary or we are pulling the rug right out from under our own feet in terms of our ability to negotiate. Our massive voting efforts this holiday weekend will put an exclamation point on all we have already demonstrated! We are heroes; every single one of us! For our own children and for our pandas family. -

Well, Vickie...I'm sure you are disappointed in Tacoma! But, we've seen this before where folks start to take off, then double cross, then we pull our support and their numbers fail to continue to rise and even fall. Look at SKY U, Mule M, Flagstaff...even WMS was up at 12 with our support and has hovered btn 13-14 since our agreement w/Tacoma. Such a shame for them WMS will not participate in June. MAYBE we can pass the Lemurs...they're down to #19 now! Are you sure about the random ranking for the first 3 days of the month? Guess that means no need for midnight madness June 1? Is there anyway to find out from Pepsi if they will be clearing our comments and/or our profiles for the new month?