Kayanne

I dropped in a fresh thread with an exclamation point on this, but since this is the main thread . . . If you're trying to vote via Internet Explorer, that might be part of the problem. Apparently, some settings in the Explorer gum the site's download up, especially with regard to the comments. So, use Mozilla Firefox web browser instead, and it is QUICK, QUICK, QUICK!!! I was able to place all 10 votes in less than 5 minutes, and I think it only took me that long because I was hunting around for Vickie's "picks"! If you don't have Firefox on your computer, it is a free download; see the other thread for a link for the download. Thank you for the tip about Firefox, but my point was that if our supporters cannot log on via a direct link (refresheveryting.com/PANDAS) then it may be too complicated for some people to go through the extra steps...therefore we are losing votes....the page freezing under IE is a technical difficulty, and should be brought to Pepsi's attention. Some of the people who were on my proxy list are family who are barely computer literate; and I had their explicit permission to create accounts for them. Downloading a new browser is out of the scope of what I would expect them to do. Now asking them to do it on their own...with the problems with IE...it just may not happen. This is a direct quote from the Pepsi Refresh FAQ: "What web browser should I use? For the best site experience please use one of the following browsers: Firefox 3.0 Firefox 3.5 IE 8 IE 7 IE 6 (*limited support where items such as carousels are not enabled) Safari 4" If Pepsi lists IE as a supported browser, then there should be no reason why it freezes up only using that! I use IE 8, and have kept up with all of MS's updates.

I just called this number, and didn't even address the proxy votes...I wanted a complaint registered that the website is STILL FREEZING when I go directly to www.refresheverything.com/PANDAS If "technical difficulties" is the loophole, then we need proof of it.....EVERYONE who has difficulty loading this page should call, and should also mention if friends and family have complained to them also. She said they have not had any complaints, I said that was why I was calling....I asked if they could remove the comments, she said no. She said she had no difficultly loading our page, and it must be my computer...I told her that this page is the only one that freezes my computer. I admit, I was a bit testy to her, but I think if we are expecting our friends and family to cast votes for our cause without our help, then we should really push for the website to be running as smoothly as possible... I told her that the people on the online forum that I participate in, are still reporting that the page is slow.

Vicki, I agree with your decision. We have to follow the rules...even though they stink! I have been combing the refesheverything website, trying to find contact info. I can't seem to find it--they must have just given the applicants a hotline number Perhaps a flood of email to the corporate headquarters...at the very least requesting that the comments get deleted?

Kelly, I am in total awe of all that you and Vicki have accomplished this month. THANK YOU! THANK YOU! for all of our kids...

I'm glad you feel better...this forum is the place for venting. Welcome, you have found a group of moms (and some Dads) who completely understand what you are going through! I can commiserate with #2 (somewhat)---my closest friend saw the dramatic behavior shift and the almost overnight recovery on predisone..but she is sick of hearing me talk about it now and #6--I left the Infectious Disease Dr in tears because he couldn't say it was PANDAS because it was her first episode and there wasn't any pattern of "waxing and waning" that is supposed to be typical in PANDAS....but if she does get better and then has another episode, then he would say it was PANDAS...so generous and compassionate, don't ya think? Oh, and he also said...there is no real treatment anyway...take her to a pediatric psych. Why would you even agree to meet a child with suspected PANDAS, knowing full well you wouldn't treat it anyway? It has been a year since that appointment, and I am still so angry about it. What part of the country are you from? Here is a thread that lists helpful doctors: http://www.latitudes.org/forums/index.php?showtopic=5023

Thank you for all the hard work you guys are putting into this ...it can't be easy to deal with this behind the scenes! I just wanted to clarify that we will definitely be in for next month...so I can start to send emails urging the continuation of voting and proxies...

I believe that these are all common side effects of prednisone...although you should let your doctor know about the frequent urination. Here is a website that gives some good general info on pred: http://noairtogo.tripod.com/prednisone.htm This site lists frequent urination as a symptom to report to your doctor--it can effect your blood sugar. The "pre-IVIG" protocol you are referring to I think is Dr. K's typical use of prednisone for 5 days to determine if a child may respond to IVIG...I think the dose is anywhere from 10mg - 60mg...depending on the size of the child--tapering is not needed. My daughter has used prednisone as a treatment twice...each time it was for one week of full stength, another week of half that, and then 2-4 weeks of a tapering off. The first time she was about 42-43 lbs and her full strength dosse was 10mg 2X/day. The second time she was 47-48 lbs and her full strength dose was 15mg 2X/day.

WOW! I'm posting this one to my facebook wall!

I'm so sorry that you are at this point...I will keep you in my prayers...Keep us posted--I hope he gets better again after the next treatment. Is he currently on antibiotics?

I also wanted to add that fish oil seems to really help my daughter too...if I skip a few days, she seems more edgy, and little more congnitively inflexible. I completely agree!

Have you tried prednisone yet? If his improvment seems to be leveling off with just the antibiotics, would you and your doctor consider a treatment (not diagnostic) dose of steroids? However, I think it is wise to do it in conjuction with antibiotics. My daughter benefited a lot from two courses of prednisone. Usually a week at full dose, the second week at half that, and then a taper for 2-3 weeks.

I think I've seen this...My daughter's pediatrician printed it out to show me. He said it was info that he got from the local hospital...it helps them to keep up to date with medical issues. I scanned it quickly, and could tell that it was out-dated and followed the NIMH recommendations that IVIG and Plasmapheresius should only be used in clinical trials, and that antibiotic prophylaxis are not called for. I told him I didn't agree with those conclusions. I told him about the Columbia Mouse Study that came out in August '09...He hadn't heard of it. However...I think it is a Big deal that the word is getting out that these kids need to be evaluated for strep at the on-set of symptoms. I do think catching this early it really important...I thank God every day that our daughter's pediatician made the connection between her OCD and recurrent strep infections...perhaps catching it early would decrease the number of IVIG and Plasmaphereisus procedures required.

If it is herpetic whitlow, it can be treated with valtrex or acyclovir--it might help lessen the severity or length of time. Last September, I had a sore on my finger, that seemed herpetic (the doctor did not culture it though). It started as a burning, itchy feeling....then the white bumps...then they started to go purple/red...it hurt...after a couple of weeks the skin in that whole area broke off and new skin grew without any scarring. My doctor prescribed valtrex, and I swear I had another itchy, burny spot on the finger next to it...an hour past taking the medication the sensation would stop, and I knew when it was time to take it again, because I would feel the pain...that finger never broke out in a sore. Oddly enough, I was relaxing in the noon sun on the day it started. However, I also had the other symptoms of an intial herpes infection...tingling, and sensitive skin on one side of the body, slight fever & chills...for only a few hours. The antibody tests were negative...and I haven't had another one..I'm hoping it was a one time thing.

Will our rank carry over the next month?

Best of Luck...sending prayers and positive thoughts your way

Great Job!!!!

The last couple of days, when I used the search option...some of the groups came up on the search didn't have their voting button. Then when I went to view the current leaders, I kept loading more, and it stopped at # 100...so are the groups that didn't make it into the top 100 now out of the race?

I agree with peg...I just think if you are in a good spot, then possibly trying a probiotic with a strep strain to see how your child does is probably okay...my daughter drinks lifeway keifer a lot, it has some strep strains...and she doesn't seem to react to it at all...however, if I am actually purchasing a probiotic, then I avoid the ones with strep.

This article gives a general explaination about the amox failure: http://www.entrepreneur.com/tradejournals/.../169459644.html It is commonly posted on this forum...if you haven't read it yet, take a few minutes...it is important because I think most pediatricians go to amoxicillin as their first choice of antibiotic when a child gets strep. Strep hit my house again in Feburary this year, and my other 3 kids were treated w/cephalasporins...one round did clear them. My PANDAS daughter kept testing negative despite having a ramp up in symptoms...she lost a few pounds because she kept thinking the food was getting stuck, was having difficulty making decisions, being emotional, lots of baby talk...we saw these behaviors at home...school continued to say she was fine. She was taking 200mg of pen vk twice a day as a prophylaxis...when her symptoms were a slight blip (my husband and I just kept giving each other side-ways glances, and after the kids were in bed would talk circles about her behavior trying to really see if it was coming back..we just weren't sure), her pediatrician had said that the penicillian was working because she kept testing negative....One week later, it was obvious that PANDAS was back, and a different ped put her on 150mg of Omnicef twice a day for ten days... We saw Dr. L, and she prescribed another month of pred...and we tried amoxicillian again for a week...we were losing the gains we had made on the Omnicef, and she had some minor rashes...so Dr. L put her back on the Omnicef. The pred definitely helped again....she is essentially 99.9%...still taking the omnicef, and 1/2 tsp of omegabrite most days.

Give her Motrin for a few days and see if there is a difference...that could be a good indicator... Try to increase her Omega 3s for anti-inflammatory properties You have had good results with prednisone with your son, are you willing to try with your daughter? Although, I think (me personally) if I were to agree to that for a "possible" PANDAS case, then I would want my child to also be on full-strength antibiotics.

My daughter's strep was being treated prior to her behavior shift. However, I think it was not treated properly. She was only given 5 days of omnincef--it is approved for 5 days, but for strep it is recommended to give for 10...then when she was back a few days after stopping the antibiotic, she was prescribed amoxicillin--a weaker antibiotic that cannot reach intracellular strep. Anywway, the ped's office did finally get it right, and a month long course of prednisone brought her back to 98%....3 months later she was 100%... I don't think there is anything in the diagnostic critera that says it must be UNTREATED strep...It is an increase of symptoms associated with strep. This would be an interesting poll-- I'm wondering how many people had PANDAS symptoms before learning about the strep connection and how many had strep infection that was being treated, and then had PANDAS symptoms surface. And for each group...how severe or sudden was the PANDAS exercerbation? For us it was more of a realization over a few weeks that came to a head when her teacher approached us about her change...so I don't have a specific date like many parents do...just a time frame of a few weeks that we realized we didn't have the same daughter. I would say she was bad...OCD shut her down, I was forcing her to eat....etc...etc... However, like you I think we are somewhat lucky...It doesn't seem like we went through as much trauma a many of the families on this forum do... As far as the psych meds are concerned, they do work for some kids with PANDAS...parents just need to be really careful. Certainly, though if you son is in an exercerbation and the medication is not making things worse...now is probably not the time to try to get him off of them. It is hard to accept the medications sometimes, but try to think of it as tool or bridge that is needed for now...especially if you think it is helping! ~Karen

Thank you...It really is an AWESOME article...great Job!

I think I might know what is going on...I just installed the "app" onto my facebook page, and it allowed me to vote again without leaving facebook, or having to go through the "sign on process" at the pepsi site...and there was not spot for comments...so these groups are probably primarily using facebook or the other social networking sites to place their votes....It is so much easier...Facebook users are used to just clicking to show they like something... The app shows up as a reqular post...not on the side as a widget...so I think you will need to install it onto your facebook page often...I left a message below telling people to vote!

Okay, I just read this thread 3 times....I am probably going cross-eyed, but I saw one mention of a time at 12pm for Philanthro...are there other times too? I was in process of placing my votes, and came back here to see the list of groups...but I'll wait for the rest until the right times but what are they and is it with a specific group?

It was recorded last week, but the show airs today..I am hoping that more people will hit the sight...Today is also his birthday, and 1500 people have left him a birthday message...they will be going to the website to look for their message....Here's hoping!!! In the original post, they have two links. the first is the direct link to vote, and the second one is a link to the facebook page. Later they added the widget under "PARTNERS AND AFFILIATES" That will be prominent. The actual post has already slid down the page from all their other postings...but when I go to these types of sites, I keep scrolling down and reading the news until I hit a post that I have already seen....I am hoping that is what other's do!