KaraM

Wahoo!!

Congratulations! I tuly hope everything continues to improve. Thank you for sharing Your story inspires hope. Kara

I can't believe I'm going to say this (don't tell my husband), but I would be willing to split the job with one or two (or 3 or 4) other people... If we really think we can hit $50k by getting everyone to pitch in, I would also be willing to donate instead (I'll even up it to $100 to avoid having to do this next month!!). Maybe I have the courage to make these offers because I am pretty confident we can stay in the top 10 this month! Go Team!!!!!

Congratulations to you both. And thank you for sharing. Kara

Our ped was skeptical that my daughter had PANDAS. When I told him I was having her participate in the study he said he would be interested in seeing the results. So, when I got them (Cam Kinase 189), I left them along with the article and Buster's FAQ with him to review (Buster - I don't think I can ever thank you enough for putting that together). He found it all very interesting and was then willing to prescribe Zithromax prophylactially. But he admitted he did not know a lot about PANDAS and recommended we see a specialist. Since then, I've kept him posted via emails about my duaghter's progress and our visit with Dr. B., with the hope that he will become better educated and better able to help the next child that comes along...

How about something regarding "sudden onset" For some, symptoms appear very quickly or overnight. For us, however, it was more gradual. At a minimum, it was over the course of a few months before it became clear something was "really wrong". If I really look back and analyze a few events/symptoms, it could have been over the course of a couple of years. When I asked this of Dr. B., he said that not all children will present the same way, since hey all have different a genetic make-up. Kara

My deepest thanks go to you all as well. Kara

That would be my 14 year old niece. I just asked her the other day to try to get her friends to help. I just got this message from her: Hi Kara, It's M. So I got the pepsi/pandas link and posted a few times on my wall on facebook, i've asked my friends to vote, and pandas moved up to 6th place!! I got really excited. I hope the voting and moving up continues. I thought this was pretty cute. And I'm so glad she feels like she's making a difference!

Still there at 5:45 a.m!

The small moments can feel like huge victories. I hope you have many more and increasingly frequent moments. We saw doctor B for the first time today and he said something that I will always try to remember when I read these posts and responses. He actually thinks PANDAS has a lot to do with genes. Every one of us has a different genetic makeup and will therefore respond differently to treatments- otherwise, treatment would be like writing a computer program. Try to look at improvement over time. Are you keeping some sort of chart/graph of symptoms? Kara

My daughter also has trouble eating at school and when she comes home hungry (or whenever she hasn't eaten well) she also rages. For her, she ends up avoiding eating at school because she thinks somehow the food got contaminated. For example, she has a fear of hospitals and anyone or anything that has been in one. A boy in the school just broke his femur bone and is now in a wheelchair. He went past her in the hall while she was carrying her lunch. Knowing he was recently at the hospital, she would not eat anything from her lunchbag... Thankfully, since she has been on the abx, she is able to get over the fear and the raging much more quickly than in the past. Kara

Hi, I just noticed for the first time a comment on the www.refresheverything.com page. On the right hand side it said "about the Project" and said I did not have the latest version of Flash Player or I did not have Java Script turned on (or something to that effect). So I downloaded the lasest version of Flash Player. That seemed to help improvement, too. This is the first time I've ever noticed that comment there. Is it new? After I installed it, the comment disappeared. Kara

Now that was awesome! Thanks!!!!

I agree, too. Take the high road. Follow the rules.

I just called to complain as well. She said it had to be my computer's settings and the settings of all the other people having trouble. I asked if they had any recommended "settings" but she said no. Just have the lastest version of whatever browser. I also asked if she had gotten complaints from any others, she said no. Kara

Is there a way to appeal to Pepsi agin to clear out the comments on our page? That's part of the reason we need to proxy - the site is so !@#$%^&*()_ slow! It even jams some of my friends' computers. No one with anything else to do in their lives can wait for it to come up. I had several people willing to vote every day initially, but gave up or asked me to take over. I know there are other ways to vote - but this page explains what PANDAS and our cause is all about - so people should see it at least once. Pepsi needs to step up to the plate here.

Maybe they are referring to situations like ours. We have one computer that both my husband and I use...different people, different emails... Dawn So what does this mean? Further down in the FAQ it says its okay to cast multiple votes from the same IP address. Is this going to be a problem?

Hi, I am not an expert in this area by any stretch. But one thing I would ask is whether the dose is high enough. How much does your child weigh? Every child is different, but I know it can be helpful to hear other peeople's experiences. My daughter is 8 and weights 60 lbs. She started off with a "treatment dose" of Zithromax (300 mg) for 5 days (at the end of March). After 5 days, she started the prophylactic dose (150 mg). She started showing gradual improvement after a few days. However, she had also been on Omnicef for 14 days about 5 - 6 weeks before that. When she was on the Omnicef, we didn't start seeing improvement until day 11. (BTW - She was very high in Cam Kinase range, but normal range for all other Cunningham tests). I've heard is that many children do not show improvement until 10 - 12 days. Have you read the FAQ on this site or on www.pandasresourcenetwork.org ? I copied this from there: Q: How long after starting antibiotics should I expect a response? A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics. If you haven't read that document, it is really helpful. Don't lose hope. Kara

Do we need to post comments?

We tested and shipped on a Monday, they received Tuesday and we got an informal email with the Cam Kinase II results the following Friday - so a little less than two work weeks. The other results came a few weeks later. Kara

I currenlty have 21 proxy votes - but didn't start doing the proxies until about 10 days ago. So hopefully I can start off June with those and, hopefully, more. I know several people that said they would vote, but am guessing a lot of them gave up due to slowness of the site. I will offer to proxy for them again. Do people have to set up accounts again or will their May accounts work? (I hope the May info will work.) If you need me to help with proxy voting for people going out of town, just let me know. Kara

I've found a couple of things. First, if you type the address into your address bar instead of clicking on the link, it seems to go faster. Second, once the site is (finally) loaded on your computer, it is very quick to log in, vote and log out of different accounts. I just figured this out the other day, so I sent emails to all the people I asked to vote and told them I knew it was frustrating and to please just take the time to set up the account (if they hadn't already) and send me their password (or use one I designated), I would take care of the daily voting. I got several replies pretty quickly. So I am sure there are many that want to support, but just find it too frustrating. I am voting for 17 people right now. Hoping for more over the next couple of days. Kara

Don't know how you kept those tears of joy in in - their falling down my face right now. How wonderful. Thank you for sharing. Congratulations to you both! Kara

Thanks, Everyone. Hoping to bring her out today to get a well deserved new kite!! (Her old one got stuck in a tree last fall - right around the time of her OCD onset). I can't wait to see her and her kite flying free!