thereishope

bumping this up for the night crowd. Once again we are flipping back and forth between 6 and 7.

So far, we're holding on at #6! This is awesome! I know I've said this before but I cannot say it enough...Thank you for being dedicated to voting every day! Every votes makes a difference!

How is your son now in terms of his last PANDAS exacerbation? My son had PANDAS surface in preschool at age 5. He was also in an Early Childhood program for speech services at the time and had/has an IEP for speech. He completed kindergarten last school year and will entering first grade. Currently, he is recovered and behaves well at school, I never once got any red flags from the teacher or school something was amiss at all this year. So....for us, we have an IEP in place for speech. In the health history section PANDAS is cited. Every year I plan on having a discussion with the new teacher briefing them on what PANDAS may be like if he should get sick again. Currently, he does not need any accomodations. If the time comes (God forbid) and he gets sick agian, I will have to see the severity and what the symptoms are and contact the school at that time about what we can do collectively to help him. Luckily, my school is nice and I think they will work with us to guide him back to recovery. He goes to a public school. There are about 24 kids to a classroom.

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Try to think if there's anywhere else you can post the link to vote. If you posted it on local mom groups in May it probably got buried already and you can repost it. Post it on fb groups and fan pages too Direct voting link http://www.refresheverything.com/PANDAS FACEBOOKERS: If you vote for a cause in the Chase contest that you may see on your wall, vote for it, then make sure you tell them you voted and ask them to vote for our pepsi cause in return. I did this for NVIC.

That means it's a tight race between ranks. I believe we are strong night voters so let's keep optimistic. Also, just try to think if there's anywhere else you can post the link to vote,. If you posted it on local mom groups in May it probably got buried already and you can repost it. Post it on fb groups and fan pages too

I hope everyone is okay with me bumping this up as a reminder

Did anyone say if there's a way to view it yet online?

Thank you to everyone for voting! Keep voting for our supporters too as listed in the June thread. Remember Ride 192 and Flagstaff last month and how it appeared they would be sitting pretty, then fell out of the top 10 but thankfully rebounded in the last days and hours to win. We still have 2 weeks left and everyone who is not in the top 10 sees it as 2 weeks of opportunity to knock us out. June thread (changes daily) http://www.latitudes.org/forums/index.php?showtopic=8449 Thank you!

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There are a few of PANDAS groups on fb. Search PANDAS+strep. It's the dots in the acronym that prevent them from popping up.On the fb groups, they didn't put dots.

Just bumping this. Please remember to vote evry day and vote for our supporters. Many other causes expressed through email how they want to help our kids and they are sincere. The higher we get in the ranks, the more other causes in 50K will push hard to knock us out. Let's show them how strong and determined PANDAS parents are! We can do this!!!!!!!

I now know I do not have the channel it will be on:( I say record it and preview it. Also, you don't know how you will react. If you start to cry or just can't watch it, you don't want to run the chance that the kids may feel guilty. Not that they are, but kids and their thinking really can go all over the place. Also, if Sammy was worse off than anyone's child, the child might become fearful that they will get sick again and be the way Sammy was.

We're #7!!!!!!!!!!!!!!!!!!!!!!!!!!

Welcome. Your child would not be the first one to have hallucinations. My son had them twice. Freaking out that bugs were all over him. Smacking himself, screaming. That is such a frightening thing to witness. You can try to give your daughter Ibuprofen. That may help with PANDAS symptoms. I'm thinking the amoxicillin did not kill the strep. You need to to take her back for another strep test and get her on a different antibiotic like Augmentin or Zithromax. All family members need to get tested too, even if they have no symptoms. You can also give her Omega 3's and a probiotic.

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Have the Twilight Zone music cued up.... My code to sign in was................ bacterial tics Seriously!

Updated 6/13/2010 No comments needed.Please continue to vote and promote. We need to continue to move the numbers of our supporters so they know we are voting for them and continue to vote for us as well. Thank you to everyone! LATITUDES morning and afternoon 1.PANDAS 2.Sophias Cure 3.Jett 4.Lil Iguana 5.Skip 6.ride my bike for ms 7.ovarian 8. Woolly Pocket 9. chris scapini 10.st johns childcare www.refresheverything.com Paste into search box... PANDAS / JETT / "Sophia Cure" / "lil iguana" / "skip" / "nicole searfoss" / "sue dinapoli" / "ms mom" / "st johns childcare" / "chris scapini" LATITUDES evening through night 1.PANDAS 2.JETT 3.Sophias Cure 4.Lil Iguana 5.Skip 6. What I can do makes a difference 7. WMS 8. Bethany Berg 9. Sierra Academy 10. Healthy Habits www.refresheverything.com Paste into search box... PANDAS / JETT / "Sophia Cure" / "lil iguana" / "skip" / "quality assist" / "Bethany berg" / "sierra academy"/ "gavin thomas" / "chris scapini"

It's hard sometimes. My son, who is recovered and not in an exacerbation, is a commentator during tv shows when he is super excited about it. He does the exact same thing. But, for my son....it's just him:) Annoying at times, but just him. As for him seeing you, then stopping....he knows you prefer he doesn't do it or he's embarassed. With OCD, the first steps when I tried to overcome something, "the look" wouldn't stiop him. Not until he had it under control and it was a reminder. To "test" OCD, I'd probably challenge him. Pick a show you know he acts out or talks through and challenge him with a prize. Now, he still might need a reminder, but if it's not OCD, high anxiety shouldn't occur,just that sly look like "oop, I forgot".

I should add both my sons act out intro songs to cartoons. Words, actions, etc. For them, it's just part of watching the show and them really getting into it. After the show, they will sometimes reenact scenes, phrase, conversations. Again, it's just them liking it. Now if I tell them not to do it, it wouldn't cause anxiety and they would not freak out over not being able to do it. That's how it differs from OCD. If it was OCD, they would have extreme anxiety and they MUST do it. It would seem like life and death to a child.

What happens if you tell him he needs to sit still and he cannot copy it? Can he go to the movies?

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I think this is where I remember reading about antibiotics and being given once a day vs twice a day. TMom, I've never been that knowledgable about antibiotics, just basic info. So, I don't have an answer on that. Sorry. Once daily Kelfex will not prevent strep....its half life is too short (about an hour). By 4-5 hours the Kelfex will be totally cleared out of her system. To my knowledge, Azithromycin (half life is 68 hours) is the only oral antibiotic that can be given once daily to effectively prevent strep. IMO...once daily Keflex is just encouraging the strep to become resistant to that antibiotic. For us, Augmentin and a cephalosporin (stronger version of Kelfex) didn't work either, but Azith. did. But, I agree with the others that Clindamycin (possibly with rifampin) would be another good choice.

I believe it has been mentioned on here before that Augmentin is most effective when taken twice a day due to its half life.