thereishope

Welcome. many have given you advcie already, but I will also give some useful thread for you to read through... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 How long does the dr plan on keep him on steroids? Make sure he tapers him off of them when the time comes. How long was he on the Zith before you switched? In your opinion, was the Zith better or achieveing the same results as the new antibiotic? Also, make sure you are giving him probiotics.

Here is list of doctors that parents have compiled. Now they are not all PANDAS specialists,but have helped someone. Doctors by State http://www.latitudes.org/forums/index.php?showtopic=6428 These are the docs, the parents on here consider specialiats Dr B - Dr Bouboulis Dr K - Dr. Kovacevic Dr L - Dr Latimer Dr T - Dr Triffileti

Great. A glitch. I voted no problem. I think earlier on some had that same problem, even saying their account wasn't there. Did you get an email or anything in which you had to click a link to "verify" the new password? Try again in a bit and if you still can't let us know and we'll contact Pepsi if you cannot.

I can't find it either! Synergy is on our FB page. I'll try to find out from them on there so others don't migrate to them

Welcome. May I ask what Tourette website sent you to PANDAS Network? You say your possible PANDAS son never had strep? Do you know that based on negative strep tests and/or blood tests or that he never complained about a sore throat? You can ghave strep w/o a sore throat or fever. Also, sinus infections can be caused by strep. For starters, if he has not had a strep test, get one. You mention respiratory infection...can you elaborate? Does the words "walking pneumonia" or mycoplasma ring a bell? One more thing I would like to ask is if Ibuprofen eases his tics? Here are some threads about PANDAS that people find useful. Maybe they will answer some questions and lead you to new ones. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Signs of OCD in a young child http://www.latitudes.org/forums/index.php?...ic=6153&hl= I gave the last one because often people don't realize that their child has OCD tendencies.

T gondii has a PITAND connection to bipolar and schizophrenia so I can see it causing all the PANDAS symptoms too (OCD, tics, etc). Then he has Lyme too! Your son needs a break! Is the IEP complete?

Did you see this comment I think my husband said razzball was sending lots of votes to Synergy. It almost sounds like they are trying to make a tighter alliance. Maybe we should send some to Razzball and see how they reciprocate. I think we have enough people to "spread the wealth" of votes. As logn as we don't start to forget some people.

Bump. http://www.refresheverything.com/PANDAS

Pepsi has a section on it's website for promotion and strategies on there, but it freezes up my computer and it's a new computer! There was a spot on the pepsi site where I read about them interviewing past winners on how they won. That's how I learned about trading votes.

I had a feeling you were involved with that one:) Thank you for your support and kind words!

That just seems like an odd name of a ped's office. It sounds like a preschool.

Great news! I contacted The Children's Rare Disease Network asking if they will support our quest for $50K. Since PANDAS is catagorized as a rare disease, I see no reason to embrace that catagorization for certain purposes. This was their response.... So, next month, I will be posting their voting info so we can support them too. I'm assuming they are going for the $250K.

What we can do is start a new thread with names of our allies and supply URL links. The comment is at the bottom of their text. I just switched from dial up a month ago and I know how slow that website can be with that. What I would do is type my comment somewhere else like in an email or word document and just cut and paste it. I have to go volunteer at my son's school so if no one else gets around to it, I'll start that new thread with links later on today.

Don't let your kids stay overnight at her house. She'll feed them ice cream to try to prove you wrong. When I'm at family things, I just change the subject if they hint at strep or PANDAS or his "personality changes" or being "Monk". I just can't do it with them anymore.

Family giving you grief, huh? Been there. Now I learn to share on a need to know basis. Too many insults have come my way.

I contacted Autism One and have not gotten a response yet. If anyone blogs on there, can you post it? I posted it on Age of Autism's blurb about PANDAS presentations, but that's it. I tried to get votes from Generation Rescue on the pepsi page but they didn't seem interested and never reciprocated, so I stopped sending votes. Any other ideas? Again, if anyone is going to the May Conference, please print out cads to hand out in the event you have a conversation with someone and the opportunity arrises. The pics is available on photobucket or you can make your own. http://s905.photobucket.com/albums/ac251/P...omputercopy.jpg

Don't fret too much about that. Just concentrate on getting her better now. Is there a plan in place?

I'm sorry. It's hard to get a taste of what it could be like to then have it taken away again. May I ask what other antibiotics you have tried? Do you see improvement in PANDAS symptoms with the injections? It doesn't seem right that your son has to suffer because the doctor is on vacation. Usually, they will have someone fillling in for emergencies. Can your son take Ibuprofen?

Tell him thank you! What's WOW?

Okay... clean slate.... I like the idea of "assigning" people who to vote for if they want us to tell them. In the morning, even I get confused who should get our votes. As for approaching past winners, I don't think they will go for it. Just being honest. As for approaching $50K, my gut's saying abandon all thoughts of this. Please, everyone, DO NOT vote for anyone in the $50K catagory except for us! I'll try to think what other orgs we can contact. Hm. I feel like we're missing something here. I'll think on this whole things some more today.

I think I need to step away from computer, clear my mind, then read this again. I'm starting to get confused. I need an immunity idol!

I guess it's worth a shot. As long as we strongly explain we will vote for them next month IF we win this month. So, in other words, if you help us this month, we'll help you next month. If we do this, look on their page if there's another way to conatct them. So, this strategy isn't made public. And if one says no, we can try another. Everyone, remember,in the $50K catagory, only vote for us!

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Sending prayers your way!