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From the fan page...

 

Saving Sammy: Curing the Boy Who Caught OCD I am very pleased and proud to announce the establishment of the PANDAS

Foundation. The Foundation will shortly be launching its first

campaign: Got Strep? There will be an opportunity for all to join in

and help. The Foundation's goals are: Adv...ocacy, Support, Research and

Education. Website development is presently underway at

http://www.pandasfoundation.org and I have agreed to serve as its

national spokeswoman. The facebook page denotes Massachusetts General

as the current recipient of donations while the Foundation's final

steps are completed for receipt of tax-deductible donations.

 

 

Are any of you part of this foundation? I have contacted them for more info with a bunch of questions. I will update if I get a response.

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Great! Really despite some things that we might be feeling regarding some of how she has gone about things she is getting done what really should have been done already.... if she's able to use her new fame to get things done....... hopefully it is not biased and the right people are brought in on the making of it then it can hopefully become a great resource.

 

 

From the fan page...

 

Saving Sammy: Curing the Boy Who Caught OCD I am very pleased and proud to announce the establishment of the PANDAS

Foundation. The Foundation will shortly be launching its first

campaign: Got Strep? There will be an opportunity for all to join in

and help. The Foundation's goals are: Adv...ocacy, Support, Research and

Education. Website development is presently underway at

http://www.pandasfoundation.org and I have agreed to serve as its

national spokeswoman. The facebook page denotes Massachusetts General

as the current recipient of donations while the Foundation's final

steps are completed for receipt of tax-deductible donations.

 

 

Are any of you part of this foundation? I have contacted them for more info with a bunch of questions. I will update if I get a response.

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I haven't joined the cause yet. I asked things like what Mass General will do with the donations they get from the cause, where they are getting any PANDAS info from, I gave them the pandas network website for info and want to see what their reaction is. I'm curious if anyone on this forum helped develop it.

 

I don't like the tag "Got Strep?" What do you think of it? First, many parents don't know their children have strep in the first place. Also, the "Got Milk" campaign is cutesy. PANDAS is not cutesy. I have to think on that more.

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I haven't joined the cause yet. I asked things like what Mass General will do with the donations they get from the cause, where they are getting any PANDAS info from, I gave them the pandas network website for info and want to see what their reaction is. I'm curious if anyone on this forum helped develop it.

 

I don't like the tag "Got Strep?" What do you think of it? First, many parents don't know their children have strep in the first place. Also, the "Got Milk" campaign is cutesy. PANDAS is not cutesy. I have to think on that more.

 

I don't know what I think about the "Got Strep" logo either. I mean it is catchy and quick and will catch people's attention but yes like your children, my pandas ds has never had any typical signs of strep, never a sore throat. I don't know what to make of it. You had good questions. I look forward to hearing their answers.

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my weird feeling is that everyone will be scared that "strep' in and of itself is the force to be reckoned with. Is it? kind of like mass hysteria over strep, with parents thinking it will 'cause' their kid to have ocd. I think it should be more like "Got OCD", and then some info re strep and etc. etc. Ahhh, who knows.

 

 

Faith

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Faith, the only problem with that is that not all PANDAS kids present with obvious OCD.

 

I really do agree, it is slogan that is too overused... if it gets the point across though...

 

I know, you don't want people freaked by strep either. I think it's more like if you are presented with a child that is having issues but you can't figure out what is wrong... this just needs to be on the list of things to rule out as a possible cause.

 

 

 

my weird feeling is that everyone will be scared that "strep' in and of itself is the force to be reckoned with. Is it? kind of like mass hysteria over strep, with parents thinking it will 'cause' their kid to have ocd. I think it should be more like "Got OCD", and then some info re strep and etc. etc. Ahhh, who knows.

 

 

Faith

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This is a wonderful thing.... I am going to keep thinking of suggestions for a logo, catch phrase.

 

It needs to be worded somehow with info regarding the sudden onset or rapid onset of OCD, or anxiety or tourettes syndrome, tics.

 

Do we agree that all kids with PANDAS had a rapid onset of one, some or all of these issues when their child got sick, whether they had a sore throat or not. This is tougher than I thought, to generalize information on this. What makes this disorder or disease or whatever we are going to call it different is that it does not follow a typical pattern of presentation and in many cases there is no family history of OCD or tics involved so the genetic factor is different in many cases, not all, but many, right?

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I don't usually post because we are new to the whole PANDAS life. But I hope that everyone will keep an eye on this foundation and web site. I know that Saving Sammy believes that ASO is a "test". I would hate for that myth to be spread even more than it already is. We have gone down the PANDAS path two times and been told we were not dealing with this. We still don't KNOW if we are but we finally followed our own gut and went to see Dr. Latimer. She believes he is a PANDAS case even though his ASO was low.

 

FYI... I know the Saving Sammy recovery was many years ago. Dr. L told me that she also believed low titers would rule out PANDAS when she first started dealing with this. So that could very well be what they were told at the time and they were lucky enough to have the high titers. But obviously, research has changed. And we need to make sure parents know the current facts.

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Do we agree that all kids with PANDAS had a rapid onset of one, some or all of these issues when their child got sick, whether they had a sore throat or not. This is tougher than I thought, to generalize information on this. What makes this disorder or disease or whatever we are going to call it different is that it does not follow a typical pattern of presentation and in many cases there is no family history of OCD or tics involved so the genetic factor is different in many cases, not all, but many, right?

 

My girls did not have rapid onset until they got vag. strep at the beginning of this year. Otherwise, they have waxed and waned their whole lives with strange behavior but since it started so young, you could not tell that it was sudden since they were changing so quickly with early development.

 

It will be interesting to see how the doctors who have been dealing with this for years and have learned so much, who we all are now learning from become involved. Hopefully the new media coverage will just bring it all into the forefront and help us all. Fingers crossed, fingers crossed....

 

s

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I hate to sound negative but my guess is that there isn't much point of brainstorming a better logo. I have a feeling they have it pretty planned out. I hope that didn't sound how it might have.

 

Well.. sudden onset is too hard for me to say because my ds had isolated signs of it that until we put them all together would not have screamed pandas. The timing of when I put it all together though, the symptom that was my AHA moment... was 2 days after my non pandas child was diagnosed with strep.

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Suzan,

how was the vaginal strep categorized, as strep A or strep B? just wondering. Suzan, do you recall if you had strep B while pregnant wtih them?

 

Faith

 

 

Faith, I was wondering the same thing. I was streb b positive when I had my pandas ds BUT I was on the antibiotics for it prior to delivery AND my ds ended up being a c-section. I was on a lot of antibiotics during delivery... for strep b and for a mitrovalve prolapse... He was practically born with thrush in his mouth. I wonder if all the antibiotics caused him trouble?

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Suzan,

how was the vaginal strep categorized, as strep A or strep B? just wondering. Suzan, do you recall if you had strep B while pregnant wtih them?

 

Faith

 

They both were getting strep A. My theory is that they had it somewhere in their body and that's just where it was coming out but really I don't know and I didn't even know you could get it there!!

 

I don't think I had strep during pregnancies, but they were both premature and I may not have been tested. I'll have to go back and find out. I was just diagnosed with strep B though, in July I think and my doc treated me for it but did not test to see if it went away.

 

Susan

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