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New Saving Sammy update


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I'll ditto the part of being strep b positive, altho had a c-section, so I do not know if they treated me with antibiotics being that we went for the c-section (deciding that morning because he was still breach).

 

I know we had a discussion on the other board about strep b a couple years back, and there were a number of us who had the strep b. who knows if it means anything, but interesting. I mean if strep A causes the antibodies, can't strep B too? is only strep A the trigger? I gotta know! Where can I get my kids butt checked, lol..........:mellow:

 

 

Faith

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Erica, I have wondered the same thing for my son. I had infected c-section and was on Augmentin while breastfeeding. Not long after, the stomach issues started for him and then the diaper rash (rectal strep maybe). We had no sudden onset because he was so young we probably missed some things. When he was two we noticed some things were "off" behaviorally. We have had two obvious exasperations though recently!

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fyi...I wasn't on any antibiotics during pregnancy, tested neg for strep during pregnancy w/ PANDAS son and my daughter. Baby #1 was a premie so I didn't get tested (well, unless they did that at the hospital and I didn't realize it). I did not take any antibiotics while breastfeeding.

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Oh I definitely don't think the antibiotics are the full cause of anything. Of course, who knows what the cause is at all!! I just don't know if in our case, the antibiotics set up an environment to let the strep take up in the gut (Which is where Dr. L believes it is in my son). I believe there are a million different stories out there of how we all got to this one place. And like I said, we were not sudden onset... so who knows when this even began for us??

 

Oh and I was strep negative and ended up c-section anyway.

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I mean if strep A causes the antibodies, can't strep B too? is only strep A the trigger?

Faith

 

I asked Dr. Cunningham and she said all strep was related so she thinks it could be a problem for the kids. I heard Dr. K. said it's only strep A. I know my dd's react to viral and bacterial infections now but I guess it was strep A way back when that got them.

 

Susan

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Dr. Cunningham also told me it could be both and difficult to eradicate strep B type illnesses. Strep A is easier to eradicate because its not as resistant to antibiotics.

 

http://www.dhpe.org/infect/strepb.html

 

 

 

I mean if strep A causes the antibodies, can't strep B too? is only strep A the trigger?

Faith

 

I asked Dr. Cunningham and she said all strep was related so she thinks it could be a problem for the kids. I heard Dr. K. said it's only strep A. I know my dd's react to viral and bacterial infections now but I guess it was strep A way back when that got them.

 

Susan

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Smartyjones, I am not sure. I think she thinks the gut because of his stomach issues from very young and then the diaper rash that she thinks might have been rectal strep??? Not sure. I just asked if the Augmentin would get the strep if it was in the gut and her response was "yes, that's where I think it is."

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I saw. I don't like the "motto" and I'm a bit skittish about how she is using her fame. I think she has good intentions, but putting out mis-information is going to be REALLY problematic and may be MORE detrimental to the PANDAS cause than where we even are now. :( I'm trying to hold off on judging her too harshly until I see where things go..... but my gut tells me this is going to be bad. I hope I'm wrong.

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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

Maybe after Dr. K and the other docs meet this January the notion that PANDAS is only rapid onset can start to be laid to rest. No rapid onset here. Nine years of waxing and waning and alphabet dxes and . Dr. K believes there are a subset of PANDAS kids that get it very early and the symptoms are not easily unrecognized and then mistaken for something else. I believe the actual diagnostic criteria from the manual says "rapid onset or waxing and waning of symptoms"--something like that. PANDAS is not just rapid onset.

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Yes...I wonder if any of the docs (Dr. K, Dr. Latimer) that actually know anything about PANDAS are going to be involved with this foundation at all. I'm also curious if anyone on this forum has received any type of PANDAS treatment at Mass General??

 

 

I agree with Pixiesdaddy on this one:

I think she has good intentions, but putting out mis-information is going to be REALLY problematic and may be MORE detrimental to the PANDAS cause than where we even are now. I'm trying to hold off on judging her too harshly until I see where things go..... but my gut tells me this is going to be bad. I hope I'm wrong.

 

BTW...did anyone notice that the person standing in the logo looks more like an older teen/adult than a child?...not exactly representative of the average PANDAS kid.

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Is it bad that I envisioned this happening....

 

A panda bear with it's mouth open wide saying "ahh" while the words "Got Strep?" is underneath it. God I hope I'm not psychic on this one.

 

Anyway, Got a response from the foundation. Here it is....

 

"Hi Vickie- Thank you for email. We are just getting started and appreciate all of the outreach we can get, and yes, I have been to the pandasnetwork.org and it is a terrific site, chock full of information!

 

The mission of the Pandas Foundation is fairly simply: Advocacy and Support; Research and Education. We very much want to get the word out to as many parents as possible that Strep could be the cause of their child's OCD. More to come on this front.

 

To answer your question about the research underway, it seems like the PandasNetwrok.org site would be a great resource for all of the latest current studies underway. Our immediate focus is to begin to make outreach to people and educate them on the warning signs of PANDAS. As of right now, very few pediatricians, specialists, school nurses, etc. even know about PANDAS, so we have a big task ahead of us.

 

Looking forward to your support and the support of other networks you may know about."

 

 

So, there's the response, but didn't really answer my questions. One question was why Mass General? Are they doing research there? Then I asked where they plan on getting their PANDAS info from. I asked where they plan on getting their info from because of their spokeswoman...Beth Maloney. if she won't let a representation of children with low titers appear on her page because that was not her experience, will she be willing to represent it via the foundation? Or will the foundation take her stance as well to back their spokesperson. I have an odd feeling, they asked Beth who she wanted to be the recipient of the donations. I have no proof of this. Just a feeling. I think someone like Dr Cunningham should be. I mean I still want to know why Mass General!

 

Personally, I'm waiting out joining this foundation until they are more established and their views are made more public.

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Madeline Cunningham came to my mind first...after all, she's got so much credibility with the development of the test. The tag line needs to be somthing that scares parents, like, "What You Don't Know About Strep Can Drive Your Child Crazy."

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Were Sammy's Dr's or any of the Dr's in her book out of Mass General?

I hope they will get the information and education out there to Dr's and parents. We just want it to be up to date information since Sammy was sick awhile ago and research has changed and more is known about PANDAS since his illness in 2001.

Is it bad that I envisioned this happening....

 

A panda bear with it's mouth open wide saying "ahh" while the words "Got Strep?" is underneath it. God I hope I'm not psychic on this one.

 

Anyway, Got a response from the foundation. Here it is....

 

"Hi Vickie- Thank you for email. We are just getting started and appreciate all of the outreach we can get, and yes, I have been to the pandasnetwork.org and it is a terrific site, chock full of information!

 

The mission of the Pandas Foundation is fairly simply: Advocacy and Support; Research and Education. We very much want to get the word out to as many parents as possible that Strep could be the cause of their child's OCD. More to come on this front.

 

To answer your question about the research underway, it seems like the PandasNetwrok.org site would be a great resource for all of the latest current studies underway. Our immediate focus is to begin to make outreach to people and educate them on the warning signs of PANDAS. As of right now, very few pediatricians, specialists, school nurses, etc. even know about PANDAS, so we have a big task ahead of us.

 

Looking forward to your support and the support of other networks you may know about."

 

 

So, there's the response, but didn't really answer my questions. One question was why Mass General? Are they doing research there? Then I asked where they plan on getting their PANDAS info from. I asked where they plan on getting their info from because of their spokeswoman...Beth Maloney. if she won't let a representation of children with low titers appear on her page because that was not her experience, will she be willing to represent it via the foundation? Or will the foundation take her stance as well to back their spokesperson. I have an odd feeling, they asked Beth who she wanted to be the recipient of the donations. I have no proof of this. Just a feeling. I think someone like Dr Cunningham should be. I mean I still want to know why Mass General!

 

Personally, I'm waiting out joining this foundation until they are more established and their views are made more public.

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