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Media---Would you go there?


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Question for all------ My wife and dd's have been dealing with Pandas for a year--- 13 months or so in NW Ohio. Just got diagnosed for both dd's Been very upset with the whole thing. Found out in Sept 2011 when school started (9months later) that a girl in my dd7's class had strep and bad reaction too last Dec at same time as my dd. Funny thing is we had the same ped. Anyway, in light of all this and the Leroy case----------------------WOULD YOU GO TO THE MEDIA?????? Would like to hear from those of you that have already. Positives or Negatives------ Or those of you that have considered it-----why or why not. Feel compelled to do it but not sure I want the attention

 

Right now NW OH has no representation----YET????

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I have been thinking about this also. Personally, I am leaning toward waiting until we see what happens with the Leroy case(s). If it does turn out to be PANS, I suggest a concerted, unified effort on the part of PANS parents to come forward in every city... and maybe even have a "meeting" in Leroy, NY...

 

If it turns out that this is not PANS (It really could be a pure environmental issue or something we are not even thinking of).... then it would probably be better to not have made made a big deal out of this.

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Honestly, were it not for my DS, I would be shouting this stuff to the rooftops, especially as, in my area, the most highly-regarded pediatric immunologist who heads the premier children's hospital is almost as virulent a PANDAS naysayer as Kurlin or Singer! I'd like nothing better than to turn the media on to his prefunctory, dismissive, condescending responses to parents who are directed to him when their children sprout classic PANDAS behaviors overnight!

 

BUT . . . and it's a big one . . . DS is on a healing path, and he's old enough that he doesn't want to be "singled out" and/or made an example of in front of his peers. On top of which, HE'S of a very empirical, scientific bent himself, so, even for him, he claims that the "jury is still out." This from a kid who begged to have his antibiotics back when he hit a minor bump at viral exposure, and who drinks up every new piece of research I'm able to provide him on the topic. But then again, he's almost 15 and he wants his independence in every way, including intellectually, so he's not going to "adopt" his mom's perspective anymore just 'cause she says it's so. <_<

 

So, he doesn't want to be spotlighted in the media (he wouldn't even agree to be the subject of a student documentary posed by a friend), and I have to respect his feelings/thoughts on that topic. So I stay a little bit behind the scenes. I send off my fair share of letters, support research and education efforts, and relentlessly pepper all of our caregivers with research papers, etc., but I've yet to call out the hounds.

 

How would your DD's feel about being "in the spotlight"? Would they mind? I think that would be my primary consideration.

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My 12 year old has been watching all the news etc., and she emailed Dr. Drew herself via his website last night.

Her symptoms were strikingly similar to those girls on TV, and she also initially rec'd a conversion disorder diagnosis, which we didn't believe for a second. She had an extensive history of strep and also tested positive for mono (EBV), and missed literally most of 5th and 6th grade.

 

She wants to go up there herself, saying "No one should ever have to go through that." She loves Dr. T and is sure he will be able to help those kids. I am actually from upstate NY and was planning on going up there soon to visit my mom, but honestly, I'm afraid to bring her near that whole situation as it took so long to get her better. I believe they will discover that it is related to a highly virulent strain of strep and possibly myco, and I'm terrified that being exposed to that might start if all over again, and I just don't think I could handle it.

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We participated in a news story back in May of 2010 here in the Dallas area. Our daughter was 9 at the time and she and I discussed it before agreeing to filming. It aired in Dallas and in affiliate stations in Houston, San Antonio, and Austin. The positive are:

 


  •  
  • Support groups were formed due to the story thanks to the recommendation of a local mom
  • Awareness was raised in our area and around the world (I received forwarded e-mails from the news station from as far away as Australia)
  • Our daughter and I felt like we were turning our negative situation into something positive by making a difference
  • It is still being viewed as a dad in our area found it and posted it to YouTube in December. I discovered it was there in January and since he posted it, the video has been viewed 489 times so I'm hoping it's still making a difference.
     
    (
    )

 

The negatives are:

 


  •  
  • Reading the comments posted on the web sites after the story aired. I had to be thick skinned as there were several that were just mean spirited.
  • The news station insisted that they had to use our pediatrician for the story and he only diagnoses PANDAS and does not treat. We wanted them to use our ENT who treats, but they wanted a pediatrician. To get the word out and raise awareness, I agreed.

 

However, the positives far outweighed the negatives. Our daughter, now 11, is still happy that we did the story. Her class watched it and everyone was proud of her for speaking out.

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I am actually from upstate NY and was planning on going up there soon to visit my mom, but honestly, I'm afraid to bring her near that whole situation as it took so long to get her better. I believe they will discover that it is related to a highly virulent strain of strep and possibly myco, and I'm terrified that being exposed to that might start if all over again, and I just don't think I could handle it.

 

Oh MY! I hadn't even thought of that! I suspect the offending infection happened a while ago, but it is certainly something to consider! Good thinking!

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We chose to go to our local media once our daughter was pretty well into remission. My daughter wanted to do it, after seeing some stories of other children. She was starting o talk often about her PANDAS & I thought the timing was right. The only thing I would warn is to ask the reporter to see the edited version before it airs. Our 4 hour of video, over 2 sessions was edited so much, it was disjointed and needed correction.

 

I would love to have a PANDAS parent meeting in Leroy...it would be great to have one here in the northeast!

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