Mystery Diagnosis

[Pandas_chicago]

6 months or so back - Mystery Diagnosis was in contact with Diana and others and was interested in PANDAS , the producer wanted to give his information out along with a questionarie...they are interested in hearing about all different stories - and VERY

interested in this...If anyone wants to share the story and wants to do in on television - here you go! Now is the time, with appreciation to Lynn Johnson - this has given the opportunity to get coverage. Can we add attachments

7-10-2009

From: Lee Doyle <doyle@trueentertainment.net>

Subject: Re: PANDAS - sorry to have missed your message!

To: "Diana Pohlman" 7:51 AM

 

 

Hi Diana, thanks for your call and for helping us out with this story. I really do hope we can move forward with this story, and if that means getting actors to reenact these scenes, then I think we'll be inclined to oblige. Please see attached our questionnaire which we would have any interested families fill out.

 

Thanks and I look forward to hearing from you!

 

Lee Doyle

[Pandas_chicago]

6 months or so back - Mystery Diagnosis was in contact with Diana and others and was interested in PANDAS , the producer wanted to give his information out along with a questionarie...they are interested in hearing about all different stories - and VERY

interested in this...If anyone wants to share the story and wants to do in on television - here you go! With Lynn Johnson recent news coverage - this has given the opportunity to move further with this and get more media coverage perhaps with different stories or symptoms. Can we add attachments

 

From: Lee Doyle <doyle@trueentertainment.net>

Subject: Re: PANDAS - sorry to have missed your message!

To: "Diana Pohlman" < 7:51 AM

 

 

Hi Diana, thanks for your call and for helping us out with this story. I really do hope we can move forward with this story, and if that means getting actors to reenact these scenes, then I think we'll be inclined to oblige. Please see attached our questionnaire which we would have any interested families fill out.

 

Thanks and I look forward to hearing from you!

 

Lee Doyle

 

Can anyone tell me how to add an attachment? - I will upload the questionaire -

[7upMom]

It would be really nice to see various pandas stories, since so many of these kids are different ( but oddly similar too) in respect to ocd or rages or tics

And how compromising this is on different families

[Fixit]

6 months or so back - Mystery Diagnosis was in contact with Diana and others and was interested in PANDAS , the producer wanted to give his information out along with a questionarie...they are interested in hearing about all different stories - and VERY

interested in this...If anyone wants to share the story and wants to do in on television - here you go! Now is the time, with appreciation to Lynn Johnson - this has given the opportunity to get coverage. Can we add attachments

7-10-2009

From: Lee Doyle <doyle@trueentertainment.net>

Subject: Re: PANDAS - sorry to have missed your message!

To: "Diana Pohlman" 7:51 AM

 

 

Hi Diana, thanks for your call and for helping us out with this story. I really do hope we can move forward with this story, and if that means getting actors to reenact these scenes, then I think we'll be inclined to oblige. Please see attached our questionnaire which we would have any interested families fill out.

 

Thanks and I look forward to hearing from you!

 

Lee Doyle

 

I would volunteer in a heart beat...but as per the show, everyone ends up fixed in the end....

If i could have done this prior to this onset i'd be a slam dunk

Still waiting on our new fix.... then you'll see my mug on the show!!!

[momto2pandas]

What about an adult? I don't particularly want to do this myself, but I still wonder if the BIGGEST group of undiagnosed PANDAS out there, in terms of sheer numbers, are adults who started as young kids and never grew out of it. They may not be as severe as the kids and are probably much harder to diagnose due to ubiquitous PANDAX, but I'd bet all my $ that there are millions of them out there. With all of the media attention just on kids, somehow the question "what happens when these kids grow up?" needs to be addressed, IMHO.

 

 

6 months or so back - Mystery Diagnosis was in contact with Diana and others and was interested in PANDAS , the producer wanted to give his information out along with a questionarie...they are interested in hearing about all different stories - and VERY

interested in this...If anyone wants to share the story and wants to do in on television - here you go! Now is the time, with appreciation to Lynn Johnson - this has given the opportunity to get coverage. Can we add attachments

7-10-2009

From: Lee Doyle <doyle@trueentertainment.net>

Subject: Re: PANDAS - sorry to have missed your message!

To: "Diana Pohlman" 7:51 AM

 

 

Hi Diana, thanks for your call and for helping us out with this story. I really do hope we can move forward with this story, and if that means getting actors to reenact these scenes, then I think we'll be inclined to oblige. Please see attached our questionnaire which we would have any interested families fill out.

 

Thanks and I look forward to hearing from you!

 

Lee Doyle

[Fixit]

What about an adult? I don't particularly want to do this myself, but I still wonder if the BIGGEST group of undiagnosed PANDAS out there, in terms of sheer numbers, are adults who started as young kids and never grew out of it. They may not be as severe as the kids and are probably much harder to diagnose due to ubiquitous PANDAX, but I'd bet all my $ that there are millions of them out there. With all of the media attention just on kids, somehow the question "what happens when these kids grow up?" needs to be addressed, IMHO.

 

 

6 months or so back - Mystery Diagnosis was in contact with Diana and others and was interested in PANDAS , the producer wanted to give his information out along with a questionarie...they are interested in hearing about all different stories - and VERY

interested in this...If anyone wants to share the story and wants to do in on television - here you go! Now is the time, with appreciation to Lynn Johnson - this has given the opportunity to get coverage. Can we add attachments

7-10-2009

From: Lee Doyle <doyle@trueentertainment.net>

Subject: Re: PANDAS - sorry to have missed your message!

To: "Diana Pohlman" 7:51 AM

 

 

Hi Diana, thanks for your call and for helping us out with this story. I really do hope we can move forward with this story, and if that means getting actors to reenact these scenes, then I think we'll be inclined to oblige. Please see attached our questionnaire which we would have any interested families fill out.

 

Thanks and I look forward to hearing from you!

 

Lee Doyle

 

well that's the thing....

i always thought that when my hubby was on abx his tics seemed better...though they don't get worse when sick...

and of course abx are only 10-14 days...nothing higher dose or longer term

so does your brain lock in a certain amount of this that if you have it after x age it just there....

as adults i'd almost bet...you'd need to do ivig...jmho

[mama2alex]

Thanks for posting this! I will forward this to a mom who no longer reads this forum very often - because her child is WELL!

 

It would be great to keep the media coverage ball rolling. Every time PANDAS is covered on tv, more families discover that this is what they are dealing with.

 

 

What about an adult? I don't particularly want to do this myself, but I still wonder if the BIGGEST group of undiagnosed PANDAS out there, in terms of sheer numbers, are adults who started as young kids and never grew out of it. They may not be as severe as the kids and are probably much harder to diagnose due to ubiquitous PANDAX, but I'd bet all my $ that there are millions of them out there. With all of the media attention just on kids, somehow the question "what happens when these kids grow up?" needs to be addressed, IMHO.

 

 

6 months or so back - Mystery Diagnosis was in contact with Diana and others and was interested in PANDAS , the producer wanted to give his information out along with a questionarie...they are interested in hearing about all different stories - and VERY

interested in this...If anyone wants to share the story and wants to do in on television - here you go! Now is the time, with appreciation to Lynn Johnson - this has given the opportunity to get coverage. Can we add attachments

7-10-2009

From: Lee Doyle <doyle@trueentertainment.net>

Subject: Re: PANDAS - sorry to have missed your message!

To: "Diana Pohlman" 7:51 AM

 

 

Hi Diana, thanks for your call and for helping us out with this story. I really do hope we can move forward with this story, and if that means getting actors to reenact these scenes, then I think we'll be inclined to oblige. Please see attached our questionnaire which we would have any interested families fill out.

 

Thanks and I look forward to hearing from you!

 

Lee Doyle

 

well that's the thing....

i always thought that when my hubby was on abx his tics seemed better...though they don't get worse when sick...

and of course abx are only 10-14 days...nothing higher dose or longer term

so does your brain lock in a certain amount of this that if you have it after x age it just there....

as adults i'd almost bet...you'd need to do ivig...jmho

[thereishope]

I never watched the show. Would it have to be a story that the child went undiagnosed for while? My son has recovered 100% from 3 strep triggered exacerbations and has had viral and allergy triggers.However....he is an antibiotic, steroid (with one episode), and lots time and waiting. Would you guys even want that represented or do want more IVIG and PEX? He did experience a lot of different PANDAS symptoms, but no tics.

[Worried_Dad]

Good news for the PANDAS cause - Beth Maloney just sent out an e-mail update letting people know that Discovery Channel has finished filming an episode of "Mystery Diagnosis" about Sammy's case! She says it will air sometime this summer. This is good for all of us with PANDAS children. Every one of these public media exposures makes it harder for docs to dismiss our children out of hand!

 

Here's an excerpt from Beth's e-mail message.

 

I am psyched to tell you that Mystery Diagnosis was here last week shooting our story. Sammy was home for spring break, and we timed it so he'd be here to participate in interviews. Dr. Nicolaides graciously joined us for two days.

 

It was a great production with an A+ crew and an A+ group of the most talented people on the earth (my friends!) working hard to help accurately recreate our lives. The whole experience was positive, and the 12-14 hour work days flew by. Special thanks to Southern Maine Medical Center for letting us take over a number of physicians' offices with lights, camera, and action. Our local middle school as well as the Kennebunkport Conservation Trust also generously let us shoot on their grounds.

 

The episode will air over the summer on the Discovery Channel, and I will let you know the date. One of the moms on this email list suggested us for the episode. When it airs and helps tons of children she will be a key piece in that equation.

[MomWithOCDSon]

Good news for the PANDAS cause - Beth Maloney just sent out an e-mail update letting people know that Discovery Channel has finished filming an episode of "Mystery Diagnosis" about Sammy's case! She says it will air sometime this summer. This is good for all of us with PANDAS children. Every one of these public media exposures makes it harder for docs to dismiss our children out of hand!

 

Here's an excerpt from Beth's e-mail message.

 

I am psyched to tell you that Mystery Diagnosis was here last week shooting our story. Sammy was home for spring break, and we timed it so he'd be here to participate in interviews. Dr. Nicolaides graciously joined us for two days.

 

It was a great production with an A+ crew and an A+ group of the most talented people on the earth (my friends!) working hard to help accurately recreate our lives. The whole experience was positive, and the 12-14 hour work days flew by. Special thanks to Southern Maine Medical Center for letting us take over a number of physicians' offices with lights, camera, and action. Our local middle school as well as the Kennebunkport Conservation Trust also generously let us shoot on their grounds.

 

The episode will air over the summer on the Discovery Channel, and I will let you know the date. One of the moms on this email list suggested us for the episode. When it airs and helps tons of children she will be a key piece in that equation.

Thanks, Dad!

 

When you get a date and time notification, can you share it with us? I seem to be on one of Beth's email lists, but I didn't get this info from her, so I missing on some info pieces. Would hate to miss that show! Thanks again!

[alderliefest]

It would be really nice to see various pandas stories, since so many of these kids are different ( but oddly similar too) in respect to ocd or rages or tics

And how compromising this is on different families

 

 

I would do this in a heartbeat as well!