Is anybody watching 20/20?

[laurenjohnsonsmom]

T.MOM

 

Ten days ago Dr. Bouboulis and I met with a producer for Dateline and the executive producer for the "umbrella" Production Company that does stories for all smaller cable channels such as a&e, discovery, discovery health, etc.. We signed an exclusive agreement for them to do a documentary (doesn't legally bind them to do it but gives them first right to do one, for the next 12 weeks). We have spent a total of 6 hours (between Dr. B & myself) talking to the people who reasearch and present this story to the "higher-ups that be" and were told that it looks VERY promising that this documentary will happen but do not have a final decision, yet.

 

Please say a prayer. This will be good exposure (more than a 6 minute piece about just one PANDAS case ie: my daughter; but a broder look at the disease). If any parents want to send an email to me with a plea to why this needs to be done I will be happy to forward them to the producer as a group. (as I obviously cannot disclose her email). You can email me through the PANDAS RESOURCE NETWPRK website info@pandasresourcenetwork.com or laurensneezing@gmail.com

 

Lynn

 

 

 

WE NEED TO GET PANDAS on 20/20 .

[Pandas_chicago]

One of the Executive Producers was in contact with Several of the parents who have been dealing with PANDAS for many years ...The contact information was shared- to many of the parents that wanted to send their personal information or case to the producers .At the time many of the parents discussed this and wanted to make sure that we had the right format - with a panel of doctors...this was a personal view at the time. This producer wanted Diana to share the contact information as he wanted to do the story and learn more from the parents ! Anyone who wants to go after this should! Since this is taking off -

 

See below on 7 -9 -2010 Diana shared all:

Hi folks,

 

But here goes: Below is an email from a representative of the t.v. show, Mystery Diagnosis. He sent an attachment for us to review.

 

So here it is - I Thought it was fair that I share the interest from the media with you. diana

 

 

 

--- On Fri, 7/10/09, Lee Doyle <doyle@trueentertainment.net> wrote:

 

 

From: Lee Doyle <doyle@trueentertainment.net>

To: "Diana Pohlman"

Date: Friday, July 10, 2009, 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

 

 

 

 

T.MOM

 

Ten days ago Dr. Bouboulis and I met with a producer for Dateline and the executive producer for the "umbrella" Production Company that does stories for all smaller cable channels such as a&e, discovery, discovery health, etc.. We signed an exclusive agreement for them to do a documentary (doesn't legally bind them to do it but gives them first right to do one, for the next 12 weeks). We have spent a total of 6 hours (between Dr. B & myself) talking to the people who reasearch and present this story to the "higher-ups that be" and were told that it looks VERY promising that this documentary will happen but do not have a final decision, yet.

 

Please say a prayer. This will be good exposure (more than a 6 minute piece about just one PANDAS case ie: my daughter; but a broder look at the disease). If any parents want to send an email to me with a plea to why this needs to be done I will be happy to forward them to the producer as a group. (as I obviously cannot disclose her email). You can email me through the PANDAS RESOURCE NETWPRK website info@pandasresourcenetwork.com or laurensneezing@gmail.com

 

Lynn

 

 

 

WE NEED TO GET PANDAS on 20/20 .

[coco]

Hi Pandas - Chicago, Yes, I remember Diana's note from last summer and the interest Mystery Diagnosis had with story, and I also recall speaking with her about this. I remember that some parents were willing to have their story told, but don't know where that all went. I think it is so important for OTHER pandas cases (families and children) to be brought to light, with many multi-faceted symptoms, not just a sneezing tic...a child with OCD, emotional lability, crippling anxiety, etc. Since Diana already shared the producer's name and contact information with the forum 9 months ago and Pandas Chicago was kind enough to share again, the willing among us should really push the story along to expand to a more clinically broad view of this disorder. It would be great if Dr. T and Dr. K could also be part of this as they have been treating so many for so long and have "seen it all." Sadly, it doesn't sound like this potential episode will be featuring anyone else's story, though, as LJM mentions "exculsive" agreement. I would love to be wrong. Don't get me wrong, if LJM has the media interest to further the cause of Pandas awareness, go for it. If it were me, I would insist that my child be just 5 minutes of the story and let others with more severe symptoms and the more experienced doctors who have treated them have the floor, but that would be a perfect world.

[peglem]

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

[Dr_Rosario_Trifiletti]

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

 

If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents

 

1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren)

 

2. An otherwise healthy child who develops OCD

 

3. A child with autism who develops a marked worsening of symptoms

 

4. A child who develops severe PANDAS and the "exorcist syndrome"

 

I think this would really show the range of this condition.

 

 

Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident

 

Dr. T

[Worried_Dad]

I don't think Lynn J was talking about either Mystery Dx or 20/20 in particular. Per her post, sounds like these are producers who generate documentary content for a lot of different cable networks. If we can get a full hour on PANDAS that chronicles multiple cases and covers the full spectrum of PANDAS / PITAND, that would be a huge win!!!

 

We're praying with you, Lynn. Hope this comes to fruition!

 

 

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

[CandKRich]

.

Edited August 12, 2013 by CandKRich

[mama2alex]

Dr. T, I really like your suggestion. Showing a range of presentations is so important. I wanted to add that, like my son, I think there are a lot of kids who were not perfectly healthy before they developed full-blown PANDAS. They were mostly healthy, nearly normal kids, but there were subtle (but not always diagnosable) problems such as mild defiance, some moodiness, mild sleep issues, allergies, asthma, sensory sensitivity, etc. Maybe these kids are not the perfect research subjects or "made for tv" but I think they are an important, and perhaps large, subgroup.

 

 

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

 

If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents

 

1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren)

 

2. An otherwise healthy child who develops OCD

 

3. A child with autism who develops a marked worsening of symptoms

 

4. A child who develops severe PANDAS and the "exorcist syndrome"

 

I think this would really show the range of this condition.

 

 

Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident

 

Dr. T

[thereishope]

As I said in the other post, my son is a text book PANDAS case, but he gets better on antibiotics, a steroid burst for one excaerbation, and a lot of time and healing. I want to get the forum's "blessing" if you want that represented again or if IVIG and PEX cases need more attention.

[thereishope]

.

[peglem]

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

 

If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents

 

1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren)

 

2. An otherwise healthy child who develops OCD

 

3. A child with autism who develops a marked worsening of symptoms

 

4. A child who develops severe PANDAS and the "exorcist syndrome"

 

I think this would really show the range of this condition.

 

 

Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident

 

Dr. T

#3 - I have never heard this type discussed (other than by me) and I think this is a group who is typically overlooked because the symptoms are so often attributed to autism. I would loved to see this represented and was pleasantly surprised to see that you've considered this group!

[Worried_Dad]

I think anyone here who's willing to share their story publicly deserves our support... especially when they can show a happy ending with proper treatment, whether that's abx, steroids, IVIG, or PEX.

 

Go for it, Vickie!

 

 

As I said in the other post, my son is a text book PANDAS case, but he gets better on antibiotics, a steroid burst for one excaerbation, and a lot of time and healing. I want to get the forum's "blessing" if you want that represented again or if IVIG and PEX cases need more attention.

[7upMom]

I think anyone here who's willing to share their story publicly deserves our support... especially when they can show a happy ending with proper treatment, whether that's abx, steroids, IVIG, or PEX.

 

Go for it, Vickie!

 

 

As I said in the other post, my son is a text book PANDAS case, but he gets better on antibiotics, a steroid burst for one excaerbation, and a lot of time and healing. I want to get the forum's "blessing" if you want that represented again or if IVIG and PEX cases need more attention.

 

I agree also, I think its also good to include a happy ending from abx/steroids as well, it is part of it just as much!

[Pandas_chicago]

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

 

If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents

 

1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren)

 

2. An otherwise healthy child who develops OCD

 

3. A child with autism who develops a marked worsening of symptoms

 

4. A child who develops severe PANDAS and the "exorcist syndrome"

 

I think this would really show the range of this condition.

 

 

Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident

 

Dr. T

 

 

Dr. T - this is exactly what needs to be covered - along with Doctors who have long-term experience treating Pandas , Doctors like yourself and Dr. K ...to name a few.

[T_Mom]

Hi Lynn--

Hey, great News! More publicity for Pandas!!! Way to go--

 

This illness is so incredibly painful.

 

I shudder to think of how many children have been inappropriately institutionalized as a result of an illness that could have been treated with antibiotics (first line of defense according to Swedo's discussion with Diana), IVIG or PEX as necessary--

 

We need to GET THE WORD OUT! Go for it--

 

I know you'll do this--but can you please make sure that the sudden-onset, unexplainable OCD and mild ticcing of PANDAS gets noted along the way? I am thankful --

 

You and Lauren have helped to put us on the map--Thank you!!!!!!!!!!!!!!!!!!!