ABC News Primetime tonight

[dcmom]

ABC News is doing a primetime special on children living with ocd tonight. You can see info on their website. I don't think I will watch it, may be too painful. Especially because I doubt they will mention pandas. They mention one child is five. I am sure he and maybe more may have pandas (typical ocd doen't manifest that young, I don't think). The most painful part will be that these kids are probably not being treated for pandas. I sent an email to primetime telling them about pandas, and imploring them to look into it for the sake of these kids. Maybe if we all can send an email- they will notice. The most painful part of this is the time before diagnosis, and the longer that goes on, the worse for the family. I tried to find a way to directly contact the reporters, but couldn't. Let me know if any one is more resourceful than I, and finds something better than the form email.

[thereishope]

I think OCD can manifest in babies. I can't remember the age the psychiatrist told us. Somewhere bet 6-18 months. I know it's a big range, but I can't remember.However, not many kids get diagnosed until much, much older.My son is 5, so I would be curious to "compare" .Thanks for letting us know about it. I think I will watch it. It will help me write a better letter.

[ShaesMom]

We saw the promo this morning and my older son was glued to the tv and at one point turned to me and said "Mom, that sounds like something Shae has." Broke my heart.

 

I tried to watch the special on tourettes a few months back and it was to painful. I'll tape this one and try to watch it another day.

[thereishope]

I watched the show last night. They did not mention PANDAS, but to be honest, if they did, it would have been such a fast blurb that they would have misrepresented what we all go through. It really needs to be a show on it's own.

 

For those of you who recorded it and wasn't sure if you should watch, it touched on 4 kids w/ OCD. All ended on a good note. I didn't cry until the very end, but it was a good cry for me. It reminded me of the accomplishments my son has made.

 

So, Tonight I will contact Primetime and ask them to do a show about PANDAS.

[NancyD]

I have contacts for each of the major networks and would be happy to work with anyone who wants to get the word out. We would need an angle different from the one portrayed on ABC (I did not get to see this segment so if anyone has a link, please post) and some families to volunteer their stories.

Nancy

 

 

I watched the show last night. They did not mention PANDAS, but to be honest, if they did, it would have been such a fast blurb that they would have misrepresented what we all go through. It really needs to be a show on it's own.

 

For those of you who recorded it and wasn't sure if you should watch, it touched on 4 kids w/ OCD. All ended on a good note. I didn't cry until the very end, but it was a good cry for me. It reminded me of the accomplishments my son has made.

 

So, Tonight I will contact Primetime and ask them to do a show about PANDAS.

[michele]

Wow Nancy. wouldn't that be great! I just would like them to show the day to day issues PANDAS kids face. Not exagerated to get viewers just realistic. The medical journey and trying to find Dr's hat will help, the compulsive behaviors and emotional troubles, the meds issues and getting schools to recognize the disorder. Great exposure.

 

I have contacts for each of the major networks and would be happy to work with anyone who wants to get the word out. We would need an angle different from the one portrayed on ABC (I did not get to see this segment so if anyone has a link, please post) and some families to volunteer their stories.

Nancy

 

 

I watched the show last night. They did not mention PANDAS, but to be honest, if they did, it would have been such a fast blurb that they would have misrepresented what we all go through. It really needs to be a show on it's own.

 

For those of you who recorded it and wasn't sure if you should watch, it touched on 4 kids w/ OCD. All ended on a good note. I didn't cry until the very end, but it was a good cry for me. It reminded me of the accomplishments my son has made.

 

So, Tonight I will contact Primetime and ask them to do a show about PANDAS.

[thereishope]

This is the link to Primetime. It doesn't play the whole segment, but gives some text. Would "youtube" have it? I started working on my letter and I started to ramble and preach. I have to scrap it and start over. I think it will be best to wait until the kids are asleep.

 

http://abcnews.go.com/Primetime/story?id=8214328&page=1

[NancyD]

What we can do is approach a couple of producers to see if they would be interested in doing a piece on PANDAS. If they are interested, I'm sure they would want to show a couple of families with success stories and a couple of families still strugging (and have dramatic stories to tell). The kids should range in age.

 

Anyone else interested in particpating?

 

Nancy

 

Wow Nancy. wouldn't that be great! I just would like them to show the day to day issues PANDAS kids face. Not exagerated to get viewers just realistic. The medical journey and trying to find Dr's hat will help, the compulsive behaviors and emotional troubles, the meds issues and getting schools to recognize the disorder. Great exposure.

[NancyD]

Thanks Vickie -- I'll check this out later tonight. Have to take my daughter shopping for school clothes in a few minutes. I doubt ABC would consider running another similar segment so soon after the other, but you never know. Was Dr. Timothy Johnson involved in this piece? If so, I can approach his staff (I have worked with them on other pieces and they are located in MA near me). I'm sure we could get Drs. K, Cunningham, Bock, or others to participate. Let me think about a good angle...

 

Nancy

 

This is the link to Primetime. It doesn't play the whole segment, but gives some text. Would "youtube" have it? I started working on my letter and I started to ramble and preach. I have to scrap it and start over. I think it will be best to wait until the kids are asleep.

 

http://abcnews.go.com/Primetime/story?id=8214328&page=1

[thereishope]

I'd have to think about it. However, since my son gets extreme but does for the most part improve w/o IVIG & is not on preventative antibiotics, I may hurt the story more than help. I don't want it to turn into, "look, there's no need for these procedures". I don't agree w/ that and don't want to end up backing up that stance. I don't know if in the future I may be faced w/ that decision. Right now, I've been lucky.

 

 

What we can do is approach a couple of producers to see if they would be interested in doing a piece on PANDAS. If they are interested, I'm sure they would want to show a couple of families with success stories and a couple of families still strugging (and have dramatic stories to tell). The kids should range in age.

 

Anyone else interested in particpating?

[thereishope]

Also, those involved have to realistic and know a show about PANDAS will have doctors also trying to prove that PANDAS does not exist and may even use twist their children's stories to help prove that. Make sure you have a thick skin in case that would happen.

[Kayanne]

I'm interesed in helping....I have corresponded by email with "suzan" and she is also interested.

 

What we can do is approach a couple of producers to see if they would be interested in doing a piece on PANDAS. If they are interested, I'm sure they would want to show a couple of families with success stories and a couple of families still strugging (and have dramatic stories to tell). The kids should range in age.

 

Anyone else interested in particpating?

 

Nancy

 

Wow Nancy. wouldn't that be great! I just would like them to show the day to day issues PANDAS kids face. Not exagerated to get viewers just realistic. The medical journey and trying to find Dr's hat will help, the compulsive behaviors and emotional troubles, the meds issues and getting schools to recognize the disorder. Great exposure.

[NancyD]

You are correct about that, Vickie. Best to be pre-emptive and suggest to the producers that they interview Sue Swedo and a short list of other physicians who we know believe in PANDAS. The producers are always happy when you do some of the leg work for them. Of course, we would make sure in advance that the physicians are willing to do the interview. I know someone who works for Sue and I can ask her.

 

Nancy

 

Also, those involved have to realistic and know a show about PANDAS will have doctors also trying to prove that PANDAS does not exist and may even use twist their children's stories to help prove that. Make sure you have a thick skin in case that would happen.

[mom md]

I am also happy to participate. Our story too involves anxiety, OCD,etc progressing to true chorea because so many other diagnoses were entertained. We finally figured it out and recieved antibiotics anf finally PEX. We seem to be cured. If you look back at Sydenham's chorea those patients also presented with psych issues and then developed chorea. Our blookwork with Cunningham put us in the SC range. It shows that SC which maby people think does not exist still does. It also show that if left untreated PANDAS can turn into SC. It appears to be a spectrum of a disease. If caught early antibiotics may work or steroids, if not then IVIG and PEX are indictaed. We also thought he had ADD/ADHD, anxiety, OCD, restless leg syndrome, etc...all the while it was PANDAS.

[T_Mom]

YEY, MDMom-- Glad to hear things are going well ... That is fantastic news.

TMom

 

I am also happy to participate. Our story too involves anxiety, OCD,etc progressing to true chorea because so many other diagnoses were entertained. We finally figured it out and recieved antibiotics anf finally PEX. We seem to be cured. If you look back at Sydenham's chorea those patients also presented with psych issues and then developed chorea. Our blookwork with Cunningham put us in the SC range. It shows that SC which maby people think does not exist still does. It also show that if left untreated PANDAS can turn into SC. It appears to be a spectrum of a disease. If caught early antibiotics may work or steroids, if not then IVIG and PEX are indictaed. We also thought he had ADD/ADHD, anxiety, OCD, restless leg syndrome, etc...all the while it was PANDAS.