Don't forget "The Doctors" tomorrow

[beeskneesmommy]

Beth will be on The Doctors tomorrow morning helping to make the world aware of PANDAS. Here are the local listings:

 

http://www.thedoctorstv.com/main/local_listings

 

http://www.thedoctorstv.com/main/show_page/D4028

[tpotter]

Beth will be on The Doctors tomorrow morning helping to make the world aware of PANDAS. Here are the local listings:

 

http://www.thedoctorstv.com/main/local_listings

 

http://www.thedoctorstv.com/main/show_page/D4028

 

 

Very short...really only focused on OCD, which is disappointing, because as we know, it's so much more. BUT, I really, really liked their explanation of it being "rheumatic fever of the brain."

[mdmom]

I agree. Disappointing coverage of the disorder; they really dumbed it down. However, the "public" is not ready to hear about all of the symptoms of PANDAS and all of the ramifications of the disease once it goes chronic like it has in many of our kids.

 

I am optimistic that these little snippets about the disorder will eventually open the eyes of mainstream medicine.

 

Ironically, reading the Saving Sammy book is what spawned me to start seeking the diagnosis for my son just last year. Dr. N, in a phone consult, said to me after listening to his history, "I cannot believe no doctor ever mentioned PANDAS to you." Hmmmm... Neither can I.

 

But let's stay hopeful that more kids will get diagnosed early and treated early!

Edited November 4, 2011 by mdmom

[beeskneesmommy]

Disappointed to hear that it was not covered as well as we had hoped - I took my son to a museum today so I hAve yet to see it although I "taped" it on DVR...

[writergal]

I'm so bummed that I missed the show! My mom who has been most negative about the PANDAS diagnosis saw the last 20 minutes or so when they were talking about how people with Tourettes have learned behavior - and somehow she got that the boy they were interviewing got better because they taught him how to manage his TIC's.....I'd like to see it myself, because her comments didn't sound like they were an accurate representation.

 

BTW- my mom is convinced that our son has learned to do his irritating TIC's and does it for attention. She somehow seemed to think that this show corroborated her view point.

 

Julie

[thereishope]

For those that missed the show..

http://www.thedoctorstv.com/videolib/init/5141

Edited November 4, 2011 by Vickie

[KaraM]

I didn't see the show, but just looked at the synopsis page (I was really hoping they had past episodes online, but it doesn't look like they do). It looks like they had several segments including one on PANDAS and a separate one on Tourette's. The synopsis for the Tourette's segment mentions a person who was able to gain control...I wonder if that's the part your mother saw, and not the segment on PANDAS....

 

Frustrating, though, if they didn't mention PANDAS as a possible cause of tics/Tourette like symptoms on the segment on Tourettes...

 

Here's a link to the synopsis.

 

http://www.thedoctorstv.com/main/show_synopsis/875?section=synopsis

 

.

I'm so bummed that I missed the show! My mom who has been most negative about the PANDAS diagnosis saw the last 20 minutes or so when they were talking about how people with Tourettes have learned behavior - and somehow she got that the boy they were interviewing got better because they taught him how to manage his TIC's.....I'd like to see it myself, because her comments didn't sound like they were an accurate representation.

 

BTW- my mom is convinced that our son has learned to do his irritating TIC's and does it for attention. She somehow seemed to think that this show corroborated her view point.

 

Julie

[KaraM]

Ah...they do have it online....thanks Vicki!

 

For those that missed the show..

http://www.thedoctor...eolib/init/5141

[beeskneesmommy]

No, there was a young man who learned to control his tic TO AN EXTENT - I saw him ticcing on the show, although minor, and his speech was rapid. I kind of wish that they had not lumped Sammy in with the other situtions because some of them were too far afield and confused the PANDAS issue. One had to do with throat clearing addressed by an ENT, which may have also confused your mother.

 

I am so sad to hear that your family members do not understand. It is one of the hardest parts for us all, I think. I love my parents and they are both educated and kind. However, last summer we were visiting to see docs in Philly and CT. My son was having a very rough time and quite hyperactive. I overheard my father calling my (then 4 year old) son a "sociopath". I have worked hard to move forward, but I will never be able to forget that he said something so awful. Unfortunately, this criticism was not an isolated incident and our relationship will never be the same again.

 

Try to help your mom get more educated, but remember that you cannot control other people's responses, no matter how disturbing they are.

 

Good luck and warm wishes, Kath

[dcmom]

Wow- I just watched the clip of the pandas portion of the Doctors. I thought it was excellent.

 

Sure they only had a few minutes- and frankly I watched the Doctors once before and thought it was a horrible show- but this was great.

 

The best thing about it was there were 4 doctors talking about pandas- and NOT ONCE was the disclaimer "it's controversial" put up. I liked how they put it into context with other post strep disorders, and discussed that the NIH was studying it.

 

Shows like this are not so much for us, but to help spread the word, so kids can be diagnosed, and parents can demand their doctors to look into pandas.

 

Great job, Beth!!!

[airial95]

I'm so bummed that I missed the show! My mom who has been most negative about the PANDAS diagnosis saw the last 20 minutes or so when they were talking about how people with Tourettes have learned behavior - and somehow she got that the boy they were interviewing got better because they taught him how to manage his TIC's.....I'd like to see it myself, because her comments didn't sound like they were an accurate representation.

 

BTW- my mom is convinced that our son has learned to do his irritating TIC's and does it for attention. She somehow seemed to think that this show corroborated her view point.

 

Julie

 

Sorry your mom isn't so supportive. I think many of us have been there with family members who think we're just too indulgent, let them get away with too much, or that we're imagining things. My mother fell squarely into this camp - always telling me that "boys are harder", it's "just a phase", etc... Well, she changed her tune when both my husband and I had to go out of town on business and she took the kids. She called me asking what to do because my son was freaking out, running around the house naked, screaming, biting and kicking if she tried to put clothes on him and peeing all over her house.

 

I told her quite calmly - "It's just a phase, he'll outgrow it, remember boys are harder" and hung up.

 

She called back 5 minutes later apologizing for not being more supportive and understanding - now would I please tell her what the heck she's supposed to do!

[philamom]

Wow- I just watched the clip of the pandas portion of the Doctors. I thought it was excellent.

 

Sure they only had a few minutes- and frankly I watched the Doctors once before and thought it was a horrible show- but this was great.

 

The best thing about it was there were 4 doctors talking about pandas- and NOT ONCE was the disclaimer "it's controversial" put up. I liked how they put it into context with other post strep disorders, and discussed that the NIH was studying it.

 

Shows like this are not so much for us, but to help spread the word, so kids can be diagnosed, and parents can demand their doctors to look into pandas.

 

Great job, Beth!!!

I agree. I thought it was an excellent introduction to the disorder. I liked how it briefly explained that the immune system is involved.

And, I never watch the show, but I know they have a pretty strong audience. I'm so happy the word is spreading!!

[tpotter]

Wow- I just watched the clip of the pandas portion of the Doctors. I thought it was excellent.

 

Sure they only had a few minutes- and frankly I watched the Doctors once before and thought it was a horrible show- but this was great.

 

The best thing about it was there were 4 doctors talking about pandas- and NOT ONCE was the disclaimer "it's controversial" put up. I liked how they put it into context with other post strep disorders, and discussed that the NIH was studying it.

 

Shows like this are not so much for us, but to help spread the word, so kids can be diagnosed, and parents can demand their doctors to look into pandas.

 

Great job, Beth!!!

I agree. I thought it was an excellent introduction to the disorder. I liked how it briefly explained that the immune system is involved.

And, I never watch the show, but I know they have a pretty strong audience. I'm so happy the word is spreading!!

 

I watched the entire show, and also thought it was excellent...just would have liked tics, anxiety, cognitive issues, and mood lability to have been included. But, the reason it wasn't was because Beth's son did not have those problems, and she's the one getting the word out. I don't fault her...I think it's fantastic that she and her family are willing and able to do it...my boys won't allow me to mention that they have the disorder.

 

That being said, the show yesterday was about odd behaviors that are actually medically caused. They were discussing different things, and not all of them were caused by PANDAS...it was really only one segment, and pretty well done. I agree that it was great that they didn't downplay it, and mention it was "controversial." That's something huge!

 

I had the added benefit of sitting next to someone (my DS is currently getting IVIG at Dr. B's office) who happened to know the person being interviewed who had Tourettes (he did a double take, and said that they were good friends from college!) Said he's the nicest person you could meet. (BTW...that is the part that your mother saw...not the PANDAS portion.) What the guy with Tourettes was saying is that there are times when he can't control it...it's like having an itch that you have to scratch, and in order to get rid of the itch...you scratch it. Just like you can learn to not scratch, you can also learn to not always do the tic in public. But, as we all know, sometimes the tics do get out (he showed an incident where he was asked to leave a library by security, because the sounds were "disturbing"others. He explained that he had a medical disorder.

 

It really was a very good show, and I think it certainly gets out to others. Only thing I would have liked to have seen was where they mentioned the other symptoms instead of only OCD.