oprah.com - please submit

[Tracey111]

OK....I am done with the whole "just tics"....Kim, you said it all in your post to Judy!!!! I have written several times "where is Oprah"....so, I went to Oprah. com and posted a "tell your story". I wrote about tics and vaccines and my 6 year old. Also mentioned the web site ACN. What if we all wrote in and got some attention on this topic???? I forgot to mention PANDAS after vaccines.........so...how many of you have a minute to go to Oprah.com...because that is all it took!!!!!

[myrose]

I am with you. I am on my way now! I understand my child has tics, and it can always be worse. BLAH BLAH BLAH...in other words I know my child has tics but all I really truly want to know is WHY WHY WHY

 

I do not even care about the answer, i know its not going to chnage anything but it would at least make me understand and YES that would make me feel better.

 

Even if it was something I did, I just need to know. Maybe its genetics....again just need to know. My brother had triplets, two of them are boys....I am worried for him now. Wish I knew what to tell him so it wouldn'y happen to him. Maybe it won;t but still..........I JUST NEED TO KNOW

 

 

Hope you all understand what I am feeling.....

[Pamela Kay]

I wrote to Oprah about my sons story about a month or so ago. I had the same idea you did!

[faith]

You may be surprised at this, but I don't know how I feel about that. What exactly do you hope would come of it? I mean they kind of did that already with the autism subject and touched on vaccines with Jenny McCarthy. ... There is already so much misconception about tourettes when it comes to the media, it just kind of makes me nervous.........I'm not sure I'm comfortable with "outsiders" penetrating our privacy here, ....

 

[CSP]

I don't watch Oprah, so I'm not sure, but just wondering how many DRUG CO. commericals fund her show? I would be real upset if her time slot is a huge market to sell drugs for any disorder!!

 

I agree with Faith, she has done a show on TS already too.

 

I think she should do a show on how stupid Drs really are. She could call it. "Mamas don't let your children grow up to be Drs or lawyers, let them grow up to be cowboys." Then our children will learn to live off the land.

 

OH NO! now I'm going to have that song stuck in my head all day.

 

C.P.

[colleenrn]

I emailed both Oprah and Dr. Phil years ago explaining PANDAS b/c if more people are educated maybe we would get more answers and better care. Neither show responded. I try to educate whoever I can about PANDAS b/c I think it is ridiculous to step foot in ANY pediatrician, family practice, or neurologist office and have them not know about PANDAS. It has been in ALL of the literature for the past 20 years and when I meet a physician who gives direct care to children and they are not aware that PANDAS exists, I immediately know they are not current on their continuing education or on current literature. I find that unnacceptable.

[michele]

When Jenny McCarthy was touring for her book, Debra Roberts did a special on autism for 20/20. I found it really interesting she mentioned her own son has been struggling with issues of Attention and she wanted to try the GF diet for him. Maybe Debra Roberts would be a better person to email. It seems lately that Dr. Phil and Oprah are not as interested on kid topics lately. 20/20 has been doing a weekly series on rare disorders lately. Maybe PANDAS would be of interest to them.

 

Michele

 

I emailed both Oprah and Dr. Phil years ago explaining PANDAS b/c if more people are educated maybe we would get more answers and better care. Neither show responded. I try to educate whoever I can about PANDAS b/c I think it is ridiculous to step foot in ANY pediatrician, family practice, or neurologist office and have them not know about PANDAS. It has been in ALL of the literature for the past 20 years and when I meet a physician who gives direct care to children and they are not aware that PANDAS exists, I immediately know they are not current on their continuing education or on current literature. I find that unnacceptable.