Fox news

[melanie]

Hi we were watching fox last night about 6pm and accross the bottom of the screen that ticker thing ,come a discription of PANDAS symptoms I didnt see the whole thing(Im not sure if a story was attached )but wow I was inspired.My sisters bestest friend in the world is a big producer on FOX I called her last night to see if she would ask her to get Gretta or someone over there inerested in this.I know there having lunch today hopefully someone will be interestd,seems like maybe they already are.Did anyone else see it?

 

Melanie

[ajcire]

oops, sorry.. messed up my post.. just ignore

 

 

Hi we were watching fox last night about 6pm and accross the bottom of the screen that ticker thing ,come a discription of PANDAS symptoms I didnt see the whole thing(Im not sure if a story was attached )but wow I was inspired.My sisters bestest friend in the world is a big producer on FOX I called her last night to see if she would ask her to get Gretta or someone over there inerested in this.I know there having lunch today hopefully someone will be interestd,seems like maybe they already are.Did anyone else see it?

 

Melanie

[coco]

Yes, my husband and I saw it, too...it ran about 2 hours along with other ticker info, and it clearly spelled out P A N D A S (Pediatric Autoimmune Neuropsychological Disorder Associated with Streptococcus) -- ALL the words! I believe it was referencing the sneezing girl diagnosis. My husband was casually watching tv while eating and brought my attention to it, and I literally had goosebumps seeing it run over and over. I would have never believed that 6 months ago. This is beginning to get more attention and it's great. Fox and Friends also had a brief report on it early in the morning yesterday, but sadly, Gretchen Carlson pronounced it "Phaaandas" (like the same way you'd say the "a" in the word "farm") -- I yelled at the TV saying, PANDAS!, PANDAS! -- like the bear!!! Ugh! But at least it was brought up.

 

One thing I was thinking about and talking to my husband about last night --- late --- after too much internet....but regarding the segments on sneezing girl: We feel that just about any publicity that gets shown to Pandas is great, especially since there has been like, how you say, NONE? for so long...however, perhaps in the short run here we can have a very severe case of a child with Pandas, complete with hand-licking, verbal tics, motor tics, OCD issues, sensory issues, anxiety disorder, etc., really in the spotlight to show families and other parents that this disorder is so seriously and deeply multi-faceted and there have been cases, perhaps millions, that have gone undiagnosed or improperly diagnosed, taking the parents on a totally different road in life...to a life of special education, anti-psychotic meds, hospitalizations, institutionalization and more. The investigative reporters should perhaps focus on the toll these children take on our school systems, when not correctly diagnosed...we all know that there are more and more children requiring special services than ever before. I am not saying that it's all due to pandas, but how many are due to undiagnosed pandas? I believe that TV docs ought to be saying "If your child has been diagnosed with ADD/ADHD, OCD, Anorexia, Tourettes, or ASD spectrum, these are the three simple tests you need to have your child undergo to rule out Pandas first." This is life changing. Beth Maloney opened the door, but it needs to be kicked in, and ALL options for healing where there is disagreement or not on the protocol, steriods, advil, ABX, IVIG, PEX, should all be on the table.

 

I hope that the sneezing girl does not go the way of the "hiccupping girl" or the man who took too much collodial silver and turned blue, but rather as another way to get the debilitating story of pandas out. Let's get some parents and kids on tv to talk about the YEARS they have been battling this "thing" and all the ways it can present itself.

 

Sorry for the long post, I am not trying to stir the pot here, just adding my 2 cents, and I wish each and everyone of us heartfelt best wishes for a full recovery for their kids and families as quickly and effectively as possible...the ones with a few symptoms for a short while, and even more poignantly...longtimers. Each story is precious!

 

coco

[sww817]

I agree with everything you said. Unfortunately, I think we still have a long road ahead. This disorder has SO MANY different presentations. And the general population and media like things to be neat and tidy and easily identified. I can attest that our story is extremely complicated, as most of the stories on this forum are. So let's just be extremely hopeful that the media keeps taking these baby steps presenting anything about PANDAS. One day the full story may be out there. And in the meantime, thank God for this forum and the wealth of knowledge that we parents can get here.

[kcdc3]

I think we all should send in a request to Oprah to do a show about this. Her guests could include Dr. K, Dr. L, Dr. T as well as Madeline Cunningham- maybe she could get more funding from it by raising awareness for research! I think that ALL the guests in the audience should be parents of children with PANDAS. She, of course, would have to move the show to an arena instead of the studio, but what a way to get the message out!!!!!! Anyone agree???

[ajcire]

I think that Beth (Saving Sammy) has done an Oprah campaign. Unfortunately it might not have the right invited guests but it probably takes the publicity she has to actually accomplish getting to Oprah.

 

 

I think we all should send in a request to Oprah to do a show about this. Her guests could include Dr. K, Dr. L, Dr. T as well as Madeline Cunningham- maybe she could get more funding from it by raising awareness for research! I think that ALL the guests in the audience should be parents of children with PANDAS. She, of course, would have to move the show to an arena instead of the studio, but what a way to get the message out!!!!!! Anyone agree???

[sww817]

I really do not like to be negative... but I think the Saving Sammy story WITHOUT other stories with it, is a negative to the PANDAS community. From what I have seen, they do not embrace the differences in presentations and protocols. I think they are only presenting one side of the story here and we all know that PANDAS has so many different faces. I actually would rather NOT see the Saving Sammy story on Oprah. But I would love to see a collection of patients and doctors (Dr. L, Dr. K, Dr. T) on there. And Sammy could certainly be one of them.

 

I am sorry if I come across negative. I just have traveled this long road and been turned away too many times by doctors that were misinformed. It took me a trip to Dr. L who immediately saw the true picture. And I only made that trip because of my gut not letting me just accept another episode. I don't want another parent to have to go through what I went through unnecessarily.

 

Doesn't that saying go... information is power. But what about INCORRECT information? Again, sorry to be negative.

[ajcire]

Oh, I agree with you... I just meant that since she has already started her campaign I imagine that it would be hard for non public parents to get the attention of Oprah over her since has such publicity now.

 

 

I really do not like to be negative... but I think the Saving Sammy story WITHOUT other stories with it, is a negative to the PANDAS community. From what I have seen, they do not embrace the differences in presentations and protocols. I think they are only presenting one side of the story here and we all know that PANDAS has so many different faces. I actually would rather NOT see the Saving Sammy story on Oprah. But I would love to see a collection of patients and doctors (Dr. L, Dr. K, Dr. T) on there. And Sammy could certainly be one of them.

 

I am sorry if I come across negative. I just have traveled this long road and been turned away too many times by doctors that were misinformed. It took me a trip to Dr. L who immediately saw the true picture. And I only made that trip because of my gut not letting me just accept another episode. I don't want another parent to have to go through what I went through unnecessarily.

 

Doesn't that saying go... information is power. But what about INCORRECT information? Again, sorry to be negative.

[Worried_Dad]

Hi, y'all:

 

I understand the sensitivity of this issue, as so many of us have been ignored by doctors due to misconceptions or a "Cliff's Notes" understanding of PANDAS. But I want to present the other side of this.

 

As many of you know, our son has done 3 full IVIG rounds with Dr. K and was still in very bad shape. We were losing hope. Beth Maloney has been incredibly gracious to us and generous with her time as far as sharing Sammy's experience. And - for us - the high-dose augmentin seems to have been that critical missing piece.

 

I spoke with Beth M on the phone for about 25 minutes last week. (She's been swamped with e-mails and phone calls but still offered to share some more about Sammy's recovery pattern with me.) She said she knows she's not a doctor or medical expert, so she's really trying to confine her own comments and context to sharing Sammy's specific story rather than implying it's a "universal truth" about all PANDAS cases.

 

She also mentioned that - per Dr. Nicolaides - she had planned to try IVIG for Sammy if the abx alone did not do the job. She fully understands that IVIG and PEX are valuable weapons for severely ill PANDAS children. But back then (7+ years ago), even Dr. Swedo was expressing concern about using a "pooled blood product" and reserved it as a last resort after several children (SC kids, I think) died from "tainted" Ig.

 

And - bless the Maloneys for this - I think they've convinced even the "PANDAS angels of mercy" like Dr. K and Dr. L that higher doses of abx are essential for eradicating strep for some of these kids. Our own experience, at least, is that IVIG - without strep eradication - is only a partial, and very expensive, temporary fix.

 

Just wanted to share that. Again, Beth M has been wonderful to our family since months before the book even came out and has always responded quickly to my e-mail questions. (Of course, my family would probably have sunk into a black hole without this forum!)

 

 

I really do not like to be negative... but I think the Saving Sammy story WITHOUT other stories with it, is a negative to the PANDAS community. From what I have seen, they do not embrace the differences in presentations and protocols. I think they are only presenting one side of the story here and we all know that PANDAS has so many different faces. I actually would rather NOT see the Saving Sammy story on Oprah. But I would love to see a collection of patients and doctors (Dr. L, Dr. K, Dr. T) on there. And Sammy could certainly be one of them.

 

I am sorry if I come across negative. I just have traveled this long road and been turned away too many times by doctors that were misinformed. It took me a trip to Dr. L who immediately saw the true picture. And I only made that trip because of my gut not letting me just accept another episode. I don't want another parent to have to go through what I went through unnecessarily.

 

Doesn't that saying go... information is power. But what about INCORRECT information? Again, sorry to be negative.

[sww817]

I am glad you have gotten help from her. I certainly do not want to say anything bad about her or what she believes. What helped Sammy has and will help many others. I just know that the diagnostics that they used (ASO) were not beneficial to me or many others. And the antibiotics alone do not help everyone. Plus, as some other threads have spoken about, there are variances of symptoms and chronic presentations. So I just believe that their story alone paints an incorrect picture. As my story alone would paint an incorrect picture. I certainly do not want to speak badly of anyone in this situation, and it is great to get the word out there that this exists. But MY OPINION, is that it is also critical for other parents to know there are a lot of different presentations and protocols.

 

Again, I am happy that Sammy's story has helped you and lots of other people out there. And Lauren's story has helped. These stories together with some of the others like on this board will give the best information to the public.

[Iowadawn]

Re Fox News: Our 50,000 watt major a.m. station in Des Moines, IA (WHO) that is heard everywhere at night runs Fox News. They ran the story late last night on the radio!! I'm excited.

 

Dawn

[thereishope]

That's why you email Oprah or twitter her producer and politely give them your opinion about Ms Maloney and how your info on PANDAS varies. Also give them links to PANDAS Network and this forum. I simply say, if you would like to view the stories of many families living with PANDAS and see their struggles, please visit this parent forum at....

 

I only give the link to this forum to reputable outlets. I don't want jerks spying on us, quoting us wrong, or chiming in on here.

 

Let them know it can be a "lively" show. They wants ratings, right?

 

 

Oh, I agree with you... I just meant that since she has already started her campaign I imagine that it would be hard for non public parents to get the attention of Oprah over her since has such publicity now.

 

 

I really do not like to be negative... but I think the Saving Sammy story WITHOUT other stories with it, is a negative to the PANDAS community. From what I have seen, they do not embrace the differences in presentations and protocols. I think they are only presenting one side of the story here and we all know that PANDAS has so many different faces. I actually would rather NOT see the Saving Sammy story on Oprah. But I would love to see a collection of patients and doctors (Dr. L, Dr. K, Dr. T) on there. And Sammy could certainly be one of them.

 

I am sorry if I come across negative. I just have traveled this long road and been turned away too many times by doctors that were misinformed. It took me a trip to Dr. L who immediately saw the true picture. And I only made that trip because of my gut not letting me just accept another episode. I don't want another parent to have to go through what I went through unnecessarily.

 

Doesn't that saying go... information is power. But what about INCORRECT information? Again, sorry to be negative.

[Worried_Dad]

Agreed, and very well put. There are so many different subplots in the PANDAS story, and they all need to be told so the broader tale is understood!

 

 

I am glad you have gotten help from her. I certainly do not want to say anything bad about her or what she believes. What helped Sammy has and will help many others. I just know that the diagnostics that they used (ASO) were not beneficial to me or many others. And the antibiotics alone do not help everyone. Plus, as some other threads have spoken about, there are variances of symptoms and chronic presentations. So I just believe that their story alone paints an incorrect picture. As my story alone would paint an incorrect picture. I certainly do not want to speak badly of anyone in this situation, and it is great to get the word out there that this exists. But MY OPINION, is that it is also critical for other parents to know there are a lot of different presentations and protocols.

 

Again, I am happy that Sammy's story has helped you and lots of other people out there. And Lauren's story has helped. These stories together with some of the others like on this board will give the best information to the public.

[Pandas_chicago]

Hi we were watching fox last night about 6pm and accross the bottom of the screen that ticker thing ,come a discription of PANDAS symptoms I didnt see the whole thing(Im not sure if a story was attached )but wow I was inspired.My sisters bestest friend in the world is a big producer on FOX I called her last night to see if she would ask her to get Gretta or someone over there inerested in this.I know there having lunch today hopefully someone will be interestd,seems like maybe they already are.Did anyone else see it?

 

Melanie

 

 

http://www.foxnews.com/story/0,2933,579070,00.html

[llmusicmom]

What are the three simple tests? (Sorry to be the newbie)

 

"If your child has been diagnosed with ADD/ADHD, OCD, Anorexia, Tourettes, or ASD spectrum, these are the three simple tests you need to have your child undergo to rule out Pandas first."