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Today Show - Sneezing Tic


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44 replies to this topic

#1 Megs_Mom

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Posted 12 November 2009 - 08:53 AM

Here is the clip: http://today.msnbc.m...880346#33880346

I am amazed that this is being considered in such a rationale way by the national media - no huge uproar about this being a controversial diagnosis. Just a discussion of how to best help this little girl. Very cool.


#2 ajcire

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Posted 12 November 2009 - 09:18 AM

Wow.. I saw a quick blurb on the news about it but didn't actually hear the report. Thank you for sharing that link!!

#3 colleenrn

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Posted 12 November 2009 - 09:28 AM

The first thing I thought of was "does she have PANDAS?" Are the sneezes tics? It began abruptly after an illness... Hmmmm....

Colleen

#4 Megs_Mom

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Posted 12 November 2009 - 09:38 AM

The first thing I thought of was "does she have PANDAS?" Are the sneezes tics? It began abruptly after an illness... Hmmmm....

Colleen

It's kind of funny that we are all thinking "duh". Hello.... Seriously, the medical community, at a very basic level, needs to learn what OCD looks like & what a tic looks like. And I guess what a sneeze looks like :wacko:

#5 ajcire

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Posted 12 November 2009 - 09:49 AM

LOL, I needed a laugh today. That was it. thanks :)

Colleen[/quote]
It's kind of funny that we are all thinking "duh". Hello.... Seriously, the medical community, at a very basic level, needs to learn what OCD looks like & what a tic looks like. And I guess what a sneeze looks like :wacko:
[/quote]

#6 dut

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Posted 12 November 2009 - 09:53 AM

that made me cry.. to see them discuss PANDAS as though it were as accepted as a real diagnosis. feels like we're really getting somewhere.....
DD9 dx'd 2008 1 month after 1st recognised symptom - PITANDS
DS5 dx'd 2009 1 year after first symptoms also PITANDS

#7 dut

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Posted 12 November 2009 - 09:55 AM

Shame I can't construct a sentence properly, though..... :-)
DD9 dx'd 2008 1 month after 1st recognised symptom - PITANDS
DS5 dx'd 2009 1 year after first symptoms also PITANDS

#8 colleenrn

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Posted 12 November 2009 - 09:59 AM

When I posted before I had not seen the whole segment. They did talk about PANDAS being a real possibility and hooked her up with Saving Sammy's doc and Dr. Leckman!! I just wish docs like Leckman, Nicoletti, Latimer, Swedo, etc... would be much more vocal and assertive about PANDAS!

We have these nit wits, publishing papers left and right, trying to disprove PANDAS instead of trying to help these children. The laugh will be on them in the end b/c some day soon no one will be able to say PANDAS is "controversial".

Colleen

#9 monarchcat

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Posted 12 November 2009 - 09:59 AM

Nancy Snyderman said the dreaded "get strep antibodies to rule out pandas" though... Hate that!

#10 colleenrn

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Posted 12 November 2009 - 10:05 AM

Here is the link to send comments to Dr. Snyderman. I just emailed her explaining the titer situation and how you cannot rule out PANDAS based on normal titers.

http://today.msnbc.msn.com/id/21839940

Colleen

#11 llm

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Posted 12 November 2009 - 12:17 PM

This is the email I sent to the Today Show...

"Dr. Snyderman,
Thank you very much for your story this morning on the possibility of PANDAS being a cause for the young girl's sneezing tics. However, please be aware that while an ASO/Anti-DNase B titer test is an excellent way to detect a recent strep infection, it is not a definitive test. A negative titer test cannot be used to rule out a strep infection. It is only useful to confirm one.

My son had scarlet fever, a positive rapid strep culture and a clinical diagnosis of strep two months in a row. Yet three weeks after his second infection, his titer test came back "negative." It is well documented that many people will not produce positive titers following a confirmed GABHS infection.

Attached is a a study published by Edward Kaplan et al that illustrates this point. (Shet Anita, Kaplan Edward L. et al. Immune Response to Group A Streptococcal C5a Peptidase in Children: Implications for Vaccine Development. JID 2003:188 809-17.) The study itself was not focused on titers. But during the research, Dr. Kaplan documented a high percentage of research participants who failed to have rising titers. I call your attention to the first paragraph of page 812.

By all means, a child without clinical presentation of GABHS should have an ASO/Anti-DNase B titer test as a way to confirm a recent strep infection. My only concern is that a negative titer test may be incorrectly used to rule out PANDAS. This would be a huge disservice to a child who truly has PANDAS. For more information, you may wish to contact Dr. Madeleine Cunningham, an immunologist at the University of Oklahoma who is well versed in streptococcal infections and PANDAS. "

I provided Dr Cunningham's email. It is great that the media, especially the Today Show, is presenting PANDAS without controversy. Now we just have to keep the reporters informed. Perhaps the tide is turning and Kaplan et al will finally find themselves on the wrong side of history. Nothing would make me happier than to have my grandchildren be incredulous that PANDAS was ever controversial.

Laura

#12 eamom

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Posted 12 November 2009 - 12:31 PM

Great letter Laura! :wacko:

#13 ajcire

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Posted 12 November 2009 - 01:03 PM

I agree... great letter. Positive yet informative! I hope you get an equally thought out response.

#14 eamom

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Posted 12 November 2009 - 07:02 PM

Okay, I sent a letter too....a few hours later got an automated response as to how they get HUNDREDS of letters each day. So, hopefully a real human will actually read what we wrote!

#15 laurenjohnsonsmom

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Posted 14 November 2009 - 08:54 AM

Just posted this reply on another thread in reference to my daughter..

and here I am...

I feel the need to clarify a few things..

The first time we have ever heard the acronym "PANDAS" was late last Monday evening when a mother of my daughter’s classmates saw our local TV station cover Lauren's story. Prior to that we had been to see the director of the pediatric neurology clinic at CHKD hospital and the Pediatric ENTS at CHKD, been to our regular physician a hypnotist and psychotherapist, many, many times over the last 3 weeks.

NO ONE MENTIONED OCD, PANDAS, STREP VIRUS, etc in this process. We were routinely told that is was psychosomatic or intractable psychogenic sneezing, which trust me, if you research, Google, etc..you find VERY LITTLE information besides that it is a VERY rare disease with only 40 reported cases in the last 60 years! Our local “specilists/physicans” knew nothing about this!

Out of pure frustration over not finding any specific information on this topic and a trues mothers love for my daughter to move mountains to help her (I can even begin to tell you how helpless I feel right now), I sat down last Sunday morning and just stated emailing EVERYBODY! Oprah, Dr. OZ, Sanjay Gupta, my local news channels thinking maybe someone would contact me and say they new of someone that could help.

NEVER could I have imagined what would have taken place, the next morning and since then. Beginning at 7 am, Monday my phone started ringing from all three of our local television stations. They wanted to do a segment on my daughter and our frustrations with finding answers and they did that, I believe with grace and sensitivity to our family. Within 12 hours of the local story appearing on TV Monday evening, we were contacted by all three major networks/morning shows asking us to be on the show the next morning (Tuesday morning). Coincidentally, I was yet at another appointment with Lauren with the pediatric ENT at CHKD who was trying to convince me that "this was all in our daughters head, that you should go home and tell her I found the magic cure for her, lie to her use trickery, then come back to my office in a few days and I will squirt saline up her nose and trick her out of it"! Hard to believe isn't it? I don't blame the doctors, thus far. I think they were trying to help, they just didn't know how. We had already been encouraged by other local physicians’ who had tried to help Lauren to seek out media attention to find anybody out here who could help because they had no answers and did not know who to refer us to. It was at that moment, as I stood in the parking lot of the children's hospital, full of emotion. frustrated, mad, disappointed, hopeless, helpless that the local reported contacted me and said the Today Show wanted to cover my daughter’s story and wanted to help us find us somebody to help her. The rest is “media history”.

The irony here is that WE DON’T watch TV! We have 11 televisions in our house but with the exception Lauren’s fascination with cooking and animals and the Food Network/Animal planet, that’s all we watch! If you would have asked me who the host’s of the Today show was or who Nancy Snyderman was, three days ago, I would have been unable to answer.

I sit here physically and mentally exhausted while writing this post. The media attention my daughter condition is getting is incomprehensible. I can tell you that it has opened doors for us to get in touch with Dr. Leckman and others who can possible help my daughter. We know that there are SO many other families out there who have suffered and are suffering and will suffer through what we are experiencing right now and I am determined to not only help my daughter but help every parent and child who is trying to find the resources they need to correctly diagnose and treat their child.

I know you will never hear the “whole story” in a 7 minute or less segment on national television but I hope I have helped answers your questions. I know you all are just trying to help my daughter and we thank you from the bottom of our heart.

You may contact me directly at laurensneezing@gmail.com


www.pandasresourcenetwork.org


Educate, Communicate, Cure

Together we can accomplish great things!


See our story here...

Treatment helps girl who kept sneezing

http://today.msnbc.m...y-today_health/

March 11, 2010: Doctors say a little-understood autoimmune disorder called PANDAS is the reason 12-year-old Lauren Johnson sneezed up to 12,000 times a day for months. Dr. Nancy Snyderman checks back in with Lauren, her family and her doctor to learn about her much-improved condition.

http://www.wavy.com/...g-girl-sick-too




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