Sneezing girl on Today Show

[lss]

This little girl was on the Today Show yesterday, and then again the Today Show had Dr. Nancy on this morning mentioned a possible link to strep/tics, even mentioned Pandas, Dr. Nicolaides (Dr. who treated Sammy) and Dr. Jim Leckman at Yale.

 

This morning's segment showed the little girl reading the "Saving Sammy" book. Maybe Pandas wil get a bit more attention again on the TODAY Show!

 

Dr. Nancy said they would continue to follow this story.

 

 

 

http://today.msnbc.msn.com/id/33852290/ns/...y-today_health/

[faith]

That whole story sounded a little fishy to me. does anyone think that was a plant? It was so obvious it wasn't a real sneeze and that it was a tic. They say it was only for two weeks and she already went to so many doctors and a hypnotist that have no idea what is causing it? She had to come on a tv morning show for someone to tell her it was a tic? forgive me for sounding callous, but it was annoying that they kept saying it was a sneeze, it was so obviously not a sneeze, she was just making the sound thru nose and mouth. .... sorry, I just found the story wierd.

 

and if this was caused by illness and strep connected, they didn't say she had strep recently, so also kind of odd that she never had any syjmptoms such as this prior to 12 years old? and only got one tic as a symptom? no other decline or symptoms? I don't know, I just found it odd the whole story.

 

My best venture on a guess is that she recently had a flu shot, swine or otherwise, or a vaccination, perhaps gardicil? they didn't mention anything tho.

 

sorry, just being honest.

 

Faith

[ajcire]

Faith, I definitely agree that it should not have taken a whole lot of experts to see that is not a sneeze.... and clearly her reading the saving sammy book was setup.... but as far as a sudden onset... I no longer doubt anything. They did say it was possible she had other things that were missed and that ocd and tics run in the family with her parents (I might be wrong but thought they said that).

 

I do find it odd that it made the news the way it did though... and interesting that they aren't going to the top PANDAS doctors to rule that out but rather sticking with the Saving Sammy one. I was happy to hear them suggest just the idea that illness can cause this and it is another portrayal of possible pandas that is not the extreme ocd case of Sammy.. so that is good to see. Now they need to show a kid with some mild behaviorial/irrational/argumentative issues connected to strep to really make me happy.

 

 

That whole story sounded a little fishy to me. does anyone think that was a plant? It was so obvious it wasn't a real sneeze and that it was a tic. They say it was only for two weeks and she already went to so many doctors and a hypnotist that have no idea what is causing it? She had to come on a tv morning show for someone to tell her it was a tic? forgive me for sounding callous, but it was annoying that they kept saying it was a sneeze, it was so obviously not a sneeze, she was just making the sound thru nose and mouth. .... sorry, I just found the story wierd.

 

and if this was caused by illness and strep connected, they didn't say she had strep recently, so also kind of odd that she never had any syjmptoms such as this prior to 12 years old? and only got one tic as a symptom? no other decline or symptoms? I don't know, I just found it odd the whole story.

 

My best venture on a guess is that she recently had a flu shot, swine or otherwise, or a vaccination, perhaps gardicil? they didn't mention anything tho.

 

sorry, just being honest.

 

Faith

[faith]

yes, they did say "dad has tics" and "mother has ocd tendencies", and they also said "dad is 'ubersmart'".....

 

and yea, sorry, but making newspapers and a morning news show because she sneezed for only two widdle weeks? and dad has tics and doesn't see its a tic? I'm not even looking at the PANDAS angle here, just that they couldn't deduce the tic-like sneeze as opposed to a reall "achoo" type sneeze? I still wonder why they wanted to go on tiv? did they have an idea it was something like this and they couldn't get any doctor to concur? so they did it this way to get "hooked up"? If daddy is so 'uber smart", I'm sure he scoured the internet for some direction and the suggestion of PANDAS had to cross his screen. and they go on the same show that 'coincidentally' just had the Saving Sammy story on?

 

wow, I must apologize for my skeptical, suspicious nature, but I did mention I am a New Yorker? (psst, Michael, help me out here )

I think I'm also feeling somewhat jealous that they found a way to get the doctors to actually 'come to them' (and bet they get free treatment too) rather than the wild goose chase we all have gone thru. UBER smart is an understatement. ....(squinting eyes in suspicious fashion)......

 

 

Faith

[Debbie1]

I must apologize for my skeptical, suspicious nature, but I did mention I am a New Yorker?

 

Faith

 

Faith,

 

Thanks for making me laugh when I am having a bad day.

 

Debbie

[Megs_Mom]

yes, they did say "dad has tics" and "mother has ocd tendencies", and they also said "dad is 'ubersmart'".....

 

and yea, sorry, but making newspapers and a morning news show because she sneezed for only two widdle weeks? and dad has tics and doesn't see its a tic? I'm not even looking at the PANDAS angle here, just that they couldn't deduce the tic-like sneeze as opposed to a reall "achoo" type sneeze? I still wonder why they wanted to go on tiv? did they have an idea it was something like this and they couldn't get any doctor to concur? so they did it this way to get "hooked up"? If daddy is so 'uber smart", I'm sure he scoured the internet for some direction and the suggestion of PANDAS had to cross his screen. and they go on the same show that 'coincidentally' just had the Saving Sammy story on?

 

wow, I must apologize for my skeptical, suspicious nature, but I did mention I am a New Yorker? (psst, Michael, help me out here )

I think I'm also feeling somewhat jealous that they found a way to get the doctors to actually 'come to them' (and bet they get free treatment too) rather than the wild goose chase we all have gone thru. UBER smart is an understatement. ....(squinting eyes in suspicious fashion)......

 

 

Faith

 

I get your point - I thought it was hard to believe that they think that is a sneeze (like from a cold!) too. And what we have all gone through is maddening - and expensive.

 

But I don't really care - if they are making a point, or want to be on TV, or really just had no idea. I don't even care if it a plot by the Russians to get PANDAS in the news You know? If that girl gets help & shortcuts a system that sucks (sorry, it just does) then more power to her. And if her story helps another 100 kids - then that is awesome. Even if it is not PANDAS for her - thousands of parents just heard about PANDAS again, as if it were an accepted illness. Honestly, if going on national TV would have gotten my daughter help back when she had debilitating onset and we were struggling to get through the day, and my normally happy child had not laughed or played in a month - heck I'd have done anything. We are 5 years into this, and just diagnosed. We were lucky we had such long remissions or my daughter would have lost her entire childhood. Somehow through luck and hard work, we are getting help. But my heart is breaking for all those kids that are not diagnosed, so I don't care anymore what it takes to get more awareness, more research, more help.

 

I had parents emailing me like mad today - about this show. Like some of them are finally starting to get that I was not making up the nightmare we have lived through - that it's real! So that for me, it is a big ole improvement. And it made me cry that they were talking about this like it is accepted - not some skeptical plot by crazy parents that can't accept mental illness - but a real possible cause of mental illness that we'd be crazy not to try to cure!

[Kayanne]

Actullay, they hooked her up with Dr. Leckman at Yale, and he is a top PANDAS researcher....he tried to get the IVIG study going for it, but couldn't get the funding. I was overjoyed to know that Dr. Leckman will be involved to help this family.

 

What I found outrageous was that Dr. Nancy never even brought up the idea of PANDAS in the first segment...she'd rather mention MUNCHAUSEN than PANDAS! This was weeks after the Saving Sammy Segment...does she even have a clue!!!

 

On the second segment, she sounds as if she believes in PANDAS much more than in the Saving Sammy segment, so maybe a conversation with Dr. Leckman has changed her mind.

 

 

 

Faith, I definitely agree that it should not have taken a whole lot of experts to see that is not a sneeze.... and clearly her reading the saving sammy book was setup.... but as far as a sudden onset... I no longer doubt anything. They did say it was possible she had other things that were missed and that ocd and tics run in the family with her parents (I might be wrong but thought they said that).

 

I do find it odd that it made the news the way it did though... and interesting that they aren't going to the top PANDAS doctors to rule that out but rather sticking with the Saving Sammy one. I was happy to hear them suggest just the idea that illness can cause this and it is another portrayal of possible pandas that is not the extreme ocd case of Sammy.. so that is good to see. Now they need to show a kid with some mild behaviorial/irrational/argumentative issues connected to strep to really make me happy.

 

 

That whole story sounded a little fishy to me. does anyone think that was a plant? It was so obvious it wasn't a real sneeze and that it was a tic. They say it was only for two weeks and she already went to so many doctors and a hypnotist that have no idea what is causing it? She had to come on a tv morning show for someone to tell her it was a tic? forgive me for sounding callous, but it was annoying that they kept saying it was a sneeze, it was so obviously not a sneeze, she was just making the sound thru nose and mouth. .... sorry, I just found the story wierd.

 

and if this was caused by illness and strep connected, they didn't say she had strep recently, so also kind of odd that she never had any syjmptoms such as this prior to 12 years old? and only got one tic as a symptom? no other decline or symptoms? I don't know, I just found it odd the whole story.

 

My best venture on a guess is that she recently had a flu shot, swine or otherwise, or a vaccination, perhaps gardicil? they didn't mention anything tho.

 

sorry, just being honest.

 

Faith

[coco]

I contacted the producer of the Today show a few days prior to the airing of the Saving Sammy segment and urged her to contact Jim Leckman and Yale or Denis Bouboulis -- to have either of them on the show with the Pandas story, since they are both local driving distance. I also emailed Leckman and Bouboulis with the producers contact info and urged them to try and "put some meat on the bones" to have more of a well-rounded impact. Maybe Snyderman and Leckman ended up speaking after all and he was able to "sway" her thinking, somewhat. I have never been a fan of hers, personally. She always seems to be so much on the side of big pharma and suspicious of other alternatives. Just my opinion.

 

Coco

[ajcire]

Oops.. .I didn't realize that.. For some reason I only caught that they were going to have her see Dr. Nicholaides (ack, probably killed the spelling of that).

 

 

Actullay, they hooked her up with Dr. Leckman at Yale, and he is a top PANDAS researcher....he tried to get the IVIG study going for it, but couldn't get the funding. I was overjoyed to know that Dr. Leckman will be involved to help this family.

 

What I found outrageous was that Dr. Nancy never even brought up the idea of PANDAS in the first segment...she'd rather mention MUNCHAUSEN than PANDAS! This was weeks after the Saving Sammy Segment...does she even have a clue!!!

 

On the second segment, she sounds as if she believes in PANDAS much more than in the Saving Sammy segment, so maybe a conversation with Dr. Leckman has changed her mind.

[P_Mom]

a little off topic...but, what does "uber" smart mean anyway??? I know she is meaning to say very smart...but...uber??

 

She has said it twice so far, and, I don't know why, but, it bugs me. Is it even a word??

 

Maybe it is and I am missing it.

[faith]

Kelly,

it means he's so flippin smart that he didn't know what a tic was when he saw one, even tho he supposedly has some tics........ .......

 

man, I gotta get off this 10 day cleansing fast that I'm on, I'm cranky and HUNGRY!!!!!........

 

Faith

[galien407]

a little off topic...but, what does "uber" smart mean anyway??? I know she is meaning to say very smart...but...uber??

 

She has said it twice so far, and, I don't know why, but, it bugs me. Is it even a word??

 

Maybe it is and I am missing it.

 

Uber is a German word for "super" or "over".. and you're right.. she's saying that the dad is super smart. Here's the background of the word from wikipedia..

 

http://en.wikipedia.org/wiki/Uber

 

Mary

[P_Mom]

Mary...thanks...now it won't bug me as much!

[Megs_Mom]

Ok, so I hate to be a naggy mom, and this is a reminder to me as much as anything - this child's parents may very well end up on this site in the near future, looking for help. Whatever the level of experience of a parent that is new to this forum, everyone is always very helpful and considerate as they learn more. There are no stupid questions - when we are hit over the head with this, we do the best we can. I'm sure there are moms that would laugh out loud about how long it took us to understand what OCD actually is. I thought spitting was a tic for a month before I understood that it was a compulsion and a habit tangled up together. I actually reprimanded my child for imaginary confessions and spoke to her very sternly about cheating - when actually she had Scrupulosity. We told her a million times to quit baby talking. She ran to her room in tears of frustration. If I could take that back now, I would. So to me, that sneeze is clearly a tic. But I am a different person now, than I was before PANDAS. I can't judge anymore what should be obvious to others that don't live in my house. My eyes widen frequently, and I have to bite my tongue and find careful words when I see clear OCD or tics in other children.

 

I love the humor on this site, but I just think we should keep that for those of us that can handle it - and leave the newbies out of it until they are past the point of panic. I want her to feel very welcome if she comes here - and that we are grateful for the publicity.

 

For some this is a mild disease - but for many it is debilitating to the point of severe anorexia and hospitalization - or being pulled out of school. One of our primary roles is to help each other. But just as importantly, this site stands as the portal for most parents to learn about PANDAS. When you google PANDAS, this site comes up the majority of the time.

[LNN]

Ok, so I hate to be a naggy mom, and this is a reminder to me as much as anything - this child's parents may very well end up on this site in the near future, looking for help. Whatever the level of experience of a parent that is new to this forum, everyone is always very helpful and considerate as they learn more. There are no stupid questions - when we are hit over the head with this, we do the best we can. I'm sure there are moms that would laugh out loud about how long it took us to understand what OCD actually is. I thought spitting was a tic for a month before I understood that it was a compulsion and a habit tangled up together. I actually reprimanded my child for imaginary confessions and spoke to her very sternly about cheating - when actually she had Scrupulosity. We told her a million times to quit baby talking. She ran to her room in tears of frustration. If I could take that back now, I would. So to me, that sneeze is clearly a tic. But I am a different person now, than I was before PANDAS. I can't judge anymore what should be obvious to others that don't live in my house. My eyes widen frequently, and I have to bite my tongue and find careful words when I see clear OCD or tics in other children.

 

I love the humor on this site, but I just think we should keep that for those of us that can handle it - and leave the newbies out of it until they are past the point of panic. I want her to feel very welcome if she comes here - and that we are grateful for the publicity.

 

For some this is a mild disease - but for many it is debilitating to the point of severe anorexia and hospitalization - or being pulled out of school. One of our primary roles is to help each other. But just as importantly, this site stands as the portal for most parents to learn about PANDAS. When you google PANDAS, this site comes up the majority of the time.

 

 

Well said!!