Sneezing girl on Today Show

[EAMom]

Here you go Michele,

somehow we have 2 sneezing tic girl threads going on! http://www.latitudes.org/forums/index.php?showtopic=5912

[laurenjohnsonsmom]

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

 

 

 

 

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.

[faith]

laurensmom,

hello and I'll be the first one to welcome you, altho I must admit your story did kind of baffle me.

 

may I clarify what you said, that it was Monday when you found out about somehting called PANDAS by someone who saw your daughters story on a local news show, and this is before the Today show? May I ask if you mean when you were on the Today show you already were aware of PANDAS? after trying to find info regarding this and what connection it could have for your daughter, you then e-mailed around and as you say, the rest is media history? ....

 

Personally that was what kind of baffled me, that in the 2 weeks that you searched and saw doctors that you did not find any information regarding this or realize that what your daughter had may be some sort of tic or ocd behavior? I did feel that info had to be conveyed to you somehow, someway. I think some here think that the info is not out there, but I personally feel it can be found, and find the 'real' problem is lack of DOCTORS and the MEDICAL COMMUNITY who are well versed in this, or at least slightly 'clued in', I've said it before.......did they not get the memo?....

 

Forgive me if I sound like a skeptic, and perhaps that is what I was trying to convey, But that is what didn't quite compute with me, so I think I understand?, that when your story was aired, you already did have an idea that your daughter may have a tic like sneeze/cough and that PANDAS was one possibility? I just couldn't believe there wasn't more to it than was shown in the '7 minute segment', I just felt there had to be more to it than how it was portrayed.

 

May I also ask if your daughter has ever had anything, however mild, that may have been recognized as a tic or ocd type behavior in the past?

 

Thanks for sharing your story, and for taking the time to give us more detailed info on this. You are right, it is exteremely frustrating for many of us here,who are desparately trying to help our kids, and who have been turned away from this time and again, myself included, having had knowledge of this more than three years ago, but was told by doctors who were 'in the know' about PANDAS did not feel my son fit the criteria at the time. And i can tell you weve gone thru umpteen tics, etc. since then. our connection to strep is not typical, so much harder to gauge.

 

We look forward to hearing of your daughter's recovery. thank you again.

 

best of luck,

Faith

[pixiesmommy]

I think I speak for everyone here when I say that we are sorry you had to end up here. I hope that we haven't scared you off... this board is a wealth of great people and fantastic information... and a great place to vent and just work through it all with people who "get it!" More later... I'm running out the door!

 

 

(((hugs)))

[kim]

L mo (hope you don't mind me shortening your name)

 

First a big warm welcome!

 

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!

 

That is just heart breaking and I hope you and your brave daughter did something to change that. I suspect you did. I wondered what the "40" known cases referred to in the segment, was about. Psychosomatic or intractable psychogenic sneezing? Wow, it's just so wrong that that was even suggested at this point!

[EAMom]

L mo (hope you don't mind me shortening your name)

 

First a big warm welcome!

 

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!

 

That is just heart breaking and I hope you and your brave daughter did something to change that. I suspect you did. I wondered what the "40" known cases referred to in the segment, was about. Psychosomatic or intractable psychogenic sneezing? Wow, it's just so wrong that that was even suggested at this point!

 

I wonder how many cases of "intractable psychogentic sneezing" were actually undiagnosed PANDAS (or other tics)?

[Buster]

First and foremost, thank you for your post and in particular for being the parent we all try to be -- getting the best help for your kid.

 

There is lots of useful information on this site. In particular, you might find the history of PANDAS research helpful at:

http://www.latitudes.org/forums/index.php?...amp;#entry36300

 

Most of the parents on this panel arrived here by luck. In our case it was after the 20th call to find a psychiatrist that could treat a 7 year old with a sudden onset eating disorder and body morphology problem where the psychiatrist mentioned "have they done a strep test" -- What??? We had never heard of PANDAS before that.

 

Our daughter presented with a very odd movement disorder where her right hand touched her stomach, her sternum, then the back of her hand touched her chin and this would happen over, and over again. It was somewhere between a tic (rhythmic) and chorea (arhythmic) but mostly was a compulsion. She presented with very severe OCD that was inhibiting her from eating -- this was the scariest aspect. I mention this because after months of trying different things we were able to have a breakthrough from help from other parents on this forum.

 

The bottom line is let us (the panel) know if you have questions that you want a parent's perspective on... We have all spent an enormous amount of time helping doctors find informative articles and actually get beyond some of the provocative titles to look at the actual research and findings. You are already linked with great researchers so that part of this forum may not be useful to you -- however, the second aspect of finding a set of parents who really, truly know what you are going through and the incredible emotional drain this disease and the fight takes on our children, ourselves and our family -- well, we're all here for you.

 

Best regards,

 

Buster

 

 

 

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.

[Megs_Mom]

Hi Lauren's mom! Welcome. Thank you for posting about your story - ever since I saw your daughter on TV< I have been dying to hear the "non-media" version of your story. I'm so sorry that you are here, but am frankly thrilled that you are finding answers for your daughter only 2 weeks into your search! I cannot tell you how excited your story has made many of us. Not only am I so glad that a child is getting immediate treatment - but coming on the heels of Saving Sammy - to have another child's story in the news, continuing to raise awareness - it feels like this disease may finally be getting some traction. I would do almost anything to have doctors have some level of awareness about what "sudden onset OCD or Tics" actually means, and stop telling parents to do things like use saline spray & trickery! I am thrilled that you have such faith in your child to continue to take this quest to the media. Great job - we are rooting for you!!!

 

I'll also tell you from experience, that many many kids find medical answers. Our daughter presented with overnight onset of severe OCD, sensory disorder and separation anxiety. She's doing extremely well now & is back to being a happy confident kid. I'm sure, coming so quickly for Lauren, you will find the answers to help her asap. All my best - Susan

 

and here I am...

 

 

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.

[laurenjohnsonsmom]

You took the words out of my mouth. If you read the few case studies on intractrable psychogenic sneezing (and when I saw few I mean less than ten in the last 60 YEARS), this doctors will try to convince you that they had some sort of "emotional stressor" or trauma. Whatever!

 

L mo (hope you don't mind me shortening your name)

 

First a big warm welcome!

 

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!

 

That is just heart breaking and I hope you and your brave daughter did something to change that. I suspect you did. I wondered what the "40" known cases referred to in the segment, was about. Psychosomatic or intractable psychogenic sneezing? Wow, it's just so wrong that that was even suggested at this point!

 

I wonder how many cases of "intractable psychogentic sneezing" were actually undiagnosed PANDAS (or other tics)?