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Sneezing girl finally diagnosed .... with PANDAS !


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Hi :o)

 

Lauren is finally diagnosed - with PANDAS : http://www.wavy.com/dpp/news/local_news/Sn...ially-diagnosed :

 

"Sneezing girl officially diagnosed

Doctors say she has PANDAS

Updated: Wednesday, 02 Dec 2009, 6:32 PM EST

Published : Wednesday, 02 Dec 2009, 5:38 PM EST

 

Katie Collett

CHESAPEAKE, Va. - For several weeks, WAVY.com has been following Lauren Johnson, the 12 year-old Chesapeake girl who started sneezing in upwards of 12,000 times per day after suffering from a bad cold. Recently, Lauren was officially diagnosed with Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, otherwise known as PANDAS.

 

"Now we can actually treat it as something," says Lauren who is thrilled to finally have a diagnosis.

 

WAVY.com spoke with Dr. Rosario Trifiletti, a child neurologist treating Lauren. He explained the onset of PANDAS. "Following a common streptococcal infection, the most common of which people are familiar with, the strep throat from a few days to a couple of weeks later, there's a marked change in a child that gets this."

 

Trifiletti says those changes happen quickly. PANDAS symptoms include:

 

Cognitive inflexibility, difficult to reason with, as if stuck on an idea

Obsessive/repetitive/compulsive argumentative behaviours

TICS (repetitive vocalisations of body movements)

Tourettes Syndrome

Attention deficits and oppositional/defiant behaviours.

The good news? There is treatment for Lauren and other children who suffer from PANDAS.

 

"She was placed on antibiotics and has improved considerably," says Dr. Trifiletti.

 

However, there is some bad news.

 

"Lauren is at risk of getting this again, so we're probably going to place her on some sort of...a low dose of antibiotics, for a long period of time," says Dr. Trifiletti.

 

Lauren's family learned the PANDAS diagnosis is relatively unknown. It was discovered only 13 years ago meaning a lot of trial and error.

 

"If it doesn't work, you know, you cry and you go, 'Why? It doesn't work,' and then the next day comes and you try something else, you start something else until you find what works for your child," says Lauren's mother, Lynn choking up.

 

"People need to know about it. I think the more we know as parents, the more we're going to accomplish."

 

Dr. Trifiletti tells WAVY.com there could be millions of kids suffering from PANDAS, but only several thousand have been diagnosed.

 

Lynn Johnson says she's in close contact with other PANDAS parents, networking, sharing new research, and supporting one another. Their goal is to shine more light on the disorder. "

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This is major. Really huge. Its going to bring our community loads of needed attention.

 

 

Its about time

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I'm glad she got her diagnosis, but I also feel for the family. I remember when I found out it really was PANDAS. Relieved that I knew why this happening to my son. Scared that I didn't knwo what the future may hold. I hope she comes back here for support. It would be great if they helped spread the word, but we must all remember their first job is to get Lauren better.

 

What we can do as a community is to start contacting media outlets and use Lauren's Today Show story as an example. Thatway whomever reads the email with have something to associate PANDAS with. Explain how the word needs to get out and Lauren is an example of a child that could easily fallen through the cracks.

 

I will try to search out links to contact various shows an dsuch to make it easier. if we contact them in big numbers, we cannot be ignored.

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It is great that another story is out there. The more different pandas scenerios out there the more people will see it's not just if your child suddenly wakes up with complete ocd.

 

Now if I could just remember to NOT read the comments section on those type articles!

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Also it is important to note not all kids recover completely with antibiotics. I have always seen antibiotics as a protection against strep not as a treatment for the symptoms. I know not everyone agrees with me on this. However alot of the newbies on here are going with one or two episodes improved on anibiotics not the ten plus episodes we have gone through. The symptoms wax and wane and improve with time. I am trying to say maybe the antibiotics are helping but not curing the episode and it is more about the symptoms are saw toothed. We have definately traced this saw toothed pattern over and over again. I have never seen my son recover as Sammy did but maybe that is due to the fact he was never on more then 300 mg daily of an antibiotic after treatment for the strep. I don't want to be negative but it is the reality we have faced. He is never gotten completely better just periods of improvement unil the next exacerbation. I don't want the public to get the idea that kids will be 100% if you get them on daily antibiotics. If that was the case then someone would have published that study by now.

 

It is great that another story is out there. The more different pandas scenerios out there the more people will see it's not just if your child suddenly wakes up with complete ocd.
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Also it is important to note not all kids recover completely with antibiotics. I have always seen antibiotics as a protection against strep not as a treatment for the symptoms. I know not everyone agrees with me on this. However alot of the newbies on here are going with one or two episodes improved on anibiotics not the ten plus episodes we have gone through. The symptoms wax and wane and improve with time. I am trying to say maybe the antibiotics are helping but not curing the episode and it is more about the symptoms are saw toothed. We have definately traced this saw toothed pattern over and over again. I have never seen my son recover as Sammy did but maybe that is due to the fact he was never on more then 300 mg daily of an antibiotic after treatment for the strep. I don't want to be negative but it is the reality we have faced. He is never gotten completely better just periods of improvement unil the next exacerbation. I don't want the public to get the idea that kids will be 100% if you get them on daily antibiotics. If that was the case then someone would have published that study by now.

 

It is great that another story is out there. The more different pandas scenerios out there the more people will see it's not just if your child suddenly wakes up with complete ocd.

 

 

What I'm confused about is that the mother said she had only a cold in the weeks before. she told us herself that she was negative on strep. If doctor is giving her abx, it is just as a trial, I don't really see how she could be "diagnosed" as this is only one episode. If she doesn't have a current strep infection, I'd be surprised if the abx eradicated this girl's tic, the same as for many of us here who have had symptoms for some time now. Some may not agree with me either, but for me, it was the Gardicil and the Dtap vaccines (double whammy) that she got in the months before that triggered her sneeze/vocal/tic. I've been on these boards for years and hve tracked alot of information given by the parents here, I know this has happened to several here. I don't ask question after question for no reason. I got a book yay thick.

 

Faith

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I remember her saying that they were doing the Cunningham test.Those results probably aided in making a diagnosis.

 

There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information.

 

 

 

Also it is important to note not all kids recover completely with antibiotics. I have always seen antibiotics as a protection against strep not as a treatment for the symptoms. I know not everyone agrees with me on this. However alot of the newbies on here are going with one or two episodes improved on anibiotics not the ten plus episodes we have gone through. The symptoms wax and wane and improve with time. I am trying to say maybe the antibiotics are helping but not curing the episode and it is more about the symptoms are saw toothed. We have definately traced this saw toothed pattern over and over again. I have never seen my son recover as Sammy did but maybe that is due to the fact he was never on more then 300 mg daily of an antibiotic after treatment for the strep. I don't want to be negative but it is the reality we have faced. He is never gotten completely better just periods of improvement unil the next exacerbation. I don't want the public to get the idea that kids will be 100% if you get them on daily antibiotics. If that was the case then someone would have published that study by now.

 

It is great that another story is out there. The more different pandas scenerios out there the more people will see it's not just if your child suddenly wakes up with complete ocd.

 

 

What I'm confused about is that the mother said she had only a cold in the weeks before. she told us herself that she was negative on strep. If doctor is giving her abx, it is just as a trial, I don't really see how she could be "diagnosed" as this is only one episode. If she doesn't have a current strep infection, I'd be surprised if the abx eradicated this girl's tic, the same as for many of us here who have had symptoms for some time now. Some may not agree with me either, but for me, it was the Gardicil and the Dtap vaccines (double whammy) that she got in the months before that triggered her sneeze/vocal/tic. I've been on these boards for years and hve tracked alot of information given by the parents here, I know this has happened to several here. I don't ask question after question for no reason. I got a book yay thick.

 

Faith

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There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information.

 

 

If that is the case, than she is one lucky girl.... she has no ocd, no other issues up till now at 12 yrs old, then how could she have had PANDAS episodes in the past? I would think something would have been noticed. ... Does anyone else feel the vaccinations played a part? No one reporting this story is going to put that out there. I beleive its a good a possibility as any and also deserves equal attention from the media as PANDAS does.

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I do think the vaccinations may have played a part but I still think the media is kinda weird about voicing too many negative things about vaccines while they are trying to help sell the H1N1 vaccine.

 

When was the time table for the vaccines vs the virus vs the tic?

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I do think the vaccinations may have played a part but I still think the media is kinda weird about voicing too many negative things about vaccines while they are trying to help sell the H1N1 vaccine.

 

When was the time table for the vaccines vs the virus vs the tic?

 

 

the mother said it here on the forum that her daughter had those two vaccines in the last six months. She didn't say she had any flu shots, but that is a hunch of mine that it may have been in the mix as well. and don't forget, the Gardicil is given in increments of three separagte shots, I believe, so she may have gotten the first one, the second one and still had yet to get the last. don't really know exactly how it works, but its something like that. I know my doctor has said they wouldn't give the gardicil to their kids and perhaps I shouldn't post that here, but I am because it is the truth.

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What I'm confused about is that the mother said she had only a cold in the weeks before. she told us herself that she was negative on strep. If doctor is giving her abx, it is just as a trial, I don't really see how she could be "diagnosed" as this is only one episode.

Hi Faith,

 

I think it is technically referred to as a provisional diagnosis. I'm sure Dr. T did a full history checking for prior symptoms, checked for other tell tale neurologic signs and perhaps the improvement on antibiotics is swaying him towards PANDAS. Typically there was a preceding episode that shows up in a retrospective of medical records (as I think pretty most of the parents here can attest to -- ourselves included).

 

Dr. K uses short burst pred as a diagnostic tool since if the child improves it is likely auto-immune.

 

At this point, I'm just glad she's getting the word out and I really do hope that Lauren finds the calm that many on this forum have found post antibiotics.

 

Buster

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There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information.

If that is the case, than she is one lucky girl.... she has no ocd, no other issues up till now at 12 yrs old, then how could she have had PANDAS episodes in the past? I would think something would have been noticed. ...

 

In our own case, we missed the first two episodes when our daughter was 4.5. She had daytime urinary frequency and frequent handwashing until her hands were raw. The daytime urinary frequency, we took her in for a possible bladder infection but they found nothing. It turns out she was put on an antibiotic two weeks later for an upper respiratory infection and interestingly all the symptoms disappeared 2 weeks after that. We never made the connection at that time -- although it was in her medical history.

 

I bring this up because it's actually pretty easy for the early behavioral symptoms to be missed -- or rather we sure missed them in our child till all ###### broke loose in March 2008.

 

Buster

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I agree.. in fact so many of the early signs are just dismissed by the dr's.... those early eye blinking tics, weird phases kids go through....

 

 

 

 

There are others that say their children never had a + strep test. I think she said Lauren did have strep before.Perhaps this was not her first PANDAS epsiode, but mild ones occurred in the past and the parents just never realized it. At some point, we will probably get more information.

If that is the case, than she is one lucky girl.... she has no ocd, no other issues up till now at 12 yrs old, then how could she have had PANDAS episodes in the past? I would think something would have been noticed. ...

 

In our own case, we missed the first two episodes when our daughter was 4.5. She had daytime urinary frequency and frequent handwashing until her hands were raw. The daytime urinary frequency, we took her in for a possible bladder infection but they found nothing. It turns out she was put on an antibiotic two weeks later for an upper respiratory infection and interestingly all the symptoms disappeared 2 weeks after that. We never made the connection at that time -- although it was in her medical history.

 

I bring this up because it's actually pretty easy for the early behavioral symptoms to be missed -- or rather we sure missed them in our child till all ###### broke loose in March 2008.

 

Buster

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