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melanie

By melanie
in PANS / PANDAS (Lyme included)

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melanie Veteran

melanie

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PANDAS Foundation Launches "Got Strep?" Campaign

The PANDAS Foundation (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) has launched its "got strep?" campaign; designed to alert caregivers and physicians to the nontraditional ways that strep can present itself. Early intervention can prevent an autoimmune response that can cause mental and behavioral disorders in children including obsessive -compulsive disorder (OCD) and Tourette syndrome.

 

"Shockingly, there are as many children in the United States who are afflicted with obsessive-compulsive disorder (OCD) as there are with diabetes," says Beth Alison Maloney, the author of Saving Sammy: Curing the Boy Who Caught OCD and Founder of the PANDAS Foundation. "My son was destined for a life of hospitalizations and long-term placements in treatment facilities until we discovered that strep was the root cause of his OCD and Tourette's," says Maloney. "He is now fully recovered and has been symptom free for five years. I want to make sure that no other child suffers needlessly as he did."

 

The compelling case for strep-induced mental illness is reported in the article "From Throat to Mind," which appears in the January/February 2010 issue of Scientific American MIND. Top researchers believe that many cases may be linked to common pediatric strep.

 

"The Foundation's first goal is to ensure that no child is diagnosed with a mental disorder before strep is ruled out as an underlying cause," says Deb Curran, the Foundation President. To that end, the PANDAS Foundation has assembled an army of nationwide volunteers to distribute 50,000 "got strep?" cards. The 4 x 6 cards list the many manifestations of strep beyond the usual sore throat and fever. Distribution efforts begin this week and will target physicians, clinics, schools, day care centers and parent organizations. "We plan to bring PANDAS to the forefront of national attention and keep it there," says Curran. "This campaign is the first step."

 

For more information, please contact Maloney via email at info@savingsammy.net or visit www.pandasfoundation.org.

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jayjay Enthusiast

jayjay

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PANDAS Foundation Launches "Got Strep?" Campaign

The PANDAS Foundation (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) has launched its "got strep?" campaign; designed to alert caregivers and physicians to the nontraditional ways that strep can present itself. Early intervention can prevent an autoimmune response that can cause mental and behavioral disorders in children including obsessive -compulsive disorder (OCD) and Tourette syndrome.

 

"Shockingly, there are as many children in the United States who are afflicted with obsessive-compulsive disorder (OCD) as there are with diabetes," says Beth Alison Maloney, the author of Saving Sammy: Curing the Boy Who Caught OCD and Founder of the PANDAS Foundation. "My son was destined for a life of hospitalizations and long-term placements in treatment facilities until we discovered that strep was the root cause of his OCD and Tourette's," says Maloney. "He is now fully recovered and has been symptom free for five years. I want to make sure that no other child suffers needlessly as he did."

 

The compelling case for strep-induced mental illness is reported in the article "From Throat to Mind," which appears in the January/February 2010 issue of Scientific American MIND. Top researchers believe that many cases may be linked to common pediatric strep.

 

"The Foundation's first goal is to ensure that no child is diagnosed with a mental disorder before strep is ruled out as an underlying cause," says Deb Curran, the Foundation President. To that end, the PANDAS Foundation has assembled an army of nationwide volunteers to distribute 50,000 "got strep?" cards. The 4 x 6 cards list the many manifestations of strep beyond the usual sore throat and fever. Distribution efforts begin this week and will target physicians, clinics, schools, day care centers and parent organizations. "We plan to bring PANDAS to the forefront of national attention and keep it there," says Curran. "This campaign is the first step."

 

For more information, please contact Maloney via email at info@savingsammy.net or visit www.pandasfoundation.org.

I already have received my cards and I'm in the process of sending them out. (especially to the non-believers that I've met along this journey)

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DebC Collaborator

DebC

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I'm in the process of handing mine out as well. In fact, I followed Beth's suggestion and sent one to the Obamas along with our family's story.

 

I also sent one along with a similar letter to Dr. Kurlan and stated how much harm his webinars against PANDAS will do to PANDAS families:

 

"Our story and that of others I have gotten to know through this journey are my reason for writing to you today. Doctors who say that PANDAS does not exist are not taking into account that these symptoms were not present until a strep infection. The symptoms just suddenly appear and gradually go away with antibiotic treatment. Saying that PANDAS does not exist makes the life of a PANDAS parent and child more difficult as we then have to struggle to find appropriate treatment. I ask that you consider what you are teaching and discussing before your webinar as your actions may have an adverse effect on the lives of these children and their families. It is a difficult road that we walk."

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jayjay Enthusiast

jayjay

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I'm in the process of handing mine out as well. In fact, I followed Beth's suggestion and sent one to the Obamas along with our family's story.

 

I also sent one along with a similar letter to Dr. Kurlan and stated how much harm his webinars against PANDAS will do to PANDAS families:

 

"Our story and that of others I have gotten to know through this journey are my reason for writing to you today. Doctors who say that PANDAS does not exist are not taking into account that these symptoms were not present until a strep infection. The symptoms just suddenly appear and gradually go away with antibiotic treatment. Saying that PANDAS does not exist makes the life of a PANDAS parent and child more difficult as we then have to struggle to find appropriate treatment. I ask that you consider what you are teaching and discussing before your webinar as your actions may have an adverse effect on the lives of these children and their families. It is a difficult road that we walk."

I will be sending him one also. Adding that if he lived one moment of our lives, he would think differently.

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reactive Collaborator

reactive

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What is it that this guy actually says re PANDAS? totaly bunk? or just very strict parameters? is this written somewhere? just curious, I may have read it but don't recall. And who exactly is he?

Buster knows more about Kurlan than I do. But I did contact him by email 5 years ago when my son then age 4 was in crisis. He seemed helpful at the time, but I did not ask him about PANDAS only OCD stuff. I had been searching for a place to take my son as I could not see a psychiatrist for 8 months at that time, and as I said, we were in crisis (think Beth Maloney). I ended up finding a psychiatrist in Pittsburgh.

 

My opinion; Kurlan is a mainstream psychiatrist who does not feel PANDAS exists. I think he feels strep could trigger OCD and tic exacerbation, but I don't think he believes it could CAUSE it. This is from what I have read about his work. He is the most vocal and well known physician trying to "debunk" the strep connection. So, think of Swedo on one end, Kurlan on the other, and everyone else kind of in the middle.

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peglem Grand Master

peglem

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Excerpt from Buster's brief history of PANDAS (in the pinned "helpful threads")

Confusing TS subjects with PANDAS OCD subgroup

 

Despite all of this, in June of 2008, Kurlan and Singer published that their 2 year longitudinal study did not find any of the findings of Swedo or Kirvan. However, it appears that Kurlan was studying Tourettes children (i.e., individuals with relatively stable OCD symptoms) and Singer used rabbit brains for testing for cross-reactivity (despite Husby’s paper in 1977). Based on the very minor changes to OCD levels over the 2 year period, it certainly doesn't look like Kurlan had any PANDAS kids in his group.

 

Kurlan seems to be actively trying to disprove PANDAS.

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jayjay Enthusiast

jayjay

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I'm just curious, on the "Got Strep" cards, is there an asterick or a small disclosure explaining that subsequent exacerbations of PANDAS can be brought on by other insults on the immune system or a negative strep test does not always rule out PANDAS?

on one side it says...

 

OCD or PANDAS?

 

Then it explains PANDAS as being a subset of children who have OCD and/or tic disorders such as Tourette's, linked to strep even without typical symtoms of the infection.

 

The other side says know the signs and lists some symptoms.

 

You can see part of the card on www.pandasfoundation.org

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jewels Collaborator

jewels

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This is an article that some have given to schools before...

http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

 

Thankyou Vickie,

 

Alot of info. in that leaflet can be seen by the teachers, and they do bring me her writing book with the dramatic changes, from lovely neat writing to scribble, and her maths is even worse. They say things like "Is is having to many late nights?"

 

We have got to the point now of not mentioning PANDAS but just saying autoimmune issues. The school nurse has a plan setup, but is very negative of PANDAS.

 

Their biggest issue is the amount of missed school because of repeated infections. They now want drs notes for every sickness, when I should be concentrating on my dd. They have all access to hospital records too.

 

I'm going to print out the leaflet to give to them, to see if the penny drops, as it is so true to the condition.

 

Thanks Denmark - I'll let you know if they send me any.

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