new article on PANDAS (from Canada)

[EAMom]

Really good read!

 

http://thewalrus.ca/a-feverish-debate/

[peglem]

Thanks! Very good article!

[filinha1]

Yes, thanks! Good read and pass-on-worthy for relatives who still don't quite get it, i.e. "If it's 'real' then why is there still a controversy?"

[NYCMom]

Great article thanks!

[MomWithOCDSon]

Wow! What a good, thorough article! Thanks!

[dut]

thanks so much, what an excellent article for handing out... been looking for something that really covers the gamut for school etc and this is it, enough lay science and the personal side too and the bit on evolving RF is great.

 

Thanks

[MMC]

Agreed, really good article, thanks for sharing the link EAMom. Especially the history lesson of Sydenham's Chorea and RF. I was diagnosed with SC when I was 7...so, no big surprise to us that we have two PANDAS kids...it is heart breaking, but makes sense. If only all the doctors, from family physicians to the big-named high and mighty specialists could make sense of it, or admit to it...that would me happy and allow all our kids to get quicker, more complete treatment. It will take time. But, time sure does move slow when your kid is being controlled by PANDAS instead of his/her old self.

[norcalmom]

THAT was a GREAT article. Great overview of the theory, the history, the debate. I also learned a couple things. One is that Swedo is doing TWO rounds of IVIG in this study (looks like 8 weeks apart?)

 

And the other -

 

"IVIG is an approved treatment for PANS in Canada". Roadtrip anyone?

 

thanks for posting EAMom!

[rowingmom]

Wow! Two years ago our pediatric psychologist suggested PANDAS, but wouldn"t test titers. She said they would be high because of the strep infection DD had one month prior. We were told we could only get IVIG if DD was totally incapacitated, which she wasn"t, she was still walking.

 

I bet they are not treating PANS caused by lyme/bartonella with IVIG. We are not even allowed to treat lyme and it's coinfections with extended abx protocols in Canada. "When I visited, his supply of prophylactic antibiotics from NIMH had run out.....and Margo was having trouble convincing Sammy’s Edmonton pediatrician to prescribe them". I wouldn"t plan that trip just yet!

[tpotter]

Very even handed article. But, interestingly, they mentioned CANS but not PANS.

[EAMom]

Tpotter, they mentioned both:

 

In the summer of 2010, NIMH convened a meeting of forty-one experts, in an attempt to unify the warring sides. At the suggestion of the chair, Noel Rose, a specialist in autoimmunity at Johns Hopkins, it was agreed in advance that etiology of any kind would be dropped from the criteria. In fact, nothing definitive would be said about the cause of the illness. Instead, the experts would try to describe what the syndrome would look like to a physician confronted with it, and the meeting achieved some consensus that sudden onset set the condition apart.

A new definition was proposed that expanded on PANDAS: PANS, for “pediatric acute-onset neuropsychiatric syndrome.” Swedo hoped it would encourage physicians to investigate infectious origins for sudden-onset symptoms. “All you have to do is recognize the acute onset,” she says. “At that point, a definite diagnostic workup should be done.” For his part, Leckman lobbied for greater focus on the behavioural aspects. He also persuaded the group to drop tics as a major manifestation, and to add the strange eating restrictions many clinicians observed.

By the end of the two-day session, however, the discussion remained as polarized as ever. Harvey Singer, a professor of pediatric neurology at Johns Hopkins, considers PANDAS an interesting hypothesis but wants more data—in particular, definitive evidence of a causal link between strep and the condition.

Not long after the 2010 conference, a group that included Singer, Roger Kurlan from the Atlantic Neuroscience Institute in New Jersey, and Donald Gilbert from the Cincinnati Children’s Hospital Medical Center wrote a paper renaming the disorder CANS, for “childhood acute neuropsychiatric symptoms.” The report, which appeared in The Journal of Pediatrics, argued that CANS had numerous causes, and that they needed to be investigated. It advised that doctors faced with children showing sudden-onset psychiatric conditions should look beyond just evidence of strep. Further, the authors suggested that the PANDAS entity be “eliminated.”

[EAMom]

But they didn't mention the PANS white paper, that is true.

[qannie47]

My brother, who was a closet "naysayer", babysat my son two nights ago. My son was diagnosed two years ago, but because I kept him away from family, friends during "episodes", they were all a bit skeptical...I don't blame them. I have lived it, and it took me awhile to believe it. You can say that my brother was converted two nights ago. He saw first hand what Pandas can look like...The aggression, the repetitive movements, the rage. He tried it all...firm warnings, which lead to consequences, which of course did nothing....He took him on. He eventually tried a human body embrace to stop the chaos...of course, it made it worse. He apologized. He thought he could contain this, handle this....he found a different reality that was closer to my own. I could see by the look in his eyes, that there was a new level of understanding. I sent him this article. I plan to send it to others. I will pray for Pandas, and for all who need to have that eye opening moment where they believe...for those who can make a difference....a difference in our children's future.