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This is the first I have heard about the "if you it gets triggered 3 times, it become chronic"...I totally believe it, but i had not heard anyone be that specific before.

 

i like this report alot better than the paper

 

yes and i do agree that at some point it does become chronic and i like the idea that she gives a number but it could be higher maybe something like 3-8 times.

I want all reading to know that my ds12 had complete remission 15 times with only a standard 10day course.

Now with more info i would have kept him on the abx 2 weeks the first time or 2. After that, do at least a month. Correction ...if it is a neurological reaction i would make the first course at least one month.

I just wonder if we ever fully eradicted a couple of the episodes that were 3 months apart.

Parents don't let the number 3 scare you, but i would do everything in my power not to let a second episode happen!!!

 

i also like the last statement

“You have a treatable and perhaps preventable form of mental illness,” she said. “While we’re debating, these kids could be being treated.”

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re: the reference to "3" episodes and it becomes chronic...

 

Most of our kids have had numerous blips, up-ticks in symptoms, do each of those qualify as an "episode" ?

 

The nature of the beast of PANS IS that it IS episodic, and kids can flare with simple exposure to illness in others--time and time again.

 

I would read that with a grain of salt -- just my advice.

 

I think the take away message is to promptly and effectively TREAT the symptoms with medically researched approaches to PANDAS/PANS -- as noted on the updated NIH webpage!!

____________________________________________________________________

 

We all know that left untreated, our kids lose years of their lives to this illness -- and the horrid behaviors/habits/compulsions can, of course, become "chronic"...thru habituation if nothing else.

-- don't take that as '3 strikes and you are out', however!

 

Rather, I think the message is to use effective, medical treatments for PANS/PANDAS and beyond that to use targeted therapies, and quickly, as needed, time and again.

Edited by T.Mom
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Joan -

 

We have been working for a year now to get our DS15 out of the horrible 2nd exacerbation that started over a year ago. My son has made improvements from antibotics but still unable to attend school. The OCD rules. He wasn't able to finish the 3 week intensive program because the therpy was too much for him at the time - we are 10.5 weeks post #1 IVIG. Seeing ups and downs. Did insurance cover the ivig's and how far apart did you do them. I am glad you posted - I was wondering about your son. Thanks, Angie

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