will the nih study help us....

[eljomom]

...just thinking/worrying out loud here. Thinking about the NIH study, and how they are only allowing children in who's symptoms are less than 6 months since starting. Is that because they feel it ONLY works well then? Or because they KNOW it works then (early), and want to "prove ivig works" and are sort of "working it" to make sure they can show that it works? My point is, if they do have positive outcome of this trial, will the next hurdle be to convince doctors/insurance that kids who have had symptoms longer than 6 months should still be given ivig? is the study just blazing the trail for those kids in the future who are caught early? Which is still wonderful. But will it truly help kids who have had symptoms longer?

Edited November 23, 2011 by eljomom

[NYCMom]

If I had to guess, coming from a research background, one strong reason would be to try to level the playing field as it were. Picking one time point or giving a time limit from onset might be a way to reduce variability in the data. It is statistically easier to glean cause and effect when the data is 'tighter'. Further out and you have to take into account a whole host of interventions/interactions as we have tried to figure out how to help our kids in many different ways with many different methods. Not to mention the adaptation our kids go through as they struggle and cope with their symptoms.

If the study can show strong statistical significance, it can then become a base for further studies that explore the effects of time, etc.

[thenmama]

xx

Edited March 28, 2013 by thenmama

[Iowadawn]

Perhaps this is in the other replies I haven't taken the time to read. Swedo is replicating the IVIG study that was done in 1999? and included 29 kids. The criteria is tightened up, I would assume, to minimize variables and muddy the results. The results then were great except with the tic cases. Again, they are tightening the criteria. Yes, they want to shut the naysayers up once & for all. For those who have joined the forum in recent months the whole PANS thing is also a way for the naysayers to save face. "Oh, I didn't believe in PANDAS, but PANS I believe in." From a doc who is in the know. I believe it will be very hard for the insurance companies to put up a fuss after, what I assume, will be definitive results.

 

Dawn