What is the definition of puberty in PANDAS treatment?

[parents4eyes]

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Edited September 8, 2010 by parents4eyes

[MomWithOCDSon]

In regards to PANDAS treatment, what exactly is the definition of puberty (in boys and girls)? Everything I read talks about puberty being in stages that lasts for years. If your child is past puberty, then they will not get PANDAS? Does that mean puberty has to have ended, and how do I know puberty has ended? IVIG must be done before puberty begins or ends? Does treatment have to start before puberty or complete before puberty completes? Our PANDAS doctor has not expressed any concern or urgency in treatment in regards to puberty. He has not spoken of puberty at all.

I don't know that there's actually a puberty "cut-off" for PANDAS, per se; it's just that, definitionally, it's a pediatric syndrome. I guess if it first arose post-puberty, it might be referred to as PITANDS, rather than PANDAS? There are some adult PANDAS walking around, though; a few of them participate in this forum.

 

There are some indications that hormones that surface around puberty can actually exacerbate PANDAS symptoms, and I think you're right . . . puberty is generally a multi-year process.

 

There is another thread here about PANDAS, puberty and treatment protocols; as I recall, Dr. K. in particular has concerns about the efficicacy of PANDAS treatment post-puberty, and yet on threads here you'll see that some 17, 18 and 19 year-old boys and girls are experiencing effective treatment. Now, is that because they are experiencing delayed or prolonged puberty phases? Or is it because, like most things regarding PANDAS, there are the "rules," and then there are the instances in which all the "rules" seem to be dashed to heck?!?!

 

Truthfully, I suspect that, for many kids, the conclusion of puberty can bring significant relief to PANDAS symptoms, if we could all just ride it out that long. Hormones can give you a run for your money, even without any additional extenuating circumstances, and they increase inflammation, which is a hallmark of PANDAS. So getting past that very active hormonal phase, along with the emotional and mental maturation, probably sees a lot of people feeling some relief from the major exacerbations our kids are experiencing pre-puberty and mid-puberty. Does that mean you "can't get PANDAS" past puberty, though? I don't know for sure, but I'd think not. I'd think it's just more likely both your body and your mind would be better capable of handling the onslaught by that point.