New to PANDAS. What do I do?

[EAMom]

Hi Lmama,

this is a new webisite (by a mom who posts here once in a while...diana pohlman) http://www.pandasnetwork.org/index.html . It will answer some of your questions.

 

Note: the website is still "under construction".

 

Unfortunately, with PANDAS, there aren't easy and fast answers. IVIG can be considered a cure for many kids, but some will relapse afterwards (esp. if they get another strep infection)...and not all kids (esp. the ones with chorea or severe tics) will have a satisfactory response to 1 course of IVIG (pex might be better for chorea kids? my theory). IMO all PANDAS kids need to be on abs (I like Azith.).

 

You also can't count of you child "outgrowing" this, although some will improve with puberty.

 

I have heard of one PANDAS kid (who had pex or IVIG...can't remember which one) who got strep in her 20's and had another exacerbation.

 

I believe that the kids that aren't treated for their PANDAS will continue to have problems (ocd, tics, anxiety) into adulthood.

 

I am not really aware of any official studies that track these kids long term however.