Proposal for a working definition and classification of PITANDS

[momto2pandas]

My guess - at that point you would need to control the chronic inflammation, much as you do in a state like rheumatoid arthritis. Maybe using IVIG, maybe using other anti-inflammatory therapies. Certainly hit bacterial infections with antibiotics, but you have a lot of inflammation that's not going to be due to bacterial infections, and then what else can you do?

 

This goes back to my old "top things I've learned" post about managing PANDAS over all of these years in myself (early Feb.) Gotta keep allergies under control, keep infections under control, and keep inflammation in general under control the best you can. For me, my regular regime of supplements/lifestyle, high vigilance re. infections, etc. has worked quite well over the years (granted I am ANCIENT compared to the kids you're talking about, hence probably quite different in many ways), but I am sure that there are others who would need more aggressive therapies.

 

 

So, if many of our children hit PANDAX status...what is the treatment then? If they are reacting to any immune challenge (allergies, colds, whatever) then no antibiotic would be effective. Right? So, when they hit this stage..... wouldn't IVIG be the thing to do? If not...what would???

[smartyjones]

My guess - at that point you would need to control the chronic inflammation,

 

 

is it determined that inflammation is the problem, or is it interference of brain signals? or are you talking about inflammation in general and i'm thinking basal ganglia inflammation?

[wornoutmom]

This is my million dollar question right now, since my son's inflammation is confirmed now via PETscan. Can someone explain in layman's terms how IVIG helps reduce the inflammation?

 

 

 

 

My guess - at that point you would need to control the chronic inflammation, much as you do in a state like rheumatoid arthritis. Maybe using IVIG, maybe using other anti-inflammatory therapies. Certainly hit bacterial infections with antibiotics, but you have a lot of inflammation that's not going to be due to bacterial infections, and then what else can you do?

 

This goes back to my old "top things I've learned" post about managing PANDAS over all of these years in myself (early Feb.) Gotta keep allergies under control, keep infections under control, and keep inflammation in general under control the best you can. For me, my regular regime of supplements/lifestyle, high vigilance re. infections, etc. has worked quite well over the years (granted I am ANCIENT compared to the kids you're talking about, hence probably quite different in many ways), but I am sure that there are others who would need more aggressive therapies.

 

 

So, if many of our children hit PANDAX status...what is the treatment then? If they are reacting to any immune challenge (allergies, colds, whatever) then no antibiotic would be effective. Right? So, when they hit this stage..... wouldn't IVIG be the thing to do? If not...what would???

[thereishope]

I'm still confused. I just can't wrap myself around the idea that someone has inflammation for a certain amount of time then there isn't something brusie like remaining after the inflammation goes down. Then that has to heal. Am I thinking there's more inflammation than there really is and no bruise can form on the basal ganglia?