the whole theory

[smartyjones]

from another post: My theory (excuse me if this is wrong)....For most auto-immune dz's, you need to give IVIG monthly b/c the "trigger" or the "problem" is still there (b/c the body is reacting to itself). For PANDAS, the "trigger" is strep. So, if strep is gone from your child's body (and strep is not hiding out in the body even in small amounts ) then the IVIG seems to "re-set" to immune system and further IVIG's are not needed. However, it is possible, with enough immune stimulation (strep infection/exposure/possibly other infections) that the PANDAS can be "re-triggered" and another IVIG will be needed. This is why continuing abs is critical, IMO.

 

Swedo has said it's not really known how long these kids need to stay on abs. She used rheumatic fever as an example. They keep upping the age, 18 then 21, then 25...

 

this hits on something i can't quite seem to understand. i remember hearing from a swedo conference that she said something like, 'this is not a chronic autoimmune disease. it hasn't set the child's immune system off in some bizarre way.' i can't wrap my head around this b/c it seems to me that the whole issue is that the chid's immune system is reacting in a bizarre way and it is an autoimmune problem. can anyone help me understand?

[bronxmom2]

My understanding is that some of our kids have an underlying primary immune deficiency (PID) and some do not.

[Buster]

i remember hearing from a swedo conference that she said something like, 'this is not a chronic autoimmune disease. it hasn't set the child's immune system off in some bizarre way.' i can't wrap my head around this b/c it seems to me that the whole issue is that the chid's immune system is reacting in a bizarre way and it is an autoimmune problem. can anyone help me understand?

An explanation I used with my Dad was "this is sort of like an allergy to bee stings, as long as she's not stung she's fine... If she is stung then her body produces an antibody that is supposed to go after the bee venom, but seems to interfere with neuronal signalling in the brain too. For reasons we don't understand in some kids it takes a while for the reaction to go down. We think it's because the immune system thinks there is more bee venom out there so keeps making more antibodies."

 

So the chronic part seems to be that the B-cells have the wrong formula for creating an antibody to strep. It appears that neuronal tissue "looks like" the target for the antibody so T-cells keep indicating there's more stuff in the system until the blood-brain barrier closes. Once the BBB closes, it appears that the antibodies dissipate at around 4-6 weeks. If another illness occurs during that time and re-open the BBB again, then the cycle repeats (i.e., you don't need another GABHS infection). Of course no one really knows yet, but this is how I understand it.

 

Regards,

 

Buster