Siblings

[dcmom]

Two things have come to my attention:

 

I have run across 3 to 4 families that have had two children with PANDAS in my short time researching. Since they think there is a genetic component I guess it is not that impossible that our other children could be at risk.

 

The other is, I spoke to a family from the original NIH study that had all of their children on daily prventative abx (to keep strep out of the house) until their pandas child went through puberty.

 

Do many of you put siblings on antibiotics? My pandas dd has an 8 yr old sister (who happened to have strep last week- which I can only surmise caused pandas daughter's symptoms to increase a bit). I am of course concerned for both of them....

[EAMom]

No prophylactic abs for sister. However, we do try to culture her about once a month...esp. if PANDAS dd is ramping or there are signs of illness with either child. Our ped has recommended taking out sister's tonsils since she tends to be a strep carrier and has largish tonsils. So far, sister does seem to clear with Azith. Apparantly, our ped thinks treating sister's strep carrier state a a few times yearly with Azith. is too much abs for her.

 

Did this family (the one with all the kids on abs) have IVIG or PEX on their PANDAS child?

[dcmom]

They had plasma exchange at the NIH, and ended up having pex at Georgetown U hospital with their other child about 8 yrs later. They felt it cured the first, and although it is soon, up to this point the second seems to be cured.

 

On another topic: when this family had the PEX it was done through a central line (this is where most of the risk seems to be), while researching, I saw PEX can be done through central line or a limb (central line being faster)- does anyone know if it has been done through a limb anywhere? (Seems like it would be an easier decision....)