us

[Guest guest]

Both of my daughters and myself have low B Lymphocyte counts. While we all have

varying levels of IG and subgroup issues....the general feeling is that there is

a problem with the way B-cells are mounting an immune response...even

though...in my case....my immunoglob. levels are normal. Molly has low IgG2 and

4 sublclasses....Maggie has IgG4 sbclass problems and has almost triple the

normal for IgG2. DOes anyone know anything about this? Very curious??? We use

a different infusion center than UCLA although it sounds like we all may be

getting started on the Vivagam next week. It will be soooooo nice not to have

to spend the day at the infusion center every 21 days. The doc thinks that,

because we are still having significant and severe breakthrough infections, the

new med will provide a more consistant level of IG and that the preliminary

studies show that the kids with CVID with the problems that we are still

encountering do much better on the Vivagam. I am still learning...but what I

know is that the feeling is that we definately have a genetic linked disorder

because of our B cell problems that all 3 of us have. They want to do a T cell

study on me, thinking that even though my t cells are normal, certain ones of

them may not be working normally. They say it is not possible to test the b

cell function yet...but in the future. We are also getting set up by our

immunologist to have genetic testing done at St Judes. He has been in touch

with the doc that works with B Cell genetic linked disorders and they are going

to try to get us in on testing to find out why this is happening and what we can

expect for our futures.

Terri