Re: New Survey

[Guest guest]

Hi everyone,

This is a quick note, b/c I have to work in 5 minutes, BUT...... as I sat

down to write this the phone rang and it was SAM's Dr. and, I am so totally

thrilled, he said that sam's response to the pneumoccocal vax was good for

someone his age (640) was the mean and that he doesn't think he has

CVID!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He's still considered IgA deficient (as in less than measurable) and he wants

to re-check those levels in a few months, but, at least it looks like he

doesn't have what I have. Thank you God!!

As I've said, he's not as sick as many children with PID and seems to be

doing pretty well except for chronic infections that never get real bad, so

we'll be treating aggressively with antibiotics, but, no IVIG

It seems funny to say that I'm relieved abt. the " no IVIG " b/c , for me, I

was thrillethat I could take the IVIG and I would get better. But, he's not

as sick as me and if I don't have to put him through it, I don't want to...

Does this make sense?

SO, thank for all the support from you guys!

Anne- CVID, mother of Sam (IgA deficiencey, NO CVID)

[Guest guest]

Ursula,

Thanks for doing it. I was hoping to get more input from everyone before

you did it though. I really wanted it to be detailed with all the stuff

giong on, and not necessarily just hte chronic stuff but the one time

occurances too.

Am I reading it right though? It looked like 20 people had already voted

and 11 & have had sinusitus, 7% have GERD? It seems to me that those %

should be higher?

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,