-Update/bleeding

[Guest guest]

Hi, .

Have any of the docs mentioned a cytopenia? Your posts made me think about

autoimmune issues...as they go hand in hand with PIDs.

Not long ago, my daughter's peds doc ordered a consult with heme because she had

petiachae (sp?) and platelets were hovering near low but not dangerous. The

hematologist attributed the blood irregularities to CVID and thought it was an

autoimmune aspect, rearing its head. She was not severe enough to do anything

else other than IgG replacement...which was encouraging. Obviously, Kelsey's

situation is different because she needs surgery right now (and I'm not clear

about her immune status). Was it Ursula that described how some patients

qualify for IgG before a surgery? Just makes me wonder...

Please keep us posted.

Dani's mom, CVID

[Guest guest]

Hi ,

Thanks for your input. I saw some additional labs today and learned that

Kelsey's platelets are actually elevated. Not significantly out of range, but

enough to make me feel a little nervous.

As for her immune status, it's really up in the air. Dr. Bleesing says that

he's afraid he's missing something with her. She has almost no NK cell

function, a severe MBL (complement) deficiency, borderline IG levels and her

vaccine responses are ok in some areas and non-existent in others. He says that

the best indication that her immune function isn't too bad is that she doesn't

have nearly the amount of lung damage as Conner did at her age. We have her on

prophylaxis for recurrent sinusitis, bronchitis, pneumonia, etc. We are trying

to hold off on IVIG for now, especially since her IG levels are in the normal

range, it would probably be a challenge to get insurance to cover it.

We see the hematologist next Wed, I'm sure we won't know much until we get more

tests back. I'm also trying to not think too much about the fact that Kelsey

told me tonight that she has been having night sweats for awhile now... always

something.

Thanks again!

(NEMO carrier)

Mom to Hayden (13-unknown PID), Evan (13-unknown PID), Conner (13-NEMO;

transplanted 8/17/07)

and Kelsey (12-unknown PID and NEMO carrier).

Wife to (unknown PID).

www.caringbridge.org/visit/smithkids