Wednesday, June 11, 2008

IVIG and Zenopax Today

WBC 12.3
Hemoglobin 15.0
Platelets 334K
Weight 14.7 k
Height 88.7 cm = 34 inches

David is doing pretty good. His skin is still problematic, requiring topical and oral steroids. Dr. Weinberg said today that I should go to 2mls/twice/day (right now we are at 1.5, 1.5, and 1.2mls throughout the day). If David can tolerate that schedule and we see no skin flareups, then we will go to 4mls/once/day. Dr. Weinberg feels that if David's body can have somewhat of a "rest" from the steroids then he might have a chance to grow. Eventually, we would like to see him on steroids every other day (the on day being a large dose 13-15mg) so his body can rest on the "off" day and start growing. I have no complaints with this plan.

His current medications:

steroids (immunosuppressant)
Prograf (immunosuppressant)
Septra (prevent bacterial infections)
Isradipine (blood pressure)
Melt-away (can't remember the name but it's to control acid in the stomach)
Zenopax (immunosuppressant)
IVIG (Gamunex - immune booster)
Liquid Calcium

Dr. Weinberg said he appears to have recurrent acute GVHD. I'm not so sure about that. It's only recurrent because sometimes I use the topical steroids and sometimes I don't (rarely). Today I did not and his skin looked more serious. I think he is calling acute because he does not have the joint immobility issues or deep skin problems that bleed and itch.


Anonymous said...


Wishing you strength to deal with the frustrations of GVHD. Good luck in lowering the steroids.


Anonymous said...

My Name is Susan and my both my boys were born with WAS my first boy is Five and had his transplant when he was 10 months old and my second is 8 months he is in hospital now he had his transplant back in April. I have read some of your blog and your childern are very cute. I hope all is well and wish he over comes his GVHD soon. my email adress is as I have not got my Blog up and running yet. I look forward to reading more of your blog even though it is not nice to hear of more childern being born with this I must say it is nice to fined someone who might understand WAS and the transplant.I hope he comes off the steroids soon.