rituximab for IT & heart transplant

12yr old daughter not responding to IVIG or 50mg/day prednisone. Hematologist wants to use rituximab, heart transplant cardiologist does not want the drug in her system...how can I educate myself to be the best advocate for her?

her plt cnt is 21 on prednisone.

Christine:

1. A LOT of reading, but you could start here for this situation:

www.gene.com/gene/products/information/pdf/rituxan-prescribing.pdf

2. I have seen medical personnel differ in opinions before when there were conflicting medical issues. All you can do is decide which is the more serious of the two disorders and lean toward the opinion of that doctor if they are not working together. In this case, which would be more likely to cause harm? A potential problem with her heart or low platelets?

I know this is a tough decision, but there are also other treatment options. There is Decadron (stronger steroid), N-Plate, Promacta, Win-Rho and, the option of waiting another week or two to see if her counts bump up a bit more. How are her symptoms? 20k is considered to be an okay count and treatment is optional at that level. Rituxan doesn't work fast anyway (4 to 12 weeks), so there doesn't seem to be a 'hurry' factor here.

I can tell you right now that you will be an excellent advocate. You're her mother. Read and trust your instincts.