Hi Everybody! My 19 year old son just received his 12th infusion earlier this week and we have noticed that he bleeds..post-infusion, anywhere from 3 days to 2 weeks after getting the drug?? The bleeding is small to moderate and is dark red/brown..it usually stops after 2-3 bowel movements. He had an MRE 6 weeks ago that came back benign, showing absolutely no inflammation!
Just trying to figure out what this bleeding is. Trevor has infusions every 7 weeks because he gets symptomatic at about 6 1/2 weeks post infusion. Could it be that he actually has intestinal bleeding at 6 1/2 weeks (when he has some abdominal pain) and than receives infusion that will heal the bleeding lesions, and what we are seeing is old blood?? I don't know...anyone else's kids ever experience this. We see Trev's GE next week...I will mention it again, he didn't think it was anything to worry about at the last visit. Sorry, I know I have mentioned this in another post (mixed with my daughter's issues), it's just very frustrating, and he is alarmed when it occurs. Trevor is still on the standard starting dose of Remi..5mg/kg. Other than this, he tolerates Remi well, without any other complaints. Thanks! Kim
Just trying to figure out what this bleeding is. Trevor has infusions every 7 weeks because he gets symptomatic at about 6 1/2 weeks post infusion. Could it be that he actually has intestinal bleeding at 6 1/2 weeks (when he has some abdominal pain) and than receives infusion that will heal the bleeding lesions, and what we are seeing is old blood?? I don't know...anyone else's kids ever experience this. We see Trev's GE next week...I will mention it again, he didn't think it was anything to worry about at the last visit. Sorry, I know I have mentioned this in another post (mixed with my daughter's issues), it's just very frustrating, and he is alarmed when it occurs. Trevor is still on the standard starting dose of Remi..5mg/kg. Other than this, he tolerates Remi well, without any other complaints. Thanks! Kim