2 year old with chronic ITP - rituximab

My two year old son just completed his 6th IVIG treatment in the last 5 months. His dr said we have to start looking at his condition as chronic and look at Rituximab as a long-term treatment consideration. Of course, this is very scary to think about when I read about side effects. Anyone have any advice or wisdom to share?

Sorry, I can't help you about the Rituximab. My son was in his 20's when he first got it after many years on Prednisone. More treatments are available now than when my son was young. Have you tried other treatments? I can give you the usual advice. Research. Ask questions. Write them down and take them with you to his appointments. Get a second opinion if you can. I didn't do that at first. I was afraid to question the doctor and I figured if I didn't know anything I wouldn't have to make any decisions. Then my ignorance put my sons life in jeopardy. My advice is to believe in yourself. You WILL figure out what to do! It WILL be the best thing for your son. You are already on the right track coming here and asking questions. Keep up the good work. Joan

Does your son bleed badly at low counts? I ask because it's normal not to treat children with any count unless they bleed.

Rituxan is a heavy duty treatment. One ITP expert in the UK said that she would prefer not to use it on children because their immune system is undeveloped and messing with it could do damage.

I was also about to ask what happens when your son doesn't get treated - does he bleed badly (more than bruises) and how low does his count go?

Five months is not usually considered chronic, and I think that most drs prefer not to treat until at least the 1 year mark if possible. Not treating is usually both acceptable and safe. As Ann says, rituximab is quite heavy duty for a small child - if you are thinking of going down that route, I would recommend at least getting a second opinion first. I am guessing that you are in the UK, as you called it rituximab - if so, the ITP Support Association should be able to help you with some recommendations for doctors.

Good luck

My son did Rituxin about 3 weeks ago. It took me about 6 months to finally agree to it because I was fearful. Funny thing was he reacted fine to that whereas he had bad reactions to IVIG and Win RO. I was so hopeful it would work as it was the 1st attempt to treat the disease verses the symptoms. His numbers didn't budge...he's been at 10,000 down to 4,000 during and after the treatment. I would recommend it to anyone only because it is one if not the only way to essentially fix the problem of ITP. The others just treat the symptoms in hopes the child will outgrow the disease.

One more thing after reading other replys, If you son has only had it 5 months I would wait...there is hope for him. Im surprised they'd do so many ivig's so soon...what are his numbers? Was he having active bleeding?

Rituxan does not necessarily fix ITP. It can give remissions to some people, but generally, it lasts about a year.

Hi, just curious if you ended up doing the Rituxan. If so how did it go? How were the results/ side effects?