Rituximab for a 2 year old

Hello,

My son has been battling ITP since November of 2011. The odds of recovery were supposed to be in his favor, +80%, but he has to be different I suppose. He doesn't respond well to IVIG and steroids are effective but extremely temporary. My son's hematologist now wants to start him on Rituximab, but I have definite reservations. The doc told us that when my son begins treatment, he will have to be hospitalized for a minimum of THREE days - to monitor for side-effects and what not. Reading from other people's experience with the drug, this does not appear to be the standard procedure. I was wondering if anyone else has gone through this with young ones, and if a three day hospital stay was required as well?

I'm at a loss. Please help.

THanks.

Rituximab after 5 months is very quick - what are your son's counts and symptoms?

He just got out of the hospital where he received IVIG on Wednesday. When he went in he had 14000, and then when he went in for a CBC on Friday, he had 13000. He has never responded well to IVIG and steroids are temporary fixes. The choice to treat with Rituximab is nothing short of terrifying for me as a mother, and the idea of a three day hospital stay seems inconsistent with other's experiences.

oh, the symptoms are the usual for a low platelet count - he's pretty banged up looking: bruises, petechiae, but no spontaneous bleed outs or anything like that. He's had one minor nose bleed since diagnosis and his gums don't bleed when we brush his teeth.

I haven't heard about 3 day hospital stays either - i thought it was given over a day, one day a week for four weeks. Sometimes, I think they only give two doses.

If you son doesn't have bleeding and he doesn't respond too well to steroids/IVIg, why have the doctors ruled out not treating at all and just watching and waiting. Its a feasible (non)treatment plan. Based on the statistics, your son still stands a good chance of getting better by himself over the next 6 months.

Our doctor just seems to want to treat treat treat, and I'm not medical professional, but it seems like all these treatments are administered "just to see," and none of them have any real impact. Wait and see seems quite nerve-racking for me, but at least doesn't involve chemicals or side-effects. The odds are still in his favor, and my husband and I have started giving him Limu juice. We are praying for a miracle and that he eventually grows out of it.

LOL - I am still waiting for that miracle for my son too! It will happen one day....

Whats Limu juice?

Limu is a seaweed extract and it's been used by some as an alternative cancer therapy. It is a superfood and supports just about everything good for the body. At this point, the idea of giving my son a superfood rather than more chemicals/steriods/human plasma seems like it should be at least worth a shot.

Have you thought of getting a second opinion with a modern haematologist who follows the newer protocol of only treating symptoms rather than platelet numbers?

I hate to see children being treated when it's not necessary because I've had a lot of the treatments myself and they are pretty much all horrible!

I agree with Ann. I would get a second opinion. Sounds to me like your hemo is over doing it with drugs designed for adults. For me, "wait and see" would be a lot less nerve wracking than giving my child Rituxin. Just my opinion, but these treatments seem so risky for a little guy.

I didn't know a thing about ITP when I was diagnosed 5 years ago, like you said, I was not a medical expert. But honestly, most of us here have had to become medical experts of sorts because its a rare disease and doctors don't have much experience with it.

My first hemo was over treating me with high doses of steroids. He had the idea that my platelets should be over 50K even though I had no bleeding symptoms with counts as low as 6K. The ITP wasn't a problem but the treatments were terrible! I couldn't go along with it anymore when he wanted to take out my perfectly healthy spleen. Thats when I had to do my research. I read on the Mayo Clinic website a warning about Itp that the treatments can be worse than the disease and I always remember that.

Anyway, I found another hemotologist who was soo much more gentle in his treatment plan, plus he listened to me and let me make decisions, he was just great. It made such a difference. My advice: take your time to make your decisions, don't be pushed into anything that doesn't feel right. That super food sounds yummy- Good luck