Rituximab for our 3 year old? Advice please!

Hi, haven't been on for a while. Don't know if any of you would remember me. Our youngest child just turned three this month - was dx with ITP April and autism July. Three weeks ago he had his fifth infusion. We're now at the sixth month since diagnosis and it was suggested to try rituximab if his counts don't stabilise within a couple of months. Our hospital usually doesn't try it until 12 months after dx though with his autism it's certainly harder to keep him safe - also he is non-verbal at present and has no understanding of what is happening when he is in hospital. He won't take any oral meds so it all has to be iv which takes a normal 6 hour procedure 2 days. He has only had prednisilone though has often reacted with raging and violence within an hour after the steroid is given for two days in hospital and therafter and the pole opposite of complete lack of energy. I don't know what other symptoms he feels as he can't tell us - we have to guess how he feels by his behaviour. Not always accurate. Count reached only 93 two days after the ivig and is 51 and currently falling - again. The doc I spoke to about rituximab made it seem rather good, a new option though if his count was low enough he'd still have to have ivig. I truly wonder after reading some posts about it how good it would be for a non-verbal child with little understanding to get something that could possibly be even worse. It was suggested to not wait te full 12 months but to try it sooner. A number of posts Iv'e read it seems to have been given very early after dx. Why is that? ..any advice?

I'm sure others will chime in with opinions. Hopefully you have a good relationship with the hematologist you're working with. My only suggestion would be to make sure that your hema knows about the recent studies that low dose rituximab is just as effective as standard dose rituximab (for ITP in adults). A single infusion seems to be just as effective as 4 infusions in the studies. Here's a link to one of the studies www.haematologica.org/cgi/content/full/92/12/1695

I'm of the opinion that less is better when it comes to the more serious treatments (when the result is likely to be the same).

The decision on when to give Rituxan seems to be up to the doctor and patients preference. I don't think there are any rules that it should or shouldn't be given at a certain time.

The Rituxan infusions shouldn't be any different than the other infusions he's had and will probably have even less side effects. I'm with Tamar though, I'd ask for the lower dose.