Tim...6k

:sick: :blink: :S :side: :pinch: Yeah...up and down. emotions.
These guys are stabbing in the dark...quite literally. Tim hit the nail on the head. He said today, "They say they have an interest in ITP. That means they don't know what they are doing, they want to learn."
Well, what's happening is that they are trying to get Tim to hold a stable count above 50k without getting NPlate every week. It does seem that SOMETIMES he can go a week without it, meaning skip one week, but sometimes he can't. HE's just unpredictable. Its kind of making me nuts that the guy won't just follow Tim's previous protocol.

He wants to try another round of Rituxan. Anyone done that before where it hasn't worked previously (the first round)? He plans to do that an the Nplate simultaneously. Also, he wants to do a BMB the same day he starts the Rituxan...???? Anyone?

Stabbing in the dark? Its what it sounds like to me.

Also, anyone know if there will be any studies for a dose of less than one mcg per kilo of Nplate? If not why? It would be nice to try to wean below this dose rather than cut Tim right off of it.

They call it "practicing medicine." Sounds like they're definitely practicing on Tim. :sick: I'm a bit of a mama bear all the time. I wouldn't do well with that. Have you ever just told them what they're going to do (as in, you pick and they obey)? I have done that before (not just with ITP doc) and literally told them I'd take my money elsewhere until they did what I wanted. The guy threw his hands in the air and said, "fine, I'll give you what you want!" And he did. :laugh: Might try a strong boldness if there is something specific you want them to do for your boy and tell them to do it or you'll find a doctor who will. But I'm that way.

I think I remember at one time Ann from the adult side posting about only doing .5 mcg/kg. Not sure if she is still at this dose so hopefully she will catch this post. So sorry the drs arent following protocol! Wish they would consult with Dr Bussell or Dr Buchanon to get their feedback since theyre doing the pediatric studies on this drug. I also wish the drs wld stop combining so many drugs bec then it makes it hard to tell what really works! Hope Tims counts stabilize soon!

Yes, my thinking was that rather than do a full dose and then miss a week, I'd rather do half a dose every week. That way I think the count won't go so high and I'm probably more mindful than most about keeping a fairly low count while on Nplate.

How much say you have about the regime depends on the doctor of course.. and I self inject which makes it easier!

Thats really bad. They should try the half dose because managing with an up and down count is actually harder to manage than one which is constantly down. How do they expect him to know when he has passed the wrong side of the 30K mark and needs to stop doing risky activities? I guess it would be ok if once a fortnight never took him below 30K but that doesn't always seem to be the case for Tim.