10,000..Rituxan...6MP...IVIG...So unsure

Hello..So as most of you know my 2 yr old was under 5 for almost 10 months, last month he had a count of 9, Monday it was 10. I see much improvement, he does not look nearly as horrible as he (normally would). I am thrilled to hear double digits even if is only 10!! For about 8 months they have suggested I try 6mp, I was not comfortable and kept putting it off. Now they are finally suggesting IF I WOULD LIKE, to try Rituxan. She said IF he was bleeding she would highly suggest it, however he looks good, never had a nose bleed ect.. So she feels waiting is still fine (I am home with him so if I decide to treat tomorrow that is fair)..OK so she says I can also still chose 6mp (this was another dr suggestion in first place, not her's) or if I would like I can TRY IVIG again. I honestly rather not treat if I did have to choose I know he has had about 8 IVIG infusions and did well, but highest was only 24 and lasted a couple days (so why out him through it??) Maybe just maybe after all this time these counts mean his body is SLOWLY slowing down and I won't have to decide?? I need HOPE!!! I also am understanding that the Rituxan doesn't seem to work well on the little ones?? I see AWESOME results in the adult section though..Poor little body...Any suggestions???

Crystal,

Why are you are considering treatment now because by the sounds of things, you and your doctor are both quite happy with watching and waiting. If he's been ok for the last 10 months then chances are he will continue to be ok, so why not keep the treatment for when/if he actually needs it? IVIG doesn't seem worthwhile for the rise that your son gets out of it, and I've read bad things about 6MP - it seems like a very harsh treatment for such a young child, especially one without real problems from ITP. Which leaves rituximab -the problem with that is that it has never really been properly tested on children for ITP, so no-one really knows what effect it has on a developing immune system, or whether it ever really properly recovers.

What I am trying to say (badly) is that if you are happy with the status quo, then why change?

Good luck with the decision, Ali

Great question..For all those months I was always told it still there if we decide. He would look horrible covered in spots, blisters in month, huge raised bruises...I am really not sure where the sudden change of talk came from (maybe because almost a year) His Hemo one who told me we ok doing what we doing..Last month he saw his Ped and she kinda pushed treatment..Her words were Yes there are risks to treatment but so is a 2 yr old running around with no platelets..(and I agree..BUT!!)

There are risks to a normal person crossing the road, but no-one suggests treating that!

I think you should follow your gut instinct and not be pushed into anything you don't want. I am in pretty much the same situation as you with my son - risks to treating, and risks to not treating. He's been fine for the last three years, and on the whole I am very happy with no treatment for him. There are two things making me consider treatment. Firstly at 13 he is getting much more independent and I can't keep watching him all the time. Secondly, he seems to be suffering a real adolescent testosterone rush at the moment. He takes stupid risks physically without any apparent perception of danger, and he also seems to get into scraps much more often. Even I think that a platelet count of 10 or so might be incompatible with someone who keeps getting into fights.

Good luck with Dougie, I sure hope if you decide to treat you find one that works well without bad side effects. He just had his first IVIG didn't he? Did he have a reaction?