Maybe you can help?

Hello all, I have a 22 month old with ITP, I posted this in children's section but since adults do IVIG and are dealing with ITP also thought maybe someone here had some advice?? Hi--Can anyone give any suggestions or experiences with this?? Ok, the very first treatment my little guy got was win-rho, he did rise to to 19, hours later was @ 11, so do IVIG, which gets him to 29, later 35, we are released...2 days later go for CBC get call from Dr, going back to hospital @ 11 again, for IVIG..While there do 2 rounds also start steroids, get to 20, go home with steroids, 3 days later @ 3..Sooo back in hospital, more IVIG and steroids can't get above 13, go to bigger hospital BMB, everything good, so released he had dropped to 8, in that 24 hours, again home on steroids, few days later @4. So he really hasn't responded to IVIG, we are not treating, tried win-rho again few weeks later NO result at all, He continues to sit below top 3..mouth getting horrible, We've gotta try something..So IVIG again, 2 rounds 12 hour infusions, this time home without steroids, 5 days later he @ 24..this has never ever happened, 3 days later still around 10 ( results weren't back but what she saw on slide she said about 10).. I have agreed before if it doesn't work I don't want him put @ risks to recieve the treatments, but now the only suggestion they are giving me is 6mp, Am I totally nuts for feeling the last response was very positive and rather try IVIG atleast once more before doing 6mp, everyday for atleast 6 months (assuming nothing bad happens and it needs to be stopped??) I guess whta I am asking is has anyone not responded to treatments at first and try again and actually respond? Does it sound like just maybe his body did try to respond or should I just hang it up, accept IVIG does not work and try something new?? I understand you can't tell me waht to do, but maybe suggest what you would, or have experienced??

Crystal:

I wouldn't tell you NOT to try IVIG, but I am saying that I wouldn't expect IVIG to start working better with subsequent treatments. Your little guy sure has some stubborn counts! Hang in there; I hope things get better soon.

My count went up to 24 with IVIG too and they called it a sub-optimal reaction and wouldn't try again as they said it would never work. Winrho didn't work for me either. I used to be given tranexamic acid for mouth bleeding. I don't know if they give it to children though but you might want to look into that. Maybe then you wouldn't need to treat. They tend not to treat children as aggresively as they do adults.

I AM A TEEN WITH ITP AND I HAVE HAD 3 TREATMENTS MYSELF. i HAD TO ROUNDS OF WIN-RO THEN ONE WITH IVIG. FOR THE IVIG WORKED AND MY NOW MY COUNTS ARE STAYING UP IN THE NORMAL RANGE. THERE IS NOTHING WRONG WITH IVIG. IT JUST TAKES ALOMG TIME AND MAY CAUSE AN UPSET STOMACH.