Parent of a teen with ITP

My daughter was diagnosed with ITP January 2012. She is now 14years old. She has not responded to oral steroids or rituximab. She had a terrible reaction to winRho and really her counts only went up for about a week. Her platelet count is usually below 10,000. She does respond short term to IVIG and receives treatments when she has active bleeding problems which tend to be about every 6-8weeks. The hematologist wants to put her on a scheduled routine for IVIG (such as monthly). I am not sure I want her to do this due to side effects from IVIG causing her to be hospitalized for treatments. In order to tolerate the infusions, she gets them over 12hours. Just curious if anyone out there schedules IVIG treatments instead of waiting until there is active bleeding to treat. She is very athletic and has already given up all contact sports. She is at the age where she wants to be much more independent.. overnights with friends, overnight school retreats/competitions for debate, stuco. She also has problems with fatigue. Maybe scheduled IVIG to keep her platelets in a safer range would be better????

Also.... Splenectomy has come up as possible treatment along with N-plate. We are just not there yet.

Thanks... this is my first time posting but I have been reading posts for quite sometime.

Hi Lori

Welcome!

I just wanted to agree with you about splenectomy - it always seems to me like a really permanent solution to something that maybe only a temporary problem. Lots of kids get better from ITP at some point even after years, and in the first year it is still definitely possible. My own 14 year old son seems to have spontaneously got a load better recently after three and a half years of counts which have mainly been under 20. I don't know why, other than that he seems to have got a lot better on the only two occasiona that we have got near to treating him! I don't know whether or not it will last, but to my mind, it is a really good indication of why a splenectomy isn't a good idea.

IVIG is mainly used as a rescue treatment, so a regular schedule of use seems a bit strange although other people do seem to do it. However, I've read about a lot of people saying that its effectiveness diminishes with use, and you would maybe want to consider whether you really want to make the one thing that works for your daughter less effective?

Sorry, I don't have any good answers, but good luck with it

Ali

Oops, I meant to say she was diagnosed January 2011 (age 12).

There was a mum on this boards a few years back called XRAY001 (I think). Her daughter Danica used to get IVIg every couple of weeks for about 2 years. She finally ended up having a splenectomy which I believe is still effective. You might want to try searching for her posts?

Hi yes this past year I have had scheduled ivig treatments in the doctors office over five hours with Benedryl every two weeks but unfortunately it has become less and less effective but I do know its done

I'm an adult with ITP, but I can say that each time I've had IViG, it's given me a smaller bump in my numbers.

Because of that, and because I want to be able to use it if I'm in a serious situation and need the numbers higher fast (like a car accident), I only do it now about once a year. Actually, none this year yet.

Good luck with your decisions - I always feel for the moms and kids on here. It's been hard enough managing my own ITP, I cannot imagine what it's like to do that for a child. always remember we are here to help!