Chronic ITP and nosebleeds

Hello,

My 12 year old son was diagnosed with ITP 5 years ago. His plateles have always been between 10-20,000. We have tried steroids, IVIG and WinRho with mixed results and his platelets drop right back when the treatments were stoppped.
I am just wondering if any of your kids have long nosebleeds? He does fine for a few months and then starts having frequent nosebleeds usually around spring, summer. We have had him cauterized a few times in his left nostril with the most recent being last Saturday. I am starting to get worried. Do any of you have any experience with nose cauteries? Thank you for your time.

My DR had crazy nosebleeds starting at 1 till this past summer. I would mention it to the DR but they were not concerned. Last yr when we found out about the TOP it clicked. This past summer her right nostril was cautherized twice. Seemed to do the trick. Then in her recent hospital stay the nurse woke me up to tell me she had had a nosebleed. It was on her left side. Just a few hours after having IVIG that had brought her platelets up to 48 from 22.
What's weird is that a few years before this ITP issue she had blood work done and she was normal. But she still had nosebleeds.

Thanks for replying. My son started having many nosebleeds when he was around 2 and he did not have ITP then. Since his diagnosis, he has had a few major nosebleeds but cauterizing always seemed to help and he used to be free of nosebleeds for a few months.
THis time, it looks like that even cautery is not helping as he had a nosebleed after only a week after cautery.
If you don't mind me asking, how old is your daughter and does she still have ITP?

She is 7 and we have been dealing with ITP for a year. Her platelets have risen to 181k (normal) and we go back to the hema in April.

My son was diagnosed August of 2012 with ITP he had nose bleeds prior to itp but it became worse after. he had nosebleeds more often after having ivig but his numbers were staying around 20k at that time and the ivig would put them up to 40k so I don't know if it was the ivig or the fact that they were at 40k that caused the nose bleeds his nose bleeds lasted up to 4 hours at times they have never cauterized them but it would pour out so fast that it was coming out of both nostrils and he would spit it out of his mouth they always seamed to happen at night and we sat in the er one time for 3 of those hours leaving before he was seen cause the bleeding stopped but we have gone almost 6 months with out a nose bleed but his treatment has changed he is now doing nplate witch is a shot his platelets are on a weekly roller-coaster one week they will beat 200k and the next 50k but for the most part the drs will change his dose when his numbers drop to 20k he can go up to a 10 on the dose of nplate he is currently at an 8 but has been their for a couple weeks now