2.5 years old itp hoping for good news

My son diagnosed at 13april and have ivig 1g/kg as his number is 3 and when up to 48 and in 6May he drop back to 8 and have another ivig bring him to 203...however 29may i found petechiae at his neck..next day the number is 50..then 38 next day...yesterday is 29...dr change to give steroid 3ml of 5mg daily...i am so worry...dont know that if because he was sick after ivig then make him drop...is that steroid really can bring him up...already near 2 months..some dr said if not recover within 8 wks is a big chance become chronic

My daughter (will be 6 years old next week) was diagnosed 3 months ago with her platelets at 2. One round of IVIG had them up to 550 within a week. However, a month later she was down to about 30, and she has bounced around between 15-30 for the past two months. we have not treated since the initial IVIG.

We are opting not to treat unless it drops back below 10. We do keep her on activity restrictions (no climbing or contact sports) when <30. She also got sick from IVIG, and I want to avoid prednisone as much as possible. We have been going to hematology at the local children's hospital every 1-2 weeks for draws. We went yesterday (count at 15), and due to our doctor's schedule, won't be going back for 3 weeks. I think when we go back, as long as they are >10, I am going to request draws no more than once a month. We can always get an emergency draw if we feel like her symptoms are out of control. That the other thing, my daughter feels totally fine through all this. She is not in pain, she's not a bleeder, and she has plenty of energy. I feel like she is a little more impulsive when her counts are low, but that's something we can handle.

We have also found that bruising and petechiae are not a great indicator of her count (to an extent). Last week, her count was 13 with very small platelets, and she had zero bruises/petechiae. This week it was 15 with moderate bruising and some petechiae. She has also had moderate bruising at 30. However, when it was 2, she had severe bruising and bloodshot eyes. So, we are learning that moderate bruising can't tell us the difference between 15 and 30, but maybe when the bruising is more severe we know it's in the single-digits.

We are still pretty new at this, but it is feeling less overwhelming these days. I hope that, before you know it, this is a distant memory for your little.

Water:

IVIG is a temporary treatment for most people. It usually only lasts days or a few weeks. Prednisone can sometimes work better and last a bit longer. I hope your son gets a good response. If not, you can consider not treating like MaeW.

Your doctor is wrong about the eight week chronic thing. A chronic label is usually given after a child has ITP for a year. Even then, chronic does not mean forever. Children can go into remission at any time and often do, even after a year. Don't let that scare you.

MaeW please let me know ur daughter progress later...pray for them

Sandi...isnt steroid when stop it number still dropping???

Not always. Sometimes the counts stay up or drop slowly. Everyone is different.

Sandi...i have a question...is that mean if bruise go away then platelet number rise?
I only see my son’s petechiae gone after pred...bjt the old bruise still there

It can take time for bruises to heal. If he hasn't gotten any new bruises or the one he has hasn't gotten worse, he's probably doing okay.

He has new one but are small size ...
And there’s old one still dark in color

Also why after ivig the bruise can fade within 1 day

It probably depends on how bad the bruise is and how quickly counts go up.

After 5 days pred his number went up from 29 to 80.....dr request 10 more days on pred before tapered off

That's a pretty good count. I hope it works for a while.

sandi...after 10days pred..my son lip show petecheia...and little bruise show in the spine...
is that possible even not tapering off..the pred will not work suddenly?

Yes, it's possible, but get a count before you worry about it.

drop to 68 from 80 yesterday....is that mean the pred not work or just bc he is coughing

Hard to say. The next few counts will tell more.

After 1more wk in 15mg pred he went up to 166..then dr adjust the dosage to 10mg for 1wk...however 1wk later drop to 93

That happens often with steroids. It's good that he responds to a fairly low dose, but it may not hold the counts when he tapers. Sometimes a slower taper can help.

Dr said 1 more wk on 10mg...is it count as small tapering...as dr said 15mg still hgh dosage for my son

No, that is not a slow taper. Does he take tablets or liquid? It comes in 1 mg pills and can be tapered by 1 mg at a time.

It may be a high dose for your son, sorry, I don't know what he weighs.

My son was 13.6kg when start on pred which in liquid form..now he is 14.6kg
Yesterday his count is 82 but dr still decide taper to 7.5mg