My daughter is 15 and newly diagnosed with ITP

Hello. My daughter has been dealing with low platelets for about 8 months now. I thought initially it might be low iron due to the headaches and fatigue but when she had her bloodwork done we found out her platelets were at 50,000. We tried the wait and see approach and she dipped to 35,000 and then started to improve about a month later to 62,000. We were told to wait 2-3 months to retest to make sure things were improving. Right around the time we were supposed to have labs drawn, she started getting headaches and the purple dots started appearing again. She started getting spontaneous bruising. When she had her blood drawn, she was under 10,000 and was admitted to the hospital for IVIG. She responded well to the treatments leaving the hospital at 62,000. One week later she was up to 373,000 and we were celebrating. A week after that she was down to 130,000. That was 5 days ago. She has started getting the purple dots again and she had to quit softball due to the huge bruises from being hit with the ball. She has a blood draw on Thursday and I am very nervous that it will be bad news. She is very active in sports and is currently at a volleyball day camp this week. She really loves volleyball and she has given up so much already. I guess I am wondering if it is typical for platelet numbers to drop so quickly after IVIG. The impression I got at the hospital was that it should carry her several months and beyond. We see the hematologist again in two weeks the day before we are supposed to take a trip to Florida to visit my mom. I have told her to put all the theme park tickets on hold because I am assuming the rides and roller coasters will be off limits. Any encouragement or advice would be much appreciated.

I am sorry to hear about your daughter dealing with ITP. It sucks! I was 16 when I found out I had ITP. I did the IVIG, but my counts never held for more than a couple of weeks and they would drop right back down again. I had a much better response to Prednisone. Have they mentioned trying that if the IVIG did not keep the counts steady?

Thank you for your response! She had steroids along with the IVIG. Her doctor says she does not like to use steroids long term in adolescent girls. I guess we will find out more when we go back in a few weeks and once we see the numbers on Thursday.

Hi Steph....welcome.

It is very common for counts to drop quickly after IVIG. It is a temporary treatment that usually only lasts days or weeks. There are other options.

Sometimes treatment decisions have to come down to a quality of life issue. If your sports are very important to your daughter, she can treat to get counts up high enough to play. You need to emphasize this with her doctor, but be aware that every treatment has side effects.