Hi All - I have been viewing these discussion boards ever since my 6 month old baby girl, Parker, was diagnosed with ITP two months ago, but just registered to post now. I am definitely in need of some advice, especially if anyone else has experienced ITP with such a young baby. Two months ago, when she was 4 months, she developed petechiae on her legs and we brought her to the ER, where we discovered her platelets were 4,000. We were transferred to Hope Childrens Hospital in Chicago, where she was treated with two doses of IVIG, counts went up to 38,000 two days later, and approximately a week after that we were at 116,000. One week later she was down to 9,000, they readmitted her and three rounds of IVIG were unsuccessful. She had a blood transfusion and a round of Win-Rho, unsuccessful. Throughout all four doses of those meds her platelets never went beyond 6,000.
They decided that before moving on to steroids, they were going to do a bone marrow biopsy, all came back well. She received a three day dose of high dose, pulsed steroids. Her counts went up to 38,000 again and we were FINALLY released after eight long days! One week later, they were back down to 15,000. They decided to treat her with a low dose of steroids this time instead. For pretty much a week and a half she was at around 70,000, then went down a bit to 44,000 until last week when she started developing petechiae again. Brought her in on Saturday and she was at 1,000! Luckily they decided to treat her as outpatient and started her on another dose of steroids. After three days we brought her in and her counts only went up to 5,000. We will bring her in again tomorrow and if she is not up they are going to try IVIG again.
So, of course, I have been a terrified nervous wreck the past two months! I am of course petrified of an ICH, especially with her crawling, pulling up, etc. in the next few months. I am so scared about her immune system being so compromised now b/c of the steroids, and all the other side effects that go along with long term use such as growth problems, etc. However, the steroids seem like a drop in the hat compared to the treatments they are talking about possibly using next.
We are seeing the pediatric hematology group and Christ and they are wonderful, but one doctor is talking Rituximab, another doesn't like that and is talking Vincristine or 6mp even. I cannot even fathom the thought of putting all these toxins into my baby girl's system, but at the same time with her platelets constantly going back down to under 10,000 we cannot not treat either!
Please, any advice or help you can offer would be so helpful to me. This is really, really hard.
