XP - Help, 6 month old with severe ITP

XP - 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.

Although Colin was 18 months old when he developed ITP we have been in your shoes. It sucks and it is scary. We have tried vincristine, 6mp, steroids, IVIG, whin rho, etc. over the years. When Colin's in remission he is a normal "healthy" teenage boy. He has had no ill effects from the meds used and I fully trust his team of doctors. We go to both Boston Children's Hospital and Darmouth Hitchcock Hospital. If you are happy with your doctors and trust their advise, then listen to all options and take some time to digest it, investigate it, or talk it out. You will come to a decision that is right for you.

We have, over the years decided as a family to treat Colin at a level of 5,000 or under. He is a bleeder and we don't want to risk no treatment. At 14 he is able to voice some opinions about treatment and talk over his concerns with the doctors. We also pull him from school at a count 10k or under and limit sports under 20k, but we do all of this because of our own particular experiences, and it has come to us over time and trials. No one regimen will be right for all, weigh your options and love your daughter up. I suggest developing a treatment plan on your own with your family, then when an emergent situation arises you can look to that and make your decisions, kind of like a birth plan. It is not written in stone, it is just a list of what you would like done for your daughter's care.