I've had a few questions since yesterday, so I thought I'd try to answer them.
1) If Elise's ITP is chronic, what does that mean? What sort of treatment will she need?
We really don't know yet. I know some of the treatment options for chronic ITP are IVIG, WinRho (another blood product), steroids, Vincristine (a chemotherapy drug), and splenectomy, among others. Some doctors also take a watch-and-wait approach to see if the body will go back to a normal platelet count without treatment.
2) How does she feel?
Fine. It isn't like anemia where she would feel weak or sick. She feels perfectly fine, so she has NOT been happy about missing camp this week. If she has to get IVIG treatment again, that is when she will start feeling bad.
3) How did you know the ITP was back?
She came home from camp Tuesday with a big, honkin' bright purple bruise on her knee. It was a really brutal looking bruise that should have accompanied some terrible injury. When we asked her about it, she said that she slipped and fell on a hike but got up and kept going. She said she didn't cry, and it didn't hurt too much. The description of the injury clearly didn't match the bleeding of the bruise. She also had a few small bruises on her elbows that weren't suspicious on their own, but when coupled with the knee bruise, they didn't look totally normal. When we looked her over, she also had a little bit of petechiae on her back near a small bruise. None of it would have sent us to the pediatrician if it weren't for our hypersensitivity to bruises ever since her first bout with ITP.
4) Could it be leukemia? (OK, so nobody has actually asked that one specifically to my face, but I know it is floating around out there, so I thought I'd address it directly.)
All indications point to no. Her red blood cell and white blood cell counts have been normal with every blood draw. The doctors do still feel we are dealing with ITP. They are just puzzled by the presentation, so they would like her examined more fully and treated by a specialist.
5) Why did they send you home? Shouldn't she be in the hospital with that low of a platelet count?
The real "danger zone" for a low platelets is a count under 10,000. That's when you have a serious risk of cerebral hemorrhaging. At 30,000-50,000 where she is, she has been given instructions to avoid any sport or activity where she might get injured, but she's not in any serious danger just hanging out here at home with us. Bored, yes. Bleeding internally, no. She will definitely deal with bruises and nosebleeds at this platelet count, but as long as she isn't doing anything too crazy, we don't need to worry too much (or so we've been told. We still worry though).
6) Will she be admitted for treatment tomorrow?
We don't know. If the doctor wants us to do a watch-and-wait to see how her counts move, then we may just come home. We are certainly preparing for an overnight stay with treatment, but we don't know anything for sure yet.
Recent Comments