Wednesday, March 23, 2005

ITP

So, Terran has been diagnosed with ITP, (Immune Thrombocytopenic Purpura).

ITP is a bleeding disorder caused when the body?s defense (immune) system mounts an attack and destroys healthy blood platelets thinking they are disease-causing agents.
Immune - the immune system is involved
Thrombocytopenic ? the blood does not?t have enough platelets
Purpura ? bleeding into the skin or bruising.

(EDIT: The "I" also can stand for idiopathic, which means 'of unknown origin'.)
It means he can't stop bleeding. He was diagnosed on Monday.

This past weekend, Terran, Mesa and I went to Maine to visit my Mom and family. On Sunday he awoke with a bloody nose. I could not get it to stop bleeding before we left around noon. I thought it was because he kept picking at it.

On the way home we had a great time and stopped at LLBean, and then had lunch at Gritty McDuffs, (a family brewhouse).









Then, when we got home, Terran took a bath and we noticed dark purple bruises on him. We asked how he got them and he said he did not know. His nosebleed still had not ceased.

I tried to get the nosebleed to stop before bedtime by asking him to put some tissues up his nostril for 5 minutes. It did not help. In the back of my mind I knew this was not right and that it should have stopped, but did not really think about it. I figured it would stop by the morning.

In the night he woke up and came into our bed. His nose was still bleeding and his face was covered with blood. I cleaned him up and popped him into bed. When we woke up, his nose had a big bloody mass in it so I took him in the shower with me in the hopes of getting it out. It seemed to hurt him, so I did not press it.

Then, when we got out of the shower, something clicked in my mind. The bruises and bleeding were related. Karrie got up and stated the same conclusion. I had to get to work, so I asked her to clean his nose out and apply pressure for 10 mins to stop the bleeding.

Later on at work, Karrie called and said she was taking Terran into the hospital. She had tried the pressure and it did not really work, and then Terran went outside with the girls to play. When he came back in, he had even more bruises. Since we had both come to the conclusion that the bleeding and bruises were related, this was enough to warrant a phone call to the hospital. When she described what was going on, they made him an appointment for that afternoon.

Now, as you can imagine, after receiving the call from Karrie at work, I started Googling 'bleeding' and 'bruising' and was getting pretty worried. It was hard to concentrate on work. The Googling yielded all sorts of information -- including that bruising was one of the symptoms of leukemia! Now I was freaking out. I also saw lots of references to ITP, and the symptoms were so similar that I was pretty sure that had to be it -- so that calmed me a bit.

A few hours later Karrie called and told me it was indeed ITP -- whew! The doctor had instructed Terran to start taking a steroid called prednisone to suppress his immune system for the short term. This will stop it from destroying the platelets in his blood and get his platelet count back up. Platelets are what enable one's blood to clot. His platelet count was 2000 -- the normal count is 150,000 - 400,000.

Now, a few facts about ITP are in order: In children, 80% - 90% of cases are acute and last up to 6 months max. No one knows what causes ITP, but it occurs most often after an illness, (Terran had the flu last week), or vaccination, (we don't vaccinate the kids). It is a disorder and not a disease. It is like hemophilia, only not genetic. (If you have hemophilia, you have it from birth).

More info here: http://www.itppeople.com/FAQChildren.htm

So it's Tuesday night now and Terran's nose has finally just about stopped bleeding. I have the humidifier going in the bedroom to help it out. He feels just fine and seems to not be having strong side effects from the prednisone. He's covered in bruises. He needs to be super careful and not run around. I can't even pick him up without bruising him.

He's shown and exceptional amount of maturity and understanding for the situation beyond anything I've ever seen before with him. I'm really proud.

We're keeping him busy with Lego, Bionicle, board games, drawing, movies, clay/playdough, etc. Anything that does not involve climing and running around. He had a tough time learning to swallow the pills, but we worked out a system where he takes it with a scoop of ice cream :) He's a pro now.

He'll have to take blood test pretty regularly to watch his platelet count. The treatment for the disorder is basically to keep out of harms way and getting the platelet count up. The
prednisone should reset his immune system and help him to do that. The drug is a short term thing.

So, send good vibes Terrans way. He's a great little guy.