I was told by a blood doctor that my 13yr old son has lupus anticoagulant. It all started about a month ago, I took him to the hospital for a purple rash on his toe. 2 days later we were in a childrens hospital in the icu for 2 weeks because this wasn't really a rash it was tiny blood clots cutting off ciculation to, by this time all his toes, fingers, nose, and working it's way up his legs and arms. He is now on blood thinning shots twice a day, prednisone, and a blood pressure lowering drug because his left vertricle is enlarged. Does anyone have any experience with this lupus anticoagulant syndrome.

I have never heard of such a thing as Lupus Anticoagulant. I know it must be terrifying for you to know that your child has this problem. I am a Lupus patient and I do take a coated baby aspirin daily at the advice of my doctor.

I would get off the Prednisone as soon as possible. Do it slowly, with the doctor's knowledge. When I checked the Internet as to what it will do for you, I immediately told my doctor I was getting off it. He said we could try it. I was determined to get off and I don't think that I will ever take any of it again.

Irish

I have a Lupus anticoag. I have had clots in both lungs as well as deep vein thrombosis in my leg. I had to take prednisone to carry both my daughters long enough to deliver (both premies). I take coumadin for the rest of my life and used heparin injections for pregnancy. It is a controlable problem but, a worry as well. I also have a Protien C deficiency which adds to the clotting problem. All in all it is not so bad!

That is also known as Antiphospholipid Syndrome

See my web page
http://hometown.aol.com/amamail/ANTI2.html

Steve

[This message has been edited by moderator3 (edited 06-11-2001).]

Hi, I am new here, looking for information myself. I read your post. It sounded alittle familiar to me. I have just been diagnosed with Lupus. I also have inherited a blood disorder from my father. It is Leiden Mutation Factor 5. It deals with blood clotting problems, you may want to ask your doctor to get a blood test of your son. I don't know if it is that, but it might help. God Bless.