Disorders that cause bleeding in lungs

[lisad751]

I am wondering if anyone can help me. My daughter is 8 and has had recurring pneumonias, 10 in a year. We saw a pulminologist who did a bronc & lots of other tests. Long story short he found her lungs had blood in them. He cant explain this, all other tests were neg. Her ct showed calcified granulomas, and were told that could be from histo infections or recurring infections. Later we found out she has 2 different bleeding disorders, but no reason for why she keeps getting sick, she cant even fight off a cold. We have been told that the bleeding disorders she has would not cause the type of bleeding she had in the lungs. She is at a point now were it is like she is immune suppressed. Her sats are 95 even in ferfect health after albuteral, they rarely go above 95. Any ides?? We are going to a childrens hospital next week for a second opinion.

[PlateletGal]

Bless her heart... and yours. I can't imagine what you've been through and what you are going through. Which bleeding disorders was your daughter diagnosed with ?

[lisad751]

plateletgal,

thanks for the comments. My daughter was diagnosed with Hemophilia type B. It is more rare than the type A, which is what most people know about. Im assuming from your nickname........platelets.....you know a bit about it. She was also diagnosed with Von Willebrands Type 1 and a low factor 8 levels. Feel free to post any info or comments with anything you know about either.

[angela0211]

Hi i have two sons who has Hemophilia B also, i never thought that it could occur in women too, yeah it is more rarer than A, plus the fact that the cost of medicine is triple higher than factor 8.  whenever they have bruising or bleeding, their hematologist always advising to administer factor IX medicine from BAXTER, there are lots of brands but this one is safer since it is derived from animals not on human plasma plus the activity is much faster than using cryosupernate or fresh frozen plasma (blood product derivatives).  it is much accessible their in your country i know to find medicine like factor 9, in my case i live in the Philippines, most of the medicines are factor 8 and a few factor 9, but most of the time none.

thanks and godbless