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.
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.
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.
reading your comment sounds so simular to what my mom is going through right now. im 15 years old aand my moms been going in and out of the hospital since my 6th grade year...shes been in the hospital over 38 times since then and im now a freshman. shes going through severe liver disease and its causing her kidney to fail.....alongside with all that her lungs are starting to bleed and shes at the point where her lungs are so bad that she breaths reverse from us meaning she breathes out longer than she breaths in because her lungs wont take it in....we have been wanting to do something about this for awhile but shes too overwieght to even be put on the list for a liver transplant. i thought i would share some of my story with you so you know your not alone and that it is tough...ive grown a lot having to go through it and trust me these times where you have to see or experience such bad news with ahealth issue or something else is your time that u absolutely need to bring up strength and faith so hang in there
My Son is in hospital with a similar condition-bleeding lungs. I am all in tears, which of course is not helping at all. But any way, what are the other conditions that cause this kind of condition? He is losing blood so fast and is weak. He was born premature and is a twin (2nd).0740 581 8801
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