My sister was just found to have this disease. SHe is Downy Syndrome, 54 yrs old. They have sent her home to wait out the strokes. The only info I have is what it is called, why it happenes, and there is very littel to do. Granted, we will not take evasive measures on her, as the stress alone will do her in. But I also have no idea what to expect. They say she has clotting in her spinal fluid, from the brain bleed. And that she has brain swelling also. But that is all. That she will have strokes. I watch her 24-7. SHe is in hospital bed here at home. ANy info will help me. Sincerely MJS

They won't put her on any anti-coagulant therapy including asprin if there is bleeding into the brain if I read that correctly, otherwise she needs plenty of anticoaglants and there is strong evidence that asprin does not work in women as it does in men. Plavix or Aggrenox should be explored.

NO, she is not on asprirn. She had a brain bleed, and they are not sure when she may have another one. SHe also has brain swelling, though I think at this time it may have gone down, as she is responsive more and not into the come style sleeps. They have sent her home to just let things go, which I understand. They say she will have strokes, etc. I need someone who has been through this to help me through it. They predict eventual death, but cannot say anymore. Just that she will probably continue to have strokes. So far, since home only two minor ones I know of. It has been two weeks today since all this started. Just need more than the docs are giving. MJS

OMG... I can't even imagine what you're going through. My prayers are with you and your sister.
The only suggestion I have after reading your post is, if you're not getting the answers that you need, seek another opinion. One from an expert on this and one that will give you the information needed to give your sister the ultimate care she needs.

My continued prayers...

Mar