ConcernedMama

Latest Activity

1. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   NrsKarenRn, my twins have an appointment with our local Hemophilia Treatment Center in December. Thanks for your advise!

2. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   Hi princess, My 10 year old daughter has a diagnosis of hypodysfibrinogenemia, confirmed by two separate hematologists. My twins have had preliminary blood work that indicates they have the same condition. I have reasonably good insurance. There is n...

3. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   Wow! Thanks. I have spoken with NHF before and they never mentioned treatment centers. Maybe this is something that helps with people who have limited insurance coverage? We have Blue Care Network but have a 1500 deductible for specialist care and ho...

4. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   Thanks. I've seen that.

5. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   Thanks you guys. I did contact the HF years ago when my daughter was diagnosed and they help with getting tags and such and camp information. But the camp is outrageously expensive, I don't know how any parent can afford it. I wasn't aware you guys c...

6. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   Ok so I am focusing too much on INR? It was tested on all three kids, well more specifically the prothrombin time was tested, and that included INR. At any rate, the prothrombin time is elevated. For my daughter both prothrombin and thrombin times ar...

7. Help with understanding clotting disorder

   ConcernedMama replied to ConcernedMama's topic in General Nursing

   I think I just found an answer as to how she diagnosed my daughter as dysfibrinogenemic as well as hypo... "Patients with a decreased fibrinogen activity, but normal fibrinogen antigen, produce fibrinogen that does not function normally in the clotti...

8. Help with understanding clotting disorder

   ConcernedMama posted a topic in General Nursing

   I came across, while googling, a thread where someone asked about INR and Thrombin time, or protime. There were so great answers so I figured, why the heck not, I will just throw out my children's disorder and see if anyone has some helpful or though...