Subject: Anyone else heard of this w/ mito?

[Guest guest]

Hi Kim:My little boy has low fibrinogen levels. He also has something called dysfibrinogenemia which means that the fibrinogen he does make is shaped 'wrong" and therefore it does not work as it should to help him clot. Treatment for Sam has been cryoprecipitate infusions. "Cryo", as it is referred to is a portion of plasma that precipitates out when thawed after it has been frozen. It is very rich with clotting factors and fibrinogen. It is a blood product. With infusions we are able to raise Sam's fibrinogen levels and also replace the fibrinogen he makes that does not work. In Sam's case we have to treat it because he bleeds uncontrollably (he has other problems that cause bleeding aside from the fibrinogen issue). For your daughter, if she is not actively bleeding, they may feel it is best to just follow her levels and watch. What does the hematologist say? Ours assume it is somehow all related to Sam's mito. The liver, like any organ, can be affected by mito. The scans of the liver could show anything - fatty liver, enlarged, damaged...however, the scans may not show anything. The liver does make fibrinogen. Have they looked at things like her albumin level or her liver dependent clotting factors to see if these are affected as well? These are also made by the liver and would be affected if her liver is less than perfect. I hope this helps. Anne Juhlmann _____________________________ Message: 14 Date: Fri, 31 Dec 2004 03:36:05 -0000 Subject: Anyone else heard of this w/ mito?My dauhgter Madison(6yrs) has "soft" signs of mito and her labs have shown some indicators but nothing strong. I took her to the ped. dr b/c she was bruising and we had test done. The clotting test came back abnormal and we were sent to the hemo dr. She ordered more tests and Madison has very low fibrinogen levels. The dr.s (both genetic and hemo) do not know why this test is so low. We now are to have an ultrsound of her liver but I have been told it is "probaly not" related to mito. I was wondering if any of you have heard of fibrinogen. When the liver is affected from mito, how is it? We are having a fasting study done Monday to see if her seizures are metabolically induced. She is on zonegran to control the seizures that mainly happened in her sleep. The genetic dr. told me the fibrinogen might be something else and has no connection to Madison's other issues. Just wanted to get some input from other parent's that know mito. Thanks for any input! Kim

[Guest guest]

Hi Kim:My little boy has low fibrinogen levels. He also has something called dysfibrinogenemia which means that the fibrinogen he does make is shaped 'wrong" and therefore it does not work as it should to help him clot. Treatment for Sam has been cryoprecipitate infusions. "Cryo", as it is referred to is a portion of plasma that precipitates out when thawed after it has been frozen. It is very rich with clotting factors and fibrinogen. It is a blood product. With infusions we are able to raise Sam's fibrinogen levels and also replace the fibrinogen he makes that does not work. In Sam's case we have to treat it because he bleeds uncontrollably (he has other problems that cause bleeding aside from the fibrinogen issue). For your daughter, if she is not actively bleeding, they may feel it is best to just follow her levels and watch. What does the hematologist say? Ours assume it is somehow all related to Sam's mito. The liver, like any organ, can be affected by mito. The scans of the liver could show anything - fatty liver, enlarged, damaged...however, the scans may not show anything. The liver does make fibrinogen. Have they looked at things like her albumin level or her liver dependent clotting factors to see if these are affected as well? These are also made by the liver and would be affected if her liver is less than perfect. I hope this helps. Anne Juhlmann _____________________________ Message: 14 Date: Fri, 31 Dec 2004 03:36:05 -0000 Subject: Anyone else heard of this w/ mito?My dauhgter Madison(6yrs) has "soft" signs of mito and her labs have shown some indicators but nothing strong. I took her to the ped. dr b/c she was bruising and we had test done. The clotting test came back abnormal and we were sent to the hemo dr. She ordered more tests and Madison has very low fibrinogen levels. The dr.s (both genetic and hemo) do not know why this test is so low. We now are to have an ultrsound of her liver but I have been told it is "probaly not" related to mito. I was wondering if any of you have heard of fibrinogen. When the liver is affected from mito, how is it? We are having a fasting study done Monday to see if her seizures are metabolically induced. She is on zonegran to control the seizures that mainly happened in her sleep. The genetic dr. told me the fibrinogen might be something else and has no connection to Madison's other issues. Just wanted to get some input from other parent's that know mito. Thanks for any input! Kim