Subject: Anyone else heard of this w/ mito? Anne

[Guest guest]

kim - my answers below in red. she might order an MRI but what would that look for related to her low fibrinogen levels? Who knows! Well my guess is they will look to see how the liver looks since it is the liver that makes fibrinogen. How was your son's fibrinogen low levels found? he had some uncontrollable bleeding while hospitalized when he was 4 and they did some hematology tests and found it to be low. Then they did some other tests and figured out that what he did make did not work correctly. at that time they treated him with plasma and then cryoprecipitate only when he had bleeds which was about once every 4-6 weeks. But by the time he turned 5 he was bleeding so much all the time and into his joints that he was placed on a schedule of infusions - at first 3 times/week and now 3 times/day. hat mito dr. so you see and has he been the one to say it could be related to mito? we've seen dr. shoffner (diagnosis) and then cohen for some follow up until sam was too sick to travel. now we consult with dr. jon wolff in madison, wisconsin. they have simply theorized that it is related to mito because in general liver dysfunction is common with advancing mito disease and the liver is what makes fibrinogen. Our docs have also postulated that there is some energy dependent coagulation process that we are all not smart enough to test for in 2005. They say this because sam and zach have progressive bleeding issues well beyond the severity that one would expect with their lab values. Sorry for all the questions. I just do not know how much my dr. knows about mito compared to the ones in Atlanta & Cleveland. I think that as long as your docs are willing to learn and be open to thinking about things and talking with others than it is ok if they are not experts. Our primary knew very little about mito before he started taking care of zach and sam. he was wise enough to know that he did not know a lot but willing to talk to others and read a lot. now he knows just as much of not more about the day to day care of mito than any of the experts do. where do you live? the key will be to find a hematologist willing to help you figure this out and to make a plan if she gets to the point of having a bleed or is going to have surgery. there are others with low fibrinogen that do well and never have spontaneous bleeds so hopefully she will be one of them. do you know how low the level was? anne

[Guest guest]

.. Our docs have also postulated that there is some energy dependent

coagulation process that we are all not smart enough to test for in

2005. They say this because sam and zach have progressive bleeding

issues well beyond the severity that one would expect with their lab

values.

Anne,

have the docs ever considered the clotting issues are due to the CDG?

CDG causes alot of clotting issues..

how did your latest test come out?