Anyone else heard of this w/ mito?

[Guest guest]

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]

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