Re: Anyone else heard of this w/ mito?

[Guest guest]

I know that fibrinogen is a substance in the blood (I believe

produced by the liver but im not certain on that) that 'traps' the

platelettes and therefore allows clotting (think of a bunch of

strands of thread that form a fishnet over a cut and allow the

platelettes to clot up).... most often when theres clotting

problems, its related to low or abnormal platelettes, but with

normal platelette levels, you can still have clotting problems if

the fibrinogen is low or faulty.... i dont know what the cause or

treatment is, or wheterh it is somethign seen with mito though...

sorry! Hope you get some answers soon!

>

> 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]

I know that fibrinogen is a substance in the blood (I believe

produced by the liver but im not certain on that) that 'traps' the

platelettes and therefore allows clotting (think of a bunch of

strands of thread that form a fishnet over a cut and allow the

platelettes to clot up).... most often when theres clotting

problems, its related to low or abnormal platelettes, but with

normal platelette levels, you can still have clotting problems if

the fibrinogen is low or faulty.... i dont know what the cause or

treatment is, or wheterh it is somethign seen with mito though...

sorry! Hope you get some answers soon!

>

> 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]

Kim,

we have a similar problem but at the opposite end of the spectrum.

My kids develop too many blood clots and they have high levels of

fibrinogen. Our hematologist calls them their " snot clots " gross

huh?

but when you draw their blood these long stringy clots come out and

they are fibrinogen clots.they often clog uup the needle when we are

drawing their blood and clog their catheters. My son has had 4

pulmonary embolisms and a stroke due to htese snot clots,

Of course they are also protein C deficient which is a factor that

thins your blood and seeing as all three of my kids are affected by

this and all three have mito we strongly believe it has to be mito

related....

Hope all works out well for you and you get some answers..

if you have any more questions feel free to ask

[Guest guest]

Kim,

we have a similar problem but at the opposite end of the spectrum.

My kids develop too many blood clots and they have high levels of

fibrinogen. Our hematologist calls them their " snot clots " gross

huh?

but when you draw their blood these long stringy clots come out and

they are fibrinogen clots.they often clog uup the needle when we are

drawing their blood and clog their catheters. My son has had 4

pulmonary embolisms and a stroke due to htese snot clots,

Of course they are also protein C deficient which is a factor that

thins your blood and seeing as all three of my kids are affected by

this and all three have mito we strongly believe it has to be mito

related....

Hope all works out well for you and you get some answers..

if you have any more questions feel free to ask

[Guest guest]

> Hi ~

Thanks for the reply. I have never had to deal any fibrinogen,etc.

issues, so all this is very interesting. The hematologist told us

at our 1st visit that she would be a short term dr and now it is

looking like one more specialist to add to our list! Thanks again

and take care~Kim

>

> Kim,

> we have a similar problem but at the opposite end of the spectrum.

> My kids develop too many blood clots and they have high levels of

> fibrinogen. Our hematologist calls them their " snot clots " gross

> huh?

> but when you draw their blood these long stringy clots come out and

> they are fibrinogen clots.they often clog uup the needle when we

are

> drawing their blood and clog their catheters. My son has had 4

> pulmonary embolisms and a stroke due to htese snot clots,

> Of course they are also protein C deficient which is a factor that

> thins your blood and seeing as all three of my kids are affected by

> this and all three have mito we strongly believe it has to be mito

> related....

> Hope all works out well for you and you get some answers..

> if you have any more questions feel free to ask

>

[Guest guest]

> Hi ~

Thanks for the reply. I have never had to deal any fibrinogen,etc.

issues, so all this is very interesting. The hematologist told us

at our 1st visit that she would be a short term dr and now it is

looking like one more specialist to add to our list! Thanks again

and take care~Kim

>

> Kim,

> we have a similar problem but at the opposite end of the spectrum.

> My kids develop too many blood clots and they have high levels of

> fibrinogen. Our hematologist calls them their " snot clots " gross

> huh?

> but when you draw their blood these long stringy clots come out and

> they are fibrinogen clots.they often clog uup the needle when we

are

> drawing their blood and clog their catheters. My son has had 4

> pulmonary embolisms and a stroke due to htese snot clots,

> Of course they are also protein C deficient which is a factor that

> thins your blood and seeing as all three of my kids are affected by

> this and all three have mito we strongly believe it has to be mito

> related....

> Hope all works out well for you and you get some answers..

> if you have any more questions feel free to ask

>

[Guest guest]

Madison has very low fibrinogen levels. We now are to

> have an ultrsound of her liver but I have been told it is " probaly

> not " related to mito.

Kim,

I think that bleeding disorders are quite common in mito. Both of my children

have bleeding issues. My son has a lot of bloody noses and has had several

GI bleeds. My daughter has bruising and often looks like she is beaten. I have

issues with petechial bruising, especially if I wear cabled sweaters. Both

children have low von Willebrand factor, low factor 8.Son has been

diagnosed with mild type 1 von Willebrand disease and daughter is

suspected of having the same issue.

laura