Re: Digest Number 2707

[Guest guest]

Regarding the question about heavy, frequent nosebleeds: First of all, I am sorry your son is having bleeding issues. This sounds like a lot of nose bleeds to me and certainly something the doctor should be aware of. I'd really stress how often and how long they are taking to stop. The first thing they will ask is how are you trying to stop it - pinching the nose is what works best. If it is still taking up to 30 min even with pinching the nose that is an issue. My children all have bleeding abnormalities. Whether this is part of their mitochondrial cytopathy (they have a complex 1 and 4 defect in OxPhos) or whether they were unlucky enough to have 2 unrelated problems we don't know. We have an excellent team of hematologists where we live, some world renowned in bleeding disorders. My smallest child, age 7, has been discussed world wide and the consensus is "we don't know why he bleeds." One theory is that some energy requiring piece of the clotting cascade does not work - but it is not something anyone can measure in 2004. What I do know is that virtually every children's hospital has a comprehensive bleeding center with hematologists that are well versed in how to assess a child for bleeding problems. One thing that comes to mind is that a significant percentage of people have something called Von Willebrand Factor defect and it is largely under recognized by pediatricians and therefore un treated. Nose bleeds are often the only sign of the problem. Just because your child has mito does not necessarily mean that he could not also have VW so that might be something to rule out. Tests like PT, PTT, fibrinogen, clotting factor levels, platelet function tests, bleeding times...all of these might help. And as one mom mentioned - it can sometimes be as simple as a vessel in the nose needing to be cauterized. Whatever it is, I hope you get to the bottom of it soon. Bleeding issues are always frightening if you don't know the cause in order to stop it. Annewww.caringbridge.org/wi/zachsam

[Guest guest]

Anne thank you so much for this info we have been seeing a hematologist and we did a bleed time which was normal , but they are wanting us to get a ct scan of his nose and sinuses. I am now in the waiting period of this we go tomorrow to get this done . I know this may sound bad but it is nice to know there are other parents dealing with this. i appreciate everyones suggestions and input and knowledge. I am talking to hte drs about how to stop these i did try the vaseline but that did not work. Thank you again and I am hoping tomorrow comes out good. JennieAnne K Juhlmann wrote:

Regarding the question about heavy, frequent nosebleeds:

First of all, I am sorry your son is having bleeding issues. This sounds like a lot of nose bleeds to me and certainly something the doctor should be aware of. I'd really stress how often and how long they are taking to stop.

The first thing they will ask is how are you trying to stop it - pinching the nose is what works best. If it is still taking up to 30 min even with pinching the nose that is an issue.

My children all have bleeding abnormalities. Whether this is part of their mitochondrial cytopathy (they have a complex 1 and 4 defect in OxPhos) or whether they were unlucky enough to have 2 unrelated problems we don't know. We have an excellent team of hematologists where we live, some world renowned in bleeding disorders. My smallest child, age 7, has been discussed world wide and the consensus is "we don't know why he bleeds." One theory is that some energy requiring piece of the clotting cascade does not work - but it is not something anyone can measure in 2004.

What I do know is that virtually every children's hospital has a comprehensive bleeding center with hematologists that are well versed in how to assess a child for bleeding problems.

One thing that comes to mind is that a significant percentage of people have something called Von Willebrand Factor defect and it is largely under recognized by pediatricians and therefore un treated. Nose bleeds are often the only sign of the problem. Just because your child has mito does not necessarily mean that he could not also have VW so that might be something to rule out.

Tests like PT, PTT, fibrinogen, clotting factor levels, platelet function tests, bleeding times...all of these might help.

And as one mom mentioned - it can sometimes be as simple as a vessel in the nose needing to be cauterized.

Whatever it is, I hope you get to the bottom of it soon. Bleeding issues are always frightening if you don't know the cause in order to stop it.

Annewww.caringbridge.org/wi/zachsamPlease contact mito-owner with any problems or questions.