Re: Re: Abnormal Mitochondrial? Meagan

[Guest guest]

I think the reports I was looking at were from the labs as the did the testing. The test were I think about the staining. Obviously they didn't make any sense to me because they are in doctor terms. I will however ask if I can have a copy of the info. I think the official report will be something like what you got. I was being nosey as to what they wrote. I guess you could say I will go to any lengths to find out what is wrong with . Also in the fall I plan to go to school to be a nurse (not that I don't get enough of it now) and I am really curious about medical stuff (maybe I'll be a doctor someday). Ask your doctor for the lab reports if you want to see them. I don't see why they won't let us see them. I have a bunch of 's metabolic lab results.

Meagan Ochsner wrote:

What sort of test do they do that tells you what percentage of the mitochondria are abnormal? No one gave me that sort of information with Sophie's results. The report just says that she has Complex I, III, and IV deficiency.

Meagan, Mom to Sophie (11 months)

www.caringbridge.com/ky/sophiesong

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[Guest guest]

Hi,

JUst a thought. If it's in terms of staining, I know from experience

that you can have mitochondria that look normal on the staining but

don't function properly. That's why a fresh muscle biopsy is so

important. With a fresh muscle biopsy they can check the functioning of

the mitochondria. My son, Asher, had a fresh muscle biopsy and,

although the mitochondria looked normal on the staining, there were

considerable defects on the Complex III functinoing and partial defects

on the Complex I. Had we just had the frozen muscle biopsy, we would

have heard " everything looks normal " and not known that it was mito

causing the symptoms in Asher.

Anne R

Re: Re: Abnormal Mitochondrial? Meagan

I think the reports I was looking at were from the labs as the did

the testing. The test were I think about the staining. Obviously they

didn't make any sense to me because they are in doctor terms. I will

however ask if I can have a copy of the info. I think the official

report will be something like what you got. I was being nosey as to

what they wrote. I guess you could say I will go to any lengths to find

out what is wrong with . Also in the fall I plan to go to school

to be a nurse (not that I don't get enough of it now) and I am really

curious about medical stuff (maybe I'll be a doctor someday). Ask your

doctor for the lab reports if you want to see them. I don't see why

they won't let us see them. I have a bunch of 's metabolic lab

results.

Meagan Ochsner wrote:

What sort of test do they do that tells you what percentage of the

mitochondria are abnormal? No one gave me that sort of information with

Sophie's results. The report just says that she has Complex I, III, and

IV deficiency.

Meagan, Mom to Sophie (11 months)

www.caringbridge.com/ky/sophiesong

[image removed]

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[Guest guest]

I have heard of the fresh biopsy and from all the reading that I have done know that that is the way to go. However I live in Olympia, Washington and there are no facilities here that do the fresh ones. I'll wait til Monday and see what the doc says. Please keep us in your prayers that we get the answers we are hoping for. Thank you, AReckling@... wrote:

Hi,JUst a thought. If it's in terms of staining, I know from experience that you can have mitochondria that look normal on the staining but don't function properly. That's why a fresh muscle biopsy is so important. With a fresh muscle biopsy they can check the functioning of the mitochondria. My son, Asher, had a fresh muscle biopsy and, although the mitochondria looked normal on the staining, there were considerable defects on the Complex III functinoing and partial defects on the Complex I. Had we just had the frozen muscle biopsy, we would have heard "everything looks normal" and not known that it was mito causing the symptoms in Asher.Anne R Re:

Re: Abnormal Mitochondrial? Meagan I think the reports I was looking at were from the labs as the did the testing. The test were I think about the staining. Obviously they didn't make any sense to me because they are in doctor terms. I will however ask if I can have a copy of the info. I think the official report will be something like what you got. I was being nosey as to what they wrote. I guess you could say I will go to any lengths to find out what is wrong with . Also in the fall I plan to go to school to be a nurse (not that I don't get enough of it now) and I am really curious about medical stuff (maybe I'll be a doctor someday). Ask your doctor for the lab reports if you want to see them. I don't see why they won't let us see them. I have a bunch of 's metabolic lab results.Meagan Ochsner wrote: What sort of test do they do that

tells you what percentage of the mitochondria are abnormal? No one gave me that sort of information with Sophie's results. The report just says that she has Complex I, III, and IV deficiency.Meagan, Mom to Sophie (11 months)www.caringbridge.com/ky/sophiesong [image removed]__________________________________________________

[Guest guest]

The amount of frustation and distrust I have in our local childrens hospital (especially the lab) is unbelievable. Her muscle biopsy was done on Nov 29 but didn't get sent to Athena until Dec 16. Then Athena had some sort of problem with their testing so the report wasn't completed until March 16. I know I've read that the fresh biopsy is so much more accurate but I had such a hard time coming to the decision to do the first one. With the biopsy they did the report did say Complex I, III and IV deficiency. I also don't ever leave the doctors offices or the hospital without copies of all lab reports etc. She has so many specialists one of them (or sometimes all of them) seem not to get the reports. Several times I have given the docs results after calling the lab myself and asking for interpretaions from the docs on what they mean. Anyway, I was just wondering if there was some part of her biopsy that should have given me percentages on

function.

Meagan, Mom to Sophie 11 months (but she'll be the big 1 in six days!!!!)

www.caringbridge.org/ky/sophiesong__________________________________________________

[Guest guest]

Meagan,

I haven't recieved an official notification or anything. I think what I saw was the posting of the tests as they have come back? I'm not sure. They have everything on the computer and I just got a peek at something that I 'm not sure of what it meant. I skimmed through it as I was looking for key word that I had read about like 'ragged red fibers' etc..... Maybe they don't include some of that info. I wish I could be more help. Meagan Ochsner wrote:

The amount of frustation and distrust I have in our local childrens hospital (especially the lab) is unbelievable. Her muscle biopsy was done on Nov 29 but didn't get sent to Athena until Dec 16. Then Athena had some sort of problem with their testing so the report wasn't completed until March 16. I know I've read that the fresh biopsy is so much more accurate but I had such a hard time coming to the decision to do the first one. With the biopsy they did the report did say Complex I, III and IV deficiency. I also don't ever leave the doctors offices or the hospital without copies of all lab reports etc. She has so many specialists one of them (or sometimes all of them) seem not to get the reports. Several times I have given the docs results after calling the lab myself and asking for interpretaions from the docs on what they mean. Anyway, I was just wondering if there was some part of her biopsy that should have given me percentages on

function.

Meagan, Mom to Sophie 11 months (but she'll be the big 1 in six days!!!!)

www.caringbridge.org/ky/sophiesong

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