RE: Can anyone help me to

[Guest guest]

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I am not a medical expert- and others on

this list certainly have more experience, but this is what I know as I

researched it SCAD-

can vary from being mild to severe and can be commonly found with mito.In other

words, a lot of mito kids can test positive for it, but maybe not be affected

in that true SCAD definitive way. A geneticist told me that these days SCAD can

be mildly affecting a lot of people and would show up a lot in a great portion

of the population if tested. I can tell you in my daughters case, her

diagnosis is complex 1 and the SCAD test came back positive. However, Dr. Cohen

has advised me he does not think IN HER CASE , it is true scad and to almost

disregard it. I also know that with true SCAD there are diet modifications recommended.

However , with any metabolic disease it can be very dangerous to alter your

daughters diet without the recommendation of a mito doc. I think in this case it is really

important that you have a mito

doc’s opinion on the test results forthcoming. I thought I have heard of

a name at MAYO of a mito

experienced doctor. If you are not seeing him already, perhaps someone on this

list can you fill you in. Hope that helps. How did he explain the Complex 1 to

you??

Suzanne man, mom to Zoe, 2.5 years, complex 1

From: concernforkierra

Sent: Wednesday, November 17, 2004

1:52 PM

To: Mito

Subject: Can anyone help me

I have posted here before. My daughter is

named Kierra. She had

muscle and skin biopsies done in July. After

thinking that she did

not have mito.

The doctors called me today and said that they think

that Kierra has complexI, but will have to wait

atleast 2 more weeks

for Mayo to confirm this. They told me that

Kierra has Fatty

Oxidation short change acyl coa dehydrogenase

deficincey. And gace

me some web site to go to for more info. Is

this something bad?

Anyone in the group know what this is?

Please help me. I try to

read info off web pages, but it is too much to

understand. If

anyone can talk to me about this in parent terms,

I would love it.

Thank you

Please

contact mito-owner with any problems or questions.