Re: eyelashes - Darla: mommy to Asenath

[Guest guest]

Actually, the first doctor to put us on the track of a mito diagnosis

was " fill-in " ped. that we saw when Abbey had a cold. He took one look

at her and asked us if anyone had suggested that she had a metabolic

or energy problem. We knew that she was delayed but had no idea why.

He said that her long eyelashes, open mouth, droopy cheeks and high,

narrow palate (roof of the mouth) were characteristic of mito

disorders. All of these were confirmed by Dr. Kelley at

Kennedy-Krieger who diagnosed her. She is a " poster child " for this

disorder and yet it still it took 2 years for someone to notice! It

astonishes me how little doctors know about this. I hardly " chat " with

anyone who has a child with complex I. How old are your kids and what

level of development are they? Abbey is three and is delopmentally @

18 mo. She just started walking but isn't talking yet. she takes

Trileptal for seizures, Carnitor and a Vitamin Compound. She isn't on

a special diet but does have sensory issues with the textures of food.

We haven't started potty training yet, using the not walking as an

excuse, now using the not talking! Anyway, would love to hear how your

kids are doing and how you are doing! E-mail me anytime at

brummysanders@...!

> > > I was just

> > > > wondering how many here think they inherited mito from their

> father.

> >

> >

> >

> > Please contact mito-owner with any problems or

> questions.

> >

> >