Re: Joanne: info about Dr. SHoffner in Atlanta

[Guest guest]

Hi, Joanne-

I¹m in Northern California, and though I¹ve been diagnosed with CPEO for 14

years, only got the mito diagnosis last week- so I¹m pretty new to this.

I¹d love any information you can give me. I¹m having nightmares, literally,

about my kids (ages 6 & 8)

Thanks, Kathleen

> I honestly don't know if Dr. Cohen is seeing new adult patients. The last I

> heard there was a 18 to 24 month wait for a new pediatric patients diagnostic

> consult for mito. It is far easier to get an appointment with Dr. SHoffner in

> Atlanta. I can tell you that process if you are interested.

>

> What part of the US do you live in?

>

> kafeeninacup kdrobins@...> wrote:

> Laurie and others-

>

> How did you get connected to Dr. Cohen? Through a referral by your home

> Neurologist?

> Through MDA?

>

[Guest guest]

I have three kids, 2, 5, and 8, and they are so far okay, except the

middle one is speech delayed. They think he (the 5-year old) may

have a mitochondrial disease, but other than the speech delay he is

okay symptom-wise, and has only a slight lactic acid elevation in

blood tests.

As I think I mentioned in another post, although mitochondrial

disease is for the most part considered genetic, it depends on the

exact mutation (and whether the father is affected with that *exact*

genetic defect) whether your kids are more or less affected.

If they are fine so far, count your blessings and just keep an eye

out for signs of fatigue - that's what I do. Unfortunately some

doctors think that if the mother is affected, the kids must be, and

it isn't always the case.

Take care,

RH

> > Laurie and others-

> >

> > How did you get connected to Dr. Cohen? Through a referral by

your home

> > Neurologist?

> > Through MDA?

> >

>

>

>

>