Retinal pigment changes-Need help

[Guest guest]

Hi Listmates,

We just returned from Cleveland and the kids were seen by a Neuro-opthalmologist who found that both kids have retinal changes. He said that their retinas have a salt and pepper appearance and this is being caused by the Mito. He said he could not give us a particular disease course other than it would progress and there was nothing we could do to stop it. How many of you have seen this in your kids? What has their course been? We were told in the beginning that they would need to have yearly eye exams because they could have their eyes affected by Mito we just weren't ready for it yet.

Thank you all

Tammy- and Madelaine's mom__________________________________________________

[Guest guest]

In February (before Mito was even in quesiton with me or my son) I

was told I had red spots on my retina. I saw a retinal specialist

in March and was diagnosed with a 'pinhole' in my macula (center of

retina). I was told their not sure what the cause was, its usually

not seen until very old age..

He also said it will progress, possibly over a year, possibly over a

few decades, i just have to have it followed. he said once it gets

big enough, there is a surgery they can do to stop the progression,

but im not sure what that is yet. I go back in December to have it

checked.

its not the same as your kiddos, but it is a retinal change...

my son has yet to have an eye exam...

> Hi Listmates,

>

> We just returned from Cleveland and the kids were seen by a Neuro-

opthalmologist who found that both kids have retinal changes. He

said that their retinas have a salt and pepper appearance and this

is being caused by the Mito. He said he could not give us a

particular disease course other than it would progress and there was

nothing we could do to stop it. How many of you have seen this in

your kids? What has their course been? We were told in the

beginning that they would need to have yearly eye exams because they

could have their eyes affected by Mito we just weren't ready for it

yet.

>

> Thank you all

> Tammy- and Madelaine's mom

>

> __________________________________________________

>