Anyone have a mitochondrial disorder?

iVillage Member
Registered: 10-09-2003
Anyone have a mitochondrial disorder?
4
Tue, 07-31-2007 - 10:04pm

In case anyone's available, I'm throwing a pity party. Just found out last night that my DS (PDD-NOS, bipolar) has a mitochondrial disorder. He had a muscle biopsy in May and the results are in. Now I have to wait until Sept. 11 (ACK!!) before finding out all the genetic markers to know what type of mitochondrial myopathy we're talking about and what that means for me and my daughter in addition to my DS.

SERIOUSLY. Calgon, take me away. Or maybe a masseuse should take me away. To the Bahamas. With a pina colada. And some chocolate.

~ Chelsea
~ Chelsea
iVillage Member
Registered: 05-06-2003
Tue, 07-31-2007 - 11:02pm

((((((Chelsea, J and N)))))))))))))))


Email me dear...been awhile.


mom2jdrb@hotmail.com


~S


iVillage Member
Registered: 03-26-2003
Wed, 08-01-2007 - 12:00am

Not that I know of but DAve had a blood test and it was thought this could be a possibility for the kids (mito or metabolic). However, the ones tested in the blood test didn't show anything and I was told we may never find out for sure and that the other tests were invasive and may not show what it is anyway, so unless he was doing poorly there wasn't a reason to do it.

So basically it is possible we do. Seems weird that I have all 4 kids with at least some similar issues but they didn't seem to think knowing for sure would change treatment.

My doc has been known to be lame though

Good to see you though. I was thinking about you the other day.

Renee

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iVillage Member
Registered: 06-25-2003
Wed, 08-01-2007 - 12:10am

(((((((((Chelsea))))))))),


While it is good to see you back here, I wish it were under different circumstances,


I don't understand all of what you are going through, but I do get some of it. I was diagnosed with Ehlers-Danlos Syndrome (EDS)

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-28-2007
Wed, 08-01-2007 - 7:48am

(((Chelsea))))

Here's hoping at the very best this one is an embyonic mutation (some can be) and that ds's is mild with very managable symptoms....sending loads of positive white light!!!

Dee xx

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