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mitochondrial diseases *Update after doctor appt today*

Posted by on Sep. 14, 2011 at 12:05 AM
  • 8 Replies

Anyone's child have a mitochondrial disease? How did you find out? Who thought to look for it?

*UPDATE 9/14*   ♥ our pedi! He does think Ty could have a mitochondrial disease, maybe one not even diagnosed yet, or possibly something thats never been found before. We're starting on a slew of bloodwork and seeing genetics! Here's to hoping for answers! He actually went online looking stuff up about it and is having his l-carnitine all tested right now and then is getting him Bayley tested. It's a bigger and ...better newborn screening test in texas I guess. So he is getting info from them and that test ordered for us here. Then referred us to a genetecist. He was really great and receptive to me. He thought I was on the right track for even asking and was impressed, LOL! I told him I had a friend (you) who led me here. :D He said it makes sense but there is so much out there to test for it so he said it could take awhile, but as long as we start heading down a path, we're going in the right direction eventually. :D He even hopped online to look stuff up for us right there in his office. And he is emailing me all the records he has of Ty to me so I can send them to the genetecist. AMAZING!

Stick Figure Blowing Bubbles Pictures, Images and Photos

by on Sep. 14, 2011 at 12:05 AM
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Replies (1-8):
Mipsy
by Chelle on Sep. 14, 2011 at 3:36 PM

Bump and update

Elayna90
by on Sep. 14, 2011 at 3:40 PM
Good luck. I hope you get some answers.
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CameronsMommy23
by on Sep. 14, 2011 at 3:43 PM
Sounds like you & the doc are a great team! Way to go!
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Mipsy
by Chelle on Sep. 14, 2011 at 3:47 PM

Thanks, unfortunately it could take years before we find anything out, but the doctor says we are at least starting down a path and that will help. :)

Quoting Elayna90:

Good luck. I hope you get some answers.


Stick Figure Blowing Bubbles Pictures, Images and Photos

Mipsy
by Chelle on Sep. 14, 2011 at 3:48 PM

Thanks! I am thankful a friend pointed me in his direction!

Quoting CameronsMommy23:

Sounds like you & the doc are a great team! Way to go!


Stick Figure Blowing Bubbles Pictures, Images and Photos

sukainah
by on Sep. 15, 2011 at 8:36 AM

Good luck.  It's great to hear you found an awesome doctor

mandee1503
by Amanda on Sep. 15, 2011 at 10:38 AM
Good luck. I hope you guys get some answers.
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letstalk747
by Ruby Member on Sep. 15, 2011 at 11:12 AM

starting down a path is always good , keep it rolling ,

so glad for you guys

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