Hey all, I am new to this board. My DS is 7 wks and we are through testing to confirm a metabolic disorder called SCAD. I was looking for other parents who had any experience with this, I would love to read your story. I am new to this as I am a FTM so any advice would be great.
Also this might be a good place for other parents to talk about various other metabolic disorders too. It seems like it is hard to find a lot of support.
I'm not familiar with SCAD, but DS has 3mcc, a metabolic disorder. If you have any questions, just ask
I posted a shout out for any other people back in July 2014 to a metabolic disorder forum and Nov 2014 got a response. One person. These disorders are so rare our ratio is 1:50,000
Thanks guys. We saw the genetic specialist on the 13th to get the final blood work done to look at his genes. It's crazy how rare these disorders are. Obviously that's why it's hard to find others in the same situAtion.
I'm nervous because LO needs to eat more often and it's a bigger deal if he gets sick or doesn't want to eat. I'm a FTM so the first time he gets sick it's going to make me nervous already. I'm sure everything will be fine though.
Re: Metabolic Disorders
I posted a shout out for any other people back in July 2014 to a metabolic disorder forum and Nov 2014 got a response. One person. These disorders are so rare our ratio is 1:50,000
I'm nervous because LO needs to eat more often and it's a bigger deal if he gets sick or doesn't want to eat. I'm a FTM so the first time he gets sick it's going to make me nervous already. I'm sure everything will be fine though.