worried about my daughter

[Megan Roberts]

Hi, I was wondering if I could get some help...when I was pregnant they found echogenic bowel on my 20 week ultrasound. It remained present until an ultrasound at 31 weeks where it began to "clear up". When my daughter was born she had two meconium plugs. Now when she has a bowel movement they are mucousy and still have meconium in them. She lost almost 1 lbs in the first 48 hours, but she is now thriving at a week old. Her newborn screening was normal. My doctor has contacted the CF clinic and we are waiting to see if they want us to come in for testing. I really want to push for a sweat test to make certain she doesn't have it. I just wanted to see if any of you had any input on it. Thank you!

 

[Aboveallislove]

Dear mom, I am so sorry for your worry. I would strongly push for a sweat test. Hopefully it isn't cf, but given what the bowel issues, I think it is I peritive to do so. The newborn screen only screens for certain things. I'd also suggest you contact your states newborn screening office and ask exactly what they screen for for cf. is it elevated irc levels...sorry that might be wrong initials...or mutations and if so what. That will give you a better feel for how much screening was done.

 

[sanfloraine]

I recently read that the IRT protein test has only a 92% of being positive in cases of CF - meaning 8% will be negative when they should have been positive. Better be safe than sorry and get a sweat test, push hard to get this sweat test! Good luck.