does any have experience with cystic fibrosis - Infant Care (up to 18 months old) Message Board

Erin619 · 07-24-2007, 01:54 PM

I brought my DD for her 15 month checkup yesterday and the doctor wants me to get her tested for cystic fibrosis because of her size. She was
7 lbs 3oz and 21 inches when born and has always been small. At her 4 month appointment the doctors had her at 75th percentile but she dropped down to 25 after that and is now at 10th. I think someone may have made a mistake when they put her at the 75th, but anyway she is now 19 lbs 11 oz and a little over 29 inches tall. The doctor is concerned because I am 5' 9" and my husband is 5' 10. My husband was always a small child, usually the smallest in his class.

Anyway now I have her scheduled to have all kinds of blood work and a sweat test for cystic fibrosis but it's not until 8/22. I am so scared. She doesn't have any signs or symptoms. She has had strange BMs though. Sometimes they are tan in color. SHe is my third child and I have never seen anything like it. Has anyone experienced that before? I need to hear from people who've had similar experiences. It's all I can think and talk about. I really fear for her.

sem627 · 07-24-2007, 09:20 PM

You will probably find better advice and experience on the Cystic Fibrosis board. I'm sorry you're feeling this way now....I will say a prayer for you.

Ratatosk · 07-26-2007, 09:35 AM

Some of the symptoms with CF are salty tasting skin -- when you kiss her, do your lips taste salty afterwards. Odd looking stools -- sometimes loose, bulky, really stinky, sometimes shiny or greasy. Weight loss despite voracious appetite. Sometimes sinus issues. Sometimes constipation.

I would encourage you to try to get them to push up the tests, so you're not worrying so much for a month. Genetic blood testing is the most accurate method of determining CF or not. Sweat tests have been shown to be inaccurate in a number of cases.