new to group

October 22, 2003

Hi, all

First, I should say that I am NOT a parent of a CF child but I am the aunt of

one. I hope it's still ok for me to participate in this group. Please let me

know and I will unsubscribe if I need to.

My sweet, beautiful 10 yr. old niece was recently diagnosed. She had some

symptoms but the pieces of the puzzle weren't put together til about a month

ago. For years she had chronic sinus trouble, ear infections, allergies, asthma,

and more recently, her growth slowed and she got much thinner (she a little

chunky as a little kid) in spite of her huge appetite. The most disturbing was

the elevation in liver enzymes. Her pediatrician was doing a wait and see but my

sister asked for a pediatric gastroenterologist. He quickly figured it out and

she had a positive sweat test and some damage on x-ray. Her genetic testing just

came back and she has moderate cf. On the 6th of October she went into the

hospital for her 1st tune-up. She was released on the 17th.

Her new daily routine is chest percussion (pounding I think 3x/day), also using

the acapella, and nebulizer treatments several times each day as well. She is on

enzymes to help with pancreatic insuffiency and hopefully some weight gain.

She's a very active child which I think is good.

I know this is overwhelming for her and her parents but she is so brave. She has

a wonderful attitude.

I know all of you have been there, done that but it's new for me. I know she's

not my child but I love her so much and want to be sure she's getting the best

care and that she stays a happy child.

Thank you. Again, please let me know if it's ok to stay with this group. I've

been researching but hearing from people in the same situation helps so much.

Jill

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