A question from })i({ J and D’s Momma })i({: Does anyone have a child with Cystic Fibrosis?
What has your experience been like? How old is your child? What treatment plan is he/she on? Has it been effective? At what age was your child diagnosed? How does this affect your life?

No 1 answer:

Answer by EMH
My wife and I have 4 kids; our youngest (Claire) has CF. When she was born, she had a distended abdomen … it ended up that her intestine had ruptured before she was born. She was in the NICU for 2.5 months. At 1 month, she was finally diagnosed (two separate new born screens came back negative) – finally it was confirmed with a DNA test.

As she is getting older, she is much doing better. She has a vest now, so I give a lot of the credit to that. She gets 3 breathing treatments a day (4 different breathing treatment medicines) and the vest 2 times a day. She takes enzymes with every meal and snack (about 20 per day). She’s also on Prevacid, singulair, and many vitamins. At night she is also on a feeding tube. She has CF clinic about once every 1.5 months (more in the winter and less in the summer).

CF really affected our lives at first … and it still does. Unfortunately it’s a part of our lives … we’ve just learned to live with it … it’s all normal for her.

You can find out a little about Claire (and CF) at www.fourwillows.com/claire (be sure to also view the Hope For Claire icon to view a presentation that my wife made).

Let me know if you have any further questions.

Whether you agree or disagree, why not leave your own thoughts below.

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