What advice to you have for new CF parents?

Avatar for Cmmelissa
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Registered: 11-13-2008
What advice to you have for new CF parents?
4
Fri, 03-15-2013 - 11:59am

What advice do you have for parents that have a child who was just diagnosed with CF?  

What advice do you think your child would have for theirs?

Avatar for adamsmomplus2
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Registered: 09-09-2000
Thu, 03-21-2013 - 11:19am

I think the most important thing is consistency with treatment and nutrition. As exhausting as it can be, a routine is critical. It was fortunate for us that Sarah was diagnosed at birth. She started vest  and nebulizer treatments early so she doesn't know anything different. We never skip. Never. We take the vest on every possible trip. We have taken the Acapella a couple of times, but only as a last resort. We even take the vest camping and find a ranger station where they will let us plug in for 20 minutes.

Nutrition is the other critical piece, and probably the most difficult for us. Sarah still drinks the vast majority of her calories in high-calorie supplements. It's not "normal" eating, but it keeps her healthy and well-nourished. We are constantly working to increase her portions of regular food and hopefully some day she will be able to reduce the need for liquid nutrition, but fighting the food battle isn't worth it if it means more exacerbations plus the emotional toll of fighting over every bite.

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Registered: 10-12-2010
Tue, 04-16-2013 - 4:13pm

I agree with MA to get into a routine as early as possible.  Paige still hates her vest but we do it twice a day and she's gotten better about it.  Another piece of advice I'd give is to get your child swallowing enzymes as early as possible.  We started Paige about a month after her 2nd birthday and it makes everything so much easier.  I'm still not very good at swallowing pills!

 

~ Monica

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Tue, 04-16-2013 - 4:13pm
Hey, look! My signature came back!
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Tue, 04-16-2013 - 4:15pm
Holy cow, does Paige look young here! It was the July after she turned 8 in June. Now she's going to be 12 in less than 2 months!
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