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Cystic Fibrosis Message Board
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Old 03-10-2013, 12:56 PM   #1
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AuntyShannon HB User
Cystic Fibrosis

I am new here, so if I am doing this incorrectly I apologise.

My nephew (1 year old) was diagnosed with Cystic Fibrosis after his newborn screening came back positive right after his birth.

My sister is taking it day by day, needing only to know what she needs to know in that moment to deal with it.

I am the opposite. I have been on google since the day we found out trying to wrap my head around this. I am hoping that by joining this group I will get some actual answers and real help.

He is a very healthy little guy right now. Eats like a champ takes his enzymes and never catches any of the colds that go through the family!! So we feel very lucky that way for now!!

This past week his bloodwork came back with elevated liver counts.....ultrasound shows some clouding. What does this mean for him treatment wise???

 
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Old 03-14-2013, 10:50 PM   #2
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Re: Cystic Fibrosis

Hi, I would not worry. I'm 27 with CF and my liver enzymes have been elevated my whole life. I was extremely healthy as a child and never had any issues with CF until I turned about 15 or 16. The key to staying healthy is exercise. Loosening the secretions in the lungs so he can get rid of the mucus. He is very young right now so there wont be much mucus but keeping him active now will keep him active when he is older. Make sure he stays on top of his treatments, nebulizer physio etc. That will keep him healthy. I agree with your sister, day by day keeps one sane. Don't over do it...I don't even think about having CF so the more you think about it, the more of a burden you're putting on your sister and soon enough your nephew. I hope this all helps! Technology is ever changing! Your nephew has a long life ahead of him. If he does get sick, don't worry there is a ton of options available to make sure he gets happy and healthy again. Good luck
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Kerri
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Born October 10th 2010

Last edited by luckydraw; 03-14-2013 at 10:52 PM.

 
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Old 03-16-2013, 09:31 AM   #3
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Re: Cystic Fibrosis

Thank you for the reassuring reply Kerri!!

 
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