My Son Has CF. One Mutation is N1303K, the Other is Unknown

Sarah - posted on 08/23/2016 ( no moms have responded yet )




Hi, my son (almost 8 months old) was diagnosed with CF when he was a 1 month old. He was born with a meconium ileius, and later failed the sweat test. One of his mutations is N1303K and the other in unknown, but we have sent off blood work to Johns Hopkins for genetic sequencing. Just wondering if anyone out there has mutations like these? What is the prognosis/treatment look like for you or your child? Right now, he seems to only have gut issues (yet he is thriving!) No lung issues, and he is in the 87th percentile for height and weight! We are very grateful he is doing so well right now but are wondering what the future may look like for him... We were told by his CF doctor he will probably not die from this... That he should live a long life. We are currently doing one breathing treatment a day along with CPT, he takes 5 capsules of the 6,000 Creon (enzymes) before every meal, and does .5 ml of multi vitamins and 1 ml of vitamin D. I'm looking for any encouragement/info from anyone who is in a similar situation! Thank you and prayers for everyone here. I'm so grateful I came across this website. I'm a new mom... And this has all been very scary!

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