Hello Everybody!
I am new here. My daughter is almost 6 months old and was diagnosed at birth with CF. She had emergency surgery the day after she was born because she had meconium ileus. She was on breastmilk at first that we were having to fortify with formula. Now she is on a highly concentrated recipe of strait formula. We feed her every 3 hours. She is on Creon and Source CF Vitamins. The CF center that we visit did bloodwork last month and her Vitamin D level was low, so we have now added a seperate Vitiamin D drop to her regimine. We also do CPT on her for 20 minutes two different times a day.They also told us that her liver function is abnormal and want us to see a GI specialist because of it. Just looking at her, you would think that there is nothing wrong with her............she looks as healthy as any other beautiful baby girl!
I have a question. When she was dianosed, they told us that she had DD508. If have been lurking on this site for a couple of weeks, and I have noticed that some people say that DD508 is one of the worst combinations that a CFer can have. Can someone explain why? We were told that eventually this would affect her lung function..............and we understand about the pancreas and the enzymes and the mucus. I guess I am just wondering why some people this this diagnosis is worse that some.
Thanks for reading! I look forward to getting to know you all.
I am new here. My daughter is almost 6 months old and was diagnosed at birth with CF. She had emergency surgery the day after she was born because she had meconium ileus. She was on breastmilk at first that we were having to fortify with formula. Now she is on a highly concentrated recipe of strait formula. We feed her every 3 hours. She is on Creon and Source CF Vitamins. The CF center that we visit did bloodwork last month and her Vitamin D level was low, so we have now added a seperate Vitiamin D drop to her regimine. We also do CPT on her for 20 minutes two different times a day.They also told us that her liver function is abnormal and want us to see a GI specialist because of it. Just looking at her, you would think that there is nothing wrong with her............she looks as healthy as any other beautiful baby girl!
I have a question. When she was dianosed, they told us that she had DD508. If have been lurking on this site for a couple of weeks, and I have noticed that some people say that DD508 is one of the worst combinations that a CFer can have. Can someone explain why? We were told that eventually this would affect her lung function..............and we understand about the pancreas and the enzymes and the mucus. I guess I am just wondering why some people this this diagnosis is worse that some.
Thanks for reading! I look forward to getting to know you all.