2 month old with cf growing and gaining well

[anonymous]

My 2 moth old was 6pounds 11 ounces when we left the hospital after birth and now weighs 10.2 and grew 2 inches. Everyone I talk to cann't believe she has it cause she is so healthy. Her pediatrician said yesterday that she is doing well. She has some signs like needing a neb. treatments because she got a cold 2 weeks ago which I think is rare for a newborn am I right?She also has the strong odor when she has gone to the bathroom. Other than that that is it her lung exerays are great. They are doing another blood test on her to see if the other cell is in the next 87 more common cells but if they don't find anything they aren't going to do dna on her. They said that she is positive because of her sweat test. She does have 1 of the most common carrier cells though AF508. Does this sound like she could have cf but a little milder case. Please let me know your opinions.
Saydie's mom

 

[anonymous]

My pulmonologist for my 3 myh old said that when the babies are born their lungs are just like babies w/o CF, they are totally clear so the healthier you can keep them the better to keep them like that. He also said that any coluds and illness" they get within the first couple years of life are 100% reversable if there is any scarring because they keep growng new celia and lung all the time until that age. DeltaF508 is what my baby has and what most people have and the severity is unkown. You wont know, only time will tell. That is a GREAT weight.........

 

[anonymous]

There is no way to tell how severe the lung problems of your child will be by the genetic naming. Two children with the same genes can present differently. Unfortunately, some children have bad lung infections from the start and others do not. Our job as parents is to be very vigilant with CPT even if it seems like the kids don't need it. I think eventually all pwcf develop lung issues, for some it isn't way into adulthood. Hopefully, there will be a cure for your child by then.