kylesmommy
New member
Deni,
This is my first time on this forum. Your post caught my eye because my son has CF, and his mutations are also the dF508 and N1303K. My husband and I didn't know we were carriers, neither have family history, but apparently that is usually the case when CF is found.
My son is now 2 years old and very healthy with treatment. He takes the following meds now: creon enzymes, zantac, zinc, vitamins, singulair, and we add 3/4 tsp of sodium to his meals every day. His breathing treatments consist of albuterol through an inhaler twice a day, and QVAR (a steroid) through an inhaler once a day, and pulmozyme via a nebulizer once a day. He is also using the Incourage vest system 30 min twice a day.
This may sound like a lot, but everything came one at a time. He has been hospitalized once so far for 2 weeks, because he tested positive for the pseudomonas aeruginosa bacteria and we couldn't get rid of it with antibiotics at home.
Kyle is very healthy though, he runs and plays and climbs like a typical 2 year old... no one that meets him would even know that he has CF.
I don't know if your niece will need the same treatment, but that gives you something to compare it to since they have the same mutations. When my son was born he had constant loose stools and was gaining very little weight. He was diagnosed at 10 weeks of age.
Best wishes to you and your family! Once you have the CF diagnosis at least you know what is wrong, and how to help your little niece. I hope you have a good CF Center to go to. If you have any questions or anything I can help you with I would be happy to assist.
Kylesmommy
This is my first time on this forum. Your post caught my eye because my son has CF, and his mutations are also the dF508 and N1303K. My husband and I didn't know we were carriers, neither have family history, but apparently that is usually the case when CF is found.
My son is now 2 years old and very healthy with treatment. He takes the following meds now: creon enzymes, zantac, zinc, vitamins, singulair, and we add 3/4 tsp of sodium to his meals every day. His breathing treatments consist of albuterol through an inhaler twice a day, and QVAR (a steroid) through an inhaler once a day, and pulmozyme via a nebulizer once a day. He is also using the Incourage vest system 30 min twice a day.
This may sound like a lot, but everything came one at a time. He has been hospitalized once so far for 2 weeks, because he tested positive for the pseudomonas aeruginosa bacteria and we couldn't get rid of it with antibiotics at home.
Kyle is very healthy though, he runs and plays and climbs like a typical 2 year old... no one that meets him would even know that he has CF.
I don't know if your niece will need the same treatment, but that gives you something to compare it to since they have the same mutations. When my son was born he had constant loose stools and was gaining very little weight. He was diagnosed at 10 weeks of age.
Best wishes to you and your family! Once you have the CF diagnosis at least you know what is wrong, and how to help your little niece. I hope you have a good CF Center to go to. If you have any questions or anything I can help you with I would be happy to assist.
Kylesmommy