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i am also very interested in your experience. my little girl has W1282x, f508. She was dx with nbs and is 5 months. i am still struggling with her dx and hope that this drug will be both effective and available soon.

i am also very interested in your experience. my little girl has W1282x, f508. She was dx with nbs and is 5 months. i am still struggling with her dx and hope that this drug will be both effective and available soon.

mommafirst - i think i might have seen another post/topic that your daughter has w1282x? my baby girl does too. what is her 2nd mutation? are you following the ataluren study? i was told that they may begin a trial for those under 6 in the near future?

mommafirst - i think i might have seen another post/topic that your daughter has w1282x? my baby girl does too. what is her 2nd mutation? are you following the ataluren study? i was told that they may begin a trial for those under 6 in the near future?

mommafirst - i think i might have seen another post/topic that your daughter has w1282x? my baby girl does too. what is her 2nd mutation? are you following the ataluren study? i was told that they may begin a trial for those under 6 in the near future?

ashmomo & mommafirst - we are doing the CPT. We do have a CF doc but he comes to town only once a month. I called our CF team clinic coordinator and she directed me to our pediatrician (who is seems to have better luck than i communicating with our cf pulmonologist). I have been curious about...

ashmomo & mommafirst - we are doing the CPT. We do have a CF doc but he comes to town only once a month. I called our CF team clinic coordinator and she directed me to our pediatrician (who is seems to have better luck than i communicating with our cf pulmonologist). I have been curious about...

ashmomo & mommafirst - we are doing the CPT. We do have a CF doc but he comes to town only once a month. I called our CF team clinic coordinator and she directed me to our pediatrician (who is seems to have better luck than i communicating with our cf pulmonologist). I have been curious about...

Hello. I am new to this site. My baby girl was dx with CF via NBS at 5 wks. SShe is now almost 5 mo. She is just about exclusively breastfed. Although, we are just starting to introduc some solids. I was wondering at what age folks added supplements to their infant's diet. I've upped my vitamin...

Hello. I am new to this site. My baby girl was dx with CF via NBS at 5 wks. SShe is now almost 5 mo. She is just about exclusively breastfed. Although, we are just starting to introduc some solids. I was wondering at what age folks added supplements to their infant's diet. I've upped my vitamin...

Hello. I am new to this site. My baby girl was dx with CF via NBS at 5 wks. SShe is now almost 5 mo. She is just about exclusively breastfed. Although, we are just starting to introduc some solids. <br />I was wondering at what age folks added supplements to their infant's diet. <br />I've upped...

Hello. new to this site. my daughter was dx with CF via nbs. She is almost 5 months. She is getting over (i think) her first cold. I think her symptoms are "normal." She started with a runny nose and cough. She is nursing/sleeping fine and seems pretty happy. We have been doing saline drops and...

Hello. new to this site. my daughter was dx with CF via nbs. She is almost 5 months. She is getting over (i think) her first cold. I think her symptoms are "normal." She started with a runny nose and cough. She is nursing/sleeping fine and seems pretty happy. We have been doing saline drops and...

Hello. <br />new to this site. my daughter was dx with CF via nbs. She is almost 5 months. She is getting over (i think) her first cold. I think her symptoms are "normal." She started with a runny nose and cough. She is nursing/sleeping fine and seems pretty happy. We have been doing saline...