Month old with CF

N

nicole781

New member
Just in case this is something you were wondering about, there is a study that is going on with infants and formula....
My daughter is almost 2 months old, and she's on it. They provide you with free formula for a year, and there are no restrictions on how much they can have.
My CF clinic started me off with 2 cases, and then they sent 10 more cases to my house to start.
It's a blind study, testing if increased levels of dha helps babies with CF. You either get regular emfamil or emfamil with lipil x3.
If it's something you guys are interested in, i would recommend asking your clinic about it, I know my daughter has been gaining weight since we've put her on it.
Another part that's nice is that with all the other bills that come up with cf, we get to save that $$ on formula.
If you have any questions about it, PM me.
~Nicole
 
N

nicole781

New member
Just in case this is something you were wondering about, there is a study that is going on with infants and formula....
My daughter is almost 2 months old, and she's on it. They provide you with free formula for a year, and there are no restrictions on how much they can have.
My CF clinic started me off with 2 cases, and then they sent 10 more cases to my house to start.
It's a blind study, testing if increased levels of dha helps babies with CF. You either get regular emfamil or emfamil with lipil x3.
If it's something you guys are interested in, i would recommend asking your clinic about it, I know my daughter has been gaining weight since we've put her on it.
Another part that's nice is that with all the other bills that come up with cf, we get to save that $$ on formula.
If you have any questions about it, PM me.
~Nicole
 
N

nicole781

New member
Just in case this is something you were wondering about, there is a study that is going on with infants and formula....
My daughter is almost 2 months old, and she's on it. They provide you with free formula for a year, and there are no restrictions on how much they can have.
My CF clinic started me off with 2 cases, and then they sent 10 more cases to my house to start.
It's a blind study, testing if increased levels of dha helps babies with CF. You either get regular emfamil or emfamil with lipil x3.
If it's something you guys are interested in, i would recommend asking your clinic about it, I know my daughter has been gaining weight since we've put her on it.
Another part that's nice is that with all the other bills that come up with cf, we get to save that $$ on formula.
If you have any questions about it, PM me.
~Nicole
 
N

nicole781

New member
Just in case this is something you were wondering about, there is a study that is going on with infants and formula....
My daughter is almost 2 months old, and she's on it. They provide you with free formula for a year, and there are no restrictions on how much they can have.
My CF clinic started me off with 2 cases, and then they sent 10 more cases to my house to start.
It's a blind study, testing if increased levels of dha helps babies with CF. You either get regular emfamil or emfamil with lipil x3.
If it's something you guys are interested in, i would recommend asking your clinic about it, I know my daughter has been gaining weight since we've put her on it.
Another part that's nice is that with all the other bills that come up with cf, we get to save that $$ on formula.
If you have any questions about it, PM me.
~Nicole
 
N

nicole781

New member
Just in case this is something you were wondering about, there is a study that is going on with infants and formula....
My daughter is almost 2 months old, and she's on it. They provide you with free formula for a year, and there are no restrictions on how much they can have.
My CF clinic started me off with 2 cases, and then they sent 10 more cases to my house to start.
It's a blind study, testing if increased levels of dha helps babies with CF. You either get regular emfamil or emfamil with lipil x3.
If it's something you guys are interested in, i would recommend asking your clinic about it, I know my daughter has been gaining weight since we've put her on it.
Another part that's nice is that with all the other bills that come up with cf, we get to save that $$ on formula.
If you have any questions about it, PM me.
~Nicole
 
S

sdelorenzo

Guest
Welcome! Sorry to hear about your granddaughter's diagnosis. It could be that she is allergic to milk. My daughter started throwing up a few times a day when she was an infant after she was diagnosed. It continued for 7 months. She ended up having a ng tube for feedings because she refused to eat. Once a biopsy of her intestine pointed to a food allergy we switched her to Nutramigen. It took 3 weeks for her body to stop vomiting and start eating, but it made a big difference for her. Just an idea to consider for you, it is really hard to get drs to think a cf kid is throwing up for another reason besides cf reflux.
Sharon, mom of Sophia, 6 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Welcome! Sorry to hear about your granddaughter's diagnosis. It could be that she is allergic to milk. My daughter started throwing up a few times a day when she was an infant after she was diagnosed. It continued for 7 months. She ended up having a ng tube for feedings because she refused to eat. Once a biopsy of her intestine pointed to a food allergy we switched her to Nutramigen. It took 3 weeks for her body to stop vomiting and start eating, but it made a big difference for her. Just an idea to consider for you, it is really hard to get drs to think a cf kid is throwing up for another reason besides cf reflux.
Sharon, mom of Sophia, 6 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Welcome! Sorry to hear about your granddaughter's diagnosis. It could be that she is allergic to milk. My daughter started throwing up a few times a day when she was an infant after she was diagnosed. It continued for 7 months. She ended up having a ng tube for feedings because she refused to eat. Once a biopsy of her intestine pointed to a food allergy we switched her to Nutramigen. It took 3 weeks for her body to stop vomiting and start eating, but it made a big difference for her. Just an idea to consider for you, it is really hard to get drs to think a cf kid is throwing up for another reason besides cf reflux.
Sharon, mom of Sophia, 6 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Welcome! Sorry to hear about your granddaughter's diagnosis. It could be that she is allergic to milk. My daughter started throwing up a few times a day when she was an infant after she was diagnosed. It continued for 7 months. She ended up having a ng tube for feedings because she refused to eat. Once a biopsy of her intestine pointed to a food allergy we switched her to Nutramigen. It took 3 weeks for her body to stop vomiting and start eating, but it made a big difference for her. Just an idea to consider for you, it is really hard to get drs to think a cf kid is throwing up for another reason besides cf reflux.
Sharon, mom of Sophia, 6 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Welcome! Sorry to hear about your granddaughter's diagnosis. It could be that she is allergic to milk. My daughter started throwing up a few times a day when she was an infant after she was diagnosed. It continued for 7 months. She ended up having a ng tube for feedings because she refused to eat. Once a biopsy of her intestine pointed to a food allergy we switched her to Nutramigen. It took 3 weeks for her body to stop vomiting and start eating, but it made a big difference for her. Just an idea to consider for you, it is really hard to get drs to think a cf kid is throwing up for another reason besides cf reflux.
Sharon, mom of Sophia, 6 and Jack, 3 both with cf
 
A

Alyssa

New member
Not much new to add - just confirming what others have said - getting a positive sweat test and thinking it might be wrong is the opposite problem that most people have.... most people are struggling with negative or borderline results, not having a clear idea if it is CF or not. I'd hedge my bets that if it was positive and she has been to a Certified CF clinic two times, the doctors are on the right path. Do ask about genetic testing to follow through -- it's become quite standard now so again, they may have already started working on that -- might be why they decided against another sweat test.

Very good question though -- always good to question things!
 
A

Alyssa

New member
Not much new to add - just confirming what others have said - getting a positive sweat test and thinking it might be wrong is the opposite problem that most people have.... most people are struggling with negative or borderline results, not having a clear idea if it is CF or not. I'd hedge my bets that if it was positive and she has been to a Certified CF clinic two times, the doctors are on the right path. Do ask about genetic testing to follow through -- it's become quite standard now so again, they may have already started working on that -- might be why they decided against another sweat test.

Very good question though -- always good to question things!
 
A

Alyssa

New member
Not much new to add - just confirming what others have said - getting a positive sweat test and thinking it might be wrong is the opposite problem that most people have.... most people are struggling with negative or borderline results, not having a clear idea if it is CF or not. I'd hedge my bets that if it was positive and she has been to a Certified CF clinic two times, the doctors are on the right path. Do ask about genetic testing to follow through -- it's become quite standard now so again, they may have already started working on that -- might be why they decided against another sweat test.

Very good question though -- always good to question things!
 
A

Alyssa

New member
Not much new to add - just confirming what others have said - getting a positive sweat test and thinking it might be wrong is the opposite problem that most people have.... most people are struggling with negative or borderline results, not having a clear idea if it is CF or not. I'd hedge my bets that if it was positive and she has been to a Certified CF clinic two times, the doctors are on the right path. Do ask about genetic testing to follow through -- it's become quite standard now so again, they may have already started working on that -- might be why they decided against another sweat test.

Very good question though -- always good to question things!
 
A

Alyssa

New member
Not much new to add - just confirming what others have said - getting a positive sweat test and thinking it might be wrong is the opposite problem that most people have.... most people are struggling with negative or borderline results, not having a clear idea if it is CF or not. I'd hedge my bets that if it was positive and she has been to a Certified CF clinic two times, the doctors are on the right path. Do ask about genetic testing to follow through -- it's become quite standard now so again, they may have already started working on that -- might be why they decided against another sweat test.

Very good question though -- always good to question things!
 
E

Ellasgma

Guest
I am a Grandma of a 3 mo old baby girl who seems to be doing better...this week. Ella was diagnosed with CF when she was 3 days old, she was flown by helicoptor to the nearest NICU with a muconium ilius, and later diagnosed with CF by the sweat test. She has the deltaf508 mutation and the 2184delA mutation. We have been giving her enzymes with every feeding, and doing percussion treatments 2x/day, and sometimes up to 4x/day, depending on her breathing and cough. She has had one positive sputum culture for staph, which freaked me out, but did not seem to concern the CF team, they just treated her with antibiotics...which sort of upset the stomach and stools...seems to be a constant worry of what will work, what doesn't work, etc.... My daughter is a single mom, and the dad is not in the picture, so feel like I have a lot of the responsibility too. I was wondering if anyone else could tell us if this has been part of their experiance with such a young one, and any suggestions for keeping the little ones free from infection. I know the good hand washing, keeping them from sick adults and kids, keeping counters and home clean as possible...Would a clean air machine be helpful, and would also like information on the different vests...will be looking into one of those in the next year or two.
 
E

Ellasgma

Guest
I am a Grandma of a 3 mo old baby girl who seems to be doing better...this week. Ella was diagnosed with CF when she was 3 days old, she was flown by helicoptor to the nearest NICU with a muconium ilius, and later diagnosed with CF by the sweat test. She has the deltaf508 mutation and the 2184delA mutation. We have been giving her enzymes with every feeding, and doing percussion treatments 2x/day, and sometimes up to 4x/day, depending on her breathing and cough. She has had one positive sputum culture for staph, which freaked me out, but did not seem to concern the CF team, they just treated her with antibiotics...which sort of upset the stomach and stools...seems to be a constant worry of what will work, what doesn't work, etc.... My daughter is a single mom, and the dad is not in the picture, so feel like I have a lot of the responsibility too. I was wondering if anyone else could tell us if this has been part of their experiance with such a young one, and any suggestions for keeping the little ones free from infection. I know the good hand washing, keeping them from sick adults and kids, keeping counters and home clean as possible...Would a clean air machine be helpful, and would also like information on the different vests...will be looking into one of those in the next year or two.
 
E

Ellasgma

Guest
I am a Grandma of a 3 mo old baby girl who seems to be doing better...this week. Ella was diagnosed with CF when she was 3 days old, she was flown by helicoptor to the nearest NICU with a muconium ilius, and later diagnosed with CF by the sweat test. She has the deltaf508 mutation and the 2184delA mutation. We have been giving her enzymes with every feeding, and doing percussion treatments 2x/day, and sometimes up to 4x/day, depending on her breathing and cough. She has had one positive sputum culture for staph, which freaked me out, but did not seem to concern the CF team, they just treated her with antibiotics...which sort of upset the stomach and stools...seems to be a constant worry of what will work, what doesn't work, etc.... My daughter is a single mom, and the dad is not in the picture, so feel like I have a lot of the responsibility too. I was wondering if anyone else could tell us if this has been part of their experiance with such a young one, and any suggestions for keeping the little ones free from infection. I know the good hand washing, keeping them from sick adults and kids, keeping counters and home clean as possible...Would a clean air machine be helpful, and would also like information on the different vests...will be looking into one of those in the next year or two.
 
E

Ellasgma

Guest
I am a Grandma of a 3 mo old baby girl who seems to be doing better...this week. Ella was diagnosed with CF when she was 3 days old, she was flown by helicoptor to the nearest NICU with a muconium ilius, and later diagnosed with CF by the sweat test. She has the deltaf508 mutation and the 2184delA mutation. We have been giving her enzymes with every feeding, and doing percussion treatments 2x/day, and sometimes up to 4x/day, depending on her breathing and cough. She has had one positive sputum culture for staph, which freaked me out, but did not seem to concern the CF team, they just treated her with antibiotics...which sort of upset the stomach and stools...seems to be a constant worry of what will work, what doesn't work, etc.... My daughter is a single mom, and the dad is not in the picture, so feel like I have a lot of the responsibility too. I was wondering if anyone else could tell us if this has been part of their experiance with such a young one, and any suggestions for keeping the little ones free from infection. I know the good hand washing, keeping them from sick adults and kids, keeping counters and home clean as possible...Would a clean air machine be helpful, and would also like information on the different vests...will be looking into one of those in the next year or two.
 
E

Ellasgma

Guest
I am a Grandma of a 3 mo old baby girl who seems to be doing better...this week. Ella was diagnosed with CF when she was 3 days old, she was flown by helicoptor to the nearest NICU with a muconium ilius, and later diagnosed with CF by the sweat test. She has the deltaf508 mutation and the 2184delA mutation. We have been giving her enzymes with every feeding, and doing percussion treatments 2x/day, and sometimes up to 4x/day, depending on her breathing and cough. She has had one positive sputum culture for staph, which freaked me out, but did not seem to concern the CF team, they just treated her with antibiotics...which sort of upset the stomach and stools...seems to be a constant worry of what will work, what doesn't work, etc.... My daughter is a single mom, and the dad is not in the picture, so feel like I have a lot of the responsibility too. I was wondering if anyone else could tell us if this has been part of their experiance with such a young one, and any suggestions for keeping the little ones free from infection. I know the good hand washing, keeping them from sick adults and kids, keeping counters and home clean as possible...Would a clean air machine be helpful, and would also like information on the different vests...will be looking into one of those in the next year or two.
 
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