To: Parents of CF babies under 6 months of age

[datca1994]

Dear mammaof3, my son is also 5 months old now and we first were given a red flag that he might have CF from the newborn screening test. The first symptom was lack of weight gain starting at 4 weeks, and also skin problems (what looked like rashes all up and down his legs) and just being very pale. Because he did not sweat enough for the sweat test the doctor ordered a test to count the proteins in his stool to see if he was pancreatic insufficient. The protein numbers were low, so enzymes were started and helped tremendously from the first day he started taking them. At the same time blood was sent to Ambry Genetics to test for CF, we waited 6 weeks for the results.

Regarding formula, the nutritionist at the CF clinic recommended Enfamil's "Pregestimil LIPIL" which according to its website is "specially designed for babies with fat malabsorption problems" (at <a target=_blank class=ftalternatingbarlinklarge href="http://www.enfamil.com/app/iwp/Product.do?dm=enf&id=-8813).">http://www.enfamil.com/app/iwp...t.do?dm=enf&id=-8813).</a> I ended up not using it because the enzymes helped him gain weight sufficiently. You should ask about it.

Hughett-it is nice to read that your son is in the 90th percentile in weight! What is the secret to your success? We have not started my son on solids yet (he is 5 months old), he is fed breastmik and formula. I offered him rice cereal a fe wtimes but he is not interested. When did your son start with the solids? Was he always above the curve in weight?

Thanks for reading!

April in Virginia Beach

 

[datca1994]

Dear mammaof3, my son is also 5 months old now and we first were given a red flag that he might have CF from the newborn screening test. The first symptom was lack of weight gain starting at 4 weeks, and also skin problems (what looked like rashes all up and down his legs) and just being very pale. Because he did not sweat enough for the sweat test the doctor ordered a test to count the proteins in his stool to see if he was pancreatic insufficient. The protein numbers were low, so enzymes were started and helped tremendously from the first day he started taking them. At the same time blood was sent to Ambry Genetics to test for CF, we waited 6 weeks for the results.

Regarding formula, the nutritionist at the CF clinic recommended Enfamil's "Pregestimil LIPIL" which according to its website is "specially designed for babies with fat malabsorption problems" (at <a target=_blank class=ftalternatingbarlinklarge href="http://www.enfamil.com/app/iwp/Product.do?dm=enf&id=-8813).">http://www.enfamil.com/app/iwp...t.do?dm=enf&id=-8813).</a> I ended up not using it because the enzymes helped him gain weight sufficiently. You should ask about it.

Hughett-it is nice to read that your son is in the 90th percentile in weight! What is the secret to your success? We have not started my son on solids yet (he is 5 months old), he is fed breastmik and formula. I offered him rice cereal a fe wtimes but he is not interested. When did your son start with the solids? Was he always above the curve in weight?

Thanks for reading!

April in Virginia Beach

 

[datca1994]

Dear mammaof3, my son is also 5 months old now and we first were given a red flag that he might have CF from the newborn screening test. The first symptom was lack of weight gain starting at 4 weeks, and also skin problems (what looked like rashes all up and down his legs) and just being very pale. Because he did not sweat enough for the sweat test the doctor ordered a test to count the proteins in his stool to see if he was pancreatic insufficient. The protein numbers were low, so enzymes were started and helped tremendously from the first day he started taking them. At the same time blood was sent to Ambry Genetics to test for CF, we waited 6 weeks for the results.

Regarding formula, the nutritionist at the CF clinic recommended Enfamil's "Pregestimil LIPIL" which according to its website is "specially designed for babies with fat malabsorption problems" (at <a target=_blank class=ftalternatingbarlinklarge href="http://www.enfamil.com/app/iwp/Product.do?dm=enf&id=-8813).">http://www.enfamil.com/app/iwp...t.do?dm=enf&id=-8813).</a> I ended up not using it because the enzymes helped him gain weight sufficiently. You should ask about it.

Hughett-it is nice to read that your son is in the 90th percentile in weight! What is the secret to your success? We have not started my son on solids yet (he is 5 months old), he is fed breastmik and formula. I offered him rice cereal a fe wtimes but he is not interested. When did your son start with the solids? Was he always above the curve in weight?

Thanks for reading!

April in Virginia Beach

 

[Ellasmommy]

Ella is two months on creon 5 also. She takes 1/2 cap per feeding. She gets her weight checked weekly. She is gaining an oz. a day. Once her weight gain seems to be slowing down we up her enzymes. Makes sense. She is also on a liquid vitamin, but nothing else yet.

 

[Ellasmommy]

Ella is two months on creon 5 also. She takes 1/2 cap per feeding. She gets her weight checked weekly. She is gaining an oz. a day. Once her weight gain seems to be slowing down we up her enzymes. Makes sense. She is also on a liquid vitamin, but nothing else yet.

 

[Ellasmommy]

Ella is two months on creon 5 also. She takes 1/2 cap per feeding. She gets her weight checked weekly. She is gaining an oz. a day. Once her weight gain seems to be slowing down we up her enzymes. Makes sense. She is also on a liquid vitamin, but nothing else yet.

 

[raysmama]

my son was put on the nebulizer at 3 weeks old as a precaution before the doctor was even positive he had it. so i guess it was a good thing because his lungs are still clear and he is 2 1/2 months old.

 

[raysmama]

my son was put on the nebulizer at 3 weeks old as a precaution before the doctor was even positive he had it. so i guess it was a good thing because his lungs are still clear and he is 2 1/2 months old.

 

[raysmama]

my son was put on the nebulizer at 3 weeks old as a precaution before the doctor was even positive he had it. so i guess it was a good thing because his lungs are still clear and he is 2 1/2 months old.

 

[raysmama]

my son was put on the nebulizer at 3 weeks old as a precaution before the doctor was even positive he had it. so i guess it was a good thing because his lungs are still clear and he is 2 1/2 months old.

 

[raysmama]

my son was put on the nebulizer at 3 weeks old as a precaution before the doctor was even positive he had it. so i guess it was a good thing because his lungs are still clear and he is 2 1/2 months old.

 

[raysmama]

my son was put on the nebulizer at 3 weeks old as a precaution before the doctor was even positive he had it. so i guess it was a good thing because his lungs are still clear and he is 2 1/2 months old.

 

[raysmama]

i was wondering some thing my son is 2 1/2 months old and is 16 lbs. in the 90th percintile and 24 inches long big baby. he eats like a horse though and poops every other feeding is this normal.?

 

[raysmama]

i was wondering some thing my son is 2 1/2 months old and is 16 lbs. in the 90th percintile and 24 inches long big baby. he eats like a horse though and poops every other feeding is this normal.?

 

[raysmama]

i was wondering some thing my son is 2 1/2 months old and is 16 lbs. in the 90th percintile and 24 inches long big baby. he eats like a horse though and poops every other feeding is this normal.?

 

[raysmama]

i was wondering some thing my son is 2 1/2 months old and is 16 lbs. in the 90th percintile and 24 inches long big baby. he eats like a horse though and poops every other feeding is this normal.?

 

[raysmama]

i was wondering some thing my son is 2 1/2 months old and is 16 lbs. in the 90th percintile and 24 inches long big baby. he eats like a horse though and poops every other feeding is this normal.?

 

[raysmama]

i was wondering some thing my son is 2 1/2 months old and is 16 lbs. in the 90th percintile and 24 inches long big baby. he eats like a horse though and poops every other feeding is this normal.?