3 week old with CF

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thefrogprincess

New member
Unfortunately there really is no avoiding pseudomonas. Its litterally everywhere! Just make sure you are diligent about hand washing and use a good antibacterial cleanser on surfacese. Most of them kill pseudomonas. But the fact is that eventually the baby is going to find out how fun it is to stick everything in her mouth.
 
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thefrogprincess

New member
Unfortunately there really is no avoiding pseudomonas. Its litterally everywhere! Just make sure you are diligent about hand washing and use a good antibacterial cleanser on surfacese. Most of them kill pseudomonas. But the fact is that eventually the baby is going to find out how fun it is to stick everything in her mouth.
 
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thefrogprincess

New member
Unfortunately there really is no avoiding pseudomonas. Its litterally everywhere! Just make sure you are diligent about hand washing and use a good antibacterial cleanser on surfacese. Most of them kill pseudomonas. But the fact is that eventually the baby is going to find out how fun it is to stick everything in her mouth.
 
T

thefrogprincess

New member
Unfortunately there really is no avoiding pseudomonas. Its litterally everywhere! Just make sure you are diligent about hand washing and use a good antibacterial cleanser on surfacese. Most of them kill pseudomonas. But the fact is that eventually the baby is going to find out how fun it is to stick everything in her mouth.
 
T

thefrogprincess

New member
Unfortunately there really is no avoiding pseudomonas. Its litterally everywhere! Just make sure you are diligent about hand washing and use a good antibacterial cleanser on surfacese. Most of them kill pseudomonas. But the fact is that eventually the baby is going to find out how fun it is to stick everything in her mouth.
 
A

Andrea

Guest
We found out my son had CF at 2 weeks. We were still waiting on the newborn screen when the doctor said he was failure to thrive and she was concerned about him because he was eating so much. (He ate non stop and barely slept for the first two weeks) She said she thought he had CF and called the state to try to get the results. She set up an appt. for us at the CF center and the next day we found out that the results from the state were back and he had CF. He cultured a bacteria at 2 and a half weeks and was on antibiotics for 2 weeks twice a day. He also is DF508 homozygous. Now he is 3mths. and seems to be doing well. We do CPT everyday, he takes vitamin supplements, enzymes and prevacid. I know how you are feeling and you have found a great site for support and information.
 
A

Andrea

Guest
We found out my son had CF at 2 weeks. We were still waiting on the newborn screen when the doctor said he was failure to thrive and she was concerned about him because he was eating so much. (He ate non stop and barely slept for the first two weeks) She said she thought he had CF and called the state to try to get the results. She set up an appt. for us at the CF center and the next day we found out that the results from the state were back and he had CF. He cultured a bacteria at 2 and a half weeks and was on antibiotics for 2 weeks twice a day. He also is DF508 homozygous. Now he is 3mths. and seems to be doing well. We do CPT everyday, he takes vitamin supplements, enzymes and prevacid. I know how you are feeling and you have found a great site for support and information.
 
A

Andrea

Guest
We found out my son had CF at 2 weeks. We were still waiting on the newborn screen when the doctor said he was failure to thrive and she was concerned about him because he was eating so much. (He ate non stop and barely slept for the first two weeks) She said she thought he had CF and called the state to try to get the results. She set up an appt. for us at the CF center and the next day we found out that the results from the state were back and he had CF. He cultured a bacteria at 2 and a half weeks and was on antibiotics for 2 weeks twice a day. He also is DF508 homozygous. Now he is 3mths. and seems to be doing well. We do CPT everyday, he takes vitamin supplements, enzymes and prevacid. I know how you are feeling and you have found a great site for support and information.
 
A

Andrea

Guest
We found out my son had CF at 2 weeks. We were still waiting on the newborn screen when the doctor said he was failure to thrive and she was concerned about him because he was eating so much. (He ate non stop and barely slept for the first two weeks) She said she thought he had CF and called the state to try to get the results. She set up an appt. for us at the CF center and the next day we found out that the results from the state were back and he had CF. He cultured a bacteria at 2 and a half weeks and was on antibiotics for 2 weeks twice a day. He also is DF508 homozygous. Now he is 3mths. and seems to be doing well. We do CPT everyday, he takes vitamin supplements, enzymes and prevacid. I know how you are feeling and you have found a great site for support and information.
 
A

Andrea

Guest
We found out my son had CF at 2 weeks. We were still waiting on the newborn screen when the doctor said he was failure to thrive and she was concerned about him because he was eating so much. (He ate non stop and barely slept for the first two weeks) She said she thought he had CF and called the state to try to get the results. She set up an appt. for us at the CF center and the next day we found out that the results from the state were back and he had CF. He cultured a bacteria at 2 and a half weeks and was on antibiotics for 2 weeks twice a day. He also is DF508 homozygous. Now he is 3mths. and seems to be doing well. We do CPT everyday, he takes vitamin supplements, enzymes and prevacid. I know how you are feeling and you have found a great site for support and information.
 
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TobysMom

New member
My son was Dx at about that same age... and put on enzymes and vitamins right away. He was in the NICU for 4 weeks because he needed surgery for a meconium ilius blockage. He's home, on enzymes, vitamins, iron, sodium, zantac and a nebulizer and he's doing pretty well with it all. The only thing that I see is that his weight gain isn't as much as it should be (although he's finally looking a little chubbier) and that his poop REEKS!! LOL
 
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TobysMom

New member
My son was Dx at about that same age... and put on enzymes and vitamins right away. He was in the NICU for 4 weeks because he needed surgery for a meconium ilius blockage. He's home, on enzymes, vitamins, iron, sodium, zantac and a nebulizer and he's doing pretty well with it all. The only thing that I see is that his weight gain isn't as much as it should be (although he's finally looking a little chubbier) and that his poop REEKS!! LOL
 
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TobysMom

New member
My son was Dx at about that same age... and put on enzymes and vitamins right away. He was in the NICU for 4 weeks because he needed surgery for a meconium ilius blockage. He's home, on enzymes, vitamins, iron, sodium, zantac and a nebulizer and he's doing pretty well with it all. The only thing that I see is that his weight gain isn't as much as it should be (although he's finally looking a little chubbier) and that his poop REEKS!! LOL
 
T

TobysMom

New member
My son was Dx at about that same age... and put on enzymes and vitamins right away. He was in the NICU for 4 weeks because he needed surgery for a meconium ilius blockage. He's home, on enzymes, vitamins, iron, sodium, zantac and a nebulizer and he's doing pretty well with it all. The only thing that I see is that his weight gain isn't as much as it should be (although he's finally looking a little chubbier) and that his poop REEKS!! LOL
 
T

TobysMom

New member
My son was Dx at about that same age... and put on enzymes and vitamins right away. He was in the NICU for 4 weeks because he needed surgery for a meconium ilius blockage. He's home, on enzymes, vitamins, iron, sodium, zantac and a nebulizer and he's doing pretty well with it all. The only thing that I see is that his weight gain isn't as much as it should be (although he's finally looking a little chubbier) and that his poop REEKS!! LOL
 
D

Dori

New member
Hi There,

My son will be born w/CF soon, and the CF doctor at our CF clinic here in town, has told me that he will start the baby on enzymes, and antibiotics for RSV the minute he is born, no matter what the results of his sweat test. He said that he likes to get the babies on the enzymes early, to help with absorption of nutrients and he likes them to be on RSV ahead of the winter flu season, to help combat infections. My doc told me that 70% of newborns are diagnosed in the first year, so I don't think a diagnosis as early as yours is really that unusual. Be glad your state has implemented the testing and you are not going months trying to figure out what's wrong with the baby, and then get a diagnosis when she is really sick. I have met a few people at my clinic so far, and one is 56 and going strong, and she has double DF508. Fortunately we live in a time when medicine and technology are more advanced and we can get the best and most current treatments available. Good luck to you and your little one.

Dori, DF508 carrier/mom to Brandon, 17 months, 3359delC Carrier/soon to be mom to CF baby Brett
 
D

Dori

New member
Hi There,

My son will be born w/CF soon, and the CF doctor at our CF clinic here in town, has told me that he will start the baby on enzymes, and antibiotics for RSV the minute he is born, no matter what the results of his sweat test. He said that he likes to get the babies on the enzymes early, to help with absorption of nutrients and he likes them to be on RSV ahead of the winter flu season, to help combat infections. My doc told me that 70% of newborns are diagnosed in the first year, so I don't think a diagnosis as early as yours is really that unusual. Be glad your state has implemented the testing and you are not going months trying to figure out what's wrong with the baby, and then get a diagnosis when she is really sick. I have met a few people at my clinic so far, and one is 56 and going strong, and she has double DF508. Fortunately we live in a time when medicine and technology are more advanced and we can get the best and most current treatments available. Good luck to you and your little one.

Dori, DF508 carrier/mom to Brandon, 17 months, 3359delC Carrier/soon to be mom to CF baby Brett
 
D

Dori

New member
Hi There,

My son will be born w/CF soon, and the CF doctor at our CF clinic here in town, has told me that he will start the baby on enzymes, and antibiotics for RSV the minute he is born, no matter what the results of his sweat test. He said that he likes to get the babies on the enzymes early, to help with absorption of nutrients and he likes them to be on RSV ahead of the winter flu season, to help combat infections. My doc told me that 70% of newborns are diagnosed in the first year, so I don't think a diagnosis as early as yours is really that unusual. Be glad your state has implemented the testing and you are not going months trying to figure out what's wrong with the baby, and then get a diagnosis when she is really sick. I have met a few people at my clinic so far, and one is 56 and going strong, and she has double DF508. Fortunately we live in a time when medicine and technology are more advanced and we can get the best and most current treatments available. Good luck to you and your little one.

Dori, DF508 carrier/mom to Brandon, 17 months, 3359delC Carrier/soon to be mom to CF baby Brett
 
D

Dori

New member
Hi There,

My son will be born w/CF soon, and the CF doctor at our CF clinic here in town, has told me that he will start the baby on enzymes, and antibiotics for RSV the minute he is born, no matter what the results of his sweat test. He said that he likes to get the babies on the enzymes early, to help with absorption of nutrients and he likes them to be on RSV ahead of the winter flu season, to help combat infections. My doc told me that 70% of newborns are diagnosed in the first year, so I don't think a diagnosis as early as yours is really that unusual. Be glad your state has implemented the testing and you are not going months trying to figure out what's wrong with the baby, and then get a diagnosis when she is really sick. I have met a few people at my clinic so far, and one is 56 and going strong, and she has double DF508. Fortunately we live in a time when medicine and technology are more advanced and we can get the best and most current treatments available. Good luck to you and your little one.

Dori, DF508 carrier/mom to Brandon, 17 months, 3359delC Carrier/soon to be mom to CF baby Brett
 
D

Dori

New member
Hi There,
<br />
<br />My son will be born w/CF soon, and the CF doctor at our CF clinic here in town, has told me that he will start the baby on enzymes, and antibiotics for RSV the minute he is born, no matter what the results of his sweat test. He said that he likes to get the babies on the enzymes early, to help with absorption of nutrients and he likes them to be on RSV ahead of the winter flu season, to help combat infections. My doc told me that 70% of newborns are diagnosed in the first year, so I don't think a diagnosis as early as yours is really that unusual. Be glad your state has implemented the testing and you are not going months trying to figure out what's wrong with the baby, and then get a diagnosis when she is really sick. I have met a few people at my clinic so far, and one is 56 and going strong, and she has double DF508. Fortunately we live in a time when medicine and technology are more advanced and we can get the best and most current treatments available. Good luck to you and your little one.
<br />
<br />Dori, DF508 carrier/mom to Brandon, 17 months, 3359delC Carrier/soon to be mom to CF baby Brett
 
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