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New to site and CF
- Thread starter babyluke
- Start date
jenlevy33 - You are correct that both parents have to have a mutation in order for the child to possibly have cf. If your husband was tested while you were pregnant I would pretty much guarentee that they did not test for all the mutations that can cause cf - I think there are 1500 or so known at this time and that test is fairly expensive. Normally they would test for just the "most common" mutations which I believe only covers around 32 mutations. You need to find out how many mutations they tested your husband for and then make sure they are testing your child for <b>ALL</b> known mutations - the test is called Ambry and under the family section here Steve from Ambry has a thread where you can ask him questions directly.
jenlevy33 - You are correct that both parents have to have a mutation in order for the child to possibly have cf. If your husband was tested while you were pregnant I would pretty much guarentee that they did not test for all the mutations that can cause cf - I think there are 1500 or so known at this time and that test is fairly expensive. Normally they would test for just the "most common" mutations which I believe only covers around 32 mutations. You need to find out how many mutations they tested your husband for and then make sure they are testing your child for <b>ALL</b> known mutations - the test is called Ambry and under the family section here Steve from Ambry has a thread where you can ask him questions directly.
jenlevy33 - You are correct that both parents have to have a mutation in order for the child to possibly have cf. If your husband was tested while you were pregnant I would pretty much guarentee that they did not test for all the mutations that can cause cf - I think there are 1500 or so known at this time and that test is fairly expensive. Normally they would test for just the "most common" mutations which I believe only covers around 32 mutations. You need to find out how many mutations they tested your husband for and then make sure they are testing your child for <b>ALL</b> known mutations - the test is called Ambry and under the family section here Steve from Ambry has a thread where you can ask him questions directly.
jenlevy33 - You are correct that both parents have to have a mutation in order for the child to possibly have cf. If your husband was tested while you were pregnant I would pretty much guarentee that they did not test for all the mutations that can cause cf - I think there are 1500 or so known at this time and that test is fairly expensive. Normally they would test for just the "most common" mutations which I believe only covers around 32 mutations. You need to find out how many mutations they tested your husband for and then make sure they are testing your child for <b>ALL</b> known mutations - the test is called Ambry and under the family section here Steve from Ambry has a thread where you can ask him questions directly.
jenlevy33 - You are correct that both parents have to have a mutation in order for the child to possibly have cf. If your husband was tested while you were pregnant I would pretty much guarentee that they did not test for all the mutations that can cause cf - I think there are 1500 or so known at this time and that test is fairly expensive. Normally they would test for just the "most common" mutations which I believe only covers around 32 mutations. You need to find out how many mutations they tested your husband for and then make sure they are testing your child for <b>ALL</b> known mutations - the test is called Ambry and under the family section here Steve from Ambry has a thread where you can ask him questions directly.
HollyAnnsMom
New member
Angela:
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
HollyAnnsMom
New member
Angela:
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
HollyAnnsMom
New member
Angela:
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
HollyAnnsMom
New member
Angela:
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
HollyAnnsMom
New member
Angela:
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
Hi! I am new to all of this also, as my 3 month old Holly Ann was diagnosed 8/20/07 after positive newborn screening and 2 positive sweat tests. It is a hard thing to deal with I still have my ups and downs but just from reading here there is so much hope for our little ones. Holly Ann started enzymes, breathing treatments, and cpt on the same day as diagnosis and she is doing great. We had our one month follow up last week and she has gained 1 1/2 pounds in a month. Dr. was so proud however, they did up her enzyme dose and she is having less more firm bowel movements at this time and also seems to be more satisfied afer nursing. Good Luck to you and yours and know that we are traveling the same road and I know how you are feeling. My faith in GOD has been amazing and I know that is why I'm able to cope as well as I am right now.
Kristan
mommy to Holly Ann, 3 mo.
Patricia12569
New member
Angela,
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
Patricia12569
New member
Angela,
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
Patricia12569
New member
Angela,
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
Patricia12569
New member
Angela,
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
Patricia12569
New member
Angela,
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.
I am where you are at...my 3 month old grand baby was diagnosed with CF via a sweat test. She is on enzymes, percussions, breathing treatments, and Zantac. She is doing well, but she has her ups and downs. Most of her problems right now are the mucus. More often then not she is throwing up, but that is a good thing as she is getting it out of her system.
Hang in there and know that there are some wonderful people on this site <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me out a lot. You and all of yours are in my thoughts and prayers! Hugs to all.