could this be CF???

bayleesmummy · Jun 23, 2007

hi, my son is 6 months old and we live in australia. he has had GI issues since birth. he has always been a very fussy baby and screamed all day till he was 4 months old. he is always gassy and either constipated or very runny greasy stools that are greeny black in colour. he vomits occasioally and is bottle averted. he is on ng tube and is awaiting G tube surgery. they always thought he was reflux and he has tried every reflux med and no improvement. he has always had a cough that is sometimes wet and very thick saliva. his nose is like a tap of mucas and he has 2 ear infections and other multiple infections that wont clear up with antibiotics. he has been on antibiotics for 2 and half weeks. the GI doc we are seeing at the moment thinks he has had some reflux issues in the past and now is just bottle averted. he also thinks he has allergies. i think its more... he has been hospitalised 4 times for 2 weeks at a time for infections and feeding difficulties. he has never had a swet test done but i have noticed on a few occasions he tastes salty when hes been sweaty. he had the heel prick test done at birth but i never got a call so there was no worries with CF there. he has had a blood test done but i dont think it was for CF. could he possibly be CF?? and also do kids with CF have issues with posseting blood and coughing up blood? also he has had a chest x ray done because of his coughing and it came up clear. if ive left anythng out which i probably have just ask. thanks in advance i am so worried about my boy...<img src="i/expressions/face-icon-small-sad.gif" border="0">

bayleesmummy · Jun 23, 2007

hi, my son is 6 months old and we live in australia. he has had GI issues since birth. he has always been a very fussy baby and screamed all day till he was 4 months old. he is always gassy and either constipated or very runny greasy stools that are greeny black in colour. he vomits occasioally and is bottle averted. he is on ng tube and is awaiting G tube surgery. they always thought he was reflux and he has tried every reflux med and no improvement. he has always had a cough that is sometimes wet and very thick saliva. his nose is like a tap of mucas and he has 2 ear infections and other multiple infections that wont clear up with antibiotics. he has been on antibiotics for 2 and half weeks. the GI doc we are seeing at the moment thinks he has had some reflux issues in the past and now is just bottle averted. he also thinks he has allergies. i think its more... he has been hospitalised 4 times for 2 weeks at a time for infections and feeding difficulties. he has never had a swet test done but i have noticed on a few occasions he tastes salty when hes been sweaty. he had the heel prick test done at birth but i never got a call so there was no worries with CF there. he has had a blood test done but i dont think it was for CF. could he possibly be CF?? and also do kids with CF have issues with posseting blood and coughing up blood? also he has had a chest x ray done because of his coughing and it came up clear. if ive left anythng out which i probably have just ask. thanks in advance i am so worried about my boy...<img src="i/expressions/face-icon-small-sad.gif" border="0">

bayleesmummy · Jun 23, 2007

hi, my son is 6 months old and we live in australia. he has had GI issues since birth. he has always been a very fussy baby and screamed all day till he was 4 months old. he is always gassy and either constipated or very runny greasy stools that are greeny black in colour. he vomits occasioally and is bottle averted. he is on ng tube and is awaiting G tube surgery. they always thought he was reflux and he has tried every reflux med and no improvement. he has always had a cough that is sometimes wet and very thick saliva. his nose is like a tap of mucas and he has 2 ear infections and other multiple infections that wont clear up with antibiotics. he has been on antibiotics for 2 and half weeks. the GI doc we are seeing at the moment thinks he has had some reflux issues in the past and now is just bottle averted. he also thinks he has allergies. i think its more... he has been hospitalised 4 times for 2 weeks at a time for infections and feeding difficulties. he has never had a swet test done but i have noticed on a few occasions he tastes salty when hes been sweaty. he had the heel prick test done at birth but i never got a call so there was no worries with CF there. he has had a blood test done but i dont think it was for CF. could he possibly be CF?? and also do kids with CF have issues with posseting blood and coughing up blood? also he has had a chest x ray done because of his coughing and it came up clear. if ive left anythng out which i probably have just ask. thanks in advance i am so worried about my boy...<img src="i/expressions/face-icon-small-sad.gif" border="0">

bayleesmummy · Jun 23, 2007

hi, my son is 6 months old and we live in australia. he has had GI issues since birth. he has always been a very fussy baby and screamed all day till he was 4 months old. he is always gassy and either constipated or very runny greasy stools that are greeny black in colour. he vomits occasioally and is bottle averted. he is on ng tube and is awaiting G tube surgery. they always thought he was reflux and he has tried every reflux med and no improvement. he has always had a cough that is sometimes wet and very thick saliva. his nose is like a tap of mucas and he has 2 ear infections and other multiple infections that wont clear up with antibiotics. he has been on antibiotics for 2 and half weeks. the GI doc we are seeing at the moment thinks he has had some reflux issues in the past and now is just bottle averted. he also thinks he has allergies. i think its more... he has been hospitalised 4 times for 2 weeks at a time for infections and feeding difficulties. he has never had a swet test done but i have noticed on a few occasions he tastes salty when hes been sweaty. he had the heel prick test done at birth but i never got a call so there was no worries with CF there. he has had a blood test done but i dont think it was for CF. could he possibly be CF?? and also do kids with CF have issues with posseting blood and coughing up blood? also he has had a chest x ray done because of his coughing and it came up clear. if ive left anythng out which i probably have just ask. thanks in advance i am so worried about my boy...<img src="i/expressions/face-icon-small-sad.gif" border="0">

bayleesmummy · Jun 23, 2007

hi, my son is 6 months old and we live in australia. he has had GI issues since birth. he has always been a very fussy baby and screamed all day till he was 4 months old. he is always gassy and either constipated or very runny greasy stools that are greeny black in colour. he vomits occasioally and is bottle averted. he is on ng tube and is awaiting G tube surgery. they always thought he was reflux and he has tried every reflux med and no improvement. he has always had a cough that is sometimes wet and very thick saliva. his nose is like a tap of mucas and he has 2 ear infections and other multiple infections that wont clear up with antibiotics. he has been on antibiotics for 2 and half weeks. the GI doc we are seeing at the moment thinks he has had some reflux issues in the past and now is just bottle averted. he also thinks he has allergies. i think its more... he has been hospitalised 4 times for 2 weeks at a time for infections and feeding difficulties. he has never had a swet test done but i have noticed on a few occasions he tastes salty when hes been sweaty. he had the heel prick test done at birth but i never got a call so there was no worries with CF there. he has had a blood test done but i dont think it was for CF. could he possibly be CF?? and also do kids with CF have issues with posseting blood and coughing up blood? also he has had a chest x ray done because of his coughing and it came up clear. if ive left anythng out which i probably have just ask. thanks in advance i am so worried about my boy...<img src="i/expressions/face-icon-small-sad.gif" border="0">

bayleesmummy · Jun 23, 2007

hi, my son is 6 months old and we live in australia. he has had GI issues since birth. he has always been a very fussy baby and screamed all day till he was 4 months old. he is always gassy and either constipated or very runny greasy stools that are greeny black in colour. he vomits occasioally and is bottle averted. he is on ng tube and is awaiting G tube surgery. they always thought he was reflux and he has tried every reflux med and no improvement. he has always had a cough that is sometimes wet and very thick saliva. his nose is like a tap of mucas and he has 2 ear infections and other multiple infections that wont clear up with antibiotics. he has been on antibiotics for 2 and half weeks. the GI doc we are seeing at the moment thinks he has had some reflux issues in the past and now is just bottle averted. he also thinks he has allergies. i think its more... he has been hospitalised 4 times for 2 weeks at a time for infections and feeding difficulties. he has never had a swet test done but i have noticed on a few occasions he tastes salty when hes been sweaty. he had the heel prick test done at birth but i never got a call so there was no worries with CF there. he has had a blood test done but i dont think it was for CF. could he possibly be CF?? and also do kids with CF have issues with posseting blood and coughing up blood? also he has had a chest x ray done because of his coughing and it came up clear. if ive left anythng out which i probably have just ask. thanks in advance i am so worried about my boy...<img src="i/expressions/face-icon-small-sad.gif" border="0">

JazzysMom · Jun 23, 2007

There are too many CF characteristics not to have him tested. The newborn screening is just that. A screening. It by no means is a sole determining factor. I wouldnt mess around & demand a CF sweat test followed my genetic testing. Its important to have the sweat test done at an accredited CF center. Here in the US we have a list of ones throughtout the country. This assures more accuracy. Your poor baby has gone through a lot. I hope you can find out answers quickly. Dont take no for an answer. I realize things work a bit different in other countries, but its very important that you push for the testing. Keep us updated!

BTW coughing up blood is an indication of respiratory issues. It doesnt have to just be CF. Someone with pneumonia can have it, but it is common with CF patients.

JazzysMom · Jun 23, 2007

There are too many CF characteristics not to have him tested. The newborn screening is just that. A screening. It by no means is a sole determining factor. I wouldnt mess around & demand a CF sweat test followed my genetic testing. Its important to have the sweat test done at an accredited CF center. Here in the US we have a list of ones throughtout the country. This assures more accuracy. Your poor baby has gone through a lot. I hope you can find out answers quickly. Dont take no for an answer. I realize things work a bit different in other countries, but its very important that you push for the testing. Keep us updated!

BTW coughing up blood is an indication of respiratory issues. It doesnt have to just be CF. Someone with pneumonia can have it, but it is common with CF patients.

JazzysMom · Jun 23, 2007

There are too many CF characteristics not to have him tested. The newborn screening is just that. A screening. It by no means is a sole determining factor. I wouldnt mess around & demand a CF sweat test followed my genetic testing. Its important to have the sweat test done at an accredited CF center. Here in the US we have a list of ones throughtout the country. This assures more accuracy. Your poor baby has gone through a lot. I hope you can find out answers quickly. Dont take no for an answer. I realize things work a bit different in other countries, but its very important that you push for the testing. Keep us updated!

BTW coughing up blood is an indication of respiratory issues. It doesnt have to just be CF. Someone with pneumonia can have it, but it is common with CF patients.

JazzysMom · Jun 23, 2007

There are too many CF characteristics not to have him tested. The newborn screening is just that. A screening. It by no means is a sole determining factor. I wouldnt mess around & demand a CF sweat test followed my genetic testing. Its important to have the sweat test done at an accredited CF center. Here in the US we have a list of ones throughtout the country. This assures more accuracy. Your poor baby has gone through a lot. I hope you can find out answers quickly. Dont take no for an answer. I realize things work a bit different in other countries, but its very important that you push for the testing. Keep us updated!

BTW coughing up blood is an indication of respiratory issues. It doesnt have to just be CF. Someone with pneumonia can have it, but it is common with CF patients.

JazzysMom · Jun 23, 2007

There are too many CF characteristics not to have him tested. The newborn screening is just that. A screening. It by no means is a sole determining factor. I wouldnt mess around & demand a CF sweat test followed my genetic testing. Its important to have the sweat test done at an accredited CF center. Here in the US we have a list of ones throughtout the country. This assures more accuracy. Your poor baby has gone through a lot. I hope you can find out answers quickly. Dont take no for an answer. I realize things work a bit different in other countries, but its very important that you push for the testing. Keep us updated!

BTW coughing up blood is an indication of respiratory issues. It doesnt have to just be CF. Someone with pneumonia can have it, but it is common with CF patients.

JazzysMom · Jun 23, 2007

There are too many CF characteristics not to have him tested. The newborn screening is just that. A screening. It by no means is a sole determining factor. I wouldnt mess around & demand a CF sweat test followed my genetic testing. Its important to have the sweat test done at an accredited CF center. Here in the US we have a list of ones throughtout the country. This assures more accuracy. Your poor baby has gone through a lot. I hope you can find out answers quickly. Dont take no for an answer. I realize things work a bit different in other countries, but its very important that you push for the testing. Keep us updated!

BTW coughing up blood is an indication of respiratory issues. It doesnt have to just be CF. Someone with pneumonia can have it, but it is common with CF patients.

bayleesmummy · Jun 23, 2007

oh yeah by the way he is on neocate because of believed dairy/soy allergy/intollerance but has shown minimal improvement and has no developmental issues i can see, does there have to be developmental issues to have CF? he really is a smart baby and waves and says ha ha sometimes and is nearly crawling. how do i push for a cf test? my GI seems to always have an answer for not doing a particular test...

bayleesmummy · Jun 23, 2007

oh yeah by the way he is on neocate because of believed dairy/soy allergy/intollerance but has shown minimal improvement and has no developmental issues i can see, does there have to be developmental issues to have CF? he really is a smart baby and waves and says ha ha sometimes and is nearly crawling. how do i push for a cf test? my GI seems to always have an answer for not doing a particular test...

bayleesmummy · Jun 23, 2007

oh yeah by the way he is on neocate because of believed dairy/soy allergy/intollerance but has shown minimal improvement and has no developmental issues i can see, does there have to be developmental issues to have CF? he really is a smart baby and waves and says ha ha sometimes and is nearly crawling. how do i push for a cf test? my GI seems to always have an answer for not doing a particular test...

bayleesmummy · Jun 23, 2007

oh yeah by the way he is on neocate because of believed dairy/soy allergy/intollerance but has shown minimal improvement and has no developmental issues i can see, does there have to be developmental issues to have CF? he really is a smart baby and waves and says ha ha sometimes and is nearly crawling. how do i push for a cf test? my GI seems to always have an answer for not doing a particular test...

bayleesmummy · Jun 23, 2007

oh yeah by the way he is on neocate because of believed dairy/soy allergy/intollerance but has shown minimal improvement and has no developmental issues i can see, does there have to be developmental issues to have CF? he really is a smart baby and waves and says ha ha sometimes and is nearly crawling. how do i push for a cf test? my GI seems to always have an answer for not doing a particular test...

bayleesmummy · Jun 23, 2007

oh yeah by the way he is on neocate because of believed dairy/soy allergy/intollerance but has shown minimal improvement and has no developmental issues i can see, does there have to be developmental issues to have CF? he really is a smart baby and waves and says ha ha sometimes and is nearly crawling. how do i push for a cf test? my GI seems to always have an answer for not doing a particular test...

JazzysMom · Jun 23, 2007

CF & developmental issues do not go hand in hand as a classic sign. There are some that might have issues, but there is usually something else invovled. IF its connected it would be rare & often is do to poor nutrition etc.

I suggest you tell him from your research and conversing with people who have CF or have CF children that you want the sweat test done, BUT you also want the extended panel of the genetic testing done. The extended panel would test for all known mutations of CF. Due to healthcare coverage etc I realize that you might have to take it step by step and cant get it all done at the same time. They might even want to start with the basic panel of mutation testing which would be the 30 most common out of the 1500 known. Genetic results take longer to get back then sweat test results.

Reinforce that you are aware how important early diagnoses & treatment is for CF so if there is a possibility of him having it, you want to know NOW.

IF you have a doctor that is a difficult one to persuade....just remember all of us here on the forum (which offers someone from just about all around the world) who knows the importance of this testing. If you need more encouragement or reinforcement to push for the needed testing just let us know!

JazzysMom · Jun 23, 2007

CF & developmental issues do not go hand in hand as a classic sign. There are some that might have issues, but there is usually something else invovled. IF its connected it would be rare & often is do to poor nutrition etc.

I suggest you tell him from your research and conversing with people who have CF or have CF children that you want the sweat test done, BUT you also want the extended panel of the genetic testing done. The extended panel would test for all known mutations of CF. Due to healthcare coverage etc I realize that you might have to take it step by step and cant get it all done at the same time. They might even want to start with the basic panel of mutation testing which would be the 30 most common out of the 1500 known. Genetic results take longer to get back then sweat test results.

Reinforce that you are aware how important early diagnoses & treatment is for CF so if there is a possibility of him having it, you want to know NOW.

IF you have a doctor that is a difficult one to persuade....just remember all of us here on the forum (which offers someone from just about all around the world) who knows the importance of this testing. If you need more encouragement or reinforcement to push for the needed testing just let us know!

could this be CF???

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