not diagnosed but have questions

mikismum · Jul 18, 2007

I hope you all dont mind me posting in here, im concerned about my 16 months old daughter miki, she has had major GI issues since birth firstly it was pyloric stenoisis (erelevent to CF i think) then she continued to puke badly and was diagnoes with reflux, then was diagnosed with dairy and soy protein inoterence and put on neocate she imprived but not enough she is badly FTT and is 100 percent G tube fed, she has delayed gastric emptying so is fed on a continuos feed, she isnt gaining weight she weight around 15 pounds ant 16 months old, due to this we truied her on liqudgen and easily digested fat she has been on this for 2 weeks and rather that putting on weight she has infact lost weight as she is not absorbing the fat and not tolerating the feeds at all she iconstipated all the time usualy but add anything other than neocate and she gets liquid poos instantly, she has also had a nissen fundopilcation to control her reflux,

i spoke to her dietican today and she is concerned as too why a fundo g tube kid 3573 kj a day s not gaining weight at all and not able to tolerate gluten, dairy, soy and as we recently found out fat

miki had a sweat test done at 6 months of age when, as her gi thought there was a psoibility tthat she may have CF due to all he digestion issues she also had anal prolaps which they told me was anohter symtom of CF, a few days after the test i spoke with the GI liason nurse and got the resluts her leval was 36 and that ment she doesnt have CF obbvioulsy we was very happy about this, since then however i have have been told that a relult over 30 is inconclusive and further testing is required is this true

this may seem silly for me asking but nothing seems to explain my DD health problems and CF has come uop numerous times her dieticain told me today that CF would explain all mikis problems

thanks in advance

mikismum · Jul 18, 2007

I hope you all dont mind me posting in here, im concerned about my 16 months old daughter miki, she has had major GI issues since birth firstly it was pyloric stenoisis (erelevent to CF i think) then she continued to puke badly and was diagnoes with reflux, then was diagnosed with dairy and soy protein inoterence and put on neocate she imprived but not enough she is badly FTT and is 100 percent G tube fed, she has delayed gastric emptying so is fed on a continuos feed, she isnt gaining weight she weight around 15 pounds ant 16 months old, due to this we truied her on liqudgen and easily digested fat she has been on this for 2 weeks and rather that putting on weight she has infact lost weight as she is not absorbing the fat and not tolerating the feeds at all she iconstipated all the time usualy but add anything other than neocate and she gets liquid poos instantly, she has also had a nissen fundopilcation to control her reflux,

i spoke to her dietican today and she is concerned as too why a fundo g tube kid 3573 kj a day s not gaining weight at all and not able to tolerate gluten, dairy, soy and as we recently found out fat

miki had a sweat test done at 6 months of age when, as her gi thought there was a psoibility tthat she may have CF due to all he digestion issues she also had anal prolaps which they told me was anohter symtom of CF, a few days after the test i spoke with the GI liason nurse and got the resluts her leval was 36 and that ment she doesnt have CF obbvioulsy we was very happy about this, since then however i have have been told that a relult over 30 is inconclusive and further testing is required is this true

this may seem silly for me asking but nothing seems to explain my DD health problems and CF has come uop numerous times her dieticain told me today that CF would explain all mikis problems

thanks in advance

mikismum · Jul 18, 2007

I hope you all dont mind me posting in here, im concerned about my 16 months old daughter miki, she has had major GI issues since birth firstly it was pyloric stenoisis (erelevent to CF i think) then she continued to puke badly and was diagnoes with reflux, then was diagnosed with dairy and soy protein inoterence and put on neocate she imprived but not enough she is badly FTT and is 100 percent G tube fed, she has delayed gastric emptying so is fed on a continuos feed, she isnt gaining weight she weight around 15 pounds ant 16 months old, due to this we truied her on liqudgen and easily digested fat she has been on this for 2 weeks and rather that putting on weight she has infact lost weight as she is not absorbing the fat and not tolerating the feeds at all she iconstipated all the time usualy but add anything other than neocate and she gets liquid poos instantly, she has also had a nissen fundopilcation to control her reflux,

i spoke to her dietican today and she is concerned as too why a fundo g tube kid 3573 kj a day s not gaining weight at all and not able to tolerate gluten, dairy, soy and as we recently found out fat

miki had a sweat test done at 6 months of age when, as her gi thought there was a psoibility tthat she may have CF due to all he digestion issues she also had anal prolaps which they told me was anohter symtom of CF, a few days after the test i spoke with the GI liason nurse and got the resluts her leval was 36 and that ment she doesnt have CF obbvioulsy we was very happy about this, since then however i have have been told that a relult over 30 is inconclusive and further testing is required is this true

this may seem silly for me asking but nothing seems to explain my DD health problems and CF has come uop numerous times her dieticain told me today that CF would explain all mikis problems

thanks in advance

mikismum · Jul 18, 2007

I hope you all dont mind me posting in here, im concerned about my 16 months old daughter miki, she has had major GI issues since birth firstly it was pyloric stenoisis (erelevent to CF i think) then she continued to puke badly and was diagnoes with reflux, then was diagnosed with dairy and soy protein inoterence and put on neocate she imprived but not enough she is badly FTT and is 100 percent G tube fed, she has delayed gastric emptying so is fed on a continuos feed, she isnt gaining weight she weight around 15 pounds ant 16 months old, due to this we truied her on liqudgen and easily digested fat she has been on this for 2 weeks and rather that putting on weight she has infact lost weight as she is not absorbing the fat and not tolerating the feeds at all she iconstipated all the time usualy but add anything other than neocate and she gets liquid poos instantly, she has also had a nissen fundopilcation to control her reflux,

i spoke to her dietican today and she is concerned as too why a fundo g tube kid 3573 kj a day s not gaining weight at all and not able to tolerate gluten, dairy, soy and as we recently found out fat

miki had a sweat test done at 6 months of age when, as her gi thought there was a psoibility tthat she may have CF due to all he digestion issues she also had anal prolaps which they told me was anohter symtom of CF, a few days after the test i spoke with the GI liason nurse and got the resluts her leval was 36 and that ment she doesnt have CF obbvioulsy we was very happy about this, since then however i have have been told that a relult over 30 is inconclusive and further testing is required is this true

this may seem silly for me asking but nothing seems to explain my DD health problems and CF has come uop numerous times her dieticain told me today that CF would explain all mikis problems

thanks in advance

mikismum · Jul 18, 2007

I hope you all dont mind me posting in here, im concerned about my 16 months old daughter miki, she has had major GI issues since birth firstly it was pyloric stenoisis (erelevent to CF i think) then she continued to puke badly and was diagnoes with reflux, then was diagnosed with dairy and soy protein inoterence and put on neocate she imprived but not enough she is badly FTT and is 100 percent G tube fed, she has delayed gastric emptying so is fed on a continuos feed, she isnt gaining weight she weight around 15 pounds ant 16 months old, due to this we truied her on liqudgen and easily digested fat she has been on this for 2 weeks and rather that putting on weight she has infact lost weight as she is not absorbing the fat and not tolerating the feeds at all she iconstipated all the time usualy but add anything other than neocate and she gets liquid poos instantly, she has also had a nissen fundopilcation to control her reflux,

i spoke to her dietican today and she is concerned as too why a fundo g tube kid 3573 kj a day s not gaining weight at all and not able to tolerate gluten, dairy, soy and as we recently found out fat

miki had a sweat test done at 6 months of age when, as her gi thought there was a psoibility tthat she may have CF due to all he digestion issues she also had anal prolaps which they told me was anohter symtom of CF, a few days after the test i spoke with the GI liason nurse and got the resluts her leval was 36 and that ment she doesnt have CF obbvioulsy we was very happy about this, since then however i have have been told that a relult over 30 is inconclusive and further testing is required is this true

this may seem silly for me asking but nothing seems to explain my DD health problems and CF has come uop numerous times her dieticain told me today that CF would explain all mikis problems

thanks in advance

mikismum · Jul 18, 2007

I hope you all dont mind me posting in here, im concerned about my 16 months old daughter miki, she has had major GI issues since birth firstly it was pyloric stenoisis (erelevent to CF i think) then she continued to puke badly and was diagnoes with reflux, then was diagnosed with dairy and soy protein inoterence and put on neocate she imprived but not enough she is badly FTT and is 100 percent G tube fed, she has delayed gastric emptying so is fed on a continuos feed, she isnt gaining weight she weight around 15 pounds ant 16 months old, due to this we truied her on liqudgen and easily digested fat she has been on this for 2 weeks and rather that putting on weight she has infact lost weight as she is not absorbing the fat and not tolerating the feeds at all she iconstipated all the time usualy but add anything other than neocate and she gets liquid poos instantly, she has also had a nissen fundopilcation to control her reflux,

i spoke to her dietican today and she is concerned as too why a fundo g tube kid 3573 kj a day s not gaining weight at all and not able to tolerate gluten, dairy, soy and as we recently found out fat

miki had a sweat test done at 6 months of age when, as her gi thought there was a psoibility tthat she may have CF due to all he digestion issues she also had anal prolaps which they told me was anohter symtom of CF, a few days after the test i spoke with the GI liason nurse and got the resluts her leval was 36 and that ment she doesnt have CF obbvioulsy we was very happy about this, since then however i have have been told that a relult over 30 is inconclusive and further testing is required is this true

this may seem silly for me asking but nothing seems to explain my DD health problems and CF has come uop numerous times her dieticain told me today that CF would explain all mikis problems

thanks in advance

JazzysMom · Jul 18, 2007

OK First lets make sure the sweat test was done at an accredited CF center. This helps assure the greatest accuracy. Now IF it was and 36 was correct even tho that is on the lower side.....if you read the forum & blogs you will find that there are many, many people with low sweat tests results who have been diagnosed with CF thru genetic testing.

I would push for the genetic testing. You should ask for a Full Amplified Panel by Ambry Genetics. This will test for all known mutations. Getting anything less puts you at risk of missing one of the more rare mutations.

Ambry Genetics has a website as well as being a sponsor here if you need to refer to them to get the doctors jump started.

I think it best that you push for it because of your childs symptoms. Every CFer presents symptoms differently even with the most common ones. We are finding that there isnt as much about CF that is textbook true as we use to think. Many variables can fall into play.

Good Luck and Let us know what happens or come back for more feedback. The earlier the diagnoses if she has CF the better chances she has!!

JazzysMom · Jul 18, 2007

OK First lets make sure the sweat test was done at an accredited CF center. This helps assure the greatest accuracy. Now IF it was and 36 was correct even tho that is on the lower side.....if you read the forum & blogs you will find that there are many, many people with low sweat tests results who have been diagnosed with CF thru genetic testing.

I would push for the genetic testing. You should ask for a Full Amplified Panel by Ambry Genetics. This will test for all known mutations. Getting anything less puts you at risk of missing one of the more rare mutations.

Ambry Genetics has a website as well as being a sponsor here if you need to refer to them to get the doctors jump started.

I think it best that you push for it because of your childs symptoms. Every CFer presents symptoms differently even with the most common ones. We are finding that there isnt as much about CF that is textbook true as we use to think. Many variables can fall into play.

Good Luck and Let us know what happens or come back for more feedback. The earlier the diagnoses if she has CF the better chances she has!!

JazzysMom · Jul 18, 2007

OK First lets make sure the sweat test was done at an accredited CF center. This helps assure the greatest accuracy. Now IF it was and 36 was correct even tho that is on the lower side.....if you read the forum & blogs you will find that there are many, many people with low sweat tests results who have been diagnosed with CF thru genetic testing.

I would push for the genetic testing. You should ask for a Full Amplified Panel by Ambry Genetics. This will test for all known mutations. Getting anything less puts you at risk of missing one of the more rare mutations.

Ambry Genetics has a website as well as being a sponsor here if you need to refer to them to get the doctors jump started.

I think it best that you push for it because of your childs symptoms. Every CFer presents symptoms differently even with the most common ones. We are finding that there isnt as much about CF that is textbook true as we use to think. Many variables can fall into play.

Good Luck and Let us know what happens or come back for more feedback. The earlier the diagnoses if she has CF the better chances she has!!

JazzysMom · Jul 18, 2007

OK First lets make sure the sweat test was done at an accredited CF center. This helps assure the greatest accuracy. Now IF it was and 36 was correct even tho that is on the lower side.....if you read the forum & blogs you will find that there are many, many people with low sweat tests results who have been diagnosed with CF thru genetic testing.

I would push for the genetic testing. You should ask for a Full Amplified Panel by Ambry Genetics. This will test for all known mutations. Getting anything less puts you at risk of missing one of the more rare mutations.

Ambry Genetics has a website as well as being a sponsor here if you need to refer to them to get the doctors jump started.

I think it best that you push for it because of your childs symptoms. Every CFer presents symptoms differently even with the most common ones. We are finding that there isnt as much about CF that is textbook true as we use to think. Many variables can fall into play.

Good Luck and Let us know what happens or come back for more feedback. The earlier the diagnoses if she has CF the better chances she has!!

JazzysMom · Jul 18, 2007

OK First lets make sure the sweat test was done at an accredited CF center. This helps assure the greatest accuracy. Now IF it was and 36 was correct even tho that is on the lower side.....if you read the forum & blogs you will find that there are many, many people with low sweat tests results who have been diagnosed with CF thru genetic testing.

I would push for the genetic testing. You should ask for a Full Amplified Panel by Ambry Genetics. This will test for all known mutations. Getting anything less puts you at risk of missing one of the more rare mutations.

Ambry Genetics has a website as well as being a sponsor here if you need to refer to them to get the doctors jump started.

I think it best that you push for it because of your childs symptoms. Every CFer presents symptoms differently even with the most common ones. We are finding that there isnt as much about CF that is textbook true as we use to think. Many variables can fall into play.

Good Luck and Let us know what happens or come back for more feedback. The earlier the diagnoses if she has CF the better chances she has!!

JazzysMom · Jul 18, 2007

OK First lets make sure the sweat test was done at an accredited CF center. This helps assure the greatest accuracy. Now IF it was and 36 was correct even tho that is on the lower side.....if you read the forum & blogs you will find that there are many, many people with low sweat tests results who have been diagnosed with CF thru genetic testing.

I would push for the genetic testing. You should ask for a Full Amplified Panel by Ambry Genetics. This will test for all known mutations. Getting anything less puts you at risk of missing one of the more rare mutations.

Ambry Genetics has a website as well as being a sponsor here if you need to refer to them to get the doctors jump started.

I think it best that you push for it because of your childs symptoms. Every CFer presents symptoms differently even with the most common ones. We are finding that there isnt as much about CF that is textbook true as we use to think. Many variables can fall into play.

Good Luck and Let us know what happens or come back for more feedback. The earlier the diagnoses if she has CF the better chances she has!!

Ratatosk · Jul 18, 2007