Need support, what can I expect?

[Ratatosk]

Ugh, I can remember comments from family members that DS doesn't look sick, can't have CF 'cuz there's no family history. Prior to test results coming back, my own husband was starting to treat me as if I had Munchhausen by Proxy and seemed to think I wanted DS to be sick for the attention. Grrr! Fortunately, the genetic blood test results came back within 5 days. During that time a sweat test came back normal (32).

Are you going to an accreditted CF facility? I guess I'd be concerned with the stool issue and failure to thrive -- that he's not getting enough nutrients. Have they done a fecal fat test (Stool) to see if he's malabsorbing?

 

[Ratatosk]

Ugh, I can remember comments from family members that DS doesn't look sick, can't have CF 'cuz there's no family history. Prior to test results coming back, my own husband was starting to treat me as if I had Munchhausen by Proxy and seemed to think I wanted DS to be sick for the attention. Grrr! Fortunately, the genetic blood test results came back within 5 days. During that time a sweat test came back normal (32).

Are you going to an accreditted CF facility? I guess I'd be concerned with the stool issue and failure to thrive -- that he's not getting enough nutrients. Have they done a fecal fat test (Stool) to see if he's malabsorbing?

 

[Ratatosk]

Ugh, I can remember comments from family members that DS doesn't look sick, can't have CF 'cuz there's no family history. Prior to test results coming back, my own husband was starting to treat me as if I had Munchhausen by Proxy and seemed to think I wanted DS to be sick for the attention. Grrr! Fortunately, the genetic blood test results came back within 5 days. During that time a sweat test came back normal (32).

Are you going to an accreditted CF facility? I guess I'd be concerned with the stool issue and failure to thrive -- that he's not getting enough nutrients. Have they done a fecal fat test (Stool) to see if he's malabsorbing?

 

[Ratatosk]

Ugh, I can remember comments from family members that DS doesn't look sick, can't have CF 'cuz there's no family history. Prior to test results coming back, my own husband was starting to treat me as if I had Munchhausen by Proxy and seemed to think I wanted DS to be sick for the attention. Grrr! Fortunately, the genetic blood test results came back within 5 days. During that time a sweat test came back normal (32).

Are you going to an accreditted CF facility? I guess I'd be concerned with the stool issue and failure to thrive -- that he's not getting enough nutrients. Have they done a fecal fat test (Stool) to see if he's malabsorbing?

 

[JORDYSMOM]

Momja- I had to pay Ambry out of my pocket because my insurance wouldn't pay. It cost me just under $1000.00. ($947.00 or so) I paid 1/2 up front and they billed me the rest.

 

[JORDYSMOM]

Momja- I had to pay Ambry out of my pocket because my insurance wouldn't pay. It cost me just under $1000.00. ($947.00 or so) I paid 1/2 up front and they billed me the rest.

 

[JORDYSMOM]

Momja- I had to pay Ambry out of my pocket because my insurance wouldn't pay. It cost me just under $1000.00. ($947.00 or so) I paid 1/2 up front and they billed me the rest.

 

[JORDYSMOM]

Momja- I had to pay Ambry out of my pocket because my insurance wouldn't pay. It cost me just under $1000.00. ($947.00 or so) I paid 1/2 up front and they billed me the rest.

 

[JORDYSMOM]

Momja- I had to pay Ambry out of my pocket because my insurance wouldn't pay. It cost me just under $1000.00. ($947.00 or so) I paid 1/2 up front and they billed me the rest.

 

[JORDYSMOM]

Momja- I had to pay Ambry out of my pocket because my insurance wouldn't pay. It cost me just under $1000.00. ($947.00 or so) I paid 1/2 up front and they billed me the rest.

 

[dbtoo]

<a target=_blank class=ftalternatingbarlinklarge href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106PDF.pdf
">http://consensus.nih.gov/1997/...ticFibrosis106PDF.pdf
</a>
Try to get genetic testing.

 

[dbtoo]

<a target=_blank class=ftalternatingbarlinklarge href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106PDF.pdf
">http://consensus.nih.gov/1997/...ticFibrosis106PDF.pdf
</a>
Try to get genetic testing.

 

[dbtoo]

<a target=_blank class=ftalternatingbarlinklarge href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106PDF.pdf
">http://consensus.nih.gov/1997/...ticFibrosis106PDF.pdf
</a>
Try to get genetic testing.

 

[dbtoo]

<a target=_blank class=ftalternatingbarlinklarge href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106PDF.pdf
">http://consensus.nih.gov/1997/...ticFibrosis106PDF.pdf
</a>
Try to get genetic testing.

 

[dbtoo]

<a target=_blank class=ftalternatingbarlinklarge href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106PDF.pdf
">http://consensus.nih.gov/1997/...ticFibrosis106PDF.pdf
</a>
Try to get genetic testing.

 

[dbtoo]

<a target=_blank class=ftalternatingbarlinklarge href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106PDF.pdf
">http://consensus.nih.gov/1997/...ticFibrosis106PDF.pdf
</a>
Try to get genetic testing.

 

[momja]

Liza-We are going to Children's Hospital in Seattle, from what I've heard they have some of the top researchers in CF there.....My son had the Fecal Fat test done with other stool tests that all came back normal.

Thanks for the link and the cost information. We are also supposed to keep a food diary for three days and then meet with a nutritionist at the end of the month. I'm adding cream to his milk, butter to his foods, he eats lot's of cheeses and seems to have a great appetite.

If it isn't CF, could it possibly be a food allergy? I just don't know what is causing this. To me he eats well. From day one there was a red flag because he was nursing constantly and losing weight. I felt like such a failure. Finally at 10 months I was told to start supplementing with formula as well as solids and it seems to have gone downhill from there.

I didn't have the prenatal testing done to see if I was a carrier because of no family history. I remember reading the booklet and discussing it with DH and we decided against it because insurance didn't cover the test. I'm regretting that now.

 

[momja]

Liza-We are going to Children's Hospital in Seattle, from what I've heard they have some of the top researchers in CF there.....My son had the Fecal Fat test done with other stool tests that all came back normal.

Thanks for the link and the cost information. We are also supposed to keep a food diary for three days and then meet with a nutritionist at the end of the month. I'm adding cream to his milk, butter to his foods, he eats lot's of cheeses and seems to have a great appetite.

If it isn't CF, could it possibly be a food allergy? I just don't know what is causing this. To me he eats well. From day one there was a red flag because he was nursing constantly and losing weight. I felt like such a failure. Finally at 10 months I was told to start supplementing with formula as well as solids and it seems to have gone downhill from there.

I didn't have the prenatal testing done to see if I was a carrier because of no family history. I remember reading the booklet and discussing it with DH and we decided against it because insurance didn't cover the test. I'm regretting that now.

 

[momja]

Liza-We are going to Children's Hospital in Seattle, from what I've heard they have some of the top researchers in CF there.....My son had the Fecal Fat test done with other stool tests that all came back normal.

Thanks for the link and the cost information. We are also supposed to keep a food diary for three days and then meet with a nutritionist at the end of the month. I'm adding cream to his milk, butter to his foods, he eats lot's of cheeses and seems to have a great appetite.

If it isn't CF, could it possibly be a food allergy? I just don't know what is causing this. To me he eats well. From day one there was a red flag because he was nursing constantly and losing weight. I felt like such a failure. Finally at 10 months I was told to start supplementing with formula as well as solids and it seems to have gone downhill from there.

I didn't have the prenatal testing done to see if I was a carrier because of no family history. I remember reading the booklet and discussing it with DH and we decided against it because insurance didn't cover the test. I'm regretting that now.

 

[momja]

Liza-We are going to Children's Hospital in Seattle, from what I've heard they have some of the top researchers in CF there.....My son had the Fecal Fat test done with other stool tests that all came back normal.

Thanks for the link and the cost information. We are also supposed to keep a food diary for three days and then meet with a nutritionist at the end of the month. I'm adding cream to his milk, butter to his foods, he eats lot's of cheeses and seems to have a great appetite.

If it isn't CF, could it possibly be a food allergy? I just don't know what is causing this. To me he eats well. From day one there was a red flag because he was nursing constantly and losing weight. I felt like such a failure. Finally at 10 months I was told to start supplementing with formula as well as solids and it seems to have gone downhill from there.

I didn't have the prenatal testing done to see if I was a carrier because of no family history. I remember reading the booklet and discussing it with DH and we decided against it because insurance didn't cover the test. I'm regretting that now.