Need support, what can I expect?

M

momja

New member
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.
 
M

momja

New member
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.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>



I didn't have the prenatal testing done to see if I was a carrier because of no family history. </end quote></div>

95% of us don't have family history.

I hope you will push for an Ambry Amplified genetic test.

I would call the insurance yourself and not rely on the doctor to know the ins and outs of your plan. Chances are the doc is making assumptions about your insurance.

Insurance will tell you what's covered. Demad the test. There is no reason to wait - it's only a simple blood test.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>



I didn't have the prenatal testing done to see if I was a carrier because of no family history. </end quote></div>

95% of us don't have family history.

I hope you will push for an Ambry Amplified genetic test.

I would call the insurance yourself and not rely on the doctor to know the ins and outs of your plan. Chances are the doc is making assumptions about your insurance.

Insurance will tell you what's covered. Demad the test. There is no reason to wait - it's only a simple blood test.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>



I didn't have the prenatal testing done to see if I was a carrier because of no family history. </end quote></div>

95% of us don't have family history.

I hope you will push for an Ambry Amplified genetic test.

I would call the insurance yourself and not rely on the doctor to know the ins and outs of your plan. Chances are the doc is making assumptions about your insurance.

Insurance will tell you what's covered. Demad the test. There is no reason to wait - it's only a simple blood test.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>



I didn't have the prenatal testing done to see if I was a carrier because of no family history. </end quote></div>

95% of us don't have family history.

I hope you will push for an Ambry Amplified genetic test.

I would call the insurance yourself and not rely on the doctor to know the ins and outs of your plan. Chances are the doc is making assumptions about your insurance.

Insurance will tell you what's covered. Demad the test. There is no reason to wait - it's only a simple blood test.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>



I didn't have the prenatal testing done to see if I was a carrier because of no family history. </end quote>

95% of us don't have family history.

I hope you will push for an Ambry Amplified genetic test.

I would call the insurance yourself and not rely on the doctor to know the ins and outs of your plan. Chances are the doc is making assumptions about your insurance.

Insurance will tell you what's covered. Demad the test. There is no reason to wait - it's only a simple blood test.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>



I didn't have the prenatal testing done to see if I was a carrier because of no family history. </end quote>

95% of us don't have family history.

I hope you will push for an Ambry Amplified genetic test.

I would call the insurance yourself and not rely on the doctor to know the ins and outs of your plan. Chances are the doc is making assumptions about your insurance.

Insurance will tell you what's covered. Demad the test. There is no reason to wait - it's only a simple blood test.
 
L

lilismom

Active member
We go to Seattle Children's as well. Before my daughters CF diagnosis last April her dr though she may have celiacs disease (basically a severe allergy to the gluten in wheat) That can cause malabsorption as well. Cutting out flour helped my daughters digestion a lot but it still was off so that's when the possibility of CF came up for her. So if CF is is ruled out for you after genetic tests you may want to get him tested for Celiacs.
 
L

lilismom

Active member
We go to Seattle Children's as well. Before my daughters CF diagnosis last April her dr though she may have celiacs disease (basically a severe allergy to the gluten in wheat) That can cause malabsorption as well. Cutting out flour helped my daughters digestion a lot but it still was off so that's when the possibility of CF came up for her. So if CF is is ruled out for you after genetic tests you may want to get him tested for Celiacs.
 
L

lilismom

Active member
We go to Seattle Children's as well. Before my daughters CF diagnosis last April her dr though she may have celiacs disease (basically a severe allergy to the gluten in wheat) That can cause malabsorption as well. Cutting out flour helped my daughters digestion a lot but it still was off so that's when the possibility of CF came up for her. So if CF is is ruled out for you after genetic tests you may want to get him tested for Celiacs.
 
L

lilismom

Active member
We go to Seattle Children's as well. Before my daughters CF diagnosis last April her dr though she may have celiacs disease (basically a severe allergy to the gluten in wheat) That can cause malabsorption as well. Cutting out flour helped my daughters digestion a lot but it still was off so that's when the possibility of CF came up for her. So if CF is is ruled out for you after genetic tests you may want to get him tested for Celiacs.
 
L

lilismom

Active member
We go to Seattle Children's as well. Before my daughters CF diagnosis last April her dr though she may have celiacs disease (basically a severe allergy to the gluten in wheat) That can cause malabsorption as well. Cutting out flour helped my daughters digestion a lot but it still was off so that's when the possibility of CF came up for her. So if CF is is ruled out for you after genetic tests you may want to get him tested for Celiacs.
 
L

lilismom

Active member
We go to Seattle Children's as well. Before my daughters CF diagnosis last April her dr though she may have celiacs disease (basically a severe allergy to the gluten in wheat) That can cause malabsorption as well. Cutting out flour helped my daughters digestion a lot but it still was off so that's when the possibility of CF came up for her. So if CF is is ruled out for you after genetic tests you may want to get him tested for Celiacs.
 
W

worriedmom

Guest
We too are going thtrough a similar situation with our daughter who has had two sweat tests ,one didn't collect enough and the second was a "normal"32. We are now fighting with the doctor to try to find out whether he will order a genetic test, which I am pushing for. they will test them for everything else. We have an appointment to see him next week so I can "demand" them to do it. If not someone on this site had suggested us to speak to an attorney and have the doctor put it in writing why he won't do it. At this point, we too, have had hundreds of thousands of dollars spent (our insurance) and still no answers,so what's one more test that we are requesting. Good Luck to you, I do know there is nothing worse than waiting...
 
W

worriedmom

Guest
We too are going thtrough a similar situation with our daughter who has had two sweat tests ,one didn't collect enough and the second was a "normal"32. We are now fighting with the doctor to try to find out whether he will order a genetic test, which I am pushing for. they will test them for everything else. We have an appointment to see him next week so I can "demand" them to do it. If not someone on this site had suggested us to speak to an attorney and have the doctor put it in writing why he won't do it. At this point, we too, have had hundreds of thousands of dollars spent (our insurance) and still no answers,so what's one more test that we are requesting. Good Luck to you, I do know there is nothing worse than waiting...
 
W

worriedmom

Guest
We too are going thtrough a similar situation with our daughter who has had two sweat tests ,one didn't collect enough and the second was a "normal"32. We are now fighting with the doctor to try to find out whether he will order a genetic test, which I am pushing for. they will test them for everything else. We have an appointment to see him next week so I can "demand" them to do it. If not someone on this site had suggested us to speak to an attorney and have the doctor put it in writing why he won't do it. At this point, we too, have had hundreds of thousands of dollars spent (our insurance) and still no answers,so what's one more test that we are requesting. Good Luck to you, I do know there is nothing worse than waiting...
 
W

worriedmom

Guest
We too are going thtrough a similar situation with our daughter who has had two sweat tests ,one didn't collect enough and the second was a "normal"32. We are now fighting with the doctor to try to find out whether he will order a genetic test, which I am pushing for. they will test them for everything else. We have an appointment to see him next week so I can "demand" them to do it. If not someone on this site had suggested us to speak to an attorney and have the doctor put it in writing why he won't do it. At this point, we too, have had hundreds of thousands of dollars spent (our insurance) and still no answers,so what's one more test that we are requesting. Good Luck to you, I do know there is nothing worse than waiting...
 
W

worriedmom

Guest
We too are going thtrough a similar situation with our daughter who has had two sweat tests ,one didn't collect enough and the second was a "normal"32. We are now fighting with the doctor to try to find out whether he will order a genetic test, which I am pushing for. they will test them for everything else. We have an appointment to see him next week so I can "demand" them to do it. If not someone on this site had suggested us to speak to an attorney and have the doctor put it in writing why he won't do it. At this point, we too, have had hundreds of thousands of dollars spent (our insurance) and still no answers,so what's one more test that we are requesting. Good Luck to you, I do know there is nothing worse than waiting...
 
W

worriedmom

Guest
We too are going thtrough a similar situation with our daughter who has had two sweat tests ,one didn't collect enough and the second was a "normal"32. We are now fighting with the doctor to try to find out whether he will order a genetic test, which I am pushing for. they will test them for everything else. We have an appointment to see him next week so I can "demand" them to do it. If not someone on this site had suggested us to speak to an attorney and have the doctor put it in writing why he won't do it. At this point, we too, have had hundreds of thousands of dollars spent (our insurance) and still no answers,so what's one more test that we are requesting. Good Luck to you, I do know there is nothing worse than waiting...
 
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