Maybe our breastmilk isn't so normal afterall?

L

LouLou

New member
So all breastmilk is usually low in Vitamin D. Hence the reason most pediatricians recommend Trivisol (Vit D supplement) for infants of breastfeeding mothers. When Isaac's ped suggested Trivisol I researched it and was disturbed to find that Vit A & C are in it and no good tests have been completed regarding infant supplementation of A & C. So I followed the suggestions of sunlight exposure in <i>The Nursing Mother's Companion </i> and declined administering the Trivisol.

At age 3 mo. Isaac's genetic results of 2 cf mutations came back. He then went in for a cf annual check up where amongst other tests that we are all to familiar with they tested his vitamin levels. They reported that all were normal but with his recent dry skin that I brought to their attention b/c I wanted to make sure it wasn't Vit E definiciency related. They are now saying he is low in Vit D enough that he should be on a supplement. So this week I bought him straight Vit D that they gave me a rx for but unfortunately it is $113 OTC.

I got on google and surfed for signs of Rickets becuase I know this is a big issue with Vit. D definiciency. It's also on the rise in America. He seems to have a few signs of Rickets. Things I never would have associated as an issue if I hadn't known to look for them. All this stuff...I never would have known if I hadn't pushed for sequencing of Isaac's genes. I mean he's got no signs of cf at all and who has their child's vitamin levels checked?! Interesting how things work.

Well we go to the peds on Tues for a well check and we'll bring all of this to their attention and see what they have to say but I just wanted to let you all know that your breastmilk - even more so than a well woman - might be low in Vit. D. Oh and during pregnancy and post preg. I have always been within normal ranges of Vit. D levels.
 
L

LouLou

New member
So all breastmilk is usually low in Vitamin D. Hence the reason most pediatricians recommend Trivisol (Vit D supplement) for infants of breastfeeding mothers. When Isaac's ped suggested Trivisol I researched it and was disturbed to find that Vit A & C are in it and no good tests have been completed regarding infant supplementation of A & C. So I followed the suggestions of sunlight exposure in <i>The Nursing Mother's Companion </i> and declined administering the Trivisol.

At age 3 mo. Isaac's genetic results of 2 cf mutations came back. He then went in for a cf annual check up where amongst other tests that we are all to familiar with they tested his vitamin levels. They reported that all were normal but with his recent dry skin that I brought to their attention b/c I wanted to make sure it wasn't Vit E definiciency related. They are now saying he is low in Vit D enough that he should be on a supplement. So this week I bought him straight Vit D that they gave me a rx for but unfortunately it is $113 OTC.

I got on google and surfed for signs of Rickets becuase I know this is a big issue with Vit. D definiciency. It's also on the rise in America. He seems to have a few signs of Rickets. Things I never would have associated as an issue if I hadn't known to look for them. All this stuff...I never would have known if I hadn't pushed for sequencing of Isaac's genes. I mean he's got no signs of cf at all and who has their child's vitamin levels checked?! Interesting how things work.

Well we go to the peds on Tues for a well check and we'll bring all of this to their attention and see what they have to say but I just wanted to let you all know that your breastmilk - even more so than a well woman - might be low in Vit. D. Oh and during pregnancy and post preg. I have always been within normal ranges of Vit. D levels.
 
L

LouLou

New member
So all breastmilk is usually low in Vitamin D. Hence the reason most pediatricians recommend Trivisol (Vit D supplement) for infants of breastfeeding mothers. When Isaac's ped suggested Trivisol I researched it and was disturbed to find that Vit A & C are in it and no good tests have been completed regarding infant supplementation of A & C. So I followed the suggestions of sunlight exposure in <i>The Nursing Mother's Companion </i> and declined administering the Trivisol.

At age 3 mo. Isaac's genetic results of 2 cf mutations came back. He then went in for a cf annual check up where amongst other tests that we are all to familiar with they tested his vitamin levels. They reported that all were normal but with his recent dry skin that I brought to their attention b/c I wanted to make sure it wasn't Vit E definiciency related. They are now saying he is low in Vit D enough that he should be on a supplement. So this week I bought him straight Vit D that they gave me a rx for but unfortunately it is $113 OTC.

I got on google and surfed for signs of Rickets becuase I know this is a big issue with Vit. D definiciency. It's also on the rise in America. He seems to have a few signs of Rickets. Things I never would have associated as an issue if I hadn't known to look for them. All this stuff...I never would have known if I hadn't pushed for sequencing of Isaac's genes. I mean he's got no signs of cf at all and who has their child's vitamin levels checked?! Interesting how things work.

Well we go to the peds on Tues for a well check and we'll bring all of this to their attention and see what they have to say but I just wanted to let you all know that your breastmilk - even more so than a well woman - might be low in Vit. D. Oh and during pregnancy and post preg. I have always been within normal ranges of Vit. D levels.
 
L

LouLou

New member
So all breastmilk is usually low in Vitamin D. Hence the reason most pediatricians recommend Trivisol (Vit D supplement) for infants of breastfeeding mothers. When Isaac's ped suggested Trivisol I researched it and was disturbed to find that Vit A & C are in it and no good tests have been completed regarding infant supplementation of A & C. So I followed the suggestions of sunlight exposure in <i>The Nursing Mother's Companion </i> and declined administering the Trivisol.

At age 3 mo. Isaac's genetic results of 2 cf mutations came back. He then went in for a cf annual check up where amongst other tests that we are all to familiar with they tested his vitamin levels. They reported that all were normal but with his recent dry skin that I brought to their attention b/c I wanted to make sure it wasn't Vit E definiciency related. They are now saying he is low in Vit D enough that he should be on a supplement. So this week I bought him straight Vit D that they gave me a rx for but unfortunately it is $113 OTC.

I got on google and surfed for signs of Rickets becuase I know this is a big issue with Vit. D definiciency. It's also on the rise in America. He seems to have a few signs of Rickets. Things I never would have associated as an issue if I hadn't known to look for them. All this stuff...I never would have known if I hadn't pushed for sequencing of Isaac's genes. I mean he's got no signs of cf at all and who has their child's vitamin levels checked?! Interesting how things work.

Well we go to the peds on Tues for a well check and we'll bring all of this to their attention and see what they have to say but I just wanted to let you all know that your breastmilk - even more so than a well woman - might be low in Vit. D. Oh and during pregnancy and post preg. I have always been within normal ranges of Vit. D levels.
 
L

LouLou

New member
So all breastmilk is usually low in Vitamin D. Hence the reason most pediatricians recommend Trivisol (Vit D supplement) for infants of breastfeeding mothers. When Isaac's ped suggested Trivisol I researched it and was disturbed to find that Vit A & C are in it and no good tests have been completed regarding infant supplementation of A & C. So I followed the suggestions of sunlight exposure in <i>The Nursing Mother's Companion </i> and declined administering the Trivisol.

At age 3 mo. Isaac's genetic results of 2 cf mutations came back. He then went in for a cf annual check up where amongst other tests that we are all to familiar with they tested his vitamin levels. They reported that all were normal but with his recent dry skin that I brought to their attention b/c I wanted to make sure it wasn't Vit E definiciency related. They are now saying he is low in Vit D enough that he should be on a supplement. So this week I bought him straight Vit D that they gave me a rx for but unfortunately it is $113 OTC.

I got on google and surfed for signs of Rickets becuase I know this is a big issue with Vit. D definiciency. It's also on the rise in America. He seems to have a few signs of Rickets. Things I never would have associated as an issue if I hadn't known to look for them. All this stuff...I never would have known if I hadn't pushed for sequencing of Isaac's genes. I mean he's got no signs of cf at all and who has their child's vitamin levels checked?! Interesting how things work.

Well we go to the peds on Tues for a well check and we'll bring all of this to their attention and see what they have to say but I just wanted to let you all know that your breastmilk - even more so than a well woman - might be low in Vit. D. Oh and during pregnancy and post preg. I have always been within normal ranges of Vit. D levels.
 
H

hopesiris

Guest
Lauren,

Are you sure it is your breast milk and not his bodies inability to retain calcium/vit D? Not sure how metabolism works on that but...

In 2002 I sprained my ankle and my orthopedist said my xray didn't look right. I went to an endocrinologist who did a 24 hour urine test and twice it came back showing my body excretes more calcium than normal. I have had to supplement the way a menopausal woman does- 1500 mg/day plus vit. D. My scans also showed osteopenia in my forearms and wrists.

My CF mutation and variant are atypical, basically functions as one severe mutation and one mild/moderate mutation. I was not symptomatic for CF at birth and my sweat test is only 36. I'm just wondering if it could be his body, and in that case he'd need supplementation even after weaning. I think blood calcium levels don't tell the whole story so thought I'd tell you my pre-diagnosis story.

B
 
H

hopesiris

Guest
Lauren,

Are you sure it is your breast milk and not his bodies inability to retain calcium/vit D? Not sure how metabolism works on that but...

In 2002 I sprained my ankle and my orthopedist said my xray didn't look right. I went to an endocrinologist who did a 24 hour urine test and twice it came back showing my body excretes more calcium than normal. I have had to supplement the way a menopausal woman does- 1500 mg/day plus vit. D. My scans also showed osteopenia in my forearms and wrists.

My CF mutation and variant are atypical, basically functions as one severe mutation and one mild/moderate mutation. I was not symptomatic for CF at birth and my sweat test is only 36. I'm just wondering if it could be his body, and in that case he'd need supplementation even after weaning. I think blood calcium levels don't tell the whole story so thought I'd tell you my pre-diagnosis story.

B
 
H

hopesiris

Guest
Lauren,

Are you sure it is your breast milk and not his bodies inability to retain calcium/vit D? Not sure how metabolism works on that but...

In 2002 I sprained my ankle and my orthopedist said my xray didn't look right. I went to an endocrinologist who did a 24 hour urine test and twice it came back showing my body excretes more calcium than normal. I have had to supplement the way a menopausal woman does- 1500 mg/day plus vit. D. My scans also showed osteopenia in my forearms and wrists.

My CF mutation and variant are atypical, basically functions as one severe mutation and one mild/moderate mutation. I was not symptomatic for CF at birth and my sweat test is only 36. I'm just wondering if it could be his body, and in that case he'd need supplementation even after weaning. I think blood calcium levels don't tell the whole story so thought I'd tell you my pre-diagnosis story.

B
 
H

hopesiris

Guest
Lauren,

Are you sure it is your breast milk and not his bodies inability to retain calcium/vit D? Not sure how metabolism works on that but...

In 2002 I sprained my ankle and my orthopedist said my xray didn't look right. I went to an endocrinologist who did a 24 hour urine test and twice it came back showing my body excretes more calcium than normal. I have had to supplement the way a menopausal woman does- 1500 mg/day plus vit. D. My scans also showed osteopenia in my forearms and wrists.

My CF mutation and variant are atypical, basically functions as one severe mutation and one mild/moderate mutation. I was not symptomatic for CF at birth and my sweat test is only 36. I'm just wondering if it could be his body, and in that case he'd need supplementation even after weaning. I think blood calcium levels don't tell the whole story so thought I'd tell you my pre-diagnosis story.

B
 
H

hopesiris

Guest
Lauren,

Are you sure it is your breast milk and not his bodies inability to retain calcium/vit D? Not sure how metabolism works on that but...

In 2002 I sprained my ankle and my orthopedist said my xray didn't look right. I went to an endocrinologist who did a 24 hour urine test and twice it came back showing my body excretes more calcium than normal. I have had to supplement the way a menopausal woman does- 1500 mg/day plus vit. D. My scans also showed osteopenia in my forearms and wrists.

My CF mutation and variant are atypical, basically functions as one severe mutation and one mild/moderate mutation. I was not symptomatic for CF at birth and my sweat test is only 36. I'm just wondering if it could be his body, and in that case he'd need supplementation even after weaning. I think blood calcium levels don't tell the whole story so thought I'd tell you my pre-diagnosis story.

B
 
L

LouLou

New member
Bonnie, It's possible but unlikely related to his cf mutations because he is pancreatic sufficient. When did you have your first sweat test? I'd be interested to know what your sweat test results would have been at Isaac's age or even as a child. Did you know that some people's sweat test results rise as they get older? Isaac's were a 12 and that is part of the reason he does not have a cf diagnosis.

Do they know why you don't retain calcium properly? Is it cf related?
 
L

LouLou

New member
Bonnie, It's possible but unlikely related to his cf mutations because he is pancreatic sufficient. When did you have your first sweat test? I'd be interested to know what your sweat test results would have been at Isaac's age or even as a child. Did you know that some people's sweat test results rise as they get older? Isaac's were a 12 and that is part of the reason he does not have a cf diagnosis.

Do they know why you don't retain calcium properly? Is it cf related?
 
L

LouLou

New member
Bonnie, It's possible but unlikely related to his cf mutations because he is pancreatic sufficient. When did you have your first sweat test? I'd be interested to know what your sweat test results would have been at Isaac's age or even as a child. Did you know that some people's sweat test results rise as they get older? Isaac's were a 12 and that is part of the reason he does not have a cf diagnosis.

Do they know why you don't retain calcium properly? Is it cf related?
 
L

LouLou

New member
Bonnie, It's possible but unlikely related to his cf mutations because he is pancreatic sufficient. When did you have your first sweat test? I'd be interested to know what your sweat test results would have been at Isaac's age or even as a child. Did you know that some people's sweat test results rise as they get older? Isaac's were a 12 and that is part of the reason he does not have a cf diagnosis.

Do they know why you don't retain calcium properly? Is it cf related?
 
L

LouLou

New member
Bonnie, It's possible but unlikely related to his cf mutations because he is pancreatic sufficient. When did you have your first sweat test? I'd be interested to know what your sweat test results would have been at Isaac's age or even as a child. Did you know that some people's sweat test results rise as they get older? Isaac's were a 12 and that is part of the reason he does not have a cf diagnosis.

Do they know why you don't retain calcium properly? Is it cf related?
 
H

hopesiris

Guest
Lauren,

I am also pancreatic sufficient. I was just diagnosed this spring so all of my CF clinic testing is recent. My CF doc didn't comment on my calcium loss issues so I do not know if it is CF related-I just assumed it is. Maybe it would be a good idea to ask your cf clinic if they have seen this in PS patients-can you be PS but have mild imbalances. My urine tests were not that abnormal but it was enough to cause problems over time.

B
 
H

hopesiris

Guest
Lauren,

I am also pancreatic sufficient. I was just diagnosed this spring so all of my CF clinic testing is recent. My CF doc didn't comment on my calcium loss issues so I do not know if it is CF related-I just assumed it is. Maybe it would be a good idea to ask your cf clinic if they have seen this in PS patients-can you be PS but have mild imbalances. My urine tests were not that abnormal but it was enough to cause problems over time.

B
 
H

hopesiris

Guest
Lauren,

I am also pancreatic sufficient. I was just diagnosed this spring so all of my CF clinic testing is recent. My CF doc didn't comment on my calcium loss issues so I do not know if it is CF related-I just assumed it is. Maybe it would be a good idea to ask your cf clinic if they have seen this in PS patients-can you be PS but have mild imbalances. My urine tests were not that abnormal but it was enough to cause problems over time.

B
 
H

hopesiris

Guest
Lauren,

I am also pancreatic sufficient. I was just diagnosed this spring so all of my CF clinic testing is recent. My CF doc didn't comment on my calcium loss issues so I do not know if it is CF related-I just assumed it is. Maybe it would be a good idea to ask your cf clinic if they have seen this in PS patients-can you be PS but have mild imbalances. My urine tests were not that abnormal but it was enough to cause problems over time.

B
 
H

hopesiris

Guest
Lauren,

I am also pancreatic sufficient. I was just diagnosed this spring so all of my CF clinic testing is recent. My CF doc didn't comment on my calcium loss issues so I do not know if it is CF related-I just assumed it is. Maybe it would be a good idea to ask your cf clinic if they have seen this in PS patients-can you be PS but have mild imbalances. My urine tests were not that abnormal but it was enough to cause problems over time.

B
 
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