question from the newly diagnosed board

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nicole781

New member
there is a woman over on the newly diagnosed board, whose granddaughter was just diagnosed with CF
If i remeber correctly, the baby is under a year old, and tehy just finished up genetic testing on her.
The part that doesnt sound right to me is that her CF clinic told her that she dosen't need to start enzymes until the baby starts eating solid foods
When Alexa was born, enzymes were one of the first things she started on....just wondering if someone who is a little more experienced in this area can go check out the thread? The OPs name is Patricia12569
 
N

nicole781

New member
there is a woman over on the newly diagnosed board, whose granddaughter was just diagnosed with CF
If i remeber correctly, the baby is under a year old, and tehy just finished up genetic testing on her.
The part that doesnt sound right to me is that her CF clinic told her that she dosen't need to start enzymes until the baby starts eating solid foods
When Alexa was born, enzymes were one of the first things she started on....just wondering if someone who is a little more experienced in this area can go check out the thread? The OPs name is Patricia12569
 
N

nicole781

New member
there is a woman over on the newly diagnosed board, whose granddaughter was just diagnosed with CF
If i remeber correctly, the baby is under a year old, and tehy just finished up genetic testing on her.
The part that doesnt sound right to me is that her CF clinic told her that she dosen't need to start enzymes until the baby starts eating solid foods
When Alexa was born, enzymes were one of the first things she started on....just wondering if someone who is a little more experienced in this area can go check out the thread? The OPs name is Patricia12569
 
N

nicole781

New member
there is a woman over on the newly diagnosed board, whose granddaughter was just diagnosed with CF
If i remeber correctly, the baby is under a year old, and tehy just finished up genetic testing on her.
The part that doesnt sound right to me is that her CF clinic told her that she dosen't need to start enzymes until the baby starts eating solid foods
When Alexa was born, enzymes were one of the first things she started on....just wondering if someone who is a little more experienced in this area can go check out the thread? The OPs name is Patricia12569
 
N

nicole781

New member
there is a woman over on the newly diagnosed board, whose granddaughter was just diagnosed with CF
If i remeber correctly, the baby is under a year old, and tehy just finished up genetic testing on her.
The part that doesnt sound right to me is that her CF clinic told her that she dosen't need to start enzymes until the baby starts eating solid foods
When Alexa was born, enzymes were one of the first things she started on....just wondering if someone who is a little more experienced in this area can go check out the thread? The OPs name is Patricia12569
 
A

Alyssa

New member
I did a little research for her on the G551D gene and found that it has a high incidence of causing pancreatic sufficiency early in life, then later going to insufficiency.... so maybe just 'maybe' they have tested the baby and say that she is sufficient for now but the expect by the time she starts solids she may need enzymes then???? Purely speculation on my part as I have no idea if they have done a fecal fat test on her yet.
 
A

Alyssa

New member
I did a little research for her on the G551D gene and found that it has a high incidence of causing pancreatic sufficiency early in life, then later going to insufficiency.... so maybe just 'maybe' they have tested the baby and say that she is sufficient for now but the expect by the time she starts solids she may need enzymes then???? Purely speculation on my part as I have no idea if they have done a fecal fat test on her yet.
 
A

Alyssa

New member
I did a little research for her on the G551D gene and found that it has a high incidence of causing pancreatic sufficiency early in life, then later going to insufficiency.... so maybe just 'maybe' they have tested the baby and say that she is sufficient for now but the expect by the time she starts solids she may need enzymes then???? Purely speculation on my part as I have no idea if they have done a fecal fat test on her yet.
 
A

Alyssa

New member
I did a little research for her on the G551D gene and found that it has a high incidence of causing pancreatic sufficiency early in life, then later going to insufficiency.... so maybe just 'maybe' they have tested the baby and say that she is sufficient for now but the expect by the time she starts solids she may need enzymes then???? Purely speculation on my part as I have no idea if they have done a fecal fat test on her yet.
 
A

Alyssa

New member
I did a little research for her on the G551D gene and found that it has a high incidence of causing pancreatic sufficiency early in life, then later going to insufficiency.... so maybe just 'maybe' they have tested the baby and say that she is sufficient for now but the expect by the time she starts solids she may need enzymes then???? Purely speculation on my part as I have no idea if they have done a fecal fat test on her yet.
 
R

Ratatosk

Administrator
Staff member
Wondered about that, too. And in the past there was another person whose child was diagnosed at birth due to meconium illeus and while recovering in the NICU, they were told the same thing -- I think that child was a double delta f508, which is usually pancreatic insufficient and I remember being concerned at the time.
 
R

Ratatosk

Administrator
Staff member
Wondered about that, too. And in the past there was another person whose child was diagnosed at birth due to meconium illeus and while recovering in the NICU, they were told the same thing -- I think that child was a double delta f508, which is usually pancreatic insufficient and I remember being concerned at the time.
 
R

Ratatosk

Administrator
Staff member
Wondered about that, too. And in the past there was another person whose child was diagnosed at birth due to meconium illeus and while recovering in the NICU, they were told the same thing -- I think that child was a double delta f508, which is usually pancreatic insufficient and I remember being concerned at the time.
 
R

Ratatosk

Administrator
Staff member
Wondered about that, too. And in the past there was another person whose child was diagnosed at birth due to meconium illeus and while recovering in the NICU, they were told the same thing -- I think that child was a double delta f508, which is usually pancreatic insufficient and I remember being concerned at the time.
 
R

Ratatosk

Administrator
Staff member
Wondered about that, too. And in the past there was another person whose child was diagnosed at birth due to meconium illeus and while recovering in the NICU, they were told the same thing -- I think that child was a double delta f508, which is usually pancreatic insufficient and I remember being concerned at the time.
 
M

mneville

Guest
My son Aidan , a Double Delta, started enzymes at 8 days old- day of diagnosis. He was already showing signs of pancreatic insufficiency although I know some CFers start later.

MEgan
 
M

mneville

Guest
My son Aidan , a Double Delta, started enzymes at 8 days old- day of diagnosis. He was already showing signs of pancreatic insufficiency although I know some CFers start later.

MEgan
 
M

mneville

Guest
My son Aidan , a Double Delta, started enzymes at 8 days old- day of diagnosis. He was already showing signs of pancreatic insufficiency although I know some CFers start later.

MEgan
 
M

mneville

Guest
My son Aidan , a Double Delta, started enzymes at 8 days old- day of diagnosis. He was already showing signs of pancreatic insufficiency although I know some CFers start later.

MEgan
 
M

mneville

Guest
My son Aidan , a Double Delta, started enzymes at 8 days old- day of diagnosis. He was already showing signs of pancreatic insufficiency although I know some CFers start later.

MEgan
 
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