Just Diagnosed too.

O

Olberding

New member
mom2caseyafrica
Hi and thanks for the email.
My husband and I had a doctor appt last Friday and here is what we learned..
our daughter has CF, but that assume that she will grow at a "normal" rate and not have many symtoms if any, with the exception of having cold that last longer that normal, more frequent coughs, etc.
They say all this, as my husband passed a classic gene and I passed on what they are calling a varient gene...therefore all this mild talk.
I wish I could say I believed them, but I really dont. We go back in a month to do some PT to learn to cup her chest ect. I will look up that exact 2 mutations, but they sound somthing like D155... and T5.
Right now our daugther seems super healthy, 12 weeks this Friday and weights 12.5 lbs. But she sounds raspy to me.She sneezes alot and coughs alot too.
What nmutations does she have and how old is she?
 
O

Olberding

New member
mom2caseyafrica
Hi and thanks for the email.
My husband and I had a doctor appt last Friday and here is what we learned..
our daughter has CF, but that assume that she will grow at a "normal" rate and not have many symtoms if any, with the exception of having cold that last longer that normal, more frequent coughs, etc.
They say all this, as my husband passed a classic gene and I passed on what they are calling a varient gene...therefore all this mild talk.
I wish I could say I believed them, but I really dont. We go back in a month to do some PT to learn to cup her chest ect. I will look up that exact 2 mutations, but they sound somthing like D155... and T5.
Right now our daugther seems super healthy, 12 weeks this Friday and weights 12.5 lbs. But she sounds raspy to me.She sneezes alot and coughs alot too.
What nmutations does she have and how old is she?
 
O

Olberding

New member
mom2caseyafrica
Hi and thanks for the email.
My husband and I had a doctor appt last Friday and here is what we learned..
our daughter has CF, but that assume that she will grow at a "normal" rate and not have many symtoms if any, with the exception of having cold that last longer that normal, more frequent coughs, etc.
They say all this, as my husband passed a classic gene and I passed on what they are calling a varient gene...therefore all this mild talk.
I wish I could say I believed them, but I really dont. We go back in a month to do some PT to learn to cup her chest ect. I will look up that exact 2 mutations, but they sound somthing like D155... and T5.
Right now our daugther seems super healthy, 12 weeks this Friday and weights 12.5 lbs. But she sounds raspy to me.She sneezes alot and coughs alot too.
What nmutations does she have and how old is she?
 
O

Olberding

New member
mom2caseyafrica
Hi and thanks for the email.
My husband and I had a doctor appt last Friday and here is what we learned..
our daughter has CF, but that assume that she will grow at a "normal" rate and not have many symtoms if any, with the exception of having cold that last longer that normal, more frequent coughs, etc.
They say all this, as my husband passed a classic gene and I passed on what they are calling a varient gene...therefore all this mild talk.
I wish I could say I believed them, but I really dont. We go back in a month to do some PT to learn to cup her chest ect. I will look up that exact 2 mutations, but they sound somthing like D155... and T5.
Right now our daugther seems super healthy, 12 weeks this Friday and weights 12.5 lbs. But she sounds raspy to me.She sneezes alot and coughs alot too.
What nmutations does she have and how old is she?
 
O

Olberding

New member
mom2caseyafrica
<br />Hi and thanks for the email.
<br />My husband and I had a doctor appt last Friday and here is what we learned..
<br />our daughter has CF, but that assume that she will grow at a "normal" rate and not have many symtoms if any, with the exception of having cold that last longer that normal, more frequent coughs, etc.
<br />They say all this, as my husband passed a classic gene and I passed on what they are calling a varient gene...therefore all this mild talk.
<br />I wish I could say I believed them, but I really dont. We go back in a month to do some PT to learn to cup her chest ect. I will look up that exact 2 mutations, but they sound somthing like D155... and T5.
<br />Right now our daugther seems super healthy, 12 weeks this Friday and weights 12.5 lbs. But she sounds raspy to me.She sneezes alot and coughs alot too.
<br />What nmutations does she have and how old is she?
 
R

Ratatosk

Administrator
Staff member
It's hard to predict regarding the variants -- because I know of situations in which there are very few symptoms and another with severes.

IMO, with that wheezing, I'd ask to learn CPT SOONER than later (in a month). Important to get that mucus moving and with that raspiness and wheezing she's expending energy (and calories).
 
R

Ratatosk

Administrator
Staff member
It's hard to predict regarding the variants -- because I know of situations in which there are very few symptoms and another with severes.

IMO, with that wheezing, I'd ask to learn CPT SOONER than later (in a month). Important to get that mucus moving and with that raspiness and wheezing she's expending energy (and calories).
 
R

Ratatosk

Administrator
Staff member
It's hard to predict regarding the variants -- because I know of situations in which there are very few symptoms and another with severes.

IMO, with that wheezing, I'd ask to learn CPT SOONER than later (in a month). Important to get that mucus moving and with that raspiness and wheezing she's expending energy (and calories).
 
R

Ratatosk

Administrator
Staff member
It's hard to predict regarding the variants -- because I know of situations in which there are very few symptoms and another with severes.

IMO, with that wheezing, I'd ask to learn CPT SOONER than later (in a month). Important to get that mucus moving and with that raspiness and wheezing she's expending energy (and calories).
 
R

Ratatosk

Administrator
Staff member
It's hard to predict regarding the variants -- because I know of situations in which there are very few symptoms and another with severes.
<br />
<br />IMO, with that wheezing, I'd ask to learn CPT SOONER than later (in a month). Important to get that mucus moving and with that raspiness and wheezing she's expending energy (and calories).
 
M

mom2caseyafrica

New member
My daughter has Delf508 and f508C mutations. From what I saw in my research of these two mutations f508C is supposed to be a benign mutation so coupled with any other mutation it usually does not present cf symtoms. Her doctor said she is asymtomatic right now, but she coughs more than a normal baby and she also sounds raspy. her doctor has already given us the material and showed me how to do CPT. He is also going to give us a nebulizar and albuterol to start that treatment as soon as medicaid kicks in. She is also on enzymes and is growing so fast now. She is 10 weeks old today. I dont know how much she weighs right now(her next doctors appointment is on Monday) but she is getting chuncky! =)
 
M

mom2caseyafrica

New member
My daughter has Delf508 and f508C mutations. From what I saw in my research of these two mutations f508C is supposed to be a benign mutation so coupled with any other mutation it usually does not present cf symtoms. Her doctor said she is asymtomatic right now, but she coughs more than a normal baby and she also sounds raspy. her doctor has already given us the material and showed me how to do CPT. He is also going to give us a nebulizar and albuterol to start that treatment as soon as medicaid kicks in. She is also on enzymes and is growing so fast now. She is 10 weeks old today. I dont know how much she weighs right now(her next doctors appointment is on Monday) but she is getting chuncky! =)
 
M

mom2caseyafrica

New member
My daughter has Delf508 and f508C mutations. From what I saw in my research of these two mutations f508C is supposed to be a benign mutation so coupled with any other mutation it usually does not present cf symtoms. Her doctor said she is asymtomatic right now, but she coughs more than a normal baby and she also sounds raspy. her doctor has already given us the material and showed me how to do CPT. He is also going to give us a nebulizar and albuterol to start that treatment as soon as medicaid kicks in. She is also on enzymes and is growing so fast now. She is 10 weeks old today. I dont know how much she weighs right now(her next doctors appointment is on Monday) but she is getting chuncky! =)
 
M

mom2caseyafrica

New member
My daughter has Delf508 and f508C mutations. From what I saw in my research of these two mutations f508C is supposed to be a benign mutation so coupled with any other mutation it usually does not present cf symtoms. Her doctor said she is asymtomatic right now, but she coughs more than a normal baby and she also sounds raspy. her doctor has already given us the material and showed me how to do CPT. He is also going to give us a nebulizar and albuterol to start that treatment as soon as medicaid kicks in. She is also on enzymes and is growing so fast now. She is 10 weeks old today. I dont know how much she weighs right now(her next doctors appointment is on Monday) but she is getting chuncky! =)
 
M

mom2caseyafrica

New member
My daughter has Delf508 and f508C mutations. From what I saw in my research of these two mutations f508C is supposed to be a benign mutation so coupled with any other mutation it usually does not present cf symtoms. Her doctor said she is asymtomatic right now, but she coughs more than a normal baby and she also sounds raspy. her doctor has already given us the material and showed me how to do CPT. He is also going to give us a nebulizar and albuterol to start that treatment as soon as medicaid kicks in. She is also on enzymes and is growing so fast now. She is 10 weeks old today. I dont know how much she weighs right now(her next doctors appointment is on Monday) but she is getting chuncky! =)
 
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