K
kots66
Guest
Thanks for all the replies and the support. I managed to find an appointment this Tuesday. I really hope that the results will be good, and that she's just a carrier.
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K
kots66
Guest
Ok, yesterday we had the sweat test, which came out positive, which means that our little girl has CF.
The docor said that one of us must have a not-so-common mutation, which is why it didn't show up
in the panel test.
Needless to say, yesterday was a really bad day, by far the worst of my life.
However, and I'm not sure if it's normal, today I feel a little better; It seems good to
me that, given her condition, we know about it from 1 mo old, and we have a great doctor
to guide us. So I'll stick around, see what I can learn, and try to make the best out of the situation.
The docor said that one of us must have a not-so-common mutation, which is why it didn't show up
in the panel test.
Needless to say, yesterday was a really bad day, by far the worst of my life.
However, and I'm not sure if it's normal, today I feel a little better; It seems good to
me that, given her condition, we know about it from 1 mo old, and we have a great doctor
to guide us. So I'll stick around, see what I can learn, and try to make the best out of the situation.
K
kots66
Guest
Ok, yesterday we had the sweat test, which came out positive, which means that our little girl has CF.
The docor said that one of us must have a not-so-common mutation, which is why it didn't show up
in the panel test.
Needless to say, yesterday was a really bad day, by far the worst of my life.
However, and I'm not sure if it's normal, today I feel a little better; It seems good to
me that, given her condition, we know about it from 1 mo old, and we have a great doctor
to guide us. So I'll stick around, see what I can learn, and try to make the best out of the situation.
The docor said that one of us must have a not-so-common mutation, which is why it didn't show up
in the panel test.
Needless to say, yesterday was a really bad day, by far the worst of my life.
However, and I'm not sure if it's normal, today I feel a little better; It seems good to
me that, given her condition, we know about it from 1 mo old, and we have a great doctor
to guide us. So I'll stick around, see what I can learn, and try to make the best out of the situation.
K
kots66
Guest
Ok, yesterday we had the sweat test, which came out positive, which means that our little girl has CF.
<br />The docor said that one of us must have a not-so-common mutation, which is why it didn't show up
<br />in the panel test.
<br />
<br />Needless to say, yesterday was a really bad day, by far the worst of my life.
<br />However, and I'm not sure if it's normal, today I feel a little better; It seems good to
<br />me that, given her condition, we know about it from 1 mo old, and we have a great doctor
<br />to guide us. So I'll stick around, see what I can learn, and try to make the best out of the situation.
<br />
<br />
<br />
<br />The docor said that one of us must have a not-so-common mutation, which is why it didn't show up
<br />in the panel test.
<br />
<br />Needless to say, yesterday was a really bad day, by far the worst of my life.
<br />However, and I'm not sure if it's normal, today I feel a little better; It seems good to
<br />me that, given her condition, we know about it from 1 mo old, and we have a great doctor
<br />to guide us. So I'll stick around, see what I can learn, and try to make the best out of the situation.
<br />
<br />
<br />
W
welshwitch
Guest
Hello!
Just wanted to chime in--I'm a 31 year old woman with CF--and my life is great! Please shoot me a PM if you want to chat--I can definitely give you some insight with my experience.
--Claire
Just wanted to chime in--I'm a 31 year old woman with CF--and my life is great! Please shoot me a PM if you want to chat--I can definitely give you some insight with my experience.
--Claire
W
welshwitch
Guest
Hello!
Just wanted to chime in--I'm a 31 year old woman with CF--and my life is great! Please shoot me a PM if you want to chat--I can definitely give you some insight with my experience.
--Claire
Just wanted to chime in--I'm a 31 year old woman with CF--and my life is great! Please shoot me a PM if you want to chat--I can definitely give you some insight with my experience.
--Claire
W
welshwitch
Guest
Hello!
<br />
<br />Just wanted to chime in--I'm a 31 year old woman with CF--and my life is great! Please shoot me a PM if you want to chat--I can definitely give you some insight with my experience.
<br />
<br />--Claire
<br />
<br />Just wanted to chime in--I'm a 31 year old woman with CF--and my life is great! Please shoot me a PM if you want to chat--I can definitely give you some insight with my experience.
<br />
<br />--Claire
J
jcwise62
Guest
Just read your news. As Liza said, one step at a time. It can be very overwhelming as a parent.
-----------------
Jeff Wise, dad to Parker (f508,R347P) diagnosed at age 11.
-----------------
Jeff Wise, dad to Parker (f508,R347P) diagnosed at age 11.
J
jcwise62
Guest
Just read your news. As Liza said, one step at a time. It can be very overwhelming as a parent.
-----------------
Jeff Wise, dad to Parker (f508,R347P) diagnosed at age 11.
-----------------
Jeff Wise, dad to Parker (f508,R347P) diagnosed at age 11.
J
jcwise62
Guest
Just read your news. As Liza said, one step at a time. It can be very overwhelming as a parent.
<br />
<br />-----------------
<br />Jeff Wise, dad to Parker (f508,R347P) diagnosed at age 11.
<br />
<br />-----------------
<br />Jeff Wise, dad to Parker (f508,R347P) diagnosed at age 11.
E
edan
Guest
Very sorry to hear your news. Please keep us posted. Thank goodness they figured it out early so you can give her the treatment she needs.
Take care and hugs. PM if you need anything.
Edan
Take care and hugs. PM if you need anything.
Edan
E
edan
Guest
Very sorry to hear your news. Please keep us posted. Thank goodness they figured it out early so you can give her the treatment she needs.
Take care and hugs. PM if you need anything.
Edan
Take care and hugs. PM if you need anything.
Edan
E
edan
Guest
Very sorry to hear your news. Please keep us posted. Thank goodness they figured it out early so you can give her the treatment she needs.
<br />
<br />Take care and hugs. PM if you need anything.
<br />
<br />Edan
<br />
<br />Take care and hugs. PM if you need anything.
<br />
<br />Edan
K
kots66
Guest
Thanks for the support and all the replies, you've all been very helpful, thanks a lot.
This forum has been a wonderful resource, it's been very encouraging being able
to communicate with people that either have CF or have kids with CF.
Anyway, we do feel a _little_ better now, both me and my wife, but still have a ton of questions.
For example, what kind of treatment should I expect to be given for my (2 months old) daughter?
We have already visited our CF specialist twice by now, and he only told us to do chest physio twice
a day, for about 25 minutes each time, and give her salt and/or electrolyte supplements with her milk,
to make up for the lost salt (it's *very* hot right now here, and he told us that kids with CF tend to get
dehydrated if not taken care of). He didn't give us any antibiotics or nebulizer; when I asked him, he told us 'not yet'.
He also didn't give us any enzymes, because some test they did on her poo came back 'borderline normal', and
he told us that most probably she _will_ need enzymes later, but not yet. We will meet again in about 15 days.
Is this normal? My daughter is about 2 mo old, exclusively breast fed, gains weight normally, and seems healthy overall.
We don't live in the US, and I suppose doctors in different countries might follow different protocols, but
I am worried, and I *really* wanted to know if all this sounds normal to you.
And another one:
What about visiting other families with kids? Can we do it, provided they don't have any colds?
Or is it better to avoid any contact with other kids until she is older?
Thanks in advance!
ps. They also took a little blood sample from her, to perform some tests (I didn't quite understand exactly), in order
to find out her second mutation (we already know the first one, DF508).
This forum has been a wonderful resource, it's been very encouraging being able
to communicate with people that either have CF or have kids with CF.
Anyway, we do feel a _little_ better now, both me and my wife, but still have a ton of questions.
For example, what kind of treatment should I expect to be given for my (2 months old) daughter?
We have already visited our CF specialist twice by now, and he only told us to do chest physio twice
a day, for about 25 minutes each time, and give her salt and/or electrolyte supplements with her milk,
to make up for the lost salt (it's *very* hot right now here, and he told us that kids with CF tend to get
dehydrated if not taken care of). He didn't give us any antibiotics or nebulizer; when I asked him, he told us 'not yet'.
He also didn't give us any enzymes, because some test they did on her poo came back 'borderline normal', and
he told us that most probably she _will_ need enzymes later, but not yet. We will meet again in about 15 days.
Is this normal? My daughter is about 2 mo old, exclusively breast fed, gains weight normally, and seems healthy overall.
We don't live in the US, and I suppose doctors in different countries might follow different protocols, but
I am worried, and I *really* wanted to know if all this sounds normal to you.
And another one:
What about visiting other families with kids? Can we do it, provided they don't have any colds?
Or is it better to avoid any contact with other kids until she is older?
Thanks in advance!
ps. They also took a little blood sample from her, to perform some tests (I didn't quite understand exactly), in order
to find out her second mutation (we already know the first one, DF508).
K
kots66
Guest
Thanks for the support and all the replies, you've all been very helpful, thanks a lot.
This forum has been a wonderful resource, it's been very encouraging being able
to communicate with people that either have CF or have kids with CF.
Anyway, we do feel a _little_ better now, both me and my wife, but still have a ton of questions.
For example, what kind of treatment should I expect to be given for my (2 months old) daughter?
We have already visited our CF specialist twice by now, and he only told us to do chest physio twice
a day, for about 25 minutes each time, and give her salt and/or electrolyte supplements with her milk,
to make up for the lost salt (it's *very* hot right now here, and he told us that kids with CF tend to get
dehydrated if not taken care of). He didn't give us any antibiotics or nebulizer; when I asked him, he told us 'not yet'.
He also didn't give us any enzymes, because some test they did on her poo came back 'borderline normal', and
he told us that most probably she _will_ need enzymes later, but not yet. We will meet again in about 15 days.
Is this normal? My daughter is about 2 mo old, exclusively breast fed, gains weight normally, and seems healthy overall.
We don't live in the US, and I suppose doctors in different countries might follow different protocols, but
I am worried, and I *really* wanted to know if all this sounds normal to you.
And another one:
What about visiting other families with kids? Can we do it, provided they don't have any colds?
Or is it better to avoid any contact with other kids until she is older?
Thanks in advance!
ps. They also took a little blood sample from her, to perform some tests (I didn't quite understand exactly), in order
to find out her second mutation (we already know the first one, DF508).
This forum has been a wonderful resource, it's been very encouraging being able
to communicate with people that either have CF or have kids with CF.
Anyway, we do feel a _little_ better now, both me and my wife, but still have a ton of questions.
For example, what kind of treatment should I expect to be given for my (2 months old) daughter?
We have already visited our CF specialist twice by now, and he only told us to do chest physio twice
a day, for about 25 minutes each time, and give her salt and/or electrolyte supplements with her milk,
to make up for the lost salt (it's *very* hot right now here, and he told us that kids with CF tend to get
dehydrated if not taken care of). He didn't give us any antibiotics or nebulizer; when I asked him, he told us 'not yet'.
He also didn't give us any enzymes, because some test they did on her poo came back 'borderline normal', and
he told us that most probably she _will_ need enzymes later, but not yet. We will meet again in about 15 days.
Is this normal? My daughter is about 2 mo old, exclusively breast fed, gains weight normally, and seems healthy overall.
We don't live in the US, and I suppose doctors in different countries might follow different protocols, but
I am worried, and I *really* wanted to know if all this sounds normal to you.
And another one:
What about visiting other families with kids? Can we do it, provided they don't have any colds?
Or is it better to avoid any contact with other kids until she is older?
Thanks in advance!
ps. They also took a little blood sample from her, to perform some tests (I didn't quite understand exactly), in order
to find out her second mutation (we already know the first one, DF508).
K
kots66
Guest
Thanks for the support and all the replies, you've all been very helpful, thanks a lot.
<br />This forum has been a wonderful resource, it's been very encouraging being able
<br />to communicate with people that either have CF or have kids with CF.
<br />
<br />Anyway, we do feel a _little_ better now, both me and my wife, but still have a ton of questions.
<br />
<br />For example, what kind of treatment should I expect to be given for my (2 months old) daughter?
<br />
<br />We have already visited our CF specialist twice by now, and he only told us to do chest physio twice
<br />a day, for about 25 minutes each time, and give her salt and/or electrolyte supplements with her milk,
<br />to make up for the lost salt (it's *very* hot right now here, and he told us that kids with CF tend to get
<br />dehydrated if not taken care of). He didn't give us any antibiotics or nebulizer; when I asked him, he told us 'not yet'.
<br />He also didn't give us any enzymes, because some test they did on her poo came back 'borderline normal', and
<br />he told us that most probably she _will_ need enzymes later, but not yet. We will meet again in about 15 days.
<br />
<br />Is this normal? My daughter is about 2 mo old, exclusively breast fed, gains weight normally, and seems healthy overall.
<br />We don't live in the US, and I suppose doctors in different countries might follow different protocols, but
<br />I am worried, and I *really* wanted to know if all this sounds normal to you.
<br />
<br />And another one:
<br />What about visiting other families with kids? Can we do it, provided they don't have any colds?
<br />Or is it better to avoid any contact with other kids until she is older?
<br />
<br />Thanks in advance!
<br />
<br />ps. They also took a little blood sample from her, to perform some tests (I didn't quite understand exactly), in order
<br />to find out her second mutation (we already know the first one, DF508).
<br />
<br />This forum has been a wonderful resource, it's been very encouraging being able
<br />to communicate with people that either have CF or have kids with CF.
<br />
<br />Anyway, we do feel a _little_ better now, both me and my wife, but still have a ton of questions.
<br />
<br />For example, what kind of treatment should I expect to be given for my (2 months old) daughter?
<br />
<br />We have already visited our CF specialist twice by now, and he only told us to do chest physio twice
<br />a day, for about 25 minutes each time, and give her salt and/or electrolyte supplements with her milk,
<br />to make up for the lost salt (it's *very* hot right now here, and he told us that kids with CF tend to get
<br />dehydrated if not taken care of). He didn't give us any antibiotics or nebulizer; when I asked him, he told us 'not yet'.
<br />He also didn't give us any enzymes, because some test they did on her poo came back 'borderline normal', and
<br />he told us that most probably she _will_ need enzymes later, but not yet. We will meet again in about 15 days.
<br />
<br />Is this normal? My daughter is about 2 mo old, exclusively breast fed, gains weight normally, and seems healthy overall.
<br />We don't live in the US, and I suppose doctors in different countries might follow different protocols, but
<br />I am worried, and I *really* wanted to know if all this sounds normal to you.
<br />
<br />And another one:
<br />What about visiting other families with kids? Can we do it, provided they don't have any colds?
<br />Or is it better to avoid any contact with other kids until she is older?
<br />
<br />Thanks in advance!
<br />
<br />ps. They also took a little blood sample from her, to perform some tests (I didn't quite understand exactly), in order
<br />to find out her second mutation (we already know the first one, DF508).
<br />
M
Mommafirst
Guest
I'm sorry you have a confirmed diagnosis. My daughter also tested to be borderline normal for pancreatic sufficiency. We didn't add enzymes until about a year old when her weight gain got sluggish. We did not start any nebulized medicines until her first chest cold at around 6 months of age. She didn't go on antibiotics until she needed them to kick that cold when they cultured her and found staph aureus.
It sounds like you are working hard to keep the CF docs accountable for your daughter's care. This will be your daughter's most needed tool. While some may say that they could start a basic neb with the CPT now, it really isn't necessary until she has some chest congestion or has airway inflamation.
You will get lots of opinions about how you should socialize and who can be near your daughter. Ultimately, keeping her in a bubble doesn't do her or anyone else any good. As long as those kids she is near are not ill and everyone follows normal baby protocol of washing their hands before touching her, there isn't much more you can do. I would invest in a lot of hand sanitizer and encourage people coming into your house or playing with the baby to sanitize frequently.
It sounds like you are working hard to keep the CF docs accountable for your daughter's care. This will be your daughter's most needed tool. While some may say that they could start a basic neb with the CPT now, it really isn't necessary until she has some chest congestion or has airway inflamation.
You will get lots of opinions about how you should socialize and who can be near your daughter. Ultimately, keeping her in a bubble doesn't do her or anyone else any good. As long as those kids she is near are not ill and everyone follows normal baby protocol of washing their hands before touching her, there isn't much more you can do. I would invest in a lot of hand sanitizer and encourage people coming into your house or playing with the baby to sanitize frequently.