Croup

[letefk]

Sorry about that "pulmonary exacerbation" is just the clinical term for a sudden build-up of congestion in the lungs. In my kids, it happens when one of the bacteria in the lungs gets out of control, and they need a more powerful antibiotic. Sometimes it can mean a stay in the hospital.

It is possible for a child to have CF, even though they are gaining weight and do not taste very salty. There are variant genetics that can cause CF, and they effect how the disease "looks." My children have atypical CF, so they do not have digestive issues, and gain weight fine. We never noticed any unusually salty 'taste', either. But they got chronic lung infections before the diagnosis. They were 1 and 4 at the time.

One of my children had a Sweat test result of 11, yet her genetics came back identical to her sisters (an atypical form of CF). Still, we got different opinions on whether or not it was CF. Within a year, she had cultured psuedomonas, and that ended the debate.

 

[letefk]

Sorry about that "pulmonary exacerbation" is just the clinical term for a sudden build-up of congestion in the lungs. In my kids, it happens when one of the bacteria in the lungs gets out of control, and they need a more powerful antibiotic. Sometimes it can mean a stay in the hospital.

It is possible for a child to have CF, even though they are gaining weight and do not taste very salty. There are variant genetics that can cause CF, and they effect how the disease "looks." My children have atypical CF, so they do not have digestive issues, and gain weight fine. We never noticed any unusually salty 'taste', either. But they got chronic lung infections before the diagnosis. They were 1 and 4 at the time.

One of my children had a Sweat test result of 11, yet her genetics came back identical to her sisters (an atypical form of CF). Still, we got different opinions on whether or not it was CF. Within a year, she had cultured psuedomonas, and that ended the debate.

 

[letefk]

Sorry about that "pulmonary exacerbation" is just the clinical term for a sudden build-up of congestion in the lungs. In my kids, it happens when one of the bacteria in the lungs gets out of control, and they need a more powerful antibiotic. Sometimes it can mean a stay in the hospital.

It is possible for a child to have CF, even though they are gaining weight and do not taste very salty. There are variant genetics that can cause CF, and they effect how the disease "looks." My children have atypical CF, so they do not have digestive issues, and gain weight fine. We never noticed any unusually salty 'taste', either. But they got chronic lung infections before the diagnosis. They were 1 and 4 at the time.

One of my children had a Sweat test result of 11, yet her genetics came back identical to her sisters (an atypical form of CF). Still, we got different opinions on whether or not it was CF. Within a year, she had cultured psuedomonas, and that ended the debate.

 

[letefk]

Sorry about that "pulmonary exacerbation" is just the clinical term for a sudden build-up of congestion in the lungs. In my kids, it happens when one of the bacteria in the lungs gets out of control, and they need a more powerful antibiotic. Sometimes it can mean a stay in the hospital.

It is possible for a child to have CF, even though they are gaining weight and do not taste very salty. There are variant genetics that can cause CF, and they effect how the disease "looks." My children have atypical CF, so they do not have digestive issues, and gain weight fine. We never noticed any unusually salty 'taste', either. But they got chronic lung infections before the diagnosis. They were 1 and 4 at the time.

One of my children had a Sweat test result of 11, yet her genetics came back identical to her sisters (an atypical form of CF). Still, we got different opinions on whether or not it was CF. Within a year, she had cultured psuedomonas, and that ended the debate.

 

[letefk]

Sorry about that "pulmonary exacerbation" is just the clinical term for a sudden build-up of congestion in the lungs. In my kids, it happens when one of the bacteria in the lungs gets out of control, and they need a more powerful antibiotic. Sometimes it can mean a stay in the hospital.
<br />
<br />It is possible for a child to have CF, even though they are gaining weight and do not taste very salty. There are variant genetics that can cause CF, and they effect how the disease "looks." My children have atypical CF, so they do not have digestive issues, and gain weight fine. We never noticed any unusually salty 'taste', either. But they got chronic lung infections before the diagnosis. They were 1 and 4 at the time.
<br />
<br />One of my children had a Sweat test result of 11, yet her genetics came back identical to her sisters (an atypical form of CF). Still, we got different opinions on whether or not it was CF. Within a year, she had cultured psuedomonas, and that ended the debate.

 

[letefk]

Just to add to my last post: I don't know if this helps, but I remember while I was in your shoes, waiting and worrying, all I could see was the worst. For what it is worth, your doctor may just be trying to ELIMINATE CF as a possible explanation. And if it is CF, you will adapt. When we got the diagnosis sorted out, it felt like the end of the world. But it is not.

 

[letefk]

Just to add to my last post: I don't know if this helps, but I remember while I was in your shoes, waiting and worrying, all I could see was the worst. For what it is worth, your doctor may just be trying to ELIMINATE CF as a possible explanation. And if it is CF, you will adapt. When we got the diagnosis sorted out, it felt like the end of the world. But it is not.

 

[letefk]

Just to add to my last post: I don't know if this helps, but I remember while I was in your shoes, waiting and worrying, all I could see was the worst. For what it is worth, your doctor may just be trying to ELIMINATE CF as a possible explanation. And if it is CF, you will adapt. When we got the diagnosis sorted out, it felt like the end of the world. But it is not.

 

[letefk]

Just to add to my last post: I don't know if this helps, but I remember while I was in your shoes, waiting and worrying, all I could see was the worst. For what it is worth, your doctor may just be trying to ELIMINATE CF as a possible explanation. And if it is CF, you will adapt. When we got the diagnosis sorted out, it felt like the end of the world. But it is not.

 

[letefk]

Just to add to my last post: I don't know if this helps, but I remember while I was in your shoes, waiting and worrying, all I could see was the worst. For what it is worth, your doctor may just be trying to ELIMINATE CF as a possible explanation. And if it is CF, you will adapt. When we got the diagnosis sorted out, it felt like the end of the world. But it is not.

 

[PlumPerfect]

my so was diagnosed a month ago as a result of newborn screen. he started out just with a little head sweat and it had a mild salty taste but now as he gets older its more noticable. he also had a different smell. my daughter after a hard day of play will not taste salty. if you tend to notice it then that may be a clue.

I know the waiting is the worst. I hope all goes well, but as another mom had told me its not a death sentance and after you get used to all the treatments your children can live normal lives.

My son is gaining weight like a champ and never seemed to show signs untill we were aware of them, and even then alot of things could just be chucked up to normal baby stuff.

 

[PlumPerfect]

my so was diagnosed a month ago as a result of newborn screen. he started out just with a little head sweat and it had a mild salty taste but now as he gets older its more noticable. he also had a different smell. my daughter after a hard day of play will not taste salty. if you tend to notice it then that may be a clue.

I know the waiting is the worst. I hope all goes well, but as another mom had told me its not a death sentance and after you get used to all the treatments your children can live normal lives.

My son is gaining weight like a champ and never seemed to show signs untill we were aware of them, and even then alot of things could just be chucked up to normal baby stuff.

 

[PlumPerfect]

my so was diagnosed a month ago as a result of newborn screen. he started out just with a little head sweat and it had a mild salty taste but now as he gets older its more noticable. he also had a different smell. my daughter after a hard day of play will not taste salty. if you tend to notice it then that may be a clue.

I know the waiting is the worst. I hope all goes well, but as another mom had told me its not a death sentance and after you get used to all the treatments your children can live normal lives.

My son is gaining weight like a champ and never seemed to show signs untill we were aware of them, and even then alot of things could just be chucked up to normal baby stuff.

 

[PlumPerfect]

my so was diagnosed a month ago as a result of newborn screen. he started out just with a little head sweat and it had a mild salty taste but now as he gets older its more noticable. he also had a different smell. my daughter after a hard day of play will not taste salty. if you tend to notice it then that may be a clue.

I know the waiting is the worst. I hope all goes well, but as another mom had told me its not a death sentance and after you get used to all the treatments your children can live normal lives.

My son is gaining weight like a champ and never seemed to show signs untill we were aware of them, and even then alot of things could just be chucked up to normal baby stuff.

 

[PlumPerfect]

my so was diagnosed a month ago as a result of newborn screen. he started out just with a little head sweat and it had a mild salty taste but now as he gets older its more noticable. he also had a different smell. my daughter after a hard day of play will not taste salty. if you tend to notice it then that may be a clue.
<br />
<br />I know the waiting is the worst. I hope all goes well, but as another mom had told me its not a death sentance and after you get used to all the treatments your children can live normal lives.
<br />
<br />My son is gaining weight like a champ and never seemed to show signs untill we were aware of them, and even then alot of things could just be chucked up to normal baby stuff.

 

[Madismom]

Thank you for the info. I know that I am probably consuming myself with all this new info, but I feel like I have to. If she has CF then I am educating myself on something that will impact my life and if she doesn't, then I am still educating myself. I feel horrible saying this, but for the last two years, Madison and I have participated in the walk for CF through my aunts work and I knew little about CF- I just feel so ignorant now for not looking into this and seeing how serious and life changing it is. Negative or positive- this has impacted my life and opened my eyes to things I didn't see before.

 

[Madismom]

Thank you for the info. I know that I am probably consuming myself with all this new info, but I feel like I have to. If she has CF then I am educating myself on something that will impact my life and if she doesn't, then I am still educating myself. I feel horrible saying this, but for the last two years, Madison and I have participated in the walk for CF through my aunts work and I knew little about CF- I just feel so ignorant now for not looking into this and seeing how serious and life changing it is. Negative or positive- this has impacted my life and opened my eyes to things I didn't see before.

 

[Madismom]

Thank you for the info. I know that I am probably consuming myself with all this new info, but I feel like I have to. If she has CF then I am educating myself on something that will impact my life and if she doesn't, then I am still educating myself. I feel horrible saying this, but for the last two years, Madison and I have participated in the walk for CF through my aunts work and I knew little about CF- I just feel so ignorant now for not looking into this and seeing how serious and life changing it is. Negative or positive- this has impacted my life and opened my eyes to things I didn't see before.

 

[Madismom]

Thank you for the info. I know that I am probably consuming myself with all this new info, but I feel like I have to. If she has CF then I am educating myself on something that will impact my life and if she doesn't, then I am still educating myself. I feel horrible saying this, but for the last two years, Madison and I have participated in the walk for CF through my aunts work and I knew little about CF- I just feel so ignorant now for not looking into this and seeing how serious and life changing it is. Negative or positive- this has impacted my life and opened my eyes to things I didn't see before.

 

[Madismom]

Thank you for the info. I know that I am probably consuming myself with all this new info, but I feel like I have to. If she has CF then I am educating myself on something that will impact my life and if she doesn't, then I am still educating myself. I feel horrible saying this, but for the last two years, Madison and I have participated in the walk for CF through my aunts work and I knew little about CF- I just feel so ignorant now for not looking into this and seeing how serious and life changing it is. Negative or positive- this has impacted my life and opened my eyes to things I didn't see before.