Good news from the CF clinic today!! CJ is pancreatic sufficient and is gaining weight and growing appropriately. He cultured EColi in his throat today but the doc said that is was so little that he is not in the least bit concerned. So my guess is how many kids not diagnosed with CF would culture EColi and never know it. They said for now he is a healthy happy baby boy and will only need to be followed once a month. He will require his additional salt in the formula and the vitamin boosts for now. Keeping all my fingers and toes crossed! Have definately found a new cause and determination in my life....fundraising for CF. We WILL find a cure people...
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Grandson Newly Diagnosed
- Thread starter pmotta
- Start date
Good news from the CF clinic today!! CJ is pancreatic sufficient and is gaining weight and growing appropriately. He cultured EColi in his throat today but the doc said that is was so little that he is not in the least bit concerned. So my guess is how many kids not diagnosed with CF would culture EColi and never know it. They said for now he is a healthy happy baby boy and will only need to be followed once a month. He will require his additional salt in the formula and the vitamin boosts for now. Keeping all my fingers and toes crossed! Have definately found a new cause and determination in my life....fundraising for CF. We WILL find a cure people...
Good news from the CF clinic today!! CJ is pancreatic sufficient and is gaining weight and growing appropriately. He cultured EColi in his throat today but the doc said that is was so little that he is not in the least bit concerned. So my guess is how many kids not diagnosed with CF would culture EColi and never know it. They said for now he is a healthy happy baby boy and will only need to be followed once a month. He will require his additional salt in the formula and the vitamin boosts for now. Keeping all my fingers and toes crossed! Have definately found a new cause and determination in my life....fundraising for CF. We WILL find a cure people...
Good news from the CF clinic today!! CJ is pancreatic sufficient and is gaining weight and growing appropriately. He cultured EColi in his throat today but the doc said that is was so little that he is not in the least bit concerned. So my guess is how many kids not diagnosed with CF would culture EColi and never know it. They said for now he is a healthy happy baby boy and will only need to be followed once a month. He will require his additional salt in the formula and the vitamin boosts for now. Keeping all my fingers and toes crossed! Have definately found a new cause and determination in my life....fundraising for CF. We WILL find a cure people...
Good news from the CF clinic today!! CJ is pancreatic sufficient and is gaining weight and growing appropriately. He cultured EColi in his throat today but the doc said that is was so little that he is not in the least bit concerned. So my guess is how many kids not diagnosed with CF would culture EColi and never know it. They said for now he is a healthy happy baby boy and will only need to be followed once a month. He will require his additional salt in the formula and the vitamin boosts for now. Keeping all my fingers and toes crossed! Have definately found a new cause and determination in my life....fundraising for CF. We WILL find a cure people...
S
SarahProcter
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pmotta</b></i>
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
S
SarahProcter
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pmotta</b></i>
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
S
SarahProcter
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pmotta</b></i>
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
S
SarahProcter
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pmotta</b></i>
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
Good news from the CF clinic today!! q]
Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
S
SarahProcter
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pmotta</b></i>
<br />
<br />Good news from the CF clinic today!! q]
<br />
<br />Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
<br />
<br />Good news from the CF clinic today!! q]
<br />
<br />Hooray for pancreatic sufficiency! That makes life, and good health, SO much easier! I hope that your grandson has a very easy time of things, and that we see a cure before he has any severe troubles.
longhorn4life
New member
Hey! I have the same mutations as your grandson. Supposedly everyone has different symptoms, even if they have the same gene. I know 3849+10kbC>T is supposed to be more mild. I have m.abscessus (a type of NTM), staph, RA, and bronchiectasis (plus a couple more mild diseases). I've also cultured for pseudomonas aeruginosa once or twice and I usually have some sort of lung infection going on. But I've hardly been hospitalized (never over night), my lung function is usually around 96%, and I'm pancreatic sufficient. My doctor says I should live past the median mortality age if I don't get sick with pneumonia or something and if I do what I'm supposed to. His guess is my 40's or possibly early 50's. I hope this helped, but I wouldn't rely too heavily on the genotype-phenotype to determine the future. Bronchiectasis is generally asociated with more severe cystic fibrosis and I have it with a "mild" case, so you never know what will happen.
longhorn4life
New member
Hey! I have the same mutations as your grandson. Supposedly everyone has different symptoms, even if they have the same gene. I know 3849+10kbC>T is supposed to be more mild. I have m.abscessus (a type of NTM), staph, RA, and bronchiectasis (plus a couple more mild diseases). I've also cultured for pseudomonas aeruginosa once or twice and I usually have some sort of lung infection going on. But I've hardly been hospitalized (never over night), my lung function is usually around 96%, and I'm pancreatic sufficient. My doctor says I should live past the median mortality age if I don't get sick with pneumonia or something and if I do what I'm supposed to. His guess is my 40's or possibly early 50's. I hope this helped, but I wouldn't rely too heavily on the genotype-phenotype to determine the future. Bronchiectasis is generally asociated with more severe cystic fibrosis and I have it with a "mild" case, so you never know what will happen.
longhorn4life
New member
Hey! I have the same mutations as your grandson. Supposedly everyone has different symptoms, even if they have the same gene. I know 3849+10kbC>T is supposed to be more mild. I have m.abscessus (a type of NTM), staph, RA, and bronchiectasis (plus a couple more mild diseases). I've also cultured for pseudomonas aeruginosa once or twice and I usually have some sort of lung infection going on. But I've hardly been hospitalized (never over night), my lung function is usually around 96%, and I'm pancreatic sufficient. My doctor says I should live past the median mortality age if I don't get sick with pneumonia or something and if I do what I'm supposed to. His guess is my 40's or possibly early 50's. I hope this helped, but I wouldn't rely too heavily on the genotype-phenotype to determine the future. Bronchiectasis is generally asociated with more severe cystic fibrosis and I have it with a "mild" case, so you never know what will happen.
A
Aspiemom
Guest
I see this thread was started in March, but is still going on so I will respond also.
I have these same CF genes. I was not really symptomatic early in life. I coughed a lot, then in my teens started getting bronchitis constantly. In my 20's I was dx with bronchiectisis and started with the severe sinus problems.
I wasn't dx with CF until I was 43 and am now 50. Don't let the diagnosis scare you. Since you know early that your grandchild has CF you can be proactive (which I couldn't be). Make sure your grandchild sees a CF dr.
But look at me! I wasn't able to be proactive and I'm 50!
I have these same CF genes. I was not really symptomatic early in life. I coughed a lot, then in my teens started getting bronchitis constantly. In my 20's I was dx with bronchiectisis and started with the severe sinus problems.
I wasn't dx with CF until I was 43 and am now 50. Don't let the diagnosis scare you. Since you know early that your grandchild has CF you can be proactive (which I couldn't be). Make sure your grandchild sees a CF dr.
But look at me! I wasn't able to be proactive and I'm 50!
A
Aspiemom
Guest
I see this thread was started in March, but is still going on so I will respond also.
I have these same CF genes. I was not really symptomatic early in life. I coughed a lot, then in my teens started getting bronchitis constantly. In my 20's I was dx with bronchiectisis and started with the severe sinus problems.
I wasn't dx with CF until I was 43 and am now 50. Don't let the diagnosis scare you. Since you know early that your grandchild has CF you can be proactive (which I couldn't be). Make sure your grandchild sees a CF dr.
But look at me! I wasn't able to be proactive and I'm 50!
I have these same CF genes. I was not really symptomatic early in life. I coughed a lot, then in my teens started getting bronchitis constantly. In my 20's I was dx with bronchiectisis and started with the severe sinus problems.
I wasn't dx with CF until I was 43 and am now 50. Don't let the diagnosis scare you. Since you know early that your grandchild has CF you can be proactive (which I couldn't be). Make sure your grandchild sees a CF dr.
But look at me! I wasn't able to be proactive and I'm 50!
A
Aspiemom
Guest
I see this thread was started in March, but is still going on so I will respond also.
<br />
<br />I have these same CF genes. I was not really symptomatic early in life. I coughed a lot, then in my teens started getting bronchitis constantly. In my 20's I was dx with bronchiectisis and started with the severe sinus problems.
<br />
<br />I wasn't dx with CF until I was 43 and am now 50. Don't let the diagnosis scare you. Since you know early that your grandchild has CF you can be proactive (which I couldn't be). Make sure your grandchild sees a CF dr.
<br />
<br />But look at me! I wasn't able to be proactive and I'm 50!
<br />
<br />I have these same CF genes. I was not really symptomatic early in life. I coughed a lot, then in my teens started getting bronchitis constantly. In my 20's I was dx with bronchiectisis and started with the severe sinus problems.
<br />
<br />I wasn't dx with CF until I was 43 and am now 50. Don't let the diagnosis scare you. Since you know early that your grandchild has CF you can be proactive (which I couldn't be). Make sure your grandchild sees a CF dr.
<br />
<br />But look at me! I wasn't able to be proactive and I'm 50!
AleksandraKaczynska
New member
Hi, I just noticed your grandson has the same c.3849+10kbc>T my daughter has. She is 3849+10kbC>T / R533X. She is 3 years old - almost (her birthdy is on the 15).
So far she has had no syptoms but for the sweat test and genetic.
She does not go to kindergarden.
I work at home.
But she has been going to swimming lesseons since she was 8 months old and to gimnastics for kids since 1,5 years. So she doesn,t miss playing in a group.
She was never ill after theses sports.
They are small groups of children and in big "areas".
We are having a cheque up in 3 weeks but so far:
She doesn't need enzyms - grows like any kid her age. I measure her myself to keep up. every month or so.
she is on a high calorie diet - but no medical help is needed.
She gets her vitamins (mostly E and A) everday - In Poland we use AquaAdeks for kid with cf.
She gets - 6 to 10 ml additional salt 10% everyday - I put it into sweet joghurt and she doesn't even notice it. When che was little I added this to her baby food.
We also use salt in our diet like for grown-ups.When it's hot - we give her more.
We also do inhaltions twice a day from 5% salt 4 ml. But this has changed from using 3 ml 0,9 % NaCl at first and the doc will try to reach using only 10% NaCl. No medications. After inhaltion we do PCT by hand - we don't have the vest yet.
Apart from that I separate her from people i think are sick, constantly wash our hands ans so on...
We don't use public bathrooms....use single use sterilization hakerchiefs and so on...
I started giving her also additionla omega 3, multi minerals and synbiotics once a day or so...
At first the doctors here used to scare us with fact and numbers such as " mortality at age of 20" (it is still like this here). But after she finished 2 years they decided to tell us this is a mild cf and if we keep on doing what they tell us - she will be a happy healthy girl.
The problems may begin at going to school - but I consider applying for teaching her at home durring the infection piriods at school - we had to get her the status of being handicapped for this - I don't now about how it's in the US.
The situation in treating cf changes day to day and I hope the medications will better when we need them.
Feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>I also know teher are many people here with this muatation - and the 3849+10kbC>T seems to be the leading mutation - meaning a mild cf - some people are not dignosed till they are over 30 and I guess some are never.
So far she has had no syptoms but for the sweat test and genetic.
She does not go to kindergarden.
I work at home.
But she has been going to swimming lesseons since she was 8 months old and to gimnastics for kids since 1,5 years. So she doesn,t miss playing in a group.
She was never ill after theses sports.
They are small groups of children and in big "areas".
We are having a cheque up in 3 weeks but so far:
She doesn't need enzyms - grows like any kid her age. I measure her myself to keep up. every month or so.
she is on a high calorie diet - but no medical help is needed.
She gets her vitamins (mostly E and A) everday - In Poland we use AquaAdeks for kid with cf.
She gets - 6 to 10 ml additional salt 10% everyday - I put it into sweet joghurt and she doesn't even notice it. When che was little I added this to her baby food.
We also use salt in our diet like for grown-ups.When it's hot - we give her more.
We also do inhaltions twice a day from 5% salt 4 ml. But this has changed from using 3 ml 0,9 % NaCl at first and the doc will try to reach using only 10% NaCl. No medications. After inhaltion we do PCT by hand - we don't have the vest yet.
Apart from that I separate her from people i think are sick, constantly wash our hands ans so on...
We don't use public bathrooms....use single use sterilization hakerchiefs and so on...
I started giving her also additionla omega 3, multi minerals and synbiotics once a day or so...
At first the doctors here used to scare us with fact and numbers such as " mortality at age of 20" (it is still like this here). But after she finished 2 years they decided to tell us this is a mild cf and if we keep on doing what they tell us - she will be a happy healthy girl.
The problems may begin at going to school - but I consider applying for teaching her at home durring the infection piriods at school - we had to get her the status of being handicapped for this - I don't now about how it's in the US.
The situation in treating cf changes day to day and I hope the medications will better when we need them.
Feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>I also know teher are many people here with this muatation - and the 3849+10kbC>T seems to be the leading mutation - meaning a mild cf - some people are not dignosed till they are over 30 and I guess some are never.
AleksandraKaczynska
New member
Hi, I just noticed your grandson has the same c.3849+10kbc>T my daughter has. She is 3849+10kbC>T / R533X. She is 3 years old - almost (her birthdy is on the 15).
So far she has had no syptoms but for the sweat test and genetic.
She does not go to kindergarden.
I work at home.
But she has been going to swimming lesseons since she was 8 months old and to gimnastics for kids since 1,5 years. So she doesn,t miss playing in a group.
She was never ill after theses sports.
They are small groups of children and in big "areas".
We are having a cheque up in 3 weeks but so far:
She doesn't need enzyms - grows like any kid her age. I measure her myself to keep up. every month or so.
she is on a high calorie diet - but no medical help is needed.
She gets her vitamins (mostly E and A) everday - In Poland we use AquaAdeks for kid with cf.
She gets - 6 to 10 ml additional salt 10% everyday - I put it into sweet joghurt and she doesn't even notice it. When che was little I added this to her baby food.
We also use salt in our diet like for grown-ups.When it's hot - we give her more.
We also do inhaltions twice a day from 5% salt 4 ml. But this has changed from using 3 ml 0,9 % NaCl at first and the doc will try to reach using only 10% NaCl. No medications. After inhaltion we do PCT by hand - we don't have the vest yet.
Apart from that I separate her from people i think are sick, constantly wash our hands ans so on...
We don't use public bathrooms....use single use sterilization hakerchiefs and so on...
I started giving her also additionla omega 3, multi minerals and synbiotics once a day or so...
At first the doctors here used to scare us with fact and numbers such as " mortality at age of 20" (it is still like this here). But after she finished 2 years they decided to tell us this is a mild cf and if we keep on doing what they tell us - she will be a happy healthy girl.
The problems may begin at going to school - but I consider applying for teaching her at home durring the infection piriods at school - we had to get her the status of being handicapped for this - I don't now about how it's in the US.
The situation in treating cf changes day to day and I hope the medications will better when we need them.
Feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>I also know teher are many people here with this muatation - and the 3849+10kbC>T seems to be the leading mutation - meaning a mild cf - some people are not dignosed till they are over 30 and I guess some are never.
So far she has had no syptoms but for the sweat test and genetic.
She does not go to kindergarden.
I work at home.
But she has been going to swimming lesseons since she was 8 months old and to gimnastics for kids since 1,5 years. So she doesn,t miss playing in a group.
She was never ill after theses sports.
They are small groups of children and in big "areas".
We are having a cheque up in 3 weeks but so far:
She doesn't need enzyms - grows like any kid her age. I measure her myself to keep up. every month or so.
she is on a high calorie diet - but no medical help is needed.
She gets her vitamins (mostly E and A) everday - In Poland we use AquaAdeks for kid with cf.
She gets - 6 to 10 ml additional salt 10% everyday - I put it into sweet joghurt and she doesn't even notice it. When che was little I added this to her baby food.
We also use salt in our diet like for grown-ups.When it's hot - we give her more.
We also do inhaltions twice a day from 5% salt 4 ml. But this has changed from using 3 ml 0,9 % NaCl at first and the doc will try to reach using only 10% NaCl. No medications. After inhaltion we do PCT by hand - we don't have the vest yet.
Apart from that I separate her from people i think are sick, constantly wash our hands ans so on...
We don't use public bathrooms....use single use sterilization hakerchiefs and so on...
I started giving her also additionla omega 3, multi minerals and synbiotics once a day or so...
At first the doctors here used to scare us with fact and numbers such as " mortality at age of 20" (it is still like this here). But after she finished 2 years they decided to tell us this is a mild cf and if we keep on doing what they tell us - she will be a happy healthy girl.
The problems may begin at going to school - but I consider applying for teaching her at home durring the infection piriods at school - we had to get her the status of being handicapped for this - I don't now about how it's in the US.
The situation in treating cf changes day to day and I hope the medications will better when we need them.
Feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>I also know teher are many people here with this muatation - and the 3849+10kbC>T seems to be the leading mutation - meaning a mild cf - some people are not dignosed till they are over 30 and I guess some are never.
AleksandraKaczynska
New member
Hi, I just noticed your grandson has the same c.3849+10kbc>T my daughter has. She is 3849+10kbC>T / R533X. She is 3 years old - almost (her birthdy is on the 15).
<br />So far she has had no syptoms but for the sweat test and genetic.
<br />She does not go to kindergarden.
<br />I work at home.
<br />But she has been going to swimming lesseons since she was 8 months old and to gimnastics for kids since 1,5 years. So she doesn,t miss playing in a group.
<br />She was never ill after theses sports.
<br />They are small groups of children and in big "areas".
<br />We are having a cheque up in 3 weeks but so far:
<br />She doesn't need enzyms - grows like any kid her age. I measure her myself to keep up. every month or so.
<br />she is on a high calorie diet - but no medical help is needed.
<br />She gets her vitamins (mostly E and A) everday - In Poland we use AquaAdeks for kid with cf.
<br />She gets - 6 to 10 ml additional salt 10% everyday - I put it into sweet joghurt and she doesn't even notice it. When che was little I added this to her baby food.
<br />We also use salt in our diet like for grown-ups.When it's hot - we give her more.
<br />We also do inhaltions twice a day from 5% salt 4 ml. But this has changed from using 3 ml 0,9 % NaCl at first and the doc will try to reach using only 10% NaCl. No medications. After inhaltion we do PCT by hand - we don't have the vest yet.
<br />Apart from that I separate her from people i think are sick, constantly wash our hands ans so on...
<br />We don't use public bathrooms....use single use sterilization hakerchiefs and so on...
<br />I started giving her also additionla omega 3, multi minerals and synbiotics once a day or so...
<br />
<br />At first the doctors here used to scare us with fact and numbers such as " mortality at age of 20" (it is still like this here). But after she finished 2 years they decided to tell us this is a mild cf and if we keep on doing what they tell us - she will be a happy healthy girl.
<br />The problems may begin at going to school - but I consider applying for teaching her at home durring the infection piriods at school - we had to get her the status of being handicapped for this - I don't now about how it's in the US.
<br />The situation in treating cf changes day to day and I hope the medications will better when we need them.
<br />Feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a><br />I also know teher are many people here with this muatation - and the 3849+10kbC>T seems to be the leading mutation - meaning a mild cf - some people are not dignosed till they are over 30 and I guess some are never.
<br />So far she has had no syptoms but for the sweat test and genetic.
<br />She does not go to kindergarden.
<br />I work at home.
<br />But she has been going to swimming lesseons since she was 8 months old and to gimnastics for kids since 1,5 years. So she doesn,t miss playing in a group.
<br />She was never ill after theses sports.
<br />They are small groups of children and in big "areas".
<br />We are having a cheque up in 3 weeks but so far:
<br />She doesn't need enzyms - grows like any kid her age. I measure her myself to keep up. every month or so.
<br />she is on a high calorie diet - but no medical help is needed.
<br />She gets her vitamins (mostly E and A) everday - In Poland we use AquaAdeks for kid with cf.
<br />She gets - 6 to 10 ml additional salt 10% everyday - I put it into sweet joghurt and she doesn't even notice it. When che was little I added this to her baby food.
<br />We also use salt in our diet like for grown-ups.When it's hot - we give her more.
<br />We also do inhaltions twice a day from 5% salt 4 ml. But this has changed from using 3 ml 0,9 % NaCl at first and the doc will try to reach using only 10% NaCl. No medications. After inhaltion we do PCT by hand - we don't have the vest yet.
<br />Apart from that I separate her from people i think are sick, constantly wash our hands ans so on...
<br />We don't use public bathrooms....use single use sterilization hakerchiefs and so on...
<br />I started giving her also additionla omega 3, multi minerals and synbiotics once a day or so...
<br />
<br />At first the doctors here used to scare us with fact and numbers such as " mortality at age of 20" (it is still like this here). But after she finished 2 years they decided to tell us this is a mild cf and if we keep on doing what they tell us - she will be a happy healthy girl.
<br />The problems may begin at going to school - but I consider applying for teaching her at home durring the infection piriods at school - we had to get her the status of being handicapped for this - I don't now about how it's in the US.
<br />The situation in treating cf changes day to day and I hope the medications will better when we need them.
<br />Feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a><br />I also know teher are many people here with this muatation - and the 3849+10kbC>T seems to be the leading mutation - meaning a mild cf - some people are not dignosed till they are over 30 and I guess some are never.