new at the forum, new at CF

Chilemom

New member
is the first time i write in the forum (really second i ask ambry about the mutation), but i have been reading it since my only daughter was Dx 6 month ago.
i don´t speak much english, nor write, but i will try to do my best.
she is a year and a half, since she was 4 month she started having this regular cold, bronchitis and a little pneumonia. But, she wasn´t very bad, just a lot of cough. we did the sweat test just to be sure she hasn´t cf, because all the doctors that we went said to us: is impossible, but something inside my heart told me to do it. To make a long story short, all of us, specially the doctors were very surprised with the result, we did it three times.
Since then we do her exercise in the chest every morning (physiotherapy), and i took her to a pediatrician that just give natural medicine ( antroposofica), and a normal doctor as well. She is doing great, i touch wood, she is in her size and weight, and since she has been dx she havent been sick.
I Have thousands of questions about her future, my future,my family etc, but to read this forum makes me feel comfortable (even thou sometimes i dont understand specially when you use letters instead of word example: cf: cystic fibrosis).
First question: at what age the cf start to be a really pain, i know it depends in the person, but more or less.
second question: what about more kids, please the mothers that have two or more kids with CF how it is? cross infection? company? ect.
third: do you understand my really kidergarten english? ja ja, hope you did.

thank you
 

Chilemom

New member
is the first time i write in the forum (really second i ask ambry about the mutation), but i have been reading it since my only daughter was Dx 6 month ago.
i don´t speak much english, nor write, but i will try to do my best.
she is a year and a half, since she was 4 month she started having this regular cold, bronchitis and a little pneumonia. But, she wasn´t very bad, just a lot of cough. we did the sweat test just to be sure she hasn´t cf, because all the doctors that we went said to us: is impossible, but something inside my heart told me to do it. To make a long story short, all of us, specially the doctors were very surprised with the result, we did it three times.
Since then we do her exercise in the chest every morning (physiotherapy), and i took her to a pediatrician that just give natural medicine ( antroposofica), and a normal doctor as well. She is doing great, i touch wood, she is in her size and weight, and since she has been dx she havent been sick.
I Have thousands of questions about her future, my future,my family etc, but to read this forum makes me feel comfortable (even thou sometimes i dont understand specially when you use letters instead of word example: cf: cystic fibrosis).
First question: at what age the cf start to be a really pain, i know it depends in the person, but more or less.
second question: what about more kids, please the mothers that have two or more kids with CF how it is? cross infection? company? ect.
third: do you understand my really kidergarten english? ja ja, hope you did.

thank you
 

Chilemom

New member
is the first time i write in the forum (really second i ask ambry about the mutation), but i have been reading it since my only daughter was Dx 6 month ago.
i don´t speak much english, nor write, but i will try to do my best.
she is a year and a half, since she was 4 month she started having this regular cold, bronchitis and a little pneumonia. But, she wasn´t very bad, just a lot of cough. we did the sweat test just to be sure she hasn´t cf, because all the doctors that we went said to us: is impossible, but something inside my heart told me to do it. To make a long story short, all of us, specially the doctors were very surprised with the result, we did it three times.
Since then we do her exercise in the chest every morning (physiotherapy), and i took her to a pediatrician that just give natural medicine ( antroposofica), and a normal doctor as well. She is doing great, i touch wood, she is in her size and weight, and since she has been dx she havent been sick.
I Have thousands of questions about her future, my future,my family etc, but to read this forum makes me feel comfortable (even thou sometimes i dont understand specially when you use letters instead of word example: cf: cystic fibrosis).
First question: at what age the cf start to be a really pain, i know it depends in the person, but more or less.
second question: what about more kids, please the mothers that have two or more kids with CF how it is? cross infection? company? ect.
third: do you understand my really kidergarten english? ja ja, hope you did.

thank you
 

Chilemom

New member
is the first time i write in the forum (really second i ask ambry about the mutation), but i have been reading it since my only daughter was Dx 6 month ago.
i don´t speak much english, nor write, but i will try to do my best.
she is a year and a half, since she was 4 month she started having this regular cold, bronchitis and a little pneumonia. But, she wasn´t very bad, just a lot of cough. we did the sweat test just to be sure she hasn´t cf, because all the doctors that we went said to us: is impossible, but something inside my heart told me to do it. To make a long story short, all of us, specially the doctors were very surprised with the result, we did it three times.
Since then we do her exercise in the chest every morning (physiotherapy), and i took her to a pediatrician that just give natural medicine ( antroposofica), and a normal doctor as well. She is doing great, i touch wood, she is in her size and weight, and since she has been dx she havent been sick.
I Have thousands of questions about her future, my future,my family etc, but to read this forum makes me feel comfortable (even thou sometimes i dont understand specially when you use letters instead of word example: cf: cystic fibrosis).
First question: at what age the cf start to be a really pain, i know it depends in the person, but more or less.
second question: what about more kids, please the mothers that have two or more kids with CF how it is? cross infection? company? ect.
third: do you understand my really kidergarten english? ja ja, hope you did.

thank you
 

Chilemom

New member
is the first time i write in the forum (really second i ask ambry about the mutation), but i have been reading it since my only daughter was Dx 6 month ago.
<br />i don´t speak much english, nor write, but i will try to do my best.
<br />she is a year and a half, since she was 4 month she started having this regular cold, bronchitis and a little pneumonia. But, she wasn´t very bad, just a lot of cough. we did the sweat test just to be sure she hasn´t cf, because all the doctors that we went said to us: is impossible, but something inside my heart told me to do it. To make a long story short, all of us, specially the doctors were very surprised with the result, we did it three times.
<br />Since then we do her exercise in the chest every morning (physiotherapy), and i took her to a pediatrician that just give natural medicine ( antroposofica), and a normal doctor as well. She is doing great, i touch wood, she is in her size and weight, and since she has been dx she havent been sick.
<br />I Have thousands of questions about her future, my future,my family etc, but to read this forum makes me feel comfortable (even thou sometimes i dont understand specially when you use letters instead of word example: cf: cystic fibrosis).
<br />First question: at what age the cf start to be a really pain, i know it depends in the person, but more or less.
<br />second question: what about more kids, please the mothers that have two or more kids with CF how it is? cross infection? company? ect.
<br />third: do you understand my really kidergarten english? ja ja, hope you did.
<br />
<br />thank you
 
C

Cherylwithone

Guest
Welcome to the site. I have found that the people here are very helpful. You can get some great tips from them. THey really open their hearts up.

I undrstand your english. You did very well<img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't answer all your questions but I do know some of the other moms can. On your first question everybody is different.
Some start off at birth with major problems, some can coast through with mild systems. With my daughter, hers was all GI (gastroenterology) her stomach, intestines, and such. She was very delayed in puberty. Tanner stage 2. They kick started her and then her lungs got involved. This DOES NOT happen to all kids. It just happened to her.
Jane another mom on here has two boys with cf. Close in age. She would be a really big help in answering your second question.

Again welcome to the site.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Welcome to the site. I have found that the people here are very helpful. You can get some great tips from them. THey really open their hearts up.

I undrstand your english. You did very well<img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't answer all your questions but I do know some of the other moms can. On your first question everybody is different.
Some start off at birth with major problems, some can coast through with mild systems. With my daughter, hers was all GI (gastroenterology) her stomach, intestines, and such. She was very delayed in puberty. Tanner stage 2. They kick started her and then her lungs got involved. This DOES NOT happen to all kids. It just happened to her.
Jane another mom on here has two boys with cf. Close in age. She would be a really big help in answering your second question.

Again welcome to the site.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Welcome to the site. I have found that the people here are very helpful. You can get some great tips from them. THey really open their hearts up.

I undrstand your english. You did very well<img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't answer all your questions but I do know some of the other moms can. On your first question everybody is different.
Some start off at birth with major problems, some can coast through with mild systems. With my daughter, hers was all GI (gastroenterology) her stomach, intestines, and such. She was very delayed in puberty. Tanner stage 2. They kick started her and then her lungs got involved. This DOES NOT happen to all kids. It just happened to her.
Jane another mom on here has two boys with cf. Close in age. She would be a really big help in answering your second question.

Again welcome to the site.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Welcome to the site. I have found that the people here are very helpful. You can get some great tips from them. THey really open their hearts up.

I undrstand your english. You did very well<img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't answer all your questions but I do know some of the other moms can. On your first question everybody is different.
Some start off at birth with major problems, some can coast through with mild systems. With my daughter, hers was all GI (gastroenterology) her stomach, intestines, and such. She was very delayed in puberty. Tanner stage 2. They kick started her and then her lungs got involved. This DOES NOT happen to all kids. It just happened to her.
Jane another mom on here has two boys with cf. Close in age. She would be a really big help in answering your second question.

Again welcome to the site.

Cheryl mom to Malora 15 with cf
 
C

Cherylwithone

Guest
Welcome to the site. I have found that the people here are very helpful. You can get some great tips from them. THey really open their hearts up.
<br />
<br />I undrstand your english. You did very well<img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't answer all your questions but I do know some of the other moms can. On your first question everybody is different.
<br />Some start off at birth with major problems, some can coast through with mild systems. With my daughter, hers was all GI (gastroenterology) her stomach, intestines, and such. She was very delayed in puberty. Tanner stage 2. They kick started her and then her lungs got involved. This DOES NOT happen to all kids. It just happened to her.
<br />Jane another mom on here has two boys with cf. Close in age. She would be a really big help in answering your second question.
<br />
<br />Again welcome to the site.
<br />
<br />Cheryl mom to Malora 15 with cf
 

holmfamily1992

New member
I as well welcome you to this forum. These people on this site have been a great help to me. We have 8 children and my 9 year old was just diagnosed almost 2 months ago. His problems didnt start until last year. So yes, every case is different.
As far as more children, you need to speek to a genetic specailist. They would be more capable of answering that question. Do you have a Cystic Fibrosis Clinic where you are at? If so, they should put you in touch with the proper people.
What I have done within my own family and friends is told them if they have a cold or the flu, please stay home until you are well. We sanitize our hands when we come inside and I wash the door knobs and counters with an antibacterial type product. (Lysol)

Good luck and dont be affraid to ask as many questions as possible.

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
I as well welcome you to this forum. These people on this site have been a great help to me. We have 8 children and my 9 year old was just diagnosed almost 2 months ago. His problems didnt start until last year. So yes, every case is different.
As far as more children, you need to speek to a genetic specailist. They would be more capable of answering that question. Do you have a Cystic Fibrosis Clinic where you are at? If so, they should put you in touch with the proper people.
What I have done within my own family and friends is told them if they have a cold or the flu, please stay home until you are well. We sanitize our hands when we come inside and I wash the door knobs and counters with an antibacterial type product. (Lysol)

Good luck and dont be affraid to ask as many questions as possible.

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
I as well welcome you to this forum. These people on this site have been a great help to me. We have 8 children and my 9 year old was just diagnosed almost 2 months ago. His problems didnt start until last year. So yes, every case is different.
As far as more children, you need to speek to a genetic specailist. They would be more capable of answering that question. Do you have a Cystic Fibrosis Clinic where you are at? If so, they should put you in touch with the proper people.
What I have done within my own family and friends is told them if they have a cold or the flu, please stay home until you are well. We sanitize our hands when we come inside and I wash the door knobs and counters with an antibacterial type product. (Lysol)

Good luck and dont be affraid to ask as many questions as possible.

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
I as well welcome you to this forum. These people on this site have been a great help to me. We have 8 children and my 9 year old was just diagnosed almost 2 months ago. His problems didnt start until last year. So yes, every case is different.
As far as more children, you need to speek to a genetic specailist. They would be more capable of answering that question. Do you have a Cystic Fibrosis Clinic where you are at? If so, they should put you in touch with the proper people.
What I have done within my own family and friends is told them if they have a cold or the flu, please stay home until you are well. We sanitize our hands when we come inside and I wash the door knobs and counters with an antibacterial type product. (Lysol)

Good luck and dont be affraid to ask as many questions as possible.

Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
I as well welcome you to this forum. These people on this site have been a great help to me. We have 8 children and my 9 year old was just diagnosed almost 2 months ago. His problems didnt start until last year. So yes, every case is different.
<br />As far as more children, you need to speek to a genetic specailist. They would be more capable of answering that question. Do you have a Cystic Fibrosis Clinic where you are at? If so, they should put you in touch with the proper people.
<br />What I have done within my own family and friends is told them if they have a cold or the flu, please stay home until you are well. We sanitize our hands when we come inside and I wash the door knobs and counters with an antibacterial type product. (Lysol)
<br />
<br />Good luck and dont be affraid to ask as many questions as possible.
<br />
<br />Tina
<br />
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

Alyssa

New member
Welcome to the site - we are glad you took the time to write -- yes, your english is good enough...far better than most of us could do with your language I'm sure !

Your first question... there is no good answer for... some kids have trouble from day one and others are adults... my son didn't show any symptoms until 21 years old...so you just never know. The important thing is the treatment and regular checkups. In the US it is recommended people with cystic fibrosis see a specialist every 3 three month - hopefully your daughter is being seem by a specialist who is trained and has experience treating cystic fibrosis.

The second question is tricky too -- I have two kids but they were not diagnosed until they were age 14 and 18 years old. So we never had to ask ourselves the "should we have another kid" question. As far as cross contamination goes... some kids get the same bugs and sometimes they don't, again it just depends, everyone is different. Again, my kids grew up together never knowing they had cystic fibrosis. Our daughter had many infections, but our son never got any from her -- but that's probably because he wasn't having any lung problems at all during that time (he hadn't been diagnosed yet and didn't have any symptoms) There are other people on this site with younger kids than mine and their health problems are more severe/complex than my kids so they might have something more to add, but for the most part parents just deal with what they get the best way they can - each kid is so different, you just do whatever it takes.

Best wishes and again, welcome to the site.
 

Alyssa

New member
Welcome to the site - we are glad you took the time to write -- yes, your english is good enough...far better than most of us could do with your language I'm sure !

Your first question... there is no good answer for... some kids have trouble from day one and others are adults... my son didn't show any symptoms until 21 years old...so you just never know. The important thing is the treatment and regular checkups. In the US it is recommended people with cystic fibrosis see a specialist every 3 three month - hopefully your daughter is being seem by a specialist who is trained and has experience treating cystic fibrosis.

The second question is tricky too -- I have two kids but they were not diagnosed until they were age 14 and 18 years old. So we never had to ask ourselves the "should we have another kid" question. As far as cross contamination goes... some kids get the same bugs and sometimes they don't, again it just depends, everyone is different. Again, my kids grew up together never knowing they had cystic fibrosis. Our daughter had many infections, but our son never got any from her -- but that's probably because he wasn't having any lung problems at all during that time (he hadn't been diagnosed yet and didn't have any symptoms) There are other people on this site with younger kids than mine and their health problems are more severe/complex than my kids so they might have something more to add, but for the most part parents just deal with what they get the best way they can - each kid is so different, you just do whatever it takes.

Best wishes and again, welcome to the site.
 

Alyssa

New member
Welcome to the site - we are glad you took the time to write -- yes, your english is good enough...far better than most of us could do with your language I'm sure !

Your first question... there is no good answer for... some kids have trouble from day one and others are adults... my son didn't show any symptoms until 21 years old...so you just never know. The important thing is the treatment and regular checkups. In the US it is recommended people with cystic fibrosis see a specialist every 3 three month - hopefully your daughter is being seem by a specialist who is trained and has experience treating cystic fibrosis.

The second question is tricky too -- I have two kids but they were not diagnosed until they were age 14 and 18 years old. So we never had to ask ourselves the "should we have another kid" question. As far as cross contamination goes... some kids get the same bugs and sometimes they don't, again it just depends, everyone is different. Again, my kids grew up together never knowing they had cystic fibrosis. Our daughter had many infections, but our son never got any from her -- but that's probably because he wasn't having any lung problems at all during that time (he hadn't been diagnosed yet and didn't have any symptoms) There are other people on this site with younger kids than mine and their health problems are more severe/complex than my kids so they might have something more to add, but for the most part parents just deal with what they get the best way they can - each kid is so different, you just do whatever it takes.

Best wishes and again, welcome to the site.
 

Alyssa

New member
Welcome to the site - we are glad you took the time to write -- yes, your english is good enough...far better than most of us could do with your language I'm sure !

Your first question... there is no good answer for... some kids have trouble from day one and others are adults... my son didn't show any symptoms until 21 years old...so you just never know. The important thing is the treatment and regular checkups. In the US it is recommended people with cystic fibrosis see a specialist every 3 three month - hopefully your daughter is being seem by a specialist who is trained and has experience treating cystic fibrosis.

The second question is tricky too -- I have two kids but they were not diagnosed until they were age 14 and 18 years old. So we never had to ask ourselves the "should we have another kid" question. As far as cross contamination goes... some kids get the same bugs and sometimes they don't, again it just depends, everyone is different. Again, my kids grew up together never knowing they had cystic fibrosis. Our daughter had many infections, but our son never got any from her -- but that's probably because he wasn't having any lung problems at all during that time (he hadn't been diagnosed yet and didn't have any symptoms) There are other people on this site with younger kids than mine and their health problems are more severe/complex than my kids so they might have something more to add, but for the most part parents just deal with what they get the best way they can - each kid is so different, you just do whatever it takes.

Best wishes and again, welcome to the site.
 

Alyssa

New member
Welcome to the site - we are glad you took the time to write -- yes, your english is good enough...far better than most of us could do with your language I'm sure !
<br />
<br />Your first question... there is no good answer for... some kids have trouble from day one and others are adults... my son didn't show any symptoms until 21 years old...so you just never know. The important thing is the treatment and regular checkups. In the US it is recommended people with cystic fibrosis see a specialist every 3 three month - hopefully your daughter is being seem by a specialist who is trained and has experience treating cystic fibrosis.
<br />
<br />The second question is tricky too -- I have two kids but they were not diagnosed until they were age 14 and 18 years old. So we never had to ask ourselves the "should we have another kid" question. As far as cross contamination goes... some kids get the same bugs and sometimes they don't, again it just depends, everyone is different. Again, my kids grew up together never knowing they had cystic fibrosis. Our daughter had many infections, but our son never got any from her -- but that's probably because he wasn't having any lung problems at all during that time (he hadn't been diagnosed yet and didn't have any symptoms) There are other people on this site with younger kids than mine and their health problems are more severe/complex than my kids so they might have something more to add, but for the most part parents just deal with what they get the best way they can - each kid is so different, you just do whatever it takes.
<br />
<br />Best wishes and again, welcome to the site.
 
Top