newborn diagnosed

[Alyssa]

I don't have a lot to add, as much good info has already been stated, but I wanted to say to the others who wanted clarification about how many genes were found -- I'm guessing even if they did only have one CF gene identified at this time, the sweat test numbers are pretty high -- there probably isn't much of a question of dx with those numbers.

Also to the mother -- like everyone said, there are many factors that can contribute to the wellness of a patient, but sometimes despite a patient/families best efforts, things just don't go well. It's very hard to predict. Just do the best that you can and know that there are people out there in their 60's and 70's with CF too !

 

[Alyssa]

I don't have a lot to add, as much good info has already been stated, but I wanted to say to the others who wanted clarification about how many genes were found -- I'm guessing even if they did only have one CF gene identified at this time, the sweat test numbers are pretty high -- there probably isn't much of a question of dx with those numbers.

Also to the mother -- like everyone said, there are many factors that can contribute to the wellness of a patient, but sometimes despite a patient/families best efforts, things just don't go well. It's very hard to predict. Just do the best that you can and know that there are people out there in their 60's and 70's with CF too !

 

[Alyssa]

I don't have a lot to add, as much good info has already been stated, but I wanted to say to the others who wanted clarification about how many genes were found -- I'm guessing even if they did only have one CF gene identified at this time, the sweat test numbers are pretty high -- there probably isn't much of a question of dx with those numbers.

Also to the mother -- like everyone said, there are many factors that can contribute to the wellness of a patient, but sometimes despite a patient/families best efforts, things just don't go well. It's very hard to predict. Just do the best that you can and know that there are people out there in their 60's and 70's with CF too !

 

[Alyssa]

I don't have a lot to add, as much good info has already been stated, but I wanted to say to the others who wanted clarification about how many genes were found -- I'm guessing even if they did only have one CF gene identified at this time, the sweat test numbers are pretty high -- there probably isn't much of a question of dx with those numbers.

Also to the mother -- like everyone said, there are many factors that can contribute to the wellness of a patient, but sometimes despite a patient/families best efforts, things just don't go well. It's very hard to predict. Just do the best that you can and know that there are people out there in their 60's and 70's with CF too !

 

[newcfmom]

Thanks for all the replies. I am feeling a bit better about the situation already. It's been wonderful to hear from so many of you who either live with CF or who have older children with CF. it really does give me hope that she really can have a long happy life. For a couple of you who asked.. my husband and I have not yet been tested, but because of the sweat test results the doctors told us she definitely has CF.
The good news is we were at the doc for my dsughter's 2 month check up today and he said she has no symptoms yet and so far appears to be completely healthy. I realize this can all change very quickly, but I'm taking it one day at a time.. and I'm thankful she's healthy so far.

 

[newcfmom]

Thanks for all the replies. I am feeling a bit better about the situation already. It's been wonderful to hear from so many of you who either live with CF or who have older children with CF. it really does give me hope that she really can have a long happy life. For a couple of you who asked.. my husband and I have not yet been tested, but because of the sweat test results the doctors told us she definitely has CF.
The good news is we were at the doc for my dsughter's 2 month check up today and he said she has no symptoms yet and so far appears to be completely healthy. I realize this can all change very quickly, but I'm taking it one day at a time.. and I'm thankful she's healthy so far.

 

[newcfmom]

Thanks for all the replies. I am feeling a bit better about the situation already. It's been wonderful to hear from so many of you who either live with CF or who have older children with CF. it really does give me hope that she really can have a long happy life. For a couple of you who asked.. my husband and I have not yet been tested, but because of the sweat test results the doctors told us she definitely has CF.
The good news is we were at the doc for my dsughter's 2 month check up today and he said she has no symptoms yet and so far appears to be completely healthy. I realize this can all change very quickly, but I'm taking it one day at a time.. and I'm thankful she's healthy so far.

 

[CFMOM65]

hi it seems like yesterday that my littlest one was diagnosed w/ cf w / a sweat teast of 110 she was 2 weeks old and it was 2 days before xmas it was really hard on me but ibelieve like u do u have 2 take it a day at a time and pray alot and hope that by the time they are in there teens there will be a miraculous drug or better yet a cure. shes 16 mnths now and doing very well except for her sinuses the 1st year was really rough 10 hospital stays 3 were from pneumonia caused by aspirating her formula shes had rectal prolapse needless 2 say i spent alot of the 1st yr crying i found though in your most difficult times u find a strength in yourself that u didn't know u had. her 2nd yr has been really good 1 overnight stay for a vitamin k defficiency and some sinus issues and shes in the 50 th percentile for weight. ido agree that the severity of cf is different in everyone one may have mild symptoms and another case may be severe. i have a 9 yr old w/o cf, i had her tested after the baby was diagnosed & the sweat test was neg things 4 the most part are a little hard on her theres alot of time spent on the baby but i make special outings and alone time just for us that helps, she loves her sister. the only time thats really hard on her and myself are hospital stays but we make it thru and so will u, i hope this helps i know how it feels

cfmom

daughter 9 yrs old w/o cf and baby girl 16 mnths w/ cf

 

[CFMOM65]

hi it seems like yesterday that my littlest one was diagnosed w/ cf w / a sweat teast of 110 she was 2 weeks old and it was 2 days before xmas it was really hard on me but ibelieve like u do u have 2 take it a day at a time and pray alot and hope that by the time they are in there teens there will be a miraculous drug or better yet a cure. shes 16 mnths now and doing very well except for her sinuses the 1st year was really rough 10 hospital stays 3 were from pneumonia caused by aspirating her formula shes had rectal prolapse needless 2 say i spent alot of the 1st yr crying i found though in your most difficult times u find a strength in yourself that u didn't know u had. her 2nd yr has been really good 1 overnight stay for a vitamin k defficiency and some sinus issues and shes in the 50 th percentile for weight. ido agree that the severity of cf is different in everyone one may have mild symptoms and another case may be severe. i have a 9 yr old w/o cf, i had her tested after the baby was diagnosed & the sweat test was neg things 4 the most part are a little hard on her theres alot of time spent on the baby but i make special outings and alone time just for us that helps, she loves her sister. the only time thats really hard on her and myself are hospital stays but we make it thru and so will u, i hope this helps i know how it feels

cfmom

daughter 9 yrs old w/o cf and baby girl 16 mnths w/ cf

 

[CFMOM65]

hi it seems like yesterday that my littlest one was diagnosed w/ cf w / a sweat teast of 110 she was 2 weeks old and it was 2 days before xmas it was really hard on me but ibelieve like u do u have 2 take it a day at a time and pray alot and hope that by the time they are in there teens there will be a miraculous drug or better yet a cure. shes 16 mnths now and doing very well except for her sinuses the 1st year was really rough 10 hospital stays 3 were from pneumonia caused by aspirating her formula shes had rectal prolapse needless 2 say i spent alot of the 1st yr crying i found though in your most difficult times u find a strength in yourself that u didn't know u had. her 2nd yr has been really good 1 overnight stay for a vitamin k defficiency and some sinus issues and shes in the 50 th percentile for weight. ido agree that the severity of cf is different in everyone one may have mild symptoms and another case may be severe. i have a 9 yr old w/o cf, i had her tested after the baby was diagnosed & the sweat test was neg things 4 the most part are a little hard on her theres alot of time spent on the baby but i make special outings and alone time just for us that helps, she loves her sister. the only time thats really hard on her and myself are hospital stays but we make it thru and so will u, i hope this helps i know how it feels

cfmom

daughter 9 yrs old w/o cf and baby girl 16 mnths w/ cf

 

[Ellasmommy]

My daughter was diagnosed at 9 days old with no symptons! I feel your pain and every day I am learning more and more. Hope for the best pray for the worse.

 

[Ellasmommy]

My daughter was diagnosed at 9 days old with no symptons! I feel your pain and every day I am learning more and more. Hope for the best pray for the worse.

 

[Ellasmommy]

My daughter was diagnosed at 9 days old with no symptons! I feel your pain and every day I am learning more and more. Hope for the best pray for the worse.

 

[Hughett]

I am sooo sorry that you are going thru this. It reminds me of our son who is now 10 mo. old and our experience when we found out. Lots of Crying and praying. Like you I had no idea there was a CF Gene in my family line. Took us by surprise. One of the best things that happened me is finding this site. This has been a better source of information than our doctor at times. lol.

Thankfully our baby is gaining weight like crazy. Enzymes are a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> John for the most part is quite normal. After awhile everything sinks into a norm where you take care of you child and keep everything clean ect.... Once again I am sorry that has happened but I am glad you are here with all these great people on this site. The support from everyone here helped me get thru it. If you need anything at all just let me know. My wife and I will help any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

I am sooo sorry that you are going thru this. It reminds me of our son who is now 10 mo. old and our experience when we found out. Lots of Crying and praying. Like you I had no idea there was a CF Gene in my family line. Took us by surprise. One of the best things that happened me is finding this site. This has been a better source of information than our doctor at times. lol.

Thankfully our baby is gaining weight like crazy. Enzymes are a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> John for the most part is quite normal. After awhile everything sinks into a norm where you take care of you child and keep everything clean ect.... Once again I am sorry that has happened but I am glad you are here with all these great people on this site. The support from everyone here helped me get thru it. If you need anything at all just let me know. My wife and I will help any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

I am sooo sorry that you are going thru this. It reminds me of our son who is now 10 mo. old and our experience when we found out. Lots of Crying and praying. Like you I had no idea there was a CF Gene in my family line. Took us by surprise. One of the best things that happened me is finding this site. This has been a better source of information than our doctor at times. lol.

Thankfully our baby is gaining weight like crazy. Enzymes are a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> John for the most part is quite normal. After awhile everything sinks into a norm where you take care of you child and keep everything clean ect.... Once again I am sorry that has happened but I am glad you are here with all these great people on this site. The support from everyone here helped me get thru it. If you need anything at all just let me know. My wife and I will help any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[julie]

My husband was diagnosed at 18 months, and is now 26, a college graduate and father to 3. As other people have already said, CF is very different for everyone, even siblings who both have CF can have things more severe than the other child.

With today's treatments, there is definately hope. As a parent, I can only imagine how hard this diagnosis must be. But people do live their lives successfully with it.

I want to point out though that just because they didn't find 2 mutations, doesn't mean your child doesn't have CF with sweat numbers like your childs. There are still some unidentified CF mutations. I'm not sure if that was explained yet or not.

 

[julie]

My husband was diagnosed at 18 months, and is now 26, a college graduate and father to 3. As other people have already said, CF is very different for everyone, even siblings who both have CF can have things more severe than the other child.

With today's treatments, there is definately hope. As a parent, I can only imagine how hard this diagnosis must be. But people do live their lives successfully with it.

I want to point out though that just because they didn't find 2 mutations, doesn't mean your child doesn't have CF with sweat numbers like your childs. There are still some unidentified CF mutations. I'm not sure if that was explained yet or not.

 

[julie]

My husband was diagnosed at 18 months, and is now 26, a college graduate and father to 3. As other people have already said, CF is very different for everyone, even siblings who both have CF can have things more severe than the other child.

With today's treatments, there is definately hope. As a parent, I can only imagine how hard this diagnosis must be. But people do live their lives successfully with it.

I want to point out though that just because they didn't find 2 mutations, doesn't mean your child doesn't have CF with sweat numbers like your childs. There are still some unidentified CF mutations. I'm not sure if that was explained yet or not.

 

[JennifersHope]

Hi,

I am sorry that you joined our club... but I always like to point out to the parents one fact... I am 34 years old and I just graduated nursing school last year and I am now an RN.. I work full time.. soon to be part time because it is to much but anyway..my lungs are decent..

My point is this.. when I was born, the average life span of someone with CF was in the low teenage years, as time went on, the life span age went up, and up and up.. and is now at 37.5 years old.

So keep that in mind, I don't believe that they discovered all that they are ever going to discover in the way of improving treatments .. I believe just like history has shown that the average life span is going to increase and increase for a lot of CFers..

There are some CFers that that isn't the case for.. and sadly that is the truth that some children, even children on this forum now are suffering a lot more then the average adult Cfer.. so it does all depend.. but you have every reason to be hopeful especially in this day and age.


Many, many, of us are adults living a decent life now. I won't lie it is hard as heck sometimes being young and feeling like I have the body of a 100 year old but usually for most of us, we take the hardship and turn it around and become stronger and kinder human beings for it.

Welcome to this website, I know you will find a lot of great help and support here.. Feel free to vent,ask questions and share anything you want..


Jennifer
34 with CF/Addison's disease/ osteroporsis. CFRD, HTN and a million and one other things I won't go into BUT is about to buy her first home.. and who in spite of having it really hard a lot of the time.. LOVes her life