Definitive CF Diagnosis

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briellemom

New member
2 Days ago, we found out for sure that Delaney has CF. We tested her stool and it came back that she is moderately pancreatic insufficient. Just 15 months ago she was pancreatic sufficient. This feels like a huge blow to us, because through our journey there were so many unanswered questions. We still do not know what mutations she has and probably never will. She started Creon 3 times a day yesterday. Our baby boy has a sweat test on Tuesday and I am scared to death that it will be borderline, like his sisters was. I am trying not to think about it too much, but it has been consuming my mind. For those moms who have 2 or more children with CF, how has it affected your family, and how has it affected your decision to have or not have more children? Thanks and God Bless-
Laurie
 
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briellemom

New member
2 Days ago, we found out for sure that Delaney has CF. We tested her stool and it came back that she is moderately pancreatic insufficient. Just 15 months ago she was pancreatic sufficient. This feels like a huge blow to us, because through our journey there were so many unanswered questions. We still do not know what mutations she has and probably never will. She started Creon 3 times a day yesterday. Our baby boy has a sweat test on Tuesday and I am scared to death that it will be borderline, like his sisters was. I am trying not to think about it too much, but it has been consuming my mind. For those moms who have 2 or more children with CF, how has it affected your family, and how has it affected your decision to have or not have more children? Thanks and God Bless-
Laurie
 
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briellemom

New member
2 Days ago, we found out for sure that Delaney has CF. We tested her stool and it came back that she is moderately pancreatic insufficient. Just 15 months ago she was pancreatic sufficient. This feels like a huge blow to us, because through our journey there were so many unanswered questions. We still do not know what mutations she has and probably never will. She started Creon 3 times a day yesterday. Our baby boy has a sweat test on Tuesday and I am scared to death that it will be borderline, like his sisters was. I am trying not to think about it too much, but it has been consuming my mind. For those moms who have 2 or more children with CF, how has it affected your family, and how has it affected your decision to have or not have more children? Thanks and God Bless-
Laurie
 
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briellemom

New member
Yes. That is detailed in the original post from December. Basically, she had extensive genetic screening (checked for more than 1000) and they could not find her mutations. She had 2 borderline sweat tests, pseudomonis twice (treated and cured with Tobi both times one year apart) and now the pancreatic insufficiency.
 
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briellemom

New member
Yes. That is detailed in the original post from December. Basically, she had extensive genetic screening (checked for more than 1000) and they could not find her mutations. She had 2 borderline sweat tests, pseudomonis twice (treated and cured with Tobi both times one year apart) and now the pancreatic insufficiency.
 
B

briellemom

New member
Yes. That is detailed in the original post from December. Basically, she had extensive genetic screening (checked for more than 1000) and they could not find her mutations. She had 2 borderline sweat tests, pseudomonis twice (treated and cured with Tobi both times one year apart) and now the pancreatic insufficiency.
 
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NoExcuses

New member
Was the genetic test the Full Panel Ambry? If it wasn't, I would try that if you're interested in identifying her mutations. They test for over 1500 mutations...
 
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NoExcuses

New member
Was the genetic test the Full Panel Ambry? If it wasn't, I would try that if you're interested in identifying her mutations. They test for over 1500 mutations...
 
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NoExcuses

New member
Was the genetic test the Full Panel Ambry? If it wasn't, I would try that if you're interested in identifying her mutations. They test for over 1500 mutations...
 
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thefrogprincess

New member
I am not a mom, but my brother and I both have CF. My mom stayed at home until I was about 15, then both of my parents worked. When we were kids my parents didn't trust anyonw who wasn't familiar with CF to take care of us. The only baby sitters we ever had were a teenager with CF, close family friends that knew a lot about it, or relatives. We were on Social Security and state health care for a long time too.

That is just my family's version. You would probably get more responses if you posted your questions in the Families section. Good luck with everything! I hope you keep coming to this site, its a great place for support.
 
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thefrogprincess

New member
I am not a mom, but my brother and I both have CF. My mom stayed at home until I was about 15, then both of my parents worked. When we were kids my parents didn't trust anyonw who wasn't familiar with CF to take care of us. The only baby sitters we ever had were a teenager with CF, close family friends that knew a lot about it, or relatives. We were on Social Security and state health care for a long time too.

That is just my family's version. You would probably get more responses if you posted your questions in the Families section. Good luck with everything! I hope you keep coming to this site, its a great place for support.
 
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thefrogprincess

New member
I am not a mom, but my brother and I both have CF. My mom stayed at home until I was about 15, then both of my parents worked. When we were kids my parents didn't trust anyonw who wasn't familiar with CF to take care of us. The only baby sitters we ever had were a teenager with CF, close family friends that knew a lot about it, or relatives. We were on Social Security and state health care for a long time too.

That is just my family's version. You would probably get more responses if you posted your questions in the Families section. Good luck with everything! I hope you keep coming to this site, its a great place for support.
 
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Mommafirst

Guest
I'm sorry to hear you have a defnitive diagnosis and, yet, I am glad you have some answers and some ways to help your daughter. My only CFer is my youngest. Both my boys tested as carriers. I understand your fear. I will hope for your that your son has a very low normal sweat that will alleviate more living in limbo!!!
 
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Mommafirst

Guest
I'm sorry to hear you have a defnitive diagnosis and, yet, I am glad you have some answers and some ways to help your daughter. My only CFer is my youngest. Both my boys tested as carriers. I understand your fear. I will hope for your that your son has a very low normal sweat that will alleviate more living in limbo!!!
 
M

Mommafirst

Guest
I'm sorry to hear you have a defnitive diagnosis and, yet, I am glad you have some answers and some ways to help your daughter. My only CFer is my youngest. Both my boys tested as carriers. I understand your fear. I will hope for your that your son has a very low normal sweat that will alleviate more living in limbo!!!
 
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thinkpositive

New member
I am so sorry that your daughter was diagnosed with CF. However, our son - who is 18 now - and diagnosed at 10 - has been SOOOO much healthier since his diagnosis. Before that, we were at the doctor all the time. He missed alot of school. And since he has been diagnosed - he has only missed 2 days of school for cf related problems!! So I am so sorry about the diagnosis - but also thankful that you have some answers to her problems.

When he was diagnosed - they asked if we wanted to test our other two children. We did - of course - but we already knew that our youngest had it. Everything about her paralleled what her brother dealt with. Fortunately, our middle child is not even a carrier! We were fortunate to know which gene our oldest was affected by so our other two children just had to have a saliva test. I pray that your son is not affected by CF.

To answer your question about did it affect our decision to have more children --- I think that is one of the many blessings that has come from this - and that is if we had known about the dianosis - i do think we would have had one more child - however, i don't think we would have chosen to have our third child. So I am thankful that we did not find out sooner.

Having two children with CF has its positives and negatives. The positive is that neither of them feel "alone" in this journey. These two children are 9 years apart - and when our youngest is going through a tough time - our oldest is there to talk to her and help her through it. A response that i almost always hear from her when I try to tell her that doing her vest therapy and taking the medicines is so that she will stay healthy - she always tell me that i don't understand b/c i don't have CF. So having a sibling experience this with her helps tremendously. However, the negative is that sometimes I get tremendously overwhelmed at all that we do in regards to their CF therapies. But we always work through that.

I will be praying for you little boy and for you all and of course, your little girl.
 
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thinkpositive

New member
I am so sorry that your daughter was diagnosed with CF. However, our son - who is 18 now - and diagnosed at 10 - has been SOOOO much healthier since his diagnosis. Before that, we were at the doctor all the time. He missed alot of school. And since he has been diagnosed - he has only missed 2 days of school for cf related problems!! So I am so sorry about the diagnosis - but also thankful that you have some answers to her problems.

When he was diagnosed - they asked if we wanted to test our other two children. We did - of course - but we already knew that our youngest had it. Everything about her paralleled what her brother dealt with. Fortunately, our middle child is not even a carrier! We were fortunate to know which gene our oldest was affected by so our other two children just had to have a saliva test. I pray that your son is not affected by CF.

To answer your question about did it affect our decision to have more children --- I think that is one of the many blessings that has come from this - and that is if we had known about the dianosis - i do think we would have had one more child - however, i don't think we would have chosen to have our third child. So I am thankful that we did not find out sooner.

Having two children with CF has its positives and negatives. The positive is that neither of them feel "alone" in this journey. These two children are 9 years apart - and when our youngest is going through a tough time - our oldest is there to talk to her and help her through it. A response that i almost always hear from her when I try to tell her that doing her vest therapy and taking the medicines is so that she will stay healthy - she always tell me that i don't understand b/c i don't have CF. So having a sibling experience this with her helps tremendously. However, the negative is that sometimes I get tremendously overwhelmed at all that we do in regards to their CF therapies. But we always work through that.

I will be praying for you little boy and for you all and of course, your little girl.
 
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