Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
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anyone dx'd with CF without known mutations?
- Thread starter asiewny
- Start date
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
Hi! My son was cleared of having CF last spring after Genzyme amplified genetic testing came up finding no mutations. He had a borerline/positive sweat test and failure to thrive which prompted the CF testing last winter. We were very relieved to find out he did not have CF; however, he now has pneumonia in both lungs all over the place. He is not sick otherwise, just sounds horrible. Both the DR. and NP said his lungs sound like "CF lungs." He is on his second round of anitbiotics and is on zithromax now. I am worried that won't be enough and if his lungs don't clear up with that, what is next? I can't help but wonder if he still might have CF having this lung problem. I mean regular kids get pneumonia in some places in their lungs, but his lungs are sooo involved, how common is that in regular kids? Does anyone have a child diagnosed with CF that do not have any gene mutations?
We were are in Canada and it took us about 3 years to find out the mutations. We were given a simple test and we found out right away that one of the mutations was the Delta 508. But to find the second one it went to a Lab in Toronto where they only look for mutations part time. So yes 3 years. At the time how long it took to get results it didn't matter. However, I think if the new mutation targeting drugs were available I would of used the option to pay for the test in the States.
We were are in Canada and it took us about 3 years to find out the mutations. We were given a simple test and we found out right away that one of the mutations was the Delta 508. But to find the second one it went to a Lab in Toronto where they only look for mutations part time. So yes 3 years. At the time how long it took to get results it didn't matter. However, I think if the new mutation targeting drugs were available I would of used the option to pay for the test in the States.
We were are in Canada and it took us about 3 years to find out the mutations. We were given a simple test and we found out right away that one of the mutations was the Delta 508. But to find the second one it went to a Lab in Toronto where they only look for mutations part time. So yes 3 years. At the time how long it took to get results it didn't matter. However, I think if the new mutation targeting drugs were available I would of used the option to pay for the test in the States.
We were are in Canada and it took us about 3 years to find out the mutations. We were given a simple test and we found out right away that one of the mutations was the Delta 508. But to find the second one it went to a Lab in Toronto where they only look for mutations part time. So yes 3 years. At the time how long it took to get results it didn't matter. However, I think if the new mutation targeting drugs were available I would of used the option to pay for the test in the States.
We were are in Canada and it took us about 3 years to find out the mutations. We were given a simple test and we found out right away that one of the mutations was the Delta 508. But to find the second one it went to a Lab in Toronto where they only look for mutations part time. So yes 3 years. At the time how long it took to get results it didn't matter. However, I think if the new mutation targeting drugs were available I would of used the option to pay for the test in the States.
MaryamsMommy
New member
Hi,
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
MaryamsMommy
New member
Hi,
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
MaryamsMommy
New member
Hi,
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
MaryamsMommy
New member
Hi,
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
Best of luck
Karen Mommy to Maryam 9 with CF
MaryamsMommy
New member
Hi,
<br /> My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
<br />
<br />Best of luck
<br />
<br />Karen Mommy to Maryam 9 with CF
<br /> My daughter Maryam who is 9 was Diagnosed with CF 5 years ago. NO Mutations found as of this day the complete genetic testing has been done twice, and we will do so every few years till something pops up. Keep in mind they are always adding new genes as they are discovered. Her Diagnosis was Based on 4 Positive Sweat test all ranging between 89-110,Pancreatic Insuffiancy, Culturing and Colonization of CF specific Bugs. She has Been Colonized with PA for years. Also Actellectisis not sure of the spelling but its lung scaring found in people with CF. Oh and Nasal Polyps and Sinus disease. Very Typical CF Issues. 15-20 years ago the sweat test was gold standard, and for most parts still is. Reguardless of your sons diagnosis,right now they should be treating the issues he has even if it requires a CF type Protocal.
<br />
<br />Best of luck
<br />
<br />Karen Mommy to Maryam 9 with CF
mysticrose
New member
10 years ago when my 11 yr old was diagnosed they only saw one of the CF gene's through genetic testing. When my 10 yr old was born with meconium illieus they ruled out CF with a genetics test because they only saw one gene. At 4 months and no weight gain since 2 months we did a sweat test. Which said the genetics testing didn't see a gene. Go with your gut. You think more and different testing needs to be done fight till you get it.
mysticrose
New member
10 years ago when my 11 yr old was diagnosed they only saw one of the CF gene's through genetic testing. When my 10 yr old was born with meconium illieus they ruled out CF with a genetics test because they only saw one gene. At 4 months and no weight gain since 2 months we did a sweat test. Which said the genetics testing didn't see a gene. Go with your gut. You think more and different testing needs to be done fight till you get it.
mysticrose
New member
10 years ago when my 11 yr old was diagnosed they only saw one of the CF gene's through genetic testing. When my 10 yr old was born with meconium illieus they ruled out CF with a genetics test because they only saw one gene. At 4 months and no weight gain since 2 months we did a sweat test. Which said the genetics testing didn't see a gene. Go with your gut. You think more and different testing needs to be done fight till you get it.
mysticrose
New member
10 years ago when my 11 yr old was diagnosed they only saw one of the CF gene's through genetic testing. When my 10 yr old was born with meconium illieus they ruled out CF with a genetics test because they only saw one gene. At 4 months and no weight gain since 2 months we did a sweat test. Which said the genetics testing didn't see a gene. Go with your gut. You think more and different testing needs to be done fight till you get it.
mysticrose
New member
10 years ago when my 11 yr old was diagnosed they only saw one of the CF gene's through genetic testing. When my 10 yr old was born with meconium illieus they ruled out CF with a genetics test because they only saw one gene. At 4 months and no weight gain since 2 months we did a sweat test. Which said the genetics testing didn't see a gene. Go with your gut. You think more and different testing needs to be done fight till you get it.