Could it be CF?

M

moosemom

New member
I totally agree... I passed my sweat test and the initial gene mapping but... Here I am in the hospital for the 5th time for yet, another tune-up. I am 40 and was only diagnosed 5 years ago mostly because I also have MAC - abscessus (another story). I have an almost 8 year old daughter that according to my mom is "just like" me as a kid, lots of infections without a real explanation. According to ambry she only has one bad gene w1282x... We still fear that another gene of hers will be identified as CF, so for now we pray and hold our breath.

Good luck
 
M

moosemom

New member
I totally agree... I passed my sweat test and the initial gene mapping but... Here I am in the hospital for the 5th time for yet, another tune-up. I am 40 and was only diagnosed 5 years ago mostly because I also have MAC - abscessus (another story). I have an almost 8 year old daughter that according to my mom is "just like" me as a kid, lots of infections without a real explanation. According to ambry she only has one bad gene w1282x... We still fear that another gene of hers will be identified as CF, so for now we pray and hold our breath.

Good luck
 
M

moosemom

New member
I totally agree... I passed my sweat test and the initial gene mapping but... Here I am in the hospital for the 5th time for yet, another tune-up. I am 40 and was only diagnosed 5 years ago mostly because I also have MAC - abscessus (another story). I have an almost 8 year old daughter that according to my mom is "just like" me as a kid, lots of infections without a real explanation. According to ambry she only has one bad gene w1282x... We still fear that another gene of hers will be identified as CF, so for now we pray and hold our breath.

Good luck
 
M

moosemom

New member
I totally agree... I passed my sweat test and the initial gene mapping but... Here I am in the hospital for the 5th time for yet, another tune-up. I am 40 and was only diagnosed 5 years ago mostly because I also have MAC - abscessus (another story). I have an almost 8 year old daughter that according to my mom is "just like" me as a kid, lots of infections without a real explanation. According to ambry she only has one bad gene w1282x... We still fear that another gene of hers will be identified as CF, so for now we pray and hold our breath.

Good luck
 
M

moosemom

New member
I totally agree... I passed my sweat test and the initial gene mapping but... Here I am in the hospital for the 5th time for yet, another tune-up. I am 40 and was only diagnosed 5 years ago mostly because I also have MAC - abscessus (another story). I have an almost 8 year old daughter that according to my mom is "just like" me as a kid, lots of infections without a real explanation. According to ambry she only has one bad gene w1282x... We still fear that another gene of hers will be identified as CF, so for now we pray and hold our breath.
<br />
<br />Good luck
 
A

Alyssa

New member
<b>No you are not over reacting</b>... ditto to the sweat test and genetic testing comments.... my kids are in the normal range and it caused a misdiagnoses for my daughter for 8 years..... "normal" sweat test means nothing in my book.

Also the lack of GI problems is also a possibility, both my kids are pancreatic sufficient so there are no issues there.... I believe the statistics are something like 20% of people with CF are pancreatic sufficient.

Get a full genetic test... anything less is a waste of time.... don't let them talk you into anything less than ALL gene mutations, there are nearly 1600 to test for.... their most favorite number is 89....how can they even consider that to be a responsible test?

Oh, and yes, I vote for asking what bacteria was growing in her lungs... if it is staph or pseudomonas aeruginosa that's should have raised some eyebrows.....
 
A

Alyssa

New member
<b>No you are not over reacting</b>... ditto to the sweat test and genetic testing comments.... my kids are in the normal range and it caused a misdiagnoses for my daughter for 8 years..... "normal" sweat test means nothing in my book.

Also the lack of GI problems is also a possibility, both my kids are pancreatic sufficient so there are no issues there.... I believe the statistics are something like 20% of people with CF are pancreatic sufficient.

Get a full genetic test... anything less is a waste of time.... don't let them talk you into anything less than ALL gene mutations, there are nearly 1600 to test for.... their most favorite number is 89....how can they even consider that to be a responsible test?

Oh, and yes, I vote for asking what bacteria was growing in her lungs... if it is staph or pseudomonas aeruginosa that's should have raised some eyebrows.....
 
A

Alyssa

New member
<b>No you are not over reacting</b>... ditto to the sweat test and genetic testing comments.... my kids are in the normal range and it caused a misdiagnoses for my daughter for 8 years..... "normal" sweat test means nothing in my book.

Also the lack of GI problems is also a possibility, both my kids are pancreatic sufficient so there are no issues there.... I believe the statistics are something like 20% of people with CF are pancreatic sufficient.

Get a full genetic test... anything less is a waste of time.... don't let them talk you into anything less than ALL gene mutations, there are nearly 1600 to test for.... their most favorite number is 89....how can they even consider that to be a responsible test?

Oh, and yes, I vote for asking what bacteria was growing in her lungs... if it is staph or pseudomonas aeruginosa that's should have raised some eyebrows.....
 
A

Alyssa

New member
<b>No you are not over reacting</b>... ditto to the sweat test and genetic testing comments.... my kids are in the normal range and it caused a misdiagnoses for my daughter for 8 years..... "normal" sweat test means nothing in my book.

Also the lack of GI problems is also a possibility, both my kids are pancreatic sufficient so there are no issues there.... I believe the statistics are something like 20% of people with CF are pancreatic sufficient.

Get a full genetic test... anything less is a waste of time.... don't let them talk you into anything less than ALL gene mutations, there are nearly 1600 to test for.... their most favorite number is 89....how can they even consider that to be a responsible test?

Oh, and yes, I vote for asking what bacteria was growing in her lungs... if it is staph or pseudomonas aeruginosa that's should have raised some eyebrows.....
 
A

Alyssa

New member
<b>No you are not over reacting</b>... ditto to the sweat test and genetic testing comments.... my kids are in the normal range and it caused a misdiagnoses for my daughter for 8 years..... "normal" sweat test means nothing in my book.
<br />
<br />Also the lack of GI problems is also a possibility, both my kids are pancreatic sufficient so there are no issues there.... I believe the statistics are something like 20% of people with CF are pancreatic sufficient.
<br />
<br />Get a full genetic test... anything less is a waste of time.... don't let them talk you into anything less than ALL gene mutations, there are nearly 1600 to test for.... their most favorite number is 89....how can they even consider that to be a responsible test?
<br />
<br />Oh, and yes, I vote for asking what bacteria was growing in her lungs... if it is staph or pseudomonas aeruginosa that's should have raised some eyebrows.....
 
J

JORDYSMOM

New member
Don't ever worry about overreacting when your child's health is at stake. I agree with the others here, and would suggest the full panel test. It really is the only way to put your mind at ease.

Do whatever you have to do to get the answers you need to help your child. Let us know what happens.

Stacey
 
J

JORDYSMOM

New member
Don't ever worry about overreacting when your child's health is at stake. I agree with the others here, and would suggest the full panel test. It really is the only way to put your mind at ease.

Do whatever you have to do to get the answers you need to help your child. Let us know what happens.

Stacey
 
J

JORDYSMOM

New member
Don't ever worry about overreacting when your child's health is at stake. I agree with the others here, and would suggest the full panel test. It really is the only way to put your mind at ease.

Do whatever you have to do to get the answers you need to help your child. Let us know what happens.

Stacey
 
J

JORDYSMOM

New member
Don't ever worry about overreacting when your child's health is at stake. I agree with the others here, and would suggest the full panel test. It really is the only way to put your mind at ease.

Do whatever you have to do to get the answers you need to help your child. Let us know what happens.

Stacey
 
J

JORDYSMOM

New member
Don't ever worry about overreacting when your child's health is at stake. I agree with the others here, and would suggest the full panel test. It really is the only way to put your mind at ease.
<br />
<br />Do whatever you have to do to get the answers you need to help your child. Let us know what happens.
<br />
<br />Stacey
 
L

LadyPenelope72

New member
Hi everyone,

Thank you for all your responses. You have been very helpful. Some of you have mentioned that the kind of bacteria matters. They never did a sputum sample but all of the pneumonias were treated with amoxicillin and it cleared them all perfectly. She never had to be hospitalized for any of them. I also wanted to say that all the pneumonias have been in her right lower lobe. They mentioned that she may have scarring in her lower lobe where she can't clear the microbes out. I am not sure if the microbes some of you were mentioning respond to amoxicillin. If any of you know that would be really helpful. This latest walking pneumonia that she has gotten is the first to be in her left lung. They gave her azithromycin for it. They didn't do a chest x-ray for it because they said this is a different beast.

When they first mentioned CF a few years ago I had my husband do a DNA test for the 32 main genes that cause 90% of the mutations. He is not a carrier of those. I thought that before I have her do the full test and have to have a blood draw that would traumatize her and spend that much money I would also do the DNA test. If I am not a carrier of the main types I think it would greatly lessen our chances of her having it. If I am a carrier of one of these main types then I would go ahead with the full work-up. What do you guys think?

Thank you all again.

LadyPenelope
 
L

LadyPenelope72

New member
Hi everyone,

Thank you for all your responses. You have been very helpful. Some of you have mentioned that the kind of bacteria matters. They never did a sputum sample but all of the pneumonias were treated with amoxicillin and it cleared them all perfectly. She never had to be hospitalized for any of them. I also wanted to say that all the pneumonias have been in her right lower lobe. They mentioned that she may have scarring in her lower lobe where she can't clear the microbes out. I am not sure if the microbes some of you were mentioning respond to amoxicillin. If any of you know that would be really helpful. This latest walking pneumonia that she has gotten is the first to be in her left lung. They gave her azithromycin for it. They didn't do a chest x-ray for it because they said this is a different beast.

When they first mentioned CF a few years ago I had my husband do a DNA test for the 32 main genes that cause 90% of the mutations. He is not a carrier of those. I thought that before I have her do the full test and have to have a blood draw that would traumatize her and spend that much money I would also do the DNA test. If I am not a carrier of the main types I think it would greatly lessen our chances of her having it. If I am a carrier of one of these main types then I would go ahead with the full work-up. What do you guys think?

Thank you all again.

LadyPenelope
 
L

LadyPenelope72

New member
Hi everyone,

Thank you for all your responses. You have been very helpful. Some of you have mentioned that the kind of bacteria matters. They never did a sputum sample but all of the pneumonias were treated with amoxicillin and it cleared them all perfectly. She never had to be hospitalized for any of them. I also wanted to say that all the pneumonias have been in her right lower lobe. They mentioned that she may have scarring in her lower lobe where she can't clear the microbes out. I am not sure if the microbes some of you were mentioning respond to amoxicillin. If any of you know that would be really helpful. This latest walking pneumonia that she has gotten is the first to be in her left lung. They gave her azithromycin for it. They didn't do a chest x-ray for it because they said this is a different beast.

When they first mentioned CF a few years ago I had my husband do a DNA test for the 32 main genes that cause 90% of the mutations. He is not a carrier of those. I thought that before I have her do the full test and have to have a blood draw that would traumatize her and spend that much money I would also do the DNA test. If I am not a carrier of the main types I think it would greatly lessen our chances of her having it. If I am a carrier of one of these main types then I would go ahead with the full work-up. What do you guys think?

Thank you all again.

LadyPenelope
 
L

LadyPenelope72

New member
Hi everyone,

Thank you for all your responses. You have been very helpful. Some of you have mentioned that the kind of bacteria matters. They never did a sputum sample but all of the pneumonias were treated with amoxicillin and it cleared them all perfectly. She never had to be hospitalized for any of them. I also wanted to say that all the pneumonias have been in her right lower lobe. They mentioned that she may have scarring in her lower lobe where she can't clear the microbes out. I am not sure if the microbes some of you were mentioning respond to amoxicillin. If any of you know that would be really helpful. This latest walking pneumonia that she has gotten is the first to be in her left lung. They gave her azithromycin for it. They didn't do a chest x-ray for it because they said this is a different beast.

When they first mentioned CF a few years ago I had my husband do a DNA test for the 32 main genes that cause 90% of the mutations. He is not a carrier of those. I thought that before I have her do the full test and have to have a blood draw that would traumatize her and spend that much money I would also do the DNA test. If I am not a carrier of the main types I think it would greatly lessen our chances of her having it. If I am a carrier of one of these main types then I would go ahead with the full work-up. What do you guys think?

Thank you all again.

LadyPenelope
 
L

LadyPenelope72

New member
Hi everyone,
<br />
<br />Thank you for all your responses. You have been very helpful. Some of you have mentioned that the kind of bacteria matters. They never did a sputum sample but all of the pneumonias were treated with amoxicillin and it cleared them all perfectly. She never had to be hospitalized for any of them. I also wanted to say that all the pneumonias have been in her right lower lobe. They mentioned that she may have scarring in her lower lobe where she can't clear the microbes out. I am not sure if the microbes some of you were mentioning respond to amoxicillin. If any of you know that would be really helpful. This latest walking pneumonia that she has gotten is the first to be in her left lung. They gave her azithromycin for it. They didn't do a chest x-ray for it because they said this is a different beast.
<br />
<br />When they first mentioned CF a few years ago I had my husband do a DNA test for the 32 main genes that cause 90% of the mutations. He is not a carrier of those. I thought that before I have her do the full test and have to have a blood draw that would traumatize her and spend that much money I would also do the DNA test. If I am not a carrier of the main types I think it would greatly lessen our chances of her having it. If I am a carrier of one of these main types then I would go ahead with the full work-up. What do you guys think?
<br />
<br />Thank you all again.
<br />
<br />LadyPenelope
 
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