Wanting an answer but scared to find out...

[junebugsmommy]

Hello again...

I wrote a post a few months ago... my son Kaden has been through so much. We thought that we had ruled out CF and had moved on the testing for PCD. But SURPRISE... no Primary Ciliary Dyskinesia... and now we are waiting for the results of the CF gene mutation tests. I have a few questions for you all...

1. Are false negatives on sweat tests commmon?
2. How long does it take to get the results of CF gene mutation tests?
3. Does anyone have any advice????

Update on Kaden's health....
Since my last post, Kaden had an adnoidectomy, sinus irrigation, ciliary biopsy, and his ear tubes replaced. He has been hospitalized three times since June. The area where he had the lung abscess has completely healed (thank GOD) and we are doing pulmocort twice daily, nasal steriods, and probiotics galore, oh and albueterol before bed. He has been off of antibiotics for almost three weeks (the longest span of time in the past year). We have so much to be thankful for but a plan and a name for what we are fighting would help my heart understand all of this. The diarreha has comes and goes... one diaper is "normal" then five minutes later a huge yucky one.

Is that common? or would the BM's always be gross if he had CF?

Our pulmonogolist explained that there is so much that they have learned about CF recently that changes the way they view sweat tests results and how CFers present themselves at all ages. I am lost... I want to help my son and I cannot fight a monster that I cannot see.

Robin "junesbug's mommy"

 

[junebugsmommy]

Hello again...

I wrote a post a few months ago... my son Kaden has been through so much. We thought that we had ruled out CF and had moved on the testing for PCD. But SURPRISE... no Primary Ciliary Dyskinesia... and now we are waiting for the results of the CF gene mutation tests. I have a few questions for you all...

1. Are false negatives on sweat tests commmon?
2. How long does it take to get the results of CF gene mutation tests?
3. Does anyone have any advice????

Update on Kaden's health....
Since my last post, Kaden had an adnoidectomy, sinus irrigation, ciliary biopsy, and his ear tubes replaced. He has been hospitalized three times since June. The area where he had the lung abscess has completely healed (thank GOD) and we are doing pulmocort twice daily, nasal steriods, and probiotics galore, oh and albueterol before bed. He has been off of antibiotics for almost three weeks (the longest span of time in the past year). We have so much to be thankful for but a plan and a name for what we are fighting would help my heart understand all of this. The diarreha has comes and goes... one diaper is "normal" then five minutes later a huge yucky one.

Is that common? or would the BM's always be gross if he had CF?

Our pulmonogolist explained that there is so much that they have learned about CF recently that changes the way they view sweat tests results and how CFers present themselves at all ages. I am lost... I want to help my son and I cannot fight a monster that I cannot see.

Robin "junesbug's mommy"

 

[junebugsmommy]

Hello again...

I wrote a post a few months ago... my son Kaden has been through so much. We thought that we had ruled out CF and had moved on the testing for PCD. But SURPRISE... no Primary Ciliary Dyskinesia... and now we are waiting for the results of the CF gene mutation tests. I have a few questions for you all...

1. Are false negatives on sweat tests commmon?
2. How long does it take to get the results of CF gene mutation tests?
3. Does anyone have any advice????

Update on Kaden's health....
Since my last post, Kaden had an adnoidectomy, sinus irrigation, ciliary biopsy, and his ear tubes replaced. He has been hospitalized three times since June. The area where he had the lung abscess has completely healed (thank GOD) and we are doing pulmocort twice daily, nasal steriods, and probiotics galore, oh and albueterol before bed. He has been off of antibiotics for almost three weeks (the longest span of time in the past year). We have so much to be thankful for but a plan and a name for what we are fighting would help my heart understand all of this. The diarreha has comes and goes... one diaper is "normal" then five minutes later a huge yucky one.

Is that common? or would the BM's always be gross if he had CF?

Our pulmonogolist explained that there is so much that they have learned about CF recently that changes the way they view sweat tests results and how CFers present themselves at all ages. I am lost... I want to help my son and I cannot fight a monster that I cannot see.

Robin "junesbug's mommy"

 

[junebugsmommy]

Hello again...

I wrote a post a few months ago... my son Kaden has been through so much. We thought that we had ruled out CF and had moved on the testing for PCD. But SURPRISE... no Primary Ciliary Dyskinesia... and now we are waiting for the results of the CF gene mutation tests. I have a few questions for you all...

1. Are false negatives on sweat tests commmon?
2. How long does it take to get the results of CF gene mutation tests?
3. Does anyone have any advice????

Update on Kaden's health....
Since my last post, Kaden had an adnoidectomy, sinus irrigation, ciliary biopsy, and his ear tubes replaced. He has been hospitalized three times since June. The area where he had the lung abscess has completely healed (thank GOD) and we are doing pulmocort twice daily, nasal steriods, and probiotics galore, oh and albueterol before bed. He has been off of antibiotics for almost three weeks (the longest span of time in the past year). We have so much to be thankful for but a plan and a name for what we are fighting would help my heart understand all of this. The diarreha has comes and goes... one diaper is "normal" then five minutes later a huge yucky one.

Is that common? or would the BM's always be gross if he had CF?

Our pulmonogolist explained that there is so much that they have learned about CF recently that changes the way they view sweat tests results and how CFers present themselves at all ages. I am lost... I want to help my son and I cannot fight a monster that I cannot see.

Robin "junesbug's mommy"

 

[junebugsmommy]

Hello again...
<br />
<br />I wrote a post a few months ago... my son Kaden has been through so much. We thought that we had ruled out CF and had moved on the testing for PCD. But SURPRISE... no Primary Ciliary Dyskinesia... and now we are waiting for the results of the CF gene mutation tests. I have a few questions for you all...
<br />
<br />1. Are false negatives on sweat tests commmon?
<br />2. How long does it take to get the results of CF gene mutation tests?
<br />3. Does anyone have any advice????
<br />
<br />Update on Kaden's health....
<br />Since my last post, Kaden had an adnoidectomy, sinus irrigation, ciliary biopsy, and his ear tubes replaced. He has been hospitalized three times since June. The area where he had the lung abscess has completely healed (thank GOD) and we are doing pulmocort twice daily, nasal steriods, and probiotics galore, oh and albueterol before bed. He has been off of antibiotics for almost three weeks (the longest span of time in the past year). We have so much to be thankful for but a plan and a name for what we are fighting would help my heart understand all of this. The diarreha has comes and goes... one diaper is "normal" then five minutes later a huge yucky one.
<br />
<br />Is that common? or would the BM's always be gross if he had CF?
<br />
<br />Our pulmonogolist explained that there is so much that they have learned about CF recently that changes the way they view sweat tests results and how CFers present themselves at all ages. I am lost... I want to help my son and I cannot fight a monster that I cannot see.
<br />
<br />Robin "junesbug's mommy"

 

[sdavis227]

Hi Robin.

To answer some of your questions, false negatives on sweat tests are quite common. This is why the genetic screening should be done. I think that it took about 2-3 (maybe even 4) weeks before we got the carrier screening back on hubby and me. I can't remember at all how long it was with DS.

I hope that you find out what is going on with your son Kaden soon. Of course I hope that it is not CF, but maybe something milder, but if it is CF, then welcome. There are a lot of people on here with a lot of wisdom on many subjects.

As far as the diapers go, are they greasy or orange? That is how DSs are when he hasn't had enough enzymes.


HTH and praying for you to have an answer soon!

 

[sdavis227]

Hi Robin.

To answer some of your questions, false negatives on sweat tests are quite common. This is why the genetic screening should be done. I think that it took about 2-3 (maybe even 4) weeks before we got the carrier screening back on hubby and me. I can't remember at all how long it was with DS.

I hope that you find out what is going on with your son Kaden soon. Of course I hope that it is not CF, but maybe something milder, but if it is CF, then welcome. There are a lot of people on here with a lot of wisdom on many subjects.

As far as the diapers go, are they greasy or orange? That is how DSs are when he hasn't had enough enzymes.


HTH and praying for you to have an answer soon!

 

[sdavis227]

Hi Robin.

To answer some of your questions, false negatives on sweat tests are quite common. This is why the genetic screening should be done. I think that it took about 2-3 (maybe even 4) weeks before we got the carrier screening back on hubby and me. I can't remember at all how long it was with DS.

I hope that you find out what is going on with your son Kaden soon. Of course I hope that it is not CF, but maybe something milder, but if it is CF, then welcome. There are a lot of people on here with a lot of wisdom on many subjects.

As far as the diapers go, are they greasy or orange? That is how DSs are when he hasn't had enough enzymes.


HTH and praying for you to have an answer soon!

 

[sdavis227]

Hi Robin.

To answer some of your questions, false negatives on sweat tests are quite common. This is why the genetic screening should be done. I think that it took about 2-3 (maybe even 4) weeks before we got the carrier screening back on hubby and me. I can't remember at all how long it was with DS.

I hope that you find out what is going on with your son Kaden soon. Of course I hope that it is not CF, but maybe something milder, but if it is CF, then welcome. There are a lot of people on here with a lot of wisdom on many subjects.

As far as the diapers go, are they greasy or orange? That is how DSs are when he hasn't had enough enzymes.


HTH and praying for you to have an answer soon!

 

[sdavis227]

Hi Robin.
<br />
<br />To answer some of your questions, false negatives on sweat tests are quite common. This is why the genetic screening should be done. I think that it took about 2-3 (maybe even 4) weeks before we got the carrier screening back on hubby and me. I can't remember at all how long it was with DS.
<br />
<br />I hope that you find out what is going on with your son Kaden soon. Of course I hope that it is not CF, but maybe something milder, but if it is CF, then welcome. There are a lot of people on here with a lot of wisdom on many subjects.
<br />
<br />As far as the diapers go, are they greasy or orange? That is how DSs are when he hasn't had enough enzymes.
<br />
<br />
<br />HTH and praying for you to have an answer soon!

 

[Alyssa]

Yes, false negatives are common - or rather, the test is in the normal range, but the person still has CF - that is the case with my kids - read my blog for more details.

Best wishes

 

[Alyssa]

Yes, false negatives are common - or rather, the test is in the normal range, but the person still has CF - that is the case with my kids - read my blog for more details.

Best wishes

 

[Alyssa]

Yes, false negatives are common - or rather, the test is in the normal range, but the person still has CF - that is the case with my kids - read my blog for more details.

Best wishes

 

[Alyssa]

Yes, false negatives are common - or rather, the test is in the normal range, but the person still has CF - that is the case with my kids - read my blog for more details.

Best wishes

 

[Alyssa]

Yes, false negatives are common - or rather, the test is in the normal range, but the person still has CF - that is the case with my kids - read my blog for more details.
<br />
<br />Best wishes

 

[websterhome]

Robin,
Hi! I'm pretty new to the CF world myself, my daughter was diagnosed almost 4 months ago. My husband & I knew we were both carriers, so we had a CF DNA screen done on her at 6 days old. I work as a nurse in the hospital we took her to & talked with the lab about the test. At our hospital, they run them only on Mondays & Thursdays - so we had her blood drawn on a Wednesday & had the results Thursday mid morning. People on here talk a lot about the full panel genetic screen & I honestly don't know anything about that. Please know someone in WA is thinking of you & hoping for the best for your family.
Christy

 

[websterhome]

Robin,
Hi! I'm pretty new to the CF world myself, my daughter was diagnosed almost 4 months ago. My husband & I knew we were both carriers, so we had a CF DNA screen done on her at 6 days old. I work as a nurse in the hospital we took her to & talked with the lab about the test. At our hospital, they run them only on Mondays & Thursdays - so we had her blood drawn on a Wednesday & had the results Thursday mid morning. People on here talk a lot about the full panel genetic screen & I honestly don't know anything about that. Please know someone in WA is thinking of you & hoping for the best for your family.
Christy

 

[websterhome]

Robin,
Hi! I'm pretty new to the CF world myself, my daughter was diagnosed almost 4 months ago. My husband & I knew we were both carriers, so we had a CF DNA screen done on her at 6 days old. I work as a nurse in the hospital we took her to & talked with the lab about the test. At our hospital, they run them only on Mondays & Thursdays - so we had her blood drawn on a Wednesday & had the results Thursday mid morning. People on here talk a lot about the full panel genetic screen & I honestly don't know anything about that. Please know someone in WA is thinking of you & hoping for the best for your family.
Christy

 

[websterhome]

Robin,
Hi! I'm pretty new to the CF world myself, my daughter was diagnosed almost 4 months ago. My husband & I knew we were both carriers, so we had a CF DNA screen done on her at 6 days old. I work as a nurse in the hospital we took her to & talked with the lab about the test. At our hospital, they run them only on Mondays & Thursdays - so we had her blood drawn on a Wednesday & had the results Thursday mid morning. People on here talk a lot about the full panel genetic screen & I honestly don't know anything about that. Please know someone in WA is thinking of you & hoping for the best for your family.
Christy

 

[websterhome]

Robin,
<br />Hi! I'm pretty new to the CF world myself, my daughter was diagnosed almost 4 months ago. My husband & I knew we were both carriers, so we had a CF DNA screen done on her at 6 days old. I work as a nurse in the hospital we took her to & talked with the lab about the test. At our hospital, they run them only on Mondays & Thursdays - so we had her blood drawn on a Wednesday & had the results Thursday mid morning. People on here talk a lot about the full panel genetic screen & I honestly don't know anything about that. Please know someone in WA is thinking of you & hoping for the best for your family.
<br />Christy