Brand New Here - looking for answers

[letefk]

As the others said, there are no answers short of the test, and sometimes even the test does not give clear answers. I remember being in your shoes, and I know the wait is terrible. It was for me. For my girls, it was a long process to a clear diagnosis. We did the sweat test to "rule CF out," and our pediatrician and specialist both said they would be "surprised" if it was CF, but we should double check. The sweat chlorides on one daughter was borderline, and the other was normal... low, even. Yet the borderline result on my older child and the clear pattern of susceptible lungs in both led to genetic testing. Even that was not clear. Both are heterozygous for D-508, which normally means they would be carriers. But they have two other genetic factors (modifiers) that mean they are in a class of kids that have 'non traditional' CF. It was bewildering to say the least.

In the end, Robert is right to say that you have to trust the process at this point, even though the waiting will be awful. If the sweat test is not conclusive and the doctor thinks there is cause, they may ask for the genetic test. In our case, our doctors were remarkably good in their advice; if they had not insisted on the genetic test, my daughters would have lost ground in terms of lung function. If it is CF, then knowing the truth early is the best weapon you have to protect and build the lungs in these early years. I am not happy that my daughters have CF, but I am grateful that we found out before their lung function could start to deteriorate.

Whatever happens, I hope you find answers, and know that we are all willing to answer questions and give support.

 

[letefk]

As the others said, there are no answers short of the test, and sometimes even the test does not give clear answers. I remember being in your shoes, and I know the wait is terrible. It was for me. For my girls, it was a long process to a clear diagnosis. We did the sweat test to "rule CF out," and our pediatrician and specialist both said they would be "surprised" if it was CF, but we should double check. The sweat chlorides on one daughter was borderline, and the other was normal... low, even. Yet the borderline result on my older child and the clear pattern of susceptible lungs in both led to genetic testing. Even that was not clear. Both are heterozygous for D-508, which normally means they would be carriers. But they have two other genetic factors (modifiers) that mean they are in a class of kids that have 'non traditional' CF. It was bewildering to say the least.

In the end, Robert is right to say that you have to trust the process at this point, even though the waiting will be awful. If the sweat test is not conclusive and the doctor thinks there is cause, they may ask for the genetic test. In our case, our doctors were remarkably good in their advice; if they had not insisted on the genetic test, my daughters would have lost ground in terms of lung function. If it is CF, then knowing the truth early is the best weapon you have to protect and build the lungs in these early years. I am not happy that my daughters have CF, but I am grateful that we found out before their lung function could start to deteriorate.

Whatever happens, I hope you find answers, and know that we are all willing to answer questions and give support.

 

[letefk]

As the others said, there are no answers short of the test, and sometimes even the test does not give clear answers. I remember being in your shoes, and I know the wait is terrible. It was for me. For my girls, it was a long process to a clear diagnosis. We did the sweat test to "rule CF out," and our pediatrician and specialist both said they would be "surprised" if it was CF, but we should double check. The sweat chlorides on one daughter was borderline, and the other was normal... low, even. Yet the borderline result on my older child and the clear pattern of susceptible lungs in both led to genetic testing. Even that was not clear. Both are heterozygous for D-508, which normally means they would be carriers. But they have two other genetic factors (modifiers) that mean they are in a class of kids that have 'non traditional' CF. It was bewildering to say the least.

In the end, Robert is right to say that you have to trust the process at this point, even though the waiting will be awful. If the sweat test is not conclusive and the doctor thinks there is cause, they may ask for the genetic test. In our case, our doctors were remarkably good in their advice; if they had not insisted on the genetic test, my daughters would have lost ground in terms of lung function. If it is CF, then knowing the truth early is the best weapon you have to protect and build the lungs in these early years. I am not happy that my daughters have CF, but I am grateful that we found out before their lung function could start to deteriorate.

Whatever happens, I hope you find answers, and know that we are all willing to answer questions and give support.

 

[letefk]

As the others said, there are no answers short of the test, and sometimes even the test does not give clear answers. I remember being in your shoes, and I know the wait is terrible. It was for me. For my girls, it was a long process to a clear diagnosis. We did the sweat test to "rule CF out," and our pediatrician and specialist both said they would be "surprised" if it was CF, but we should double check. The sweat chlorides on one daughter was borderline, and the other was normal... low, even. Yet the borderline result on my older child and the clear pattern of susceptible lungs in both led to genetic testing. Even that was not clear. Both are heterozygous for D-508, which normally means they would be carriers. But they have two other genetic factors (modifiers) that mean they are in a class of kids that have 'non traditional' CF. It was bewildering to say the least.

In the end, Robert is right to say that you have to trust the process at this point, even though the waiting will be awful. If the sweat test is not conclusive and the doctor thinks there is cause, they may ask for the genetic test. In our case, our doctors were remarkably good in their advice; if they had not insisted on the genetic test, my daughters would have lost ground in terms of lung function. If it is CF, then knowing the truth early is the best weapon you have to protect and build the lungs in these early years. I am not happy that my daughters have CF, but I am grateful that we found out before their lung function could start to deteriorate.

Whatever happens, I hope you find answers, and know that we are all willing to answer questions and give support.

 

[letefk]

As the others said, there are no answers short of the test, and sometimes even the test does not give clear answers. I remember being in your shoes, and I know the wait is terrible. It was for me. For my girls, it was a long process to a clear diagnosis. We did the sweat test to "rule CF out," and our pediatrician and specialist both said they would be "surprised" if it was CF, but we should double check. The sweat chlorides on one daughter was borderline, and the other was normal... low, even. Yet the borderline result on my older child and the clear pattern of susceptible lungs in both led to genetic testing. Even that was not clear. Both are heterozygous for D-508, which normally means they would be carriers. But they have two other genetic factors (modifiers) that mean they are in a class of kids that have 'non traditional' CF. It was bewildering to say the least.
<br />
<br />In the end, Robert is right to say that you have to trust the process at this point, even though the waiting will be awful. If the sweat test is not conclusive and the doctor thinks there is cause, they may ask for the genetic test. In our case, our doctors were remarkably good in their advice; if they had not insisted on the genetic test, my daughters would have lost ground in terms of lung function. If it is CF, then knowing the truth early is the best weapon you have to protect and build the lungs in these early years. I am not happy that my daughters have CF, but I am grateful that we found out before their lung function could start to deteriorate.
<br />
<br />Whatever happens, I hope you find answers, and know that we are all willing to answer questions and give support.

 

[Buckeye]

So sorry that your baby has to have the sweat testing done, it must be a very scary time for you. I would wonder if they could possibly move the sweat test up for you. Maybe get on a wait list for cancellations so that you don't have to wait two weeks for the test. I really don't know why the doctors pull out the "cf bomb" and then make parents wait weeks for the test - seems inhumane to me. The good news is that you normally have the results of the sweat test in as little as a few hours, at most 24 hours.

 

[Buckeye]

So sorry that your baby has to have the sweat testing done, it must be a very scary time for you. I would wonder if they could possibly move the sweat test up for you. Maybe get on a wait list for cancellations so that you don't have to wait two weeks for the test. I really don't know why the doctors pull out the "cf bomb" and then make parents wait weeks for the test - seems inhumane to me. The good news is that you normally have the results of the sweat test in as little as a few hours, at most 24 hours.

 

[Buckeye]

So sorry that your baby has to have the sweat testing done, it must be a very scary time for you. I would wonder if they could possibly move the sweat test up for you. Maybe get on a wait list for cancellations so that you don't have to wait two weeks for the test. I really don't know why the doctors pull out the "cf bomb" and then make parents wait weeks for the test - seems inhumane to me. The good news is that you normally have the results of the sweat test in as little as a few hours, at most 24 hours.

 

[Buckeye]

So sorry that your baby has to have the sweat testing done, it must be a very scary time for you. I would wonder if they could possibly move the sweat test up for you. Maybe get on a wait list for cancellations so that you don't have to wait two weeks for the test. I really don't know why the doctors pull out the "cf bomb" and then make parents wait weeks for the test - seems inhumane to me. The good news is that you normally have the results of the sweat test in as little as a few hours, at most 24 hours.

 

[Buckeye]

So sorry that your baby has to have the sweat testing done, it must be a very scary time for you. I would wonder if they could possibly move the sweat test up for you. Maybe get on a wait list for cancellations so that you don't have to wait two weeks for the test. I really don't know why the doctors pull out the "cf bomb" and then make parents wait weeks for the test - seems inhumane to me. The good news is that you normally have the results of the sweat test in as little as a few hours, at most 24 hours.

 

[Transplantmommy]

Sorry that you are going through this. It would be hard on anyone. I had many of the symptoms when I was born (salty skin, Meconium Ileus, and about a month later, slight breathing problems). I had my sweat test when I was 3 months old and it was negative. There was no family history of CF in the family and in 1981, genetic testing for CF wasn't all that common. I continued to have symptoms and had another sweat test when I was 6 months old and it was positive. When I was tested positive, there is a distant relative who was then tested (at the age of 12) because he had so many of the symptoms throughout his life and no one diagnosed it, and he was diagnosed with CF.

I am with the others, even if the sweat test is negative or borderline, I wouldn't rule it out yet. I would have the child go through genetic testing. If you don't want to put the child through that just yet, have you and the father get tested to see if you carry any of the CF genes. That should give you more of an answer too.

 

[Transplantmommy]

Sorry that you are going through this. It would be hard on anyone. I had many of the symptoms when I was born (salty skin, Meconium Ileus, and about a month later, slight breathing problems). I had my sweat test when I was 3 months old and it was negative. There was no family history of CF in the family and in 1981, genetic testing for CF wasn't all that common. I continued to have symptoms and had another sweat test when I was 6 months old and it was positive. When I was tested positive, there is a distant relative who was then tested (at the age of 12) because he had so many of the symptoms throughout his life and no one diagnosed it, and he was diagnosed with CF.

I am with the others, even if the sweat test is negative or borderline, I wouldn't rule it out yet. I would have the child go through genetic testing. If you don't want to put the child through that just yet, have you and the father get tested to see if you carry any of the CF genes. That should give you more of an answer too.

 

[Transplantmommy]

Sorry that you are going through this. It would be hard on anyone. I had many of the symptoms when I was born (salty skin, Meconium Ileus, and about a month later, slight breathing problems). I had my sweat test when I was 3 months old and it was negative. There was no family history of CF in the family and in 1981, genetic testing for CF wasn't all that common. I continued to have symptoms and had another sweat test when I was 6 months old and it was positive. When I was tested positive, there is a distant relative who was then tested (at the age of 12) because he had so many of the symptoms throughout his life and no one diagnosed it, and he was diagnosed with CF.

I am with the others, even if the sweat test is negative or borderline, I wouldn't rule it out yet. I would have the child go through genetic testing. If you don't want to put the child through that just yet, have you and the father get tested to see if you carry any of the CF genes. That should give you more of an answer too.

 

[Transplantmommy]

Sorry that you are going through this. It would be hard on anyone. I had many of the symptoms when I was born (salty skin, Meconium Ileus, and about a month later, slight breathing problems). I had my sweat test when I was 3 months old and it was negative. There was no family history of CF in the family and in 1981, genetic testing for CF wasn't all that common. I continued to have symptoms and had another sweat test when I was 6 months old and it was positive. When I was tested positive, there is a distant relative who was then tested (at the age of 12) because he had so many of the symptoms throughout his life and no one diagnosed it, and he was diagnosed with CF.

I am with the others, even if the sweat test is negative or borderline, I wouldn't rule it out yet. I would have the child go through genetic testing. If you don't want to put the child through that just yet, have you and the father get tested to see if you carry any of the CF genes. That should give you more of an answer too.

 

[Transplantmommy]

Sorry that you are going through this. It would be hard on anyone. I had many of the symptoms when I was born (salty skin, Meconium Ileus, and about a month later, slight breathing problems). I had my sweat test when I was 3 months old and it was negative. There was no family history of CF in the family and in 1981, genetic testing for CF wasn't all that common. I continued to have symptoms and had another sweat test when I was 6 months old and it was positive. When I was tested positive, there is a distant relative who was then tested (at the age of 12) because he had so many of the symptoms throughout his life and no one diagnosed it, and he was diagnosed with CF.
<br />
<br />I am with the others, even if the sweat test is negative or borderline, I wouldn't rule it out yet. I would have the child go through genetic testing. If you don't want to put the child through that just yet, have you and the father get tested to see if you carry any of the CF genes. That should give you more of an answer too.

 

[hallkimd]

Thanks for the answers. They really do help. I just don't want to walk into it thinking this is impossible and have the test come back yes. That I think would be the worst. The test in 2 weeks, but the last dr visit was 2 weeks ago. We are waiting a month for this. I have been looking all over the web and everything keeps talking about the respitory issues which we have none of. Jakey seemed to be perfectly normal until about 10 months old. His weight wasn't even on the average chart it was 1/2 inch below it. We did some pooh smears then to determine there was blood in his stool. We came back a month later after taking him off of dairy to find there was still blood in his stool. Then we went for our fist GI visit where they did blood test for the chrone's and celliac - we went back a month later and found out that all the test were normal or negative, but he had not gained any wait in the month only 18lbs 08oz. Doc put Jakey on an apetite enhancer -- seems to be working - he is eating more then he used to. I took him for a weight check last week says he weighs 19.8 now, but that was at the pediatrician not the GI and he drank a bottle on the way there, so I don't know how accurate it was, but did gain weight after being on the meds for 2 weeks. Just waiting on the next visit. They say we should have the results by the end of the day. So, sweat test in the a.m. and dr visit late afternoon. All day at the hospital, how fun! Atleast the zoo is near and we can go there for a little while. His symptoms as it is now is diareahea - it has cleared up a little in the past two weeks, but his pooh has always been a mystery from day to day. He's only gained 3 lbs since Januray, the blood in his stool and the loss of appetite.

These things need a spell check - sorry for any English teacher reading this.

Thanks for all the replies - it really does help.

Kim

 

[hallkimd]

Thanks for the answers. They really do help. I just don't want to walk into it thinking this is impossible and have the test come back yes. That I think would be the worst. The test in 2 weeks, but the last dr visit was 2 weeks ago. We are waiting a month for this. I have been looking all over the web and everything keeps talking about the respitory issues which we have none of. Jakey seemed to be perfectly normal until about 10 months old. His weight wasn't even on the average chart it was 1/2 inch below it. We did some pooh smears then to determine there was blood in his stool. We came back a month later after taking him off of dairy to find there was still blood in his stool. Then we went for our fist GI visit where they did blood test for the chrone's and celliac - we went back a month later and found out that all the test were normal or negative, but he had not gained any wait in the month only 18lbs 08oz. Doc put Jakey on an apetite enhancer -- seems to be working - he is eating more then he used to. I took him for a weight check last week says he weighs 19.8 now, but that was at the pediatrician not the GI and he drank a bottle on the way there, so I don't know how accurate it was, but did gain weight after being on the meds for 2 weeks. Just waiting on the next visit. They say we should have the results by the end of the day. So, sweat test in the a.m. and dr visit late afternoon. All day at the hospital, how fun! Atleast the zoo is near and we can go there for a little while. His symptoms as it is now is diareahea - it has cleared up a little in the past two weeks, but his pooh has always been a mystery from day to day. He's only gained 3 lbs since Januray, the blood in his stool and the loss of appetite.

These things need a spell check - sorry for any English teacher reading this.

Thanks for all the replies - it really does help.

Kim

 

[hallkimd]

Thanks for the answers. They really do help. I just don't want to walk into it thinking this is impossible and have the test come back yes. That I think would be the worst. The test in 2 weeks, but the last dr visit was 2 weeks ago. We are waiting a month for this. I have been looking all over the web and everything keeps talking about the respitory issues which we have none of. Jakey seemed to be perfectly normal until about 10 months old. His weight wasn't even on the average chart it was 1/2 inch below it. We did some pooh smears then to determine there was blood in his stool. We came back a month later after taking him off of dairy to find there was still blood in his stool. Then we went for our fist GI visit where they did blood test for the chrone's and celliac - we went back a month later and found out that all the test were normal or negative, but he had not gained any wait in the month only 18lbs 08oz. Doc put Jakey on an apetite enhancer -- seems to be working - he is eating more then he used to. I took him for a weight check last week says he weighs 19.8 now, but that was at the pediatrician not the GI and he drank a bottle on the way there, so I don't know how accurate it was, but did gain weight after being on the meds for 2 weeks. Just waiting on the next visit. They say we should have the results by the end of the day. So, sweat test in the a.m. and dr visit late afternoon. All day at the hospital, how fun! Atleast the zoo is near and we can go there for a little while. His symptoms as it is now is diareahea - it has cleared up a little in the past two weeks, but his pooh has always been a mystery from day to day. He's only gained 3 lbs since Januray, the blood in his stool and the loss of appetite.

These things need a spell check - sorry for any English teacher reading this.

Thanks for all the replies - it really does help.

Kim

 

[hallkimd]

Thanks for the answers. They really do help. I just don't want to walk into it thinking this is impossible and have the test come back yes. That I think would be the worst. The test in 2 weeks, but the last dr visit was 2 weeks ago. We are waiting a month for this. I have been looking all over the web and everything keeps talking about the respitory issues which we have none of. Jakey seemed to be perfectly normal until about 10 months old. His weight wasn't even on the average chart it was 1/2 inch below it. We did some pooh smears then to determine there was blood in his stool. We came back a month later after taking him off of dairy to find there was still blood in his stool. Then we went for our fist GI visit where they did blood test for the chrone's and celliac - we went back a month later and found out that all the test were normal or negative, but he had not gained any wait in the month only 18lbs 08oz. Doc put Jakey on an apetite enhancer -- seems to be working - he is eating more then he used to. I took him for a weight check last week says he weighs 19.8 now, but that was at the pediatrician not the GI and he drank a bottle on the way there, so I don't know how accurate it was, but did gain weight after being on the meds for 2 weeks. Just waiting on the next visit. They say we should have the results by the end of the day. So, sweat test in the a.m. and dr visit late afternoon. All day at the hospital, how fun! Atleast the zoo is near and we can go there for a little while. His symptoms as it is now is diareahea - it has cleared up a little in the past two weeks, but his pooh has always been a mystery from day to day. He's only gained 3 lbs since Januray, the blood in his stool and the loss of appetite.

These things need a spell check - sorry for any English teacher reading this.

Thanks for all the replies - it really does help.

Kim

 

[hallkimd]

Thanks for the answers. They really do help. I just don't want to walk into it thinking this is impossible and have the test come back yes. That I think would be the worst. The test in 2 weeks, but the last dr visit was 2 weeks ago. We are waiting a month for this. I have been looking all over the web and everything keeps talking about the respitory issues which we have none of. Jakey seemed to be perfectly normal until about 10 months old. His weight wasn't even on the average chart it was 1/2 inch below it. We did some pooh smears then to determine there was blood in his stool. We came back a month later after taking him off of dairy to find there was still blood in his stool. Then we went for our fist GI visit where they did blood test for the chrone's and celliac - we went back a month later and found out that all the test were normal or negative, but he had not gained any wait in the month only 18lbs 08oz. Doc put Jakey on an apetite enhancer -- seems to be working - he is eating more then he used to. I took him for a weight check last week says he weighs 19.8 now, but that was at the pediatrician not the GI and he drank a bottle on the way there, so I don't know how accurate it was, but did gain weight after being on the meds for 2 weeks. Just waiting on the next visit. They say we should have the results by the end of the day. So, sweat test in the a.m. and dr visit late afternoon. All day at the hospital, how fun! Atleast the zoo is near and we can go there for a little while. His symptoms as it is now is diareahea - it has cleared up a little in the past two weeks, but his pooh has always been a mystery from day to day. He's only gained 3 lbs since Januray, the blood in his stool and the loss of appetite.
<br />
<br />These things need a spell check - sorry for any English teacher reading this.
<br />
<br />Thanks for all the replies - it really does help.
<br />
<br />Kim