CF or Not ???

M

Monty13

New member
Hi Everybody,

I'm a father from Cape Town, South Africa & require advice concerning my son that was diagnosed with CF...

On the 22nd December 2009 my son (born 10 Aug 2009) was rushed to hospital due to dehydration & his sodium level was very low. After 3 days in hospital under a drip, he recovered & was discharged from hospital on Xmas eve. On the 6th of January 2010 we took my son to hospital again assuming there was something wrong because his eyes looked weak & he refused to drink but was eating his first foods. The doctor said he was fine & sent us home.

Two days later 8th January we decided to take him for a second opinion to a very experienced paediatrician which also said he was fine but suggested my son come back the following day for a blood test. A few hours after the blood test, we received a call from the doctor stating we should take my son to hospital as he's becomming dehydrated again.

While in hospital, he was put on a drip again. His blood, urine & poo was tested but the doctors couldn't find anything wrong. They were also trying to determine how he's sodium level keep droping as it was not in his urine & he never had Diarrhea.

After loads of needles being stuck in my little baby for testing, they decided to do a sweat test. We received the results & I was told that he excretes more salt (about 80) than he should so therefore my son have Cystic Fibrosis even though the genetics test results hasn't come back yet.


A few Questions:

1. Can CF be confirmed on only a sweat test?

2. Is it right to have salty skin as the only symptom?

3. Will my son excrete more salt if he's drinking 2mls sodium chloride every 8 hours, his sweat test took place while he was drinking it?

4. Should I start giving him the medication although I do not see the symptoms?

5. Could he be diagnosed wrong?

6. What further steps can I take?


My son's chest is clear, his stools is normal, he's bigger than most babies his age & he have a good appetite......Please Help!!!
 
M

Monty13

New member
Hi Everybody,

I'm a father from Cape Town, South Africa & require advice concerning my son that was diagnosed with CF...

On the 22nd December 2009 my son (born 10 Aug 2009) was rushed to hospital due to dehydration & his sodium level was very low. After 3 days in hospital under a drip, he recovered & was discharged from hospital on Xmas eve. On the 6th of January 2010 we took my son to hospital again assuming there was something wrong because his eyes looked weak & he refused to drink but was eating his first foods. The doctor said he was fine & sent us home.

Two days later 8th January we decided to take him for a second opinion to a very experienced paediatrician which also said he was fine but suggested my son come back the following day for a blood test. A few hours after the blood test, we received a call from the doctor stating we should take my son to hospital as he's becomming dehydrated again.

While in hospital, he was put on a drip again. His blood, urine & poo was tested but the doctors couldn't find anything wrong. They were also trying to determine how he's sodium level keep droping as it was not in his urine & he never had Diarrhea.

After loads of needles being stuck in my little baby for testing, they decided to do a sweat test. We received the results & I was told that he excretes more salt (about 80) than he should so therefore my son have Cystic Fibrosis even though the genetics test results hasn't come back yet.


A few Questions:

1. Can CF be confirmed on only a sweat test?

2. Is it right to have salty skin as the only symptom?

3. Will my son excrete more salt if he's drinking 2mls sodium chloride every 8 hours, his sweat test took place while he was drinking it?

4. Should I start giving him the medication although I do not see the symptoms?

5. Could he be diagnosed wrong?

6. What further steps can I take?


My son's chest is clear, his stools is normal, he's bigger than most babies his age & he have a good appetite......Please Help!!!
 
M

Monty13

New member
Hi Everybody,

I'm a father from Cape Town, South Africa & require advice concerning my son that was diagnosed with CF...

On the 22nd December 2009 my son (born 10 Aug 2009) was rushed to hospital due to dehydration & his sodium level was very low. After 3 days in hospital under a drip, he recovered & was discharged from hospital on Xmas eve. On the 6th of January 2010 we took my son to hospital again assuming there was something wrong because his eyes looked weak & he refused to drink but was eating his first foods. The doctor said he was fine & sent us home.

Two days later 8th January we decided to take him for a second opinion to a very experienced paediatrician which also said he was fine but suggested my son come back the following day for a blood test. A few hours after the blood test, we received a call from the doctor stating we should take my son to hospital as he's becomming dehydrated again.

While in hospital, he was put on a drip again. His blood, urine & poo was tested but the doctors couldn't find anything wrong. They were also trying to determine how he's sodium level keep droping as it was not in his urine & he never had Diarrhea.

After loads of needles being stuck in my little baby for testing, they decided to do a sweat test. We received the results & I was told that he excretes more salt (about 80) than he should so therefore my son have Cystic Fibrosis even though the genetics test results hasn't come back yet.


A few Questions:

1. Can CF be confirmed on only a sweat test?

2. Is it right to have salty skin as the only symptom?

3. Will my son excrete more salt if he's drinking 2mls sodium chloride every 8 hours, his sweat test took place while he was drinking it?

4. Should I start giving him the medication although I do not see the symptoms?

5. Could he be diagnosed wrong?

6. What further steps can I take?


My son's chest is clear, his stools is normal, he's bigger than most babies his age & he have a good appetite......Please Help!!!
 
M

Monty13

New member
Hi Everybody,

I'm a father from Cape Town, South Africa & require advice concerning my son that was diagnosed with CF...

On the 22nd December 2009 my son (born 10 Aug 2009) was rushed to hospital due to dehydration & his sodium level was very low. After 3 days in hospital under a drip, he recovered & was discharged from hospital on Xmas eve. On the 6th of January 2010 we took my son to hospital again assuming there was something wrong because his eyes looked weak & he refused to drink but was eating his first foods. The doctor said he was fine & sent us home.

Two days later 8th January we decided to take him for a second opinion to a very experienced paediatrician which also said he was fine but suggested my son come back the following day for a blood test. A few hours after the blood test, we received a call from the doctor stating we should take my son to hospital as he's becomming dehydrated again.

While in hospital, he was put on a drip again. His blood, urine & poo was tested but the doctors couldn't find anything wrong. They were also trying to determine how he's sodium level keep droping as it was not in his urine & he never had Diarrhea.

After loads of needles being stuck in my little baby for testing, they decided to do a sweat test. We received the results & I was told that he excretes more salt (about 80) than he should so therefore my son have Cystic Fibrosis even though the genetics test results hasn't come back yet.


A few Questions:

1. Can CF be confirmed on only a sweat test?

2. Is it right to have salty skin as the only symptom?

3. Will my son excrete more salt if he's drinking 2mls sodium chloride every 8 hours, his sweat test took place while he was drinking it?

4. Should I start giving him the medication although I do not see the symptoms?

5. Could he be diagnosed wrong?

6. What further steps can I take?


My son's chest is clear, his stools is normal, he's bigger than most babies his age & he have a good appetite......Please Help!!!
 
M

Monty13

New member
Hi Everybody,
<br />
<br />I'm a father from Cape Town, South Africa & require advice concerning my son that was diagnosed with CF...
<br />
<br />On the 22nd December 2009 my son (born 10 Aug 2009) was rushed to hospital due to dehydration & his sodium level was very low. After 3 days in hospital under a drip, he recovered & was discharged from hospital on Xmas eve. On the 6th of January 2010 we took my son to hospital again assuming there was something wrong because his eyes looked weak & he refused to drink but was eating his first foods. The doctor said he was fine & sent us home.
<br />
<br />Two days later 8th January we decided to take him for a second opinion to a very experienced paediatrician which also said he was fine but suggested my son come back the following day for a blood test. A few hours after the blood test, we received a call from the doctor stating we should take my son to hospital as he's becomming dehydrated again.
<br />
<br />While in hospital, he was put on a drip again. His blood, urine & poo was tested but the doctors couldn't find anything wrong. They were also trying to determine how he's sodium level keep droping as it was not in his urine & he never had Diarrhea.
<br />
<br />After loads of needles being stuck in my little baby for testing, they decided to do a sweat test. We received the results & I was told that he excretes more salt (about 80) than he should so therefore my son have Cystic Fibrosis even though the genetics test results hasn't come back yet.
<br />
<br />
<br />A few Questions:
<br />
<br />1. Can CF be confirmed on only a sweat test?
<br />
<br />2. Is it right to have salty skin as the only symptom?
<br />
<br />3. Will my son excrete more salt if he's drinking 2mls sodium chloride every 8 hours, his sweat test took place while he was drinking it?
<br />
<br />4. Should I start giving him the medication although I do not see the symptoms?
<br />
<br />5. Could he be diagnosed wrong?
<br />
<br />6. What further steps can I take?
<br />
<br />
<br />My son's chest is clear, his stools is normal, he's bigger than most babies his age & he have a good appetite......Please Help!!!
 
H

hmw

New member
Yes, for many years (before the advent of genetic testing) the sweat test was the 'gold standard' for diagnosing cystic fibrosis, and it's still a very valuable test. And not all people with cf exhibit digestive or respiratory problems when they are as young as your baby is (many not for years to come.)

Your son's sweat test result was well into the 'positive' range for results (40-60 is borderline and over 60 is positive for cf.) I do not know how being on a saline solution at the time of the test would affect results.

However, those with cf themselves are also at risk for the low sodium levels your baby has been experiencing due to how much salt they lose in their sweat (babies with cf often need salt supplementation and in general a diet higher in sodium is often needed due to this); so I am not surprised that they tested for him (and I am glad they did so.)

I am glad he had genetic testing- do you know which test he had? I hope this helps clear things up further. In many cases, a positive sweat test is followed up with a second one. If this is done, I'd think if it can be done when he's not on the saline solution that would help make certain of his dx. In the vast majority of cases, a repeated positive sweat test would be considered diagnostic for cf.

What more can you do: I think the single most important thing you can do is try to find the best care possible for your son; which would mean drs specializing in the care of those with CF if at all possible.

I'm so glad that thus far your son has been healthy as far as his respiratory health & growth is concerned- I hope that this continues and you get the help and answers you need with his other issues as soon as possible.
 
H

hmw

New member
Yes, for many years (before the advent of genetic testing) the sweat test was the 'gold standard' for diagnosing cystic fibrosis, and it's still a very valuable test. And not all people with cf exhibit digestive or respiratory problems when they are as young as your baby is (many not for years to come.)

Your son's sweat test result was well into the 'positive' range for results (40-60 is borderline and over 60 is positive for cf.) I do not know how being on a saline solution at the time of the test would affect results.

However, those with cf themselves are also at risk for the low sodium levels your baby has been experiencing due to how much salt they lose in their sweat (babies with cf often need salt supplementation and in general a diet higher in sodium is often needed due to this); so I am not surprised that they tested for him (and I am glad they did so.)

I am glad he had genetic testing- do you know which test he had? I hope this helps clear things up further. In many cases, a positive sweat test is followed up with a second one. If this is done, I'd think if it can be done when he's not on the saline solution that would help make certain of his dx. In the vast majority of cases, a repeated positive sweat test would be considered diagnostic for cf.

What more can you do: I think the single most important thing you can do is try to find the best care possible for your son; which would mean drs specializing in the care of those with CF if at all possible.

I'm so glad that thus far your son has been healthy as far as his respiratory health & growth is concerned- I hope that this continues and you get the help and answers you need with his other issues as soon as possible.
 
H

hmw

New member
Yes, for many years (before the advent of genetic testing) the sweat test was the 'gold standard' for diagnosing cystic fibrosis, and it's still a very valuable test. And not all people with cf exhibit digestive or respiratory problems when they are as young as your baby is (many not for years to come.)

Your son's sweat test result was well into the 'positive' range for results (40-60 is borderline and over 60 is positive for cf.) I do not know how being on a saline solution at the time of the test would affect results.

However, those with cf themselves are also at risk for the low sodium levels your baby has been experiencing due to how much salt they lose in their sweat (babies with cf often need salt supplementation and in general a diet higher in sodium is often needed due to this); so I am not surprised that they tested for him (and I am glad they did so.)

I am glad he had genetic testing- do you know which test he had? I hope this helps clear things up further. In many cases, a positive sweat test is followed up with a second one. If this is done, I'd think if it can be done when he's not on the saline solution that would help make certain of his dx. In the vast majority of cases, a repeated positive sweat test would be considered diagnostic for cf.

What more can you do: I think the single most important thing you can do is try to find the best care possible for your son; which would mean drs specializing in the care of those with CF if at all possible.

I'm so glad that thus far your son has been healthy as far as his respiratory health & growth is concerned- I hope that this continues and you get the help and answers you need with his other issues as soon as possible.
 
H

hmw

New member
Yes, for many years (before the advent of genetic testing) the sweat test was the 'gold standard' for diagnosing cystic fibrosis, and it's still a very valuable test. And not all people with cf exhibit digestive or respiratory problems when they are as young as your baby is (many not for years to come.)

Your son's sweat test result was well into the 'positive' range for results (40-60 is borderline and over 60 is positive for cf.) I do not know how being on a saline solution at the time of the test would affect results.

However, those with cf themselves are also at risk for the low sodium levels your baby has been experiencing due to how much salt they lose in their sweat (babies with cf often need salt supplementation and in general a diet higher in sodium is often needed due to this); so I am not surprised that they tested for him (and I am glad they did so.)

I am glad he had genetic testing- do you know which test he had? I hope this helps clear things up further. In many cases, a positive sweat test is followed up with a second one. If this is done, I'd think if it can be done when he's not on the saline solution that would help make certain of his dx. In the vast majority of cases, a repeated positive sweat test would be considered diagnostic for cf.

What more can you do: I think the single most important thing you can do is try to find the best care possible for your son; which would mean drs specializing in the care of those with CF if at all possible.

I'm so glad that thus far your son has been healthy as far as his respiratory health & growth is concerned- I hope that this continues and you get the help and answers you need with his other issues as soon as possible.
 
H

hmw

New member
Yes, for many years (before the advent of genetic testing) the sweat test was the 'gold standard' for diagnosing cystic fibrosis, and it's still a very valuable test. And not all people with cf exhibit digestive or respiratory problems when they are as young as your baby is (many not for years to come.)
<br />
<br />Your son's sweat test result was well into the 'positive' range for results (40-60 is borderline and over 60 is positive for cf.) I do not know how being on a saline solution at the time of the test would affect results.
<br />
<br />However, those with cf themselves are also at risk for the low sodium levels your baby has been experiencing due to how much salt they lose in their sweat (babies with cf often need salt supplementation and in general a diet higher in sodium is often needed due to this); so I am not surprised that they tested for him (and I am glad they did so.)
<br />
<br />I am glad he had genetic testing- do you know which test he had? I hope this helps clear things up further. In many cases, a positive sweat test is followed up with a second one. If this is done, I'd think if it can be done when he's not on the saline solution that would help make certain of his dx. In the vast majority of cases, a repeated positive sweat test would be considered diagnostic for cf.
<br />
<br />What more can you do: I think the single most important thing you can do is try to find the best care possible for your son; which would mean drs specializing in the care of those with CF if at all possible.
<br />
<br />I'm so glad that thus far your son has been healthy as far as his respiratory health & growth is concerned- I hope that this continues and you get the help and answers you need with his other issues as soon as possible.
 
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