Questions from worried mum

peanut

New member
Hello, my son is 4, and has had chest problems all his life.
After he was born he had severe jaundice, this did not completley go until he was 4 months old, but doctors were not concerned. He had light treatment which helped.
When he was about 3 months old he started with wheezing illness, was admitted to hospital at 5 months, it was diagnosed as asthma. He had several chest infections, at 16 months he developed double pneumonia and was very sick for 2 weeks in hospital, then he has had numerous hospital admissions for asthma, (about 10) which they are never sure if it is asthma or pnuemonia, they treat him for both, antibiotics and steroids.
He has also been admitted to hospital with kawazaki disease and chicken pox. He has had diarreah on and off, the last bout started in november with blood in it and still has not cleared up, the doctors say it is allergy. They tested his stools, it was not an infection.
Anyway, I am so concerned that he is sick all the time and ask the doctor to test for CF he said he was negative for the newborn screening so unlikely but will test for immunoligcal disorders, we went for the bloods today and the doctor ( a different one) said they are doing a gene test for Cf and should have the results in 2 weeks.
I feel so worried about all these tests and am wondering if newborn screening is often negative, I thought it was a very reliable test.
Does this sound like asthma?
 

peanut

New member
Hello, my son is 4, and has had chest problems all his life.
After he was born he had severe jaundice, this did not completley go until he was 4 months old, but doctors were not concerned. He had light treatment which helped.
When he was about 3 months old he started with wheezing illness, was admitted to hospital at 5 months, it was diagnosed as asthma. He had several chest infections, at 16 months he developed double pneumonia and was very sick for 2 weeks in hospital, then he has had numerous hospital admissions for asthma, (about 10) which they are never sure if it is asthma or pnuemonia, they treat him for both, antibiotics and steroids.
He has also been admitted to hospital with kawazaki disease and chicken pox. He has had diarreah on and off, the last bout started in november with blood in it and still has not cleared up, the doctors say it is allergy. They tested his stools, it was not an infection.
Anyway, I am so concerned that he is sick all the time and ask the doctor to test for CF he said he was negative for the newborn screening so unlikely but will test for immunoligcal disorders, we went for the bloods today and the doctor ( a different one) said they are doing a gene test for Cf and should have the results in 2 weeks.
I feel so worried about all these tests and am wondering if newborn screening is often negative, I thought it was a very reliable test.
Does this sound like asthma?
 

peanut

New member
Hello, my son is 4, and has had chest problems all his life.
After he was born he had severe jaundice, this did not completley go until he was 4 months old, but doctors were not concerned. He had light treatment which helped.
When he was about 3 months old he started with wheezing illness, was admitted to hospital at 5 months, it was diagnosed as asthma. He had several chest infections, at 16 months he developed double pneumonia and was very sick for 2 weeks in hospital, then he has had numerous hospital admissions for asthma, (about 10) which they are never sure if it is asthma or pnuemonia, they treat him for both, antibiotics and steroids.
He has also been admitted to hospital with kawazaki disease and chicken pox. He has had diarreah on and off, the last bout started in november with blood in it and still has not cleared up, the doctors say it is allergy. They tested his stools, it was not an infection.
Anyway, I am so concerned that he is sick all the time and ask the doctor to test for CF he said he was negative for the newborn screening so unlikely but will test for immunoligcal disorders, we went for the bloods today and the doctor ( a different one) said they are doing a gene test for Cf and should have the results in 2 weeks.
I feel so worried about all these tests and am wondering if newborn screening is often negative, I thought it was a very reliable test.
Does this sound like asthma?
 

DietRootBeer

New member
Hi Peanut,

Welcome to this site! It COULD be CF or it could be many other things...Try to keep calm and hope for the best that it is not CF but IF it turns out to be then feel free to come back and ask all the questions you want. A genetic test cannot always find CF...not ALL mutations can be found...a sweat test would be best. Ask your Dr. for a sweat test immediately...it is simple, non-evasive, and the results are usually in within 24hrs.

Many people have been in your shoes and it is VERY difficult. It is great that they are doing a genetic test but that is NOT conclusive....get a sweat test as well.

I will pray for your family, please keep us posted.
 

DietRootBeer

New member
Hi Peanut,

Welcome to this site! It COULD be CF or it could be many other things...Try to keep calm and hope for the best that it is not CF but IF it turns out to be then feel free to come back and ask all the questions you want. A genetic test cannot always find CF...not ALL mutations can be found...a sweat test would be best. Ask your Dr. for a sweat test immediately...it is simple, non-evasive, and the results are usually in within 24hrs.

Many people have been in your shoes and it is VERY difficult. It is great that they are doing a genetic test but that is NOT conclusive....get a sweat test as well.

I will pray for your family, please keep us posted.
 

DietRootBeer

New member
Hi Peanut,

Welcome to this site! It COULD be CF or it could be many other things...Try to keep calm and hope for the best that it is not CF but IF it turns out to be then feel free to come back and ask all the questions you want. A genetic test cannot always find CF...not ALL mutations can be found...a sweat test would be best. Ask your Dr. for a sweat test immediately...it is simple, non-evasive, and the results are usually in within 24hrs.

Many people have been in your shoes and it is VERY difficult. It is great that they are doing a genetic test but that is NOT conclusive....get a sweat test as well.

I will pray for your family, please keep us posted.
 

Alyssa

New member
It's best to get FULL genetic testing and a sweat test just for good measure. Both can be inconclusive in some cases, but in most cases you will get a good answer if you get the full genetic testing (test for over 1500 mutations)

If you have time, please read my full story about my kids and our experience with misdiagnosis of asthma for years because of a "normal" sweat test number.
 

Alyssa

New member
It's best to get FULL genetic testing and a sweat test just for good measure. Both can be inconclusive in some cases, but in most cases you will get a good answer if you get the full genetic testing (test for over 1500 mutations)

If you have time, please read my full story about my kids and our experience with misdiagnosis of asthma for years because of a "normal" sweat test number.
 

Alyssa

New member
It's best to get FULL genetic testing and a sweat test just for good measure. Both can be inconclusive in some cases, but in most cases you will get a good answer if you get the full genetic testing (test for over 1500 mutations)

If you have time, please read my full story about my kids and our experience with misdiagnosis of asthma for years because of a "normal" sweat test number.
 

dyza

New member
With newborn screening what they are testing for is a 'chemical' that shows that the pancreas is not working properly, they then should test for the CF genes if it shows. Well thats what happens in the UK, may give you an explanation to what the doctor had told you.
 

dyza

New member
With newborn screening what they are testing for is a 'chemical' that shows that the pancreas is not working properly, they then should test for the CF genes if it shows. Well thats what happens in the UK, may give you an explanation to what the doctor had told you.
 

dyza

New member
With newborn screening what they are testing for is a 'chemical' that shows that the pancreas is not working properly, they then should test for the CF genes if it shows. Well thats what happens in the UK, may give you an explanation to what the doctor had told you.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 

peanut

New member
Yes we are from the UK so it would be that test. I am feeling a bit more positive about it now, just need to get to the bottom of what is wrong with him, so we can stop him getting sick all the time.
 
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