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BryansMum

New member
Hi everyone, I've been doing a lot of browsing on this wonderful site for quite a few months now and feel it's finally time to post something myself.
My second son was very ill from the day he was born. He was diagnosed with severe asthma at 8 weeks of age because he couldn't get enough air to feed and kept turning blue. He (we!) spent most of his first year in hospital with recurrent pneumonia, was on antibiotic prophylaxis and nebulizer treatments (to give him decongestants and airway openers) 3 x daily (and more when he had an infection- which was most of the time despite the everyday antibiotics) and frequent short term and long term courses of Prednisolone (steroid). He lost huge amounts of weight by 11 months of age and couldn't eat so many foods. His belly would distend and he would begin to wheeze and a shocking gurgling sound would emanate from his throat when he ate something he couldn't tolerate. His diet was confined to rice, bananas and pears and heaps of vitamins. Dietitians didn't know what to do with him.
He had dangerous episodes and spent any weeks in hospital throughout his early school years. His body tolerated many more medications during those years.
I was told he was a 'mucousy asthmatic' and would have incurred long term lung damage as a result of his infections, leading to an early death- maybe in his early 40s.
As a 26 year old he has an average of 2 episodes of pneumonia every year and manages his health well.
Does he have cf? cf testing was never done. It scares me that he perhaps needs to do some treatments to ensure longer term lung health. He's not too likely to want to get testing done I think. Maybe I just have to watch and wait for more problems to develop now- not an easy thing to do.
~BTW My mother has always had shocking sinus problems which resulted in 4-5 surgeries during her lifetime. She is a chronic severe asthmatic.~
What do you all think? Should I press him to get something done? Or should I just let him live in relative peace until something more significant happens?
(Sorry this has ended up soooo long- tried to cut it down as much as I could!)

Am I overreacting here? Please be honest with what you think... I won't take offense.
 

BryansMum

New member
Hi everyone, I've been doing a lot of browsing on this wonderful site for quite a few months now and feel it's finally time to post something myself.
My second son was very ill from the day he was born. He was diagnosed with severe asthma at 8 weeks of age because he couldn't get enough air to feed and kept turning blue. He (we!) spent most of his first year in hospital with recurrent pneumonia, was on antibiotic prophylaxis and nebulizer treatments (to give him decongestants and airway openers) 3 x daily (and more when he had an infection- which was most of the time despite the everyday antibiotics) and frequent short term and long term courses of Prednisolone (steroid). He lost huge amounts of weight by 11 months of age and couldn't eat so many foods. His belly would distend and he would begin to wheeze and a shocking gurgling sound would emanate from his throat when he ate something he couldn't tolerate. His diet was confined to rice, bananas and pears and heaps of vitamins. Dietitians didn't know what to do with him.
He had dangerous episodes and spent any weeks in hospital throughout his early school years. His body tolerated many more medications during those years.
I was told he was a 'mucousy asthmatic' and would have incurred long term lung damage as a result of his infections, leading to an early death- maybe in his early 40s.
As a 26 year old he has an average of 2 episodes of pneumonia every year and manages his health well.
Does he have cf? cf testing was never done. It scares me that he perhaps needs to do some treatments to ensure longer term lung health. He's not too likely to want to get testing done I think. Maybe I just have to watch and wait for more problems to develop now- not an easy thing to do.
~BTW My mother has always had shocking sinus problems which resulted in 4-5 surgeries during her lifetime. She is a chronic severe asthmatic.~
What do you all think? Should I press him to get something done? Or should I just let him live in relative peace until something more significant happens?
(Sorry this has ended up soooo long- tried to cut it down as much as I could!)

Am I overreacting here? Please be honest with what you think... I won't take offense.
 

BryansMum

New member
Hi everyone, I've been doing a lot of browsing on this wonderful site for quite a few months now and feel it's finally time to post something myself.
My second son was very ill from the day he was born. He was diagnosed with severe asthma at 8 weeks of age because he couldn't get enough air to feed and kept turning blue. He (we!) spent most of his first year in hospital with recurrent pneumonia, was on antibiotic prophylaxis and nebulizer treatments (to give him decongestants and airway openers) 3 x daily (and more when he had an infection- which was most of the time despite the everyday antibiotics) and frequent short term and long term courses of Prednisolone (steroid). He lost huge amounts of weight by 11 months of age and couldn't eat so many foods. His belly would distend and he would begin to wheeze and a shocking gurgling sound would emanate from his throat when he ate something he couldn't tolerate. His diet was confined to rice, bananas and pears and heaps of vitamins. Dietitians didn't know what to do with him.
He had dangerous episodes and spent any weeks in hospital throughout his early school years. His body tolerated many more medications during those years.
I was told he was a 'mucousy asthmatic' and would have incurred long term lung damage as a result of his infections, leading to an early death- maybe in his early 40s.
As a 26 year old he has an average of 2 episodes of pneumonia every year and manages his health well.
Does he have cf? cf testing was never done. It scares me that he perhaps needs to do some treatments to ensure longer term lung health. He's not too likely to want to get testing done I think. Maybe I just have to watch and wait for more problems to develop now- not an easy thing to do.
~BTW My mother has always had shocking sinus problems which resulted in 4-5 surgeries during her lifetime. She is a chronic severe asthmatic.~
What do you all think? Should I press him to get something done? Or should I just let him live in relative peace until something more significant happens?
(Sorry this has ended up soooo long- tried to cut it down as much as I could!)

Am I overreacting here? Please be honest with what you think... I won't take offense.
 

BryansMum

New member
Hi everyone, I've been doing a lot of browsing on this wonderful site for quite a few months now and feel it's finally time to post something myself.
My second son was very ill from the day he was born. He was diagnosed with severe asthma at 8 weeks of age because he couldn't get enough air to feed and kept turning blue. He (we!) spent most of his first year in hospital with recurrent pneumonia, was on antibiotic prophylaxis and nebulizer treatments (to give him decongestants and airway openers) 3 x daily (and more when he had an infection- which was most of the time despite the everyday antibiotics) and frequent short term and long term courses of Prednisolone (steroid). He lost huge amounts of weight by 11 months of age and couldn't eat so many foods. His belly would distend and he would begin to wheeze and a shocking gurgling sound would emanate from his throat when he ate something he couldn't tolerate. His diet was confined to rice, bananas and pears and heaps of vitamins. Dietitians didn't know what to do with him.
He had dangerous episodes and spent any weeks in hospital throughout his early school years. His body tolerated many more medications during those years.
I was told he was a 'mucousy asthmatic' and would have incurred long term lung damage as a result of his infections, leading to an early death- maybe in his early 40s.
As a 26 year old he has an average of 2 episodes of pneumonia every year and manages his health well.
Does he have cf? cf testing was never done. It scares me that he perhaps needs to do some treatments to ensure longer term lung health. He's not too likely to want to get testing done I think. Maybe I just have to watch and wait for more problems to develop now- not an easy thing to do.
~BTW My mother has always had shocking sinus problems which resulted in 4-5 surgeries during her lifetime. She is a chronic severe asthmatic.~
What do you all think? Should I press him to get something done? Or should I just let him live in relative peace until something more significant happens?
(Sorry this has ended up soooo long- tried to cut it down as much as I could!)

Am I overreacting here? Please be honest with what you think... I won't take offense.
 

BryansMum

New member
Hi everyone, I've been doing a lot of browsing on this wonderful site for quite a few months now and feel it's finally time to post something myself.
My second son was very ill from the day he was born. He was diagnosed with severe asthma at 8 weeks of age because he couldn't get enough air to feed and kept turning blue. He (we!) spent most of his first year in hospital with recurrent pneumonia, was on antibiotic prophylaxis and nebulizer treatments (to give him decongestants and airway openers) 3 x daily (and more when he had an infection- which was most of the time despite the everyday antibiotics) and frequent short term and long term courses of Prednisolone (steroid). He lost huge amounts of weight by 11 months of age and couldn't eat so many foods. His belly would distend and he would begin to wheeze and a shocking gurgling sound would emanate from his throat when he ate something he couldn't tolerate. His diet was confined to rice, bananas and pears and heaps of vitamins. Dietitians didn't know what to do with him.
He had dangerous episodes and spent any weeks in hospital throughout his early school years. His body tolerated many more medications during those years.
I was told he was a 'mucousy asthmatic' and would have incurred long term lung damage as a result of his infections, leading to an early death- maybe in his early 40s.
As a 26 year old he has an average of 2 episodes of pneumonia every year and manages his health well.
Does he have cf? cf testing was never done. It scares me that he perhaps needs to do some treatments to ensure longer term lung health. He's not too likely to want to get testing done I think. Maybe I just have to watch and wait for more problems to develop now- not an easy thing to do.
~BTW My mother has always had shocking sinus problems which resulted in 4-5 surgeries during her lifetime. She is a chronic severe asthmatic.~
What do you all think? Should I press him to get something done? Or should I just let him live in relative peace until something more significant happens?
(Sorry this has ended up soooo long- tried to cut it down as much as I could!)

Am I overreacting here? Please be honest with what you think... I won't take offense.
 

JazzysMom

New member
This is difficult since its not you. Many of our members have been diagnosed late as I am sure you have read along your travels.\

Its a catch 22 with this. For health reasons & prolonging it & minizing any further damage as much as possible it would probably be the best idea.

If you can convince him I would go strait for the genetic testing. Another common trait in CF males is the infertility. I dont know if he is interested in a family, but its something to think of as a possible problem.

I would not wait for additional problems. The symptoms you describe are classic. I would probably imagine that during these infections he has cultured one of the commong CF bacteria also. I dont think it wise to wait.

It might take time to convince him & if you waste time waiting for more problems to occur that is valuable time lost.

HUGS, Welcome & Come back with more ??
 

JazzysMom

New member
This is difficult since its not you. Many of our members have been diagnosed late as I am sure you have read along your travels.\

Its a catch 22 with this. For health reasons & prolonging it & minizing any further damage as much as possible it would probably be the best idea.

If you can convince him I would go strait for the genetic testing. Another common trait in CF males is the infertility. I dont know if he is interested in a family, but its something to think of as a possible problem.

I would not wait for additional problems. The symptoms you describe are classic. I would probably imagine that during these infections he has cultured one of the commong CF bacteria also. I dont think it wise to wait.

It might take time to convince him & if you waste time waiting for more problems to occur that is valuable time lost.

HUGS, Welcome & Come back with more ??
 

JazzysMom

New member
This is difficult since its not you. Many of our members have been diagnosed late as I am sure you have read along your travels.\

Its a catch 22 with this. For health reasons & prolonging it & minizing any further damage as much as possible it would probably be the best idea.

If you can convince him I would go strait for the genetic testing. Another common trait in CF males is the infertility. I dont know if he is interested in a family, but its something to think of as a possible problem.

I would not wait for additional problems. The symptoms you describe are classic. I would probably imagine that during these infections he has cultured one of the commong CF bacteria also. I dont think it wise to wait.

It might take time to convince him & if you waste time waiting for more problems to occur that is valuable time lost.

HUGS, Welcome & Come back with more ??
 

JazzysMom

New member
This is difficult since its not you. Many of our members have been diagnosed late as I am sure you have read along your travels.\

Its a catch 22 with this. For health reasons & prolonging it & minizing any further damage as much as possible it would probably be the best idea.

If you can convince him I would go strait for the genetic testing. Another common trait in CF males is the infertility. I dont know if he is interested in a family, but its something to think of as a possible problem.

I would not wait for additional problems. The symptoms you describe are classic. I would probably imagine that during these infections he has cultured one of the commong CF bacteria also. I dont think it wise to wait.

It might take time to convince him & if you waste time waiting for more problems to occur that is valuable time lost.

HUGS, Welcome & Come back with more ??
 

JazzysMom

New member
This is difficult since its not you. Many of our members have been diagnosed late as I am sure you have read along your travels.\

Its a catch 22 with this. For health reasons & prolonging it & minizing any further damage as much as possible it would probably be the best idea.

If you can convince him I would go strait for the genetic testing. Another common trait in CF males is the infertility. I dont know if he is interested in a family, but its something to think of as a possible problem.

I would not wait for additional problems. The symptoms you describe are classic. I would probably imagine that during these infections he has cultured one of the commong CF bacteria also. I dont think it wise to wait.

It might take time to convince him & if you waste time waiting for more problems to occur that is valuable time lost.

HUGS, Welcome & Come back with more ??
 

mom2lillian

New member
It does sound highly likely. I agree that sooner is better than later, some individuals can walk around functioning pretty well until they 'hit a wall' so to speak and can no longer cope so if your instinct tells you that he has CF I would follow it. It would be best for him to get proper treatment before something like this happens.

I am 27 and was diagnosed 6 years ago but only after acting like a bulldog, firing, and accosting many doctors. If you are intersted in information on how to go about getting/ finding out about genetic testing visit my blog and look for ambry info. SInce I am same age as your son if you are intersted in chatting, or he is let me know.

I am sure it can be a scary idea that can seem easier to just ignore but I dont think that is wise. If he is anything like my husband, who would rather wait for a limb to fall off before going to the doc I know you have a big taks ahead of yoU!
 

mom2lillian

New member
It does sound highly likely. I agree that sooner is better than later, some individuals can walk around functioning pretty well until they 'hit a wall' so to speak and can no longer cope so if your instinct tells you that he has CF I would follow it. It would be best for him to get proper treatment before something like this happens.

I am 27 and was diagnosed 6 years ago but only after acting like a bulldog, firing, and accosting many doctors. If you are intersted in information on how to go about getting/ finding out about genetic testing visit my blog and look for ambry info. SInce I am same age as your son if you are intersted in chatting, or he is let me know.

I am sure it can be a scary idea that can seem easier to just ignore but I dont think that is wise. If he is anything like my husband, who would rather wait for a limb to fall off before going to the doc I know you have a big taks ahead of yoU!
 

mom2lillian

New member
It does sound highly likely. I agree that sooner is better than later, some individuals can walk around functioning pretty well until they 'hit a wall' so to speak and can no longer cope so if your instinct tells you that he has CF I would follow it. It would be best for him to get proper treatment before something like this happens.

I am 27 and was diagnosed 6 years ago but only after acting like a bulldog, firing, and accosting many doctors. If you are intersted in information on how to go about getting/ finding out about genetic testing visit my blog and look for ambry info. SInce I am same age as your son if you are intersted in chatting, or he is let me know.

I am sure it can be a scary idea that can seem easier to just ignore but I dont think that is wise. If he is anything like my husband, who would rather wait for a limb to fall off before going to the doc I know you have a big taks ahead of yoU!
 

mom2lillian

New member
It does sound highly likely. I agree that sooner is better than later, some individuals can walk around functioning pretty well until they 'hit a wall' so to speak and can no longer cope so if your instinct tells you that he has CF I would follow it. It would be best for him to get proper treatment before something like this happens.

I am 27 and was diagnosed 6 years ago but only after acting like a bulldog, firing, and accosting many doctors. If you are intersted in information on how to go about getting/ finding out about genetic testing visit my blog and look for ambry info. SInce I am same age as your son if you are intersted in chatting, or he is let me know.

I am sure it can be a scary idea that can seem easier to just ignore but I dont think that is wise. If he is anything like my husband, who would rather wait for a limb to fall off before going to the doc I know you have a big taks ahead of yoU!
 

mom2lillian

New member
It does sound highly likely. I agree that sooner is better than later, some individuals can walk around functioning pretty well until they 'hit a wall' so to speak and can no longer cope so if your instinct tells you that he has CF I would follow it. It would be best for him to get proper treatment before something like this happens.

I am 27 and was diagnosed 6 years ago but only after acting like a bulldog, firing, and accosting many doctors. If you are intersted in information on how to go about getting/ finding out about genetic testing visit my blog and look for ambry info. SInce I am same age as your son if you are intersted in chatting, or he is let me know.

I am sure it can be a scary idea that can seem easier to just ignore but I dont think that is wise. If he is anything like my husband, who would rather wait for a limb to fall off before going to the doc I know you have a big taks ahead of yoU!
 
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