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Diabetic test results
- Thread starter suzieq73
- Start date
Exploratory surgery's and tents.
<br />
<br />I have a book from 1976 it refers to the mutation of the disease that my mom gave me. They may have changed it after the book came out they talked about the most severe cases.
<br />
<br />Sorry,
<br /> I was referring to the most severe.
<br />
<br />Thanks
<br />Sue
<br />
<br />
<br />I have a book from 1976 it refers to the mutation of the disease that my mom gave me. They may have changed it after the book came out they talked about the most severe cases.
<br />
<br />Sorry,
<br /> I was referring to the most severe.
<br />
<br />Thanks
<br />Sue
<br />
i was born in 1968......i don't remember exploratory surgery though. My father mentioned to me one time over the phone recently that some day he will share with me some of the crazy things that were recommended to them when I was born. They left that center in our home town though and ended up driving many hours to Houston for treatment. I am not sure still what those crazy things might have been....didn't really care to know at the time.
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
i was born in 1968......i don't remember exploratory surgery though. My father mentioned to me one time over the phone recently that some day he will share with me some of the crazy things that were recommended to them when I was born. They left that center in our home town though and ended up driving many hours to Houston for treatment. I am not sure still what those crazy things might have been....didn't really care to know at the time.
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
i was born in 1968......i don't remember exploratory surgery though. My father mentioned to me one time over the phone recently that some day he will share with me some of the crazy things that were recommended to them when I was born. They left that center in our home town though and ended up driving many hours to Houston for treatment. I am not sure still what those crazy things might have been....didn't really care to know at the time.
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
i was born in 1968......i don't remember exploratory surgery though. My father mentioned to me one time over the phone recently that some day he will share with me some of the crazy things that were recommended to them when I was born. They left that center in our home town though and ended up driving many hours to Houston for treatment. I am not sure still what those crazy things might have been....didn't really care to know at the time.
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
i was born in 1968......i don't remember exploratory surgery though. My father mentioned to me one time over the phone recently that some day he will share with me some of the crazy things that were recommended to them when I was born. They left that center in our home town though and ended up driving many hours to Houston for treatment. I am not sure still what those crazy things might have been....didn't really care to know at the time.
<br />
<br />I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
<br />
<br />Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I DO remember the mist tent though. My POOR mother would have to tear that thing down every morning and clean it in the bathtub....of all places. She said she was terrified that she would not get it clean enough. Finally, thank the LORD, she had enough mother's intuition to stop using it. Actually, I think she used it for a few weeks at the most. She said I would wake up bright red and sweating.
<br />
<br />Best of luck to you in finding out the best way to continue to care for your son and find some answers<img src="i/expressions/face-icon-small-smile.gif" border="0">
My oldest son was born in 1979 and diagnosed when he was five months.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
My oldest son was born in 1979 and diagnosed when he was five months.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
My oldest son was born in 1979 and diagnosed when he was five months.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
My oldest son was born in 1979 and diagnosed when he was five months.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
He didnt have a mist tent or anything other then what I've mentioned.
Btw, he is now almost 30 and doing quite well.
My oldest son was born in 1979 and diagnosed when he was five months.
<br />
<br />The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
<br />He didnt have a mist tent or anything other then what I've mentioned.
<br />
<br />Btw, he is now almost 30 and doing quite well.
<br />
<br />The life expectancy then was about 13 or 'teenage years'. He had physio a lot and nebulised propylene glycol and gentamycin for a couple of years. He was diagnosed by me mentioning how salty his sweat was. They did a sweat test by wrapping him in blankets and placing him in a humidicrib.
<br />He didnt have a mist tent or anything other then what I've mentioned.
<br />
<br />Btw, he is now almost 30 and doing quite well.
NYCLawGirl
New member
Not to sound overly like a diplomat here, but I think we've probably hit on the #1 difference between CF care today and CF care back in the 70s/early 80s, and that is that it wasn't really standardized yet. Considering how much variation there can still be among clinics, even with the CFF's attempts to standardize guidelines, it doesn't exactly surprise me that parents at that point were given conflicting info re: life expectancy or that treatments/care regimens varied sharply from center to center. In other words (here's the diplomatic part), I think it's quite possible that we're all right here.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
NYCLawGirl
New member
Not to sound overly like a diplomat here, but I think we've probably hit on the #1 difference between CF care today and CF care back in the 70s/early 80s, and that is that it wasn't really standardized yet. Considering how much variation there can still be among clinics, even with the CFF's attempts to standardize guidelines, it doesn't exactly surprise me that parents at that point were given conflicting info re: life expectancy or that treatments/care regimens varied sharply from center to center. In other words (here's the diplomatic part), I think it's quite possible that we're all right here.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
NYCLawGirl
New member
Not to sound overly like a diplomat here, but I think we've probably hit on the #1 difference between CF care today and CF care back in the 70s/early 80s, and that is that it wasn't really standardized yet. Considering how much variation there can still be among clinics, even with the CFF's attempts to standardize guidelines, it doesn't exactly surprise me that parents at that point were given conflicting info re: life expectancy or that treatments/care regimens varied sharply from center to center. In other words (here's the diplomatic part), I think it's quite possible that we're all right here.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
NYCLawGirl
New member
Not to sound overly like a diplomat here, but I think we've probably hit on the #1 difference between CF care today and CF care back in the 70s/early 80s, and that is that it wasn't really standardized yet. Considering how much variation there can still be among clinics, even with the CFF's attempts to standardize guidelines, it doesn't exactly surprise me that parents at that point were given conflicting info re: life expectancy or that treatments/care regimens varied sharply from center to center. In other words (here's the diplomatic part), I think it's quite possible that we're all right here.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
NYCLawGirl
New member
Not to sound overly like a diplomat here, but I think we've probably hit on the #1 difference between CF care today and CF care back in the 70s/early 80s, and that is that it wasn't really standardized yet. Considering how much variation there can still be among clinics, even with the CFF's attempts to standardize guidelines, it doesn't exactly surprise me that parents at that point were given conflicting info re: life expectancy or that treatments/care regimens varied sharply from center to center. In other words (here's the diplomatic part), I think it's quite possible that we're all right here.
<br />
<br />I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
<br />
<br />One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.
<br />
<br />I was diagnosed in 1981 at 6 weeks old by sweat test. At that point I think the life expectancy was probably around 18 years old. But the exact words of the doctor to my parents were "take her home and love her as long as you have her." Not exactly inspirational. My parents were then set up at a CFF clinic, where they got me on manual physio and started me on enzymes and nebulized tobra and mucomyst pretty early on (I remember doing it at like 3 years old). I never had any surgeries or bronchs though, and I never slept in a tent.
<br />
<br />One thing is for sure, Suzie - your mom is right that you're son is lucky to be a CFer now rather than 30 years ago. I'm amazed at the new drugs we have on the market, or close to the market, and this generation gets all the benefits of starting those EARLY.