CF patients thrive

[Fancymushroom]

Hi,
<br />
<br />I fully agree with everything the other posters have said. It's often not till later in life that the digestion gets worse and even then, there are quite a few people who get enough calories from what they eat to maintain a good weight. I have a friend who who literally has NO pancreas funtion at all and severe digestive problems and yet doesn't find it difficult to maintain her weight. (She eats alot though). I was diagnosed at the age of 19 which is obviously very late, as my lungs have always been my main problem. However, I had horrible digestion before dx, only ate foods with little or no fat, have always been short and slim, and was constantly eating (carbs, carbs, carbs!!) back then. I was slim but not terribly underweight, yet I was dxed with a sweat test of over 100.
<br />These days (nearly 3 years on) I take as many enzymes as the next person wcf, have to do night feeds to maintain my weight at a reasonable level, and get blockages occasionally. Which goes to show how much things can change in a short space of time. Your baby's sweat test should probably be ringing some alarm bells even if it's not diagnostic. Have they tested her stool for enzymes/fat? x

 

[Brad]

Julie

I know a young man who is in his mid 20s now.
He was thin as a youth, had a G tube for 12 years.
Now he looks like a body builder.

I my self was thin as baby, started to pick up
weight after DX. I lifted wights all my life.

I am not thin at all, My self and the Young Man
I spoke of Do in fact have Cf.

Maybe You should seek a 2nd Opinion.

When I was a Baby and child. The Docs labeled my Mother
as a Over Protective Mother because She kept pushing to
have My Brother and me tested for Cf.

She searched for a Doc who would listen.
Finally at 19 my Brother ( by then had very poor health )
Got a Doc at Georgetown to Test Him. He of course has Cf.
This prompted the other 4 of us to be tested.
As it turned out Mother was Correct. 4 of the 5 of Us
are Cfers.

See another doctor.
Not all Cfers are thin. there are different degrees
of Pancreatic efficiency.
I have no problem maintaining weight now. I use enzymes
to help keep BM's Reg and normal

 

[Brad]

Julie

I know a young man who is in his mid 20s now.
He was thin as a youth, had a G tube for 12 years.
Now he looks like a body builder.

I my self was thin as baby, started to pick up
weight after DX. I lifted wights all my life.

I am not thin at all, My self and the Young Man
I spoke of Do in fact have Cf.

Maybe You should seek a 2nd Opinion.

When I was a Baby and child. The Docs labeled my Mother
as a Over Protective Mother because She kept pushing to
have My Brother and me tested for Cf.

She searched for a Doc who would listen.
Finally at 19 my Brother ( by then had very poor health )
Got a Doc at Georgetown to Test Him. He of course has Cf.
This prompted the other 4 of us to be tested.
As it turned out Mother was Correct. 4 of the 5 of Us
are Cfers.

See another doctor.
Not all Cfers are thin. there are different degrees
of Pancreatic efficiency.
I have no problem maintaining weight now. I use enzymes
to help keep BM's Reg and normal

 

[Brad]

Julie
<br />
<br /> I know a young man who is in his mid 20s now.
<br /> He was thin as a youth, had a G tube for 12 years.
<br /> Now he looks like a body builder.
<br />
<br /> I my self was thin as baby, started to pick up
<br /> weight after DX. I lifted wights all my life.
<br />
<br /> I am not thin at all, My self and the Young Man
<br /> I spoke of Do in fact have Cf.
<br />
<br /> Maybe You should seek a 2nd Opinion.
<br />
<br /> When I was a Baby and child. The Docs labeled my Mother
<br /> as a Over Protective Mother because She kept pushing to
<br /> have My Brother and me tested for Cf.
<br />
<br /> She searched for a Doc who would listen.
<br /> Finally at 19 my Brother ( by then had very poor health )
<br /> Got a Doc at Georgetown to Test Him. He of course has Cf.
<br /> This prompted the other 4 of us to be tested.
<br /> As it turned out Mother was Correct. 4 of the 5 of Us
<br /> are Cfers.
<br />
<br /> See another doctor.
<br /> Not all Cfers are thin. there are different degrees
<br /> of Pancreatic efficiency.
<br /> I have no problem maintaining weight now. I use enzymes
<br /> to help keep BM's Reg and normal
<br />

 

[windex125]

this may sound very crazy but what are the postive numbers for sweat testing over ? under?

 

[windex125]

this may sound very crazy but what are the postive numbers for sweat testing over ? under?

 

[windex125]

this may sound very crazy but what are the postive numbers for sweat testing over ? under?

 

[hmw]

Negative- under 40 (cited as 30 for babies according to some sources.)
Borderline, which can go either way- 40-60
Positive- over 60
Of course, all those values have to be taken into consideration along with symptoms and genetic testing. Many people have a positive dx of CF with lower sweat tests values than a technical 'positive.'

 

[hmw]

Negative- under 40 (cited as 30 for babies according to some sources.)
Borderline, which can go either way- 40-60
Positive- over 60
Of course, all those values have to be taken into consideration along with symptoms and genetic testing. Many people have a positive dx of CF with lower sweat tests values than a technical 'positive.'

 

[hmw]

Negative- under 40 (cited as 30 for babies according to some sources.)
<br />Borderline, which can go either way- 40-60
<br />Positive- over 60
<br />Of course, all those values have to be taken into consideration along with symptoms and genetic testing. Many people have a positive dx of CF with lower sweat tests values than a technical 'positive.'

 

[Ratatosk]

Our son was sweat tested at an accreditted CF facility and had a result of 32. He was an infant at the time. In the NICU recovering from surgery due to meconium illeus. He also had basic genetic testing at mayo -- believe they tested for about 90 of the most common CF mutations and we found he did in fact have CF.

Keep pushing for answers!

 

[Ratatosk]

Our son was sweat tested at an accreditted CF facility and had a result of 32. He was an infant at the time. In the NICU recovering from surgery due to meconium illeus. He also had basic genetic testing at mayo -- believe they tested for about 90 of the most common CF mutations and we found he did in fact have CF.

Keep pushing for answers!

 

[Ratatosk]

Our son was sweat tested at an accreditted CF facility and had a result of 32. He was an infant at the time. In the NICU recovering from surgery due to meconium illeus. He also had basic genetic testing at mayo -- believe they tested for about 90 of the most common CF mutations and we found he did in fact have CF.
<br />
<br />Keep pushing for answers!

 

[windex125]

HMW are you a RN or a DR? you are so knowlegable in so many fields of this disease, and I see you post on alot of the forums. I have been jumping around readg alot of the forums just this past month, I joined I think 2yrs ago but wld only read? thanks for yr input on me, I have been at a very reputable CF center for more than 25yrs now, we work together to keep me well. I was diagnosed at birth as failure to thrive, then undiagnosed at age 8 as sweat test was what they called borderline at the time? But was always sickly as a child also thin and short, but for a women I guess 5' is ok LOL but I have had treatment for CF since age 23/25 then finally went to UNC Capel Hill late 90's for testings which proved postive for CF, I was also PS for yrs. but now need my creon as well. This disease is different for us all, and I am so happy there are so many forums to read. My MAC has been my biggest problem the past few yrs. but my postive attitude is the best medicine as this point of my life. Being 55 now with a son who will be 20 in Dec took me 11yrs to get preg. I am just blessed, and deal with this deck of cards as it comes to me.

 

[windex125]

HMW are you a RN or a DR? you are so knowlegable in so many fields of this disease, and I see you post on alot of the forums. I have been jumping around readg alot of the forums just this past month, I joined I think 2yrs ago but wld only read? thanks for yr input on me, I have been at a very reputable CF center for more than 25yrs now, we work together to keep me well. I was diagnosed at birth as failure to thrive, then undiagnosed at age 8 as sweat test was what they called borderline at the time? But was always sickly as a child also thin and short, but for a women I guess 5' is ok LOL but I have had treatment for CF since age 23/25 then finally went to UNC Capel Hill late 90's for testings which proved postive for CF, I was also PS for yrs. but now need my creon as well. This disease is different for us all, and I am so happy there are so many forums to read. My MAC has been my biggest problem the past few yrs. but my postive attitude is the best medicine as this point of my life. Being 55 now with a son who will be 20 in Dec took me 11yrs to get preg. I am just blessed, and deal with this deck of cards as it comes to me.

 

[windex125]

HMW are you a RN or a DR? you are so knowlegable in so many fields of this disease, and I see you post on alot of the forums. I have been jumping around readg alot of the forums just this past month, I joined I think 2yrs ago but wld only read? thanks for yr input on me, I have been at a very reputable CF center for more than 25yrs now, we work together to keep me well. I was diagnosed at birth as failure to thrive, then undiagnosed at age 8 as sweat test was what they called borderline at the time? But was always sickly as a child also thin and short, but for a women I guess 5' is ok LOL but I have had treatment for CF since age 23/25 then finally went to UNC Capel Hill late 90's for testings which proved postive for CF, I was also PS for yrs. but now need my creon as well. This disease is different for us all, and I am so happy there are so many forums to read. My MAC has been my biggest problem the past few yrs. but my postive attitude is the best medicine as this point of my life. Being 55 now with a son who will be 20 in Dec took me 11yrs to get preg. I am just blessed, and deal with this deck of cards as it comes to me.

 

[hmw]

Noooooo, not a medical professional at all. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Just a parent who researches.

You are so right... a positive attitude will take you far! I am glad your team works well with you and hope that this continues. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

Noooooo, not a medical professional at all. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Just a parent who researches.

You are so right... a positive attitude will take you far! I am glad your team works well with you and hope that this continues. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

Noooooo, not a medical professional at all. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Just a parent who researches.
<br />
<br />You are so right... a positive attitude will take you far! I am glad your team works well with you and hope that this continues. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NanaOf8GirlsAndCounting]

We were concerned with Graycie for being failure to thrive since birth and them pushing us to that 50%. After working with her dietitian we discovered that as long as they are on their own curve they are thriving....Graycie does have a g-tube and a short gut but she is thriving, even if she is on yellow at the clinic. I do know children who are PS and had no problems with weight gain at all, but they still have CF. Makes no sense to diagnois CF by thriving....