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feeding my CF toddler
- Thread starter happyone
- Start date
clawson5104
New member
Wade has one mutation and a variant.......I was told the variant he has "pretends" to be a second mutation......But was also told he should not have too many CF symptoms....his issues should only be allergy/asthma related........That was a year ago.......and although he is not "classic CF" he does have symptoms. I guess a "mild" case....I should say. So far he is pancreatic sufficient....no enzymes....but he broke 27 pounds in April and has not gained ANY since.....he doesn't hardly eat at all) 2 CPT sessions. He has severe/moderate acid reflux too. And he just turned 3 on June 26th.......little guy...but don't let the size fool ya!
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
clawson5104
New member
Wade has one mutation and a variant.......I was told the variant he has "pretends" to be a second mutation......But was also told he should not have too many CF symptoms....his issues should only be allergy/asthma related........That was a year ago.......and although he is not "classic CF" he does have symptoms. I guess a "mild" case....I should say. So far he is pancreatic sufficient....no enzymes....but he broke 27 pounds in April and has not gained ANY since.....he doesn't hardly eat at all) 2 CPT sessions. He has severe/moderate acid reflux too. And he just turned 3 on June 26th.......little guy...but don't let the size fool ya!
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
clawson5104
New member
Wade has one mutation and a variant.......I was told the variant he has "pretends" to be a second mutation......But was also told he should not have too many CF symptoms....his issues should only be allergy/asthma related........That was a year ago.......and although he is not "classic CF" he does have symptoms. I guess a "mild" case....I should say. So far he is pancreatic sufficient....no enzymes....but he broke 27 pounds in April and has not gained ANY since.....he doesn't hardly eat at all) 2 CPT sessions. He has severe/moderate acid reflux too. And he just turned 3 on June 26th.......little guy...but don't let the size fool ya!
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
clawson5104
New member
Wade has one mutation and a variant.......I was told the variant he has "pretends" to be a second mutation......But was also told he should not have too many CF symptoms....his issues should only be allergy/asthma related........That was a year ago.......and although he is not "classic CF" he does have symptoms. I guess a "mild" case....I should say. So far he is pancreatic sufficient....no enzymes....but he broke 27 pounds in April and has not gained ANY since.....he doesn't hardly eat at all) 2 CPT sessions. He has severe/moderate acid reflux too. And he just turned 3 on June 26th.......little guy...but don't let the size fool ya!
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
Hope that helps.......
clawson5104
New member
Wade has one mutation and a variant.......I was told the variant he has "pretends" to be a second mutation......But was also told he should not have too many CF symptoms....his issues should only be allergy/asthma related........That was a year ago.......and although he is not "classic CF" he does have symptoms. I guess a "mild" case....I should say. So far he is pancreatic sufficient....no enzymes....but he broke 27 pounds in April and has not gained ANY since.....he doesn't hardly eat at all) 2 CPT sessions. He has severe/moderate acid reflux too. And he just turned 3 on June 26th.......little guy...but don't let the size fool ya!
<br />
<br />Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
<br />
<br />So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
<br />
<br />Hope that helps.......
<br />
<br />Yeah, I wish CF was "cut and dry" too. It is so hard to figure out. EVERYBODY is different. I have met people who have not found any mutations but are sympomatic......and others diagnosed "atypical" who weren't too sick when they were little but CF is progressing at a later age. I was also told that Wade may actually have a second mutation that has not been identified yet also.
<br />
<br />So all in a nutshell....atypical is supposed to be "mild"..... I guess when there is no mutation, one mutation, variants, or even non-symptomatic muations. At least from what I understand. I'm still learning....guess I always will be..... when it comes to CF. He was diagnosed May '07.
<br />
<br />Hope that helps.......