Confused and Frustrated

anien2

New member
how about another sweat test?? have you repeated it??? maybe the first one was wrong, that happened with my kid the first time he did the test.
 

verix

New member
Besides to find is he has CF or not, which is very important, I will try to fix the constipation problem from a different perspective. I would try to check his diet: I would give him lots of kiwi (kiwi helps my entire family with constipation issues, and it is a great source of vitamin C), I would feed him entirely high density nutrients foods such as whole grains, (non bleached foods or condiments), seeds, nuts, fruits and vegetables. I would avoid completely dairy products, and meat, almost till the problem gets resolved. Avoid processed foods for a while, and make him drinks lots of water, never sodas or things like that.
Also, I have read, in this web, that carriers may have some of the symptoms of CF.
Good luck,
Vera, mom of 8 years old boy w/CF
 

verix

New member
Besides to find is he has CF or not, which is very important, I will try to fix the constipation problem from a different perspective. I would try to check his diet: I would give him lots of kiwi (kiwi helps my entire family with constipation issues, and it is a great source of vitamin C), I would feed him entirely high density nutrients foods such as whole grains, (non bleached foods or condiments), seeds, nuts, fruits and vegetables. I would avoid completely dairy products, and meat, almost till the problem gets resolved. Avoid processed foods for a while, and make him drinks lots of water, never sodas or things like that.
Also, I have read, in this web, that carriers may have some of the symptoms of CF.
Good luck,
Vera, mom of 8 years old boy w/CF
 

verix

New member
Besides to find is he has CF or not, which is very important, I will try to fix the constipation problem from a different perspective. I would try to check his diet: I would give him lots of kiwi (kiwi helps my entire family with constipation issues, and it is a great source of vitamin C), I would feed him entirely high density nutrients foods such as whole grains, (non bleached foods or condiments), seeds, nuts, fruits and vegetables. I would avoid completely dairy products, and meat, almost till the problem gets resolved. Avoid processed foods for a while, and make him drinks lots of water, never sodas or things like that.
Also, I have read, in this web, that carriers may have some of the symptoms of CF.
Good luck,
Vera, mom of 8 years old boy w/CF
 
B

ByGrace

Guest
Thank you all for the advice. I'll see if I can find a CF specialist who knows more about the impact of the 5T variant.
 
B

ByGrace

Guest
Thank you all for the advice. I'll see if I can find a CF specialist who knows more about the impact of the 5T variant.
 
B

ByGrace

Guest
Thank you all for the advice. I'll see if I can find a CF specialist who knows more about the impact of the 5T variant.
 
Z

zinnia

Guest
Hello Pam, I'm in a situation like yours, my son has the same genotype (DF508 & 5T/12TG), he has no clinical symptoms, I found a lot of information about 5t variant, like this:
http://www.hopkinsmedicine.org/cfgenotyping/5t%20CARD%20Final.pdf
 
Z

zinnia

Guest
Hello Pam, I'm in a situation like yours, my son has the same genotype (DF508 & 5T/12TG), he has no clinical symptoms, I found a lot of information about 5t variant, like this:
http://www.hopkinsmedicine.org/cfgenotyping/5t%20CARD%20Final.pdf
 
Z

zinnia

Guest
Hello Pam, I'm in a situation like yours, my son has the same genotype (DF508 & 5T/12TG), he has no clinical symptoms, I found a lot of information about 5t variant, like this:
http://www.hopkinsmedicine.org/cfgenotyping/5t%20CARD%20Final.pdf
 
B

ByGrace

Guest
Zinnia, I have that and several others saved for reference. The confusing thing is that none of them agree with each other. Have your son's doctors started any proactive treatments, or are they taking a wait-and-see approach?
 
B

ByGrace

Guest
Zinnia, I have that and several others saved for reference. The confusing thing is that none of them agree with each other. Have your son's doctors started any proactive treatments, or are they taking a wait-and-see approach?
 
B

ByGrace

Guest
Zinnia, I have that and several others saved for reference. The confusing thing is that none of them agree with each other. Have your son's doctors started any proactive treatments, or are they taking a wait-and-see approach?
 
Z

zinnia

Guest
<font class="Apple-style-span" face="arial, sans-serif" size="3">duplicate<br></font>
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Z

zinnia

Guest
<font class="Apple-style-span" face="arial, sans-serif" size="3">duplicate<br></font>
<br>
 
Z

zinnia

Guest
<font class="Apple-style-span" face="arial, sans-serif" size="3">duplicate<br></font>
<br>
 
Z

zinnia

Guest
My baby is 4 mo, He makes no treatment, only reviews, a negative sweat test, a chest x-ray, no medicine, take vitamins a, d, c and iron as a normal baby, is exclusive breastfeeding, he sleeps well, no cramps, no reflux, is very easy, always smiling, never sick, never cold, nothing to indicate that he feel bad, like you I thought it would be their mutations in cis, but we've done studies, and the mutations are in trans, has the deltaF508 in cis with 7T, which is very rare.
 
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