JUST REFERRED

Ratatosk

Administrator
Staff member
DS was diagnosed right after birth because of a bowel obstruction due to meconium illeus. One of his doctors explained that CFers are born with normal lungs; however, with time, the genetic mutation, infections, sticky mucus -- the lungs will become affected. We didn't have a clue that DH or I were carriers and both sides of the family have very extensive geneology information and there's no sign of CF.

Should other relatives be tested? If there are any who are planning to start families, it would be a very good idea. A couple of DH's cousins are going thru testing prior to starting families. Should other relatives be tested to see if they themselves have CF? There are a couple of DH's cousins who seem to have respiratory issues (asthma), but were told they don't have it because they passed "the test" -- sweat test. My response is that DS passed his with a normal 32.

A friend of mine's granddaughter was diagnosed with cf at 18 months and she and over 40 relatives (children, grandchildren, nieces, nephews, siblings) were all tested shortly before a family reunion, so they could spread the word, bring awareness to other members of the family that this could be a possibility. Several found out they were carriers and one person -- the child's grandfather said "oh, yeah, I had two cousins with CF". My friend said it would've been nice if they'd been aware of the possibility when they were trying to get her diagnosed.

Basically CF is a progressive disease. There are a number of factors that come into play as far as how it progresses -- some people mainly have digestive issues, some have sinus issues. Some on this site did well for years, only to get knocked for a loop by a particularly nasty bug called cepacia...
 

Ratatosk

Administrator
Staff member
DS was diagnosed right after birth because of a bowel obstruction due to meconium illeus. One of his doctors explained that CFers are born with normal lungs; however, with time, the genetic mutation, infections, sticky mucus -- the lungs will become affected. We didn't have a clue that DH or I were carriers and both sides of the family have very extensive geneology information and there's no sign of CF.

Should other relatives be tested? If there are any who are planning to start families, it would be a very good idea. A couple of DH's cousins are going thru testing prior to starting families. Should other relatives be tested to see if they themselves have CF? There are a couple of DH's cousins who seem to have respiratory issues (asthma), but were told they don't have it because they passed "the test" -- sweat test. My response is that DS passed his with a normal 32.

A friend of mine's granddaughter was diagnosed with cf at 18 months and she and over 40 relatives (children, grandchildren, nieces, nephews, siblings) were all tested shortly before a family reunion, so they could spread the word, bring awareness to other members of the family that this could be a possibility. Several found out they were carriers and one person -- the child's grandfather said "oh, yeah, I had two cousins with CF". My friend said it would've been nice if they'd been aware of the possibility when they were trying to get her diagnosed.

Basically CF is a progressive disease. There are a number of factors that come into play as far as how it progresses -- some people mainly have digestive issues, some have sinus issues. Some on this site did well for years, only to get knocked for a loop by a particularly nasty bug called cepacia...
 

Ratatosk

Administrator
Staff member
DS was diagnosed right after birth because of a bowel obstruction due to meconium illeus. One of his doctors explained that CFers are born with normal lungs; however, with time, the genetic mutation, infections, sticky mucus -- the lungs will become affected. We didn't have a clue that DH or I were carriers and both sides of the family have very extensive geneology information and there's no sign of CF.

Should other relatives be tested? If there are any who are planning to start families, it would be a very good idea. A couple of DH's cousins are going thru testing prior to starting families. Should other relatives be tested to see if they themselves have CF? There are a couple of DH's cousins who seem to have respiratory issues (asthma), but were told they don't have it because they passed "the test" -- sweat test. My response is that DS passed his with a normal 32.

A friend of mine's granddaughter was diagnosed with cf at 18 months and she and over 40 relatives (children, grandchildren, nieces, nephews, siblings) were all tested shortly before a family reunion, so they could spread the word, bring awareness to other members of the family that this could be a possibility. Several found out they were carriers and one person -- the child's grandfather said "oh, yeah, I had two cousins with CF". My friend said it would've been nice if they'd been aware of the possibility when they were trying to get her diagnosed.

Basically CF is a progressive disease. There are a number of factors that come into play as far as how it progresses -- some people mainly have digestive issues, some have sinus issues. Some on this site did well for years, only to get knocked for a loop by a particularly nasty bug called cepacia...
 

Ratatosk

Administrator
Staff member
DS was diagnosed right after birth because of a bowel obstruction due to meconium illeus. One of his doctors explained that CFers are born with normal lungs; however, with time, the genetic mutation, infections, sticky mucus -- the lungs will become affected. We didn't have a clue that DH or I were carriers and both sides of the family have very extensive geneology information and there's no sign of CF.

Should other relatives be tested? If there are any who are planning to start families, it would be a very good idea. A couple of DH's cousins are going thru testing prior to starting families. Should other relatives be tested to see if they themselves have CF? There are a couple of DH's cousins who seem to have respiratory issues (asthma), but were told they don't have it because they passed "the test" -- sweat test. My response is that DS passed his with a normal 32.

A friend of mine's granddaughter was diagnosed with cf at 18 months and she and over 40 relatives (children, grandchildren, nieces, nephews, siblings) were all tested shortly before a family reunion, so they could spread the word, bring awareness to other members of the family that this could be a possibility. Several found out they were carriers and one person -- the child's grandfather said "oh, yeah, I had two cousins with CF". My friend said it would've been nice if they'd been aware of the possibility when they were trying to get her diagnosed.

Basically CF is a progressive disease. There are a number of factors that come into play as far as how it progresses -- some people mainly have digestive issues, some have sinus issues. Some on this site did well for years, only to get knocked for a loop by a particularly nasty bug called cepacia...
 

Ratatosk

Administrator
Staff member
DS was diagnosed right after birth because of a bowel obstruction due to meconium illeus. One of his doctors explained that CFers are born with normal lungs; however, with time, the genetic mutation, infections, sticky mucus -- the lungs will become affected. We didn't have a clue that DH or I were carriers and both sides of the family have very extensive geneology information and there's no sign of CF.

Should other relatives be tested? If there are any who are planning to start families, it would be a very good idea. A couple of DH's cousins are going thru testing prior to starting families. Should other relatives be tested to see if they themselves have CF? There are a couple of DH's cousins who seem to have respiratory issues (asthma), but were told they don't have it because they passed "the test" -- sweat test. My response is that DS passed his with a normal 32.

A friend of mine's granddaughter was diagnosed with cf at 18 months and she and over 40 relatives (children, grandchildren, nieces, nephews, siblings) were all tested shortly before a family reunion, so they could spread the word, bring awareness to other members of the family that this could be a possibility. Several found out they were carriers and one person -- the child's grandfather said "oh, yeah, I had two cousins with CF". My friend said it would've been nice if they'd been aware of the possibility when they were trying to get her diagnosed.

Basically CF is a progressive disease. There are a number of factors that come into play as far as how it progresses -- some people mainly have digestive issues, some have sinus issues. Some on this site did well for years, only to get knocked for a loop by a particularly nasty bug called cepacia...
 

JORDYSMOM

New member
Hey Michelle- I sent you a PM (private message). In a nutshell though, wait to see what they find with your grandson before starting testing on anyone else. If they find that he does have CF, he will have two mutations. The report will list those mutations, so then you will know exactly what mutations to check the other children for. It will be much cheaper that way.

Stacey
 

JORDYSMOM

New member
Hey Michelle- I sent you a PM (private message). In a nutshell though, wait to see what they find with your grandson before starting testing on anyone else. If they find that he does have CF, he will have two mutations. The report will list those mutations, so then you will know exactly what mutations to check the other children for. It will be much cheaper that way.

Stacey
 

JORDYSMOM

New member
Hey Michelle- I sent you a PM (private message). In a nutshell though, wait to see what they find with your grandson before starting testing on anyone else. If they find that he does have CF, he will have two mutations. The report will list those mutations, so then you will know exactly what mutations to check the other children for. It will be much cheaper that way.

Stacey
 

JORDYSMOM

New member
Hey Michelle- I sent you a PM (private message). In a nutshell though, wait to see what they find with your grandson before starting testing on anyone else. If they find that he does have CF, he will have two mutations. The report will list those mutations, so then you will know exactly what mutations to check the other children for. It will be much cheaper that way.

Stacey
 

JORDYSMOM

New member
Hey Michelle- I sent you a PM (private message). In a nutshell though, wait to see what they find with your grandson before starting testing on anyone else. If they find that he does have CF, he will have two mutations. The report will list those mutations, so then you will know exactly what mutations to check the other children for. It will be much cheaper that way.

Stacey
 

Alyssa

New member
Michelle,

If a person has CF that means they have 2 CF genes (there are cases that have been diagnosed with only one gene, but the second hasn't been identified yet - it always takes two - one from each parent, just like all of their genes) Every person has two sets of genes -- the mother and the father will each "give away one gene each to the fetus - so each child can end up with either the two CF genes, or the two non CF genes or one CF from the mom and one normal from the dad or vice versa -- that's how the 1 in 4 chance happens for each pregnancy.

The person with CF gets both genes upon conception so "getting" CF happens at conception.... "presenting symptoms" can happen at any time. My son did not show any symptoms until he was over 21 years old. My daughter not until 5 years old...everyone is different.

Yes, if a child has two CF genes, each parent is a carrier of one CF gene -- having one (defective) CF gene does not cause any health problems -- there are many people who have carrier symptoms but that's another topic :)
 

Alyssa

New member
Michelle,

If a person has CF that means they have 2 CF genes (there are cases that have been diagnosed with only one gene, but the second hasn't been identified yet - it always takes two - one from each parent, just like all of their genes) Every person has two sets of genes -- the mother and the father will each "give away one gene each to the fetus - so each child can end up with either the two CF genes, or the two non CF genes or one CF from the mom and one normal from the dad or vice versa -- that's how the 1 in 4 chance happens for each pregnancy.

The person with CF gets both genes upon conception so "getting" CF happens at conception.... "presenting symptoms" can happen at any time. My son did not show any symptoms until he was over 21 years old. My daughter not until 5 years old...everyone is different.

Yes, if a child has two CF genes, each parent is a carrier of one CF gene -- having one (defective) CF gene does not cause any health problems -- there are many people who have carrier symptoms but that's another topic :)
 

Alyssa

New member
Michelle,

If a person has CF that means they have 2 CF genes (there are cases that have been diagnosed with only one gene, but the second hasn't been identified yet - it always takes two - one from each parent, just like all of their genes) Every person has two sets of genes -- the mother and the father will each "give away one gene each to the fetus - so each child can end up with either the two CF genes, or the two non CF genes or one CF from the mom and one normal from the dad or vice versa -- that's how the 1 in 4 chance happens for each pregnancy.

The person with CF gets both genes upon conception so "getting" CF happens at conception.... "presenting symptoms" can happen at any time. My son did not show any symptoms until he was over 21 years old. My daughter not until 5 years old...everyone is different.

Yes, if a child has two CF genes, each parent is a carrier of one CF gene -- having one (defective) CF gene does not cause any health problems -- there are many people who have carrier symptoms but that's another topic :)
 

Alyssa

New member
Michelle,

If a person has CF that means they have 2 CF genes (there are cases that have been diagnosed with only one gene, but the second hasn't been identified yet - it always takes two - one from each parent, just like all of their genes) Every person has two sets of genes -- the mother and the father will each "give away one gene each to the fetus - so each child can end up with either the two CF genes, or the two non CF genes or one CF from the mom and one normal from the dad or vice versa -- that's how the 1 in 4 chance happens for each pregnancy.

The person with CF gets both genes upon conception so "getting" CF happens at conception.... "presenting symptoms" can happen at any time. My son did not show any symptoms until he was over 21 years old. My daughter not until 5 years old...everyone is different.

Yes, if a child has two CF genes, each parent is a carrier of one CF gene -- having one (defective) CF gene does not cause any health problems -- there are many people who have carrier symptoms but that's another topic :)
 

Alyssa

New member
Michelle,

If a person has CF that means they have 2 CF genes (there are cases that have been diagnosed with only one gene, but the second hasn't been identified yet - it always takes two - one from each parent, just like all of their genes) Every person has two sets of genes -- the mother and the father will each "give away one gene each to the fetus - so each child can end up with either the two CF genes, or the two non CF genes or one CF from the mom and one normal from the dad or vice versa -- that's how the 1 in 4 chance happens for each pregnancy.

The person with CF gets both genes upon conception so "getting" CF happens at conception.... "presenting symptoms" can happen at any time. My son did not show any symptoms until he was over 21 years old. My daughter not until 5 years old...everyone is different.

Yes, if a child has two CF genes, each parent is a carrier of one CF gene -- having one (defective) CF gene does not cause any health problems -- there are many people who have carrier symptoms but that's another topic :)
 
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