Doctor Suggested CF testing for 7 year old male, HELP!!!!

[sawyerfamily]

<P>Hello,</P>
<P>Today was the first time a doctor suggested that we have my son tested for CF.  Any and all information would be greatly appreciated!!!</P>
<P> </P>
<P>My son is 7, will be 8 in Jan.  He had his first sinus surgery in Jan.  All 8 of his sinuses are in, and they were all blocked.   Then 3 weeks later had to have another one, and polyps had filled his sinus cavities, and was sent home with PICC LINE and IV antibotics.  He last 3 weeks before he developed serum sickness and had to have the PICC line removed.  He was then placed on Steriod Treatment for 3 months.  He is small for his age.  Only weighs 54 pounds on a good day and is 47 inches tall.  During winter months he is more apt to use a nebulizer for wheezing.  He sees his ENT every 2 weeks to check for return of the polyps.  Dr can't explain why he just suddenly got them.  My son also has numerous food, medicine, and contact allergies.  He is allergic to the flu shot also.  </P>
<P> </P>
<P>Is it common to NOT have a diagnosis until 7/8 years old?  </P>
<P>Dr suggested we do a sweat test.  If you have any information or insight I would appreciate it.</P>

 

[sawyerfamily]

<P>Hello,</P>
<P>Today was the first time a doctor suggested that we have my son tested for CF. Any and all information would be greatly appreciated!!!</P>
<P></P>
<P>My son is 7, will be 8 in Jan. He had his first sinus surgery in Jan.All 8 of his sinuses are in, and they were all blocked.Then 3 weeks later had to have another one, and polyps had filled his sinus cavities, and was sent home with PICC LINE and IV antibotics. He last 3 weeks before he developed serum sickness and had to have the PICC line removed. He was then placed on Steriod Treatment for 3 months. He is small for his age. Only weighs 54 pounds on a good day and is 47 inches tall. During winter months he is more apt to use a nebulizer for wheezing. He sees his ENT every 2 weeks to check for return of the polyps. Dr can't explain why he just suddenly got them. My son also has numerous food, medicine, and contact allergies. He is allergic to the flu shot also. </P>
<P></P>
<P>Is it common to NOT have a diagnosis until 7/8 years old? </P>
<P>Dr suggested we do a sweat test. If you have any information or insight I would appreciate it.</P>

 

[sawyerfamily]

<P><BR>Hello,</P>
<P>Today was the first time a doctor suggested that we have my son tested for CF. Any and all information would be greatly appreciated!!!</P>
<P></P>
<P>My son is 7, will be 8 in Jan. He had his first sinus surgery in Jan.All 8 of his sinuses are in, and they were all blocked.Then 3 weeks later had to have another one, and polyps had filled his sinus cavities, and was sent home with PICC LINE and IV antibotics. He last 3 weeks before he developed serum sickness and had to have the PICC line removed. He was then placed on Steriod Treatment for 3 months. He is small for his age. Only weighs 54 pounds on a good day and is 47 inches tall. During winter months he is more apt to use a nebulizer for wheezing. He sees his ENT every 2 weeks to check for return of the polyps. Dr can't explain why he just suddenly got them. My son also has numerous food, medicine, and contact allergies. He is allergic to the flu shot also. </P>
<P></P>
<P>Is it common to NOT have a diagnosis until 7/8 years old? </P>
<P>Dr suggested we do a sweat test. If you have any information or insight I would appreciate it.</P>

 

[just1more]

First of all welcome.

Ok, let me see what I can do about your questions:

1) Symptoms are in my opinion sufficient to warrant testing. CF can cause everything you mention, including being failure to thrive/small.

2) As for testing, a sweat test is the 1st thing they do. You want to make sure you are at an accredited CF center, otherwise the results are very unreliable. You can find your nearest CF center at

http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/

3) Depending on the results of the sweat test, they may discuss genetic testing. If so you will want to push for the 'full' test, or an agreement to run it if the 1st test is not conclusive. The reason is there are ~1500 known mutations, and the basic test only tests for the most common 90-100 mutations;

4) Yes, it is very common to not have an diagnosis before his age, or even well beyond. CF is progressive and every case (even in twins) is different.

Your main focus right now should be to start doing some education, and this site is a great resource. Do realize that everything you read online is neither current nor accurate so don't let a google search freak you out. There is a lot of outdated info and just plain crap out there.

If you have more questions, feel free to post and the members here will do all we can to help.

 

[just1more]

First of all welcome.

Ok, let me see what I can do about your questions:

1) Symptoms are in my opinion sufficient to warrant testing. CF can cause everything you mention, including being failure to thrive/small.

2) As for testing, a sweat test is the 1st thing they do. You want to make sure you are at an accredited CF center, otherwise the results are very unreliable. You can find your nearest CF center at

http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/

3) Depending on the results of the sweat test, they may discuss genetic testing. If so you will want to push for the 'full' test, or an agreement to run it if the 1st test is not conclusive. The reason is there are ~1500 known mutations, and the basic test only tests for the most common 90-100 mutations;

4) Yes, it is very common to not have an diagnosis before his age, or even well beyond. CF is progressive and every case (even in twins) is different.

Your main focus right now should be to start doing some education, and this site is a great resource. Do realize that everything you read online is neither current nor accurate so don't let a google search freak you out. There is a lot of outdated info and just plain crap out there.

If you have more questions, feel free to post and the members here will do all we can to help.

 

[just1more]

First of all welcome.
<br />
<br />Ok, let me see what I can do about your questions:
<br />
<br />1) Symptoms are in my opinion sufficient to warrant testing. CF can cause everything you mention, including being failure to thrive/small.
<br />
<br />2) As for testing, a sweat test is the 1st thing they do. You want to make sure you are at an accredited CF center, otherwise the results are very unreliable. You can find your nearest CF center at
<br />
<br />http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
<br />
<br />3) Depending on the results of the sweat test, they may discuss genetic testing. If so you will want to push for the 'full' test, or an agreement to run it if the 1st test is not conclusive. The reason is there are ~1500 known mutations, and the basic test only tests for the most common 90-100 mutations;
<br />
<br />4) Yes, it is very common to not have an diagnosis before his age, or even well beyond. CF is progressive and every case (even in twins) is different.
<br />
<br />Your main focus right now should be to start doing some education, and this site is a great resource. Do realize that everything you read online is neither current nor accurate so don't let a google search freak you out. There is a lot of outdated info and just plain crap out there.
<br />
<br />If you have more questions, feel free to post and the members here will do all we can to help.
<br />

 

[Printer]

Tom is right run to your nearest CF Center. The sweat test is painless and takes about 30 minutes. CF can be dx at any age, I was 47.

 

[Printer]

Tom is right run to your nearest CF Center. The sweat test is painless and takes about 30 minutes. CF can be dx at any age, I was 47.

 

[Printer]

Tom is right run to your nearest CF Center. The sweat test is painless and takes about 30 minutes. CF can be dx at any age, I was 47.

 

[shaz17772]

Try not to worry too much, if it's cf that he has they earlier they diagnose the better... Dr's are there to help I'm sure they do their best to keep your son well x My 6 year old son was diagnosed at about 2 weeks old, via the guthrie test results.. followed up by a sweat test.. the symptoms your describing sound very common in CF carriers, but that doesn't automatically make him have it... but I would follow the Dr's advice... as if he's underweight & a poorly child, you really need to get him diagnosed & some treatment as soon as possibly. My son doing very well thanks to the care my local hospital has given us.. <br>Best wishes for you & your family for the future xxx<br>x Shaz x<br>

 

[shaz17772]

Try not to worry too much, if it's cf that he has they earlier they diagnose the better... Dr's are there to help I'm sure they do their best to keep your son well x My 6 year old son was diagnosed at about 2 weeks old, via the guthrie test results.. followed up by a sweat test.. the symptoms your describing sound very common in CF carriers, but that doesn't automatically make him have it... but I would follow the Dr's advice... as if he's underweight & a poorly child, you really need to get him diagnosed & some treatment as soon as possibly. My son doing very well thanks to the care my local hospital has given us.. <br>Best wishes for you & your family for the future xxx<br>x Shaz x<br>

 

[shaz17772]

Try not to worry too much, if it's cf that he has they earlier they diagnose the better... Dr's are there to help I'm sure they do their best to keep your son well x My 6 year old son was diagnosed at about 2 weeks old, via the guthrie test results.. followed up by a sweat test.. the symptoms your describing sound very common in CF carriers, but that doesn't automatically make him have it... but I would follow the Dr's advice... as if he's underweight & a poorly child, you really need to get him diagnosed & some treatment as soon as possibly. My son doing very well thanks to the care my local hospital has given us.. <br>Best wishes for you & your family for the future xxx<br>x Shaz x<br>

 

[lilmamasmith]

i have a 9 year old with cf she has been pretty healthy since she was born. she was diagnosed with it in utero. she weighs about 36 pounds and is as big as a 5 year old all her blood levels and everything are normal exept for her viatamin levels. i can tell u from experiance it is a very hard road to go down. have the sweat test done. if he does have it i suggest u find a doctor u like and trust reserch them get confertable with them its someone u will have to deal with for a very long time.

 

[lilmamasmith]

i have a 9 year old with cf she has been pretty healthy since she was born. she was diagnosed with it in utero. she weighs about 36 pounds and is as big as a 5 year old all her blood levels and everything are normal exept for her viatamin levels. i can tell u from experiance it is a very hard road to go down. have the sweat test done. if he does have it i suggest u find a doctor u like and trust reserch them get confertable with them its someone u will have to deal with for a very long time.

 

[lilmamasmith]

i have a 9 year old with cf she has been pretty healthy since she was born. she was diagnosed with it in utero. she weighs about 36 pounds and is as big as a 5 year old all her blood levels and everything are normal exept for her viatamin levels. i can tell u from experiance it is a very hard road to go down. have the sweat test done. if he does have it i suggest u find a doctor u like and trust reserch them get confertable with them its someone u will have to deal with for a very long time.

 

[patrish22]

Don't panic. Definately get to a clinic and get testing done. My daughter (and her identical twin) were diagnosed at 13, after they developed type 1 diabetes. We went through a lot of years of misdiagnosises until the diabetes forced us to travel to a better hospital, (the endocrinologist put 2&2 together and diagnosed them immediately). Then the clinic decided to test our son (who is 14 months younger) and he has cf also. Its a strange combination of fear and relief  when you know what your dealing with. Knowledge and treatment will give your son a better quality of life. All three of my kids have manifested the disease differently over the years. 1 daughter passed away at 25 and always was sicker than the other two. My other daughter is now 26, married and living with about 40% lung function and doing pretty well. My son is  about 88% lung function and rides his bike to work most every day (about a 20 mile commute) and is on a cycling team. So remember, even if your child is diagnosed with cf, there is so much that can be done. Besides, you came to the right place. This site has an amazing group of loving supportive people who are always willing to help, and share a wealth of knowledge. As long as this site exists you will never feel alone.

 

[patrish22]

Don't panic. Definately get to a clinic and get testing done. My daughter (and her identical twin)were diagnosed at 13, afterthey developed type 1 diabetes. We went through a lot of years of misdiagnosises until the diabetes forced us to travel to a better hospital, (the endocrinologist put 2&2 together and diagnosed themimmediately).Then the clinic decided to testour son (who is 14 months younger) and he has cf also. Its a strange combination of fear and relief when you know what your dealing with. Knowledge and treatment will give your son a better quality of life. All three of my kids have manifested the disease differentlyover the years. 1 daughter passed away at 25 and always was sicker than the other two. My other daughter is now 26, married and living with about 40% lung function and doing pretty well. My son is about 88% lung function and rides his bike to work most every day (about a 20 mile commute) and ison a cycling team. So remember, even if your child is diagnosed with cf, there is so much that can be done. Besides, you came to the right place. This site has an amazing group of loving supportive people who are always willing to help, and share a wealth of knowledge. As long as this site exists you will never feel alone.

 

[patrish22]

<BR>Don't panic. Definately get to a clinic and get testing done. My daughter (and her identical twin)were diagnosed at 13, afterthey developed type 1 diabetes. We went through a lot of years of misdiagnosises until the diabetes forced us to travel to a better hospital, (the endocrinologist put 2&2 together and diagnosed themimmediately).Then the clinic decided to testour son (who is 14 months younger) and he has cf also. Its a strange combination of fear and relief when you know what your dealing with. Knowledge and treatment will give your son a better quality of life. All three of my kids have manifested the disease differentlyover the years. 1 daughter passed away at 25 and always was sicker than the other two. My other daughter is now 26, married and living with about 40% lung function and doing pretty well. My son is about 88% lung function and rides his bike to work most every day (about a 20 mile commute) and ison a cycling team. So remember, even if your child is diagnosed with cf, there is so much that can be done. Besides, you came to the right place. This site has an amazing group of loving supportive people who are always willing to help, and share a wealth of knowledge. As long as this site exists you will never feel alone.