Possible CF - Need Help

[RTAYLOR1]

CatesMom,

I know how you feel, my daughter was recently diagnosed with CF, Sept 07. Just wanted to give you some words of encouragment. I am sure you have been online and see how serious this disease can be but remember what your situation is and don't think about the future until you have some definite answers. It sounds like Cate is during well. My daughter is 6 years old and has battled the same resp. infections, pnemonia and has chronic constipation. I try to remember and thank God everyday that is all we are dealing with. We are currently only on meds to help her BM's that's it. We check in every 2/4 months with the lung doc and the stomach doc. This is so much better than alot of the kiddos dealing with disease. What has helped me is keeping in perspective what I know is true for just today and that we are only dealing with mild problems.

Robin

 

[RTAYLOR1]

CatesMom,

I know how you feel, my daughter was recently diagnosed with CF, Sept 07. Just wanted to give you some words of encouragment. I am sure you have been online and see how serious this disease can be but remember what your situation is and don't think about the future until you have some definite answers. It sounds like Cate is during well. My daughter is 6 years old and has battled the same resp. infections, pnemonia and has chronic constipation. I try to remember and thank God everyday that is all we are dealing with. We are currently only on meds to help her BM's that's it. We check in every 2/4 months with the lung doc and the stomach doc. This is so much better than alot of the kiddos dealing with disease. What has helped me is keeping in perspective what I know is true for just today and that we are only dealing with mild problems.

Robin

 

[RTAYLOR1]

CatesMom,

I know how you feel, my daughter was recently diagnosed with CF, Sept 07. Just wanted to give you some words of encouragment. I am sure you have been online and see how serious this disease can be but remember what your situation is and don't think about the future until you have some definite answers. It sounds like Cate is during well. My daughter is 6 years old and has battled the same resp. infections, pnemonia and has chronic constipation. I try to remember and thank God everyday that is all we are dealing with. We are currently only on meds to help her BM's that's it. We check in every 2/4 months with the lung doc and the stomach doc. This is so much better than alot of the kiddos dealing with disease. What has helped me is keeping in perspective what I know is true for just today and that we are only dealing with mild problems.

Robin

 

[RTAYLOR1]

CatesMom,

I know how you feel, my daughter was recently diagnosed with CF, Sept 07. Just wanted to give you some words of encouragment. I am sure you have been online and see how serious this disease can be but remember what your situation is and don't think about the future until you have some definite answers. It sounds like Cate is during well. My daughter is 6 years old and has battled the same resp. infections, pnemonia and has chronic constipation. I try to remember and thank God everyday that is all we are dealing with. We are currently only on meds to help her BM's that's it. We check in every 2/4 months with the lung doc and the stomach doc. This is so much better than alot of the kiddos dealing with disease. What has helped me is keeping in perspective what I know is true for just today and that we are only dealing with mild problems.

Robin

 

[RTAYLOR1]

CatesMom,
<br />
<br />I know how you feel, my daughter was recently diagnosed with CF, Sept 07. Just wanted to give you some words of encouragment. I am sure you have been online and see how serious this disease can be but remember what your situation is and don't think about the future until you have some definite answers. It sounds like Cate is during well. My daughter is 6 years old and has battled the same resp. infections, pnemonia and has chronic constipation. I try to remember and thank God everyday that is all we are dealing with. We are currently only on meds to help her BM's that's it. We check in every 2/4 months with the lung doc and the stomach doc. This is so much better than alot of the kiddos dealing with disease. What has helped me is keeping in perspective what I know is true for just today and that we are only dealing with mild problems.
<br />
<br />Robin

 

[schmaeng04]

Hi Catesmom. My son Ryan was just diagnosed on Monday, 4/14/08. He is in the 90-100% for weight and height. He has Delta f508 and R117H genes. He is pancreatic sufficient and had a sweat test number of 40. The doctors could not believe it because the only symptoms he had were a family history on my husband's side, 4-5 times of recurrent pneumonia, and chronic sinus issues. He had the 97 panel done to confirm it and those two genes are on that panel. He has Atypical CF with the Atypical symptoms. My oldest son is going to be tested in a month when my youngest goes back for his follow-up visit. Keep pushing for tests and answers because I did and now my kiddo can get the proper treatments and preventative medications. It's a tough road though, with knowing that your loved one has a chronic illness and wanting them to live a normal life, but protecting them even more from everything.... good luck in this process and don't give up!

 

[schmaeng04]

Hi Catesmom. My son Ryan was just diagnosed on Monday, 4/14/08. He is in the 90-100% for weight and height. He has Delta f508 and R117H genes. He is pancreatic sufficient and had a sweat test number of 40. The doctors could not believe it because the only symptoms he had were a family history on my husband's side, 4-5 times of recurrent pneumonia, and chronic sinus issues. He had the 97 panel done to confirm it and those two genes are on that panel. He has Atypical CF with the Atypical symptoms. My oldest son is going to be tested in a month when my youngest goes back for his follow-up visit. Keep pushing for tests and answers because I did and now my kiddo can get the proper treatments and preventative medications. It's a tough road though, with knowing that your loved one has a chronic illness and wanting them to live a normal life, but protecting them even more from everything.... good luck in this process and don't give up!

 

[schmaeng04]

Hi Catesmom. My son Ryan was just diagnosed on Monday, 4/14/08. He is in the 90-100% for weight and height. He has Delta f508 and R117H genes. He is pancreatic sufficient and had a sweat test number of 40. The doctors could not believe it because the only symptoms he had were a family history on my husband's side, 4-5 times of recurrent pneumonia, and chronic sinus issues. He had the 97 panel done to confirm it and those two genes are on that panel. He has Atypical CF with the Atypical symptoms. My oldest son is going to be tested in a month when my youngest goes back for his follow-up visit. Keep pushing for tests and answers because I did and now my kiddo can get the proper treatments and preventative medications. It's a tough road though, with knowing that your loved one has a chronic illness and wanting them to live a normal life, but protecting them even more from everything.... good luck in this process and don't give up!

 

[schmaeng04]

Hi Catesmom. My son Ryan was just diagnosed on Monday, 4/14/08. He is in the 90-100% for weight and height. He has Delta f508 and R117H genes. He is pancreatic sufficient and had a sweat test number of 40. The doctors could not believe it because the only symptoms he had were a family history on my husband's side, 4-5 times of recurrent pneumonia, and chronic sinus issues. He had the 97 panel done to confirm it and those two genes are on that panel. He has Atypical CF with the Atypical symptoms. My oldest son is going to be tested in a month when my youngest goes back for his follow-up visit. Keep pushing for tests and answers because I did and now my kiddo can get the proper treatments and preventative medications. It's a tough road though, with knowing that your loved one has a chronic illness and wanting them to live a normal life, but protecting them even more from everything.... good luck in this process and don't give up!

 

[schmaeng04]

Hi Catesmom. My son Ryan was just diagnosed on Monday, 4/14/08. He is in the 90-100% for weight and height. He has Delta f508 and R117H genes. He is pancreatic sufficient and had a sweat test number of 40. The doctors could not believe it because the only symptoms he had were a family history on my husband's side, 4-5 times of recurrent pneumonia, and chronic sinus issues. He had the 97 panel done to confirm it and those two genes are on that panel. He has Atypical CF with the Atypical symptoms. My oldest son is going to be tested in a month when my youngest goes back for his follow-up visit. Keep pushing for tests and answers because I did and now my kiddo can get the proper treatments and preventative medications. It's a tough road though, with knowing that your loved one has a chronic illness and wanting them to live a normal life, but protecting them even more from everything.... good luck in this process and don't give up!

 

[Alyssa]

You are not over reacting... I'm going to be very blunt and to the point... <b>what you are describing are very classic CF symptoms and it is very likely your child does have CF... you should get her to a Certified CF doctor right away and get full genetic testing... </b>yes there are quite a few more genes than just the 97 that they tested for... 1561 to be exact.. some people say 1800, either way they did not look for very many possibilities at all... and again, <b>you have mentioned five very classic CF symptoms... rectal prolapse, smelly poop, poor weight gain, repeat lung infection, and a borderline sweat test result...</b> by the way my daughter's sweat test is 38, my sons is 41... they both have confirmed genetic CF.

This is a very serious matter which should be dealt with as soon as possible... you have everything to gain.. her health will improve if you get the correct diagnosis and treatment.

 

[Alyssa]

You are not over reacting... I'm going to be very blunt and to the point... <b>what you are describing are very classic CF symptoms and it is very likely your child does have CF... you should get her to a Certified CF doctor right away and get full genetic testing... </b>yes there are quite a few more genes than just the 97 that they tested for... 1561 to be exact.. some people say 1800, either way they did not look for very many possibilities at all... and again, <b>you have mentioned five very classic CF symptoms... rectal prolapse, smelly poop, poor weight gain, repeat lung infection, and a borderline sweat test result...</b> by the way my daughter's sweat test is 38, my sons is 41... they both have confirmed genetic CF.

This is a very serious matter which should be dealt with as soon as possible... you have everything to gain.. her health will improve if you get the correct diagnosis and treatment.

 

[Alyssa]

You are not over reacting... I'm going to be very blunt and to the point... <b>what you are describing are very classic CF symptoms and it is very likely your child does have CF... you should get her to a Certified CF doctor right away and get full genetic testing... </b>yes there are quite a few more genes than just the 97 that they tested for... 1561 to be exact.. some people say 1800, either way they did not look for very many possibilities at all... and again, <b>you have mentioned five very classic CF symptoms... rectal prolapse, smelly poop, poor weight gain, repeat lung infection, and a borderline sweat test result...</b> by the way my daughter's sweat test is 38, my sons is 41... they both have confirmed genetic CF.

This is a very serious matter which should be dealt with as soon as possible... you have everything to gain.. her health will improve if you get the correct diagnosis and treatment.

 

[Alyssa]

You are not over reacting... I'm going to be very blunt and to the point... <b>what you are describing are very classic CF symptoms and it is very likely your child does have CF... you should get her to a Certified CF doctor right away and get full genetic testing... </b>yes there are quite a few more genes than just the 97 that they tested for... 1561 to be exact.. some people say 1800, either way they did not look for very many possibilities at all... and again, <b>you have mentioned five very classic CF symptoms... rectal prolapse, smelly poop, poor weight gain, repeat lung infection, and a borderline sweat test result...</b> by the way my daughter's sweat test is 38, my sons is 41... they both have confirmed genetic CF.

This is a very serious matter which should be dealt with as soon as possible... you have everything to gain.. her health will improve if you get the correct diagnosis and treatment.

 

[Alyssa]

You are not over reacting... I'm going to be very blunt and to the point... <b>what you are describing are very classic CF symptoms and it is very likely your child does have CF... you should get her to a Certified CF doctor right away and get full genetic testing... </b>yes there are quite a few more genes than just the 97 that they tested for... 1561 to be exact.. some people say 1800, either way they did not look for very many possibilities at all... and again, <b>you have mentioned five very classic CF symptoms... rectal prolapse, smelly poop, poor weight gain, repeat lung infection, and a borderline sweat test result...</b> by the way my daughter's sweat test is 38, my sons is 41... they both have confirmed genetic CF.
<br />
<br />This is a very serious matter which should be dealt with as soon as possible... you have everything to gain.. her health will improve if you get the correct diagnosis and treatment.