Final Update

F8AW8SU2 · Dec 19, 2007

I posted in the past couple of months about my son Jacob and our journey to find out weather he has CF or not. He appears to me to have had a "typical" history which can be viewed in my other posts, but after visiting with a pediatric pulmonologist today, we have been told in that doctor's opinion that without a doubt my son does not have CF. He will not genetically test because he feels there is no reason to and that if he were somehow to show positive for some mutation that it would be a case for the medical journals! Before you ask, yes this physician was pretty arrogant and adamant in what he knows and what I don't. I do not have the strongest backbone in the world so I didn't push for the test.

He said that with 2 "negative" sweat tests (he only used the results from the certified center) and review of his chest xrays and history that he believes my son to be an intermediate to moderate asthmatic with no specific triggers and that he will probably grow out of it by age 5. He dismissed the digestive issues based on the fact that he has a normal growth pattern for his age and said that we might look into seeing a GI specialist if we are that concerned.

For now our journey ends here. I have had 3 doctor's tell me that my son does not have CF. I will keep a close eye on him and his ailments, and if he has to be hospitalized again for anything to do with his upper respiratory system, I will then pay for the damn test out of my pocket.

Thank you all for being supportive. The stories of the brave kids and adults of this forum touched my heart and I have donated my combined federal campaign donation to the Cystic Fibrosis Foundation this year. I know it isn't much, but I pray that it helps find a cure. Blessings to you all.

Dori and Jacob

F8AW8SU2 · Dec 19, 2007

I posted in the past couple of months about my son Jacob and our journey to find out weather he has CF or not. He appears to me to have had a "typical" history which can be viewed in my other posts, but after visiting with a pediatric pulmonologist today, we have been told in that doctor's opinion that without a doubt my son does not have CF. He will not genetically test because he feels there is no reason to and that if he were somehow to show positive for some mutation that it would be a case for the medical journals! Before you ask, yes this physician was pretty arrogant and adamant in what he knows and what I don't. I do not have the strongest backbone in the world so I didn't push for the test.

He said that with 2 "negative" sweat tests (he only used the results from the certified center) and review of his chest xrays and history that he believes my son to be an intermediate to moderate asthmatic with no specific triggers and that he will probably grow out of it by age 5. He dismissed the digestive issues based on the fact that he has a normal growth pattern for his age and said that we might look into seeing a GI specialist if we are that concerned.

For now our journey ends here. I have had 3 doctor's tell me that my son does not have CF. I will keep a close eye on him and his ailments, and if he has to be hospitalized again for anything to do with his upper respiratory system, I will then pay for the damn test out of my pocket.

Thank you all for being supportive. The stories of the brave kids and adults of this forum touched my heart and I have donated my combined federal campaign donation to the Cystic Fibrosis Foundation this year. I know it isn't much, but I pray that it helps find a cure. Blessings to you all.

Dori and Jacob

F8AW8SU2 · Dec 19, 2007

I posted in the past couple of months about my son Jacob and our journey to find out weather he has CF or not. He appears to me to have had a "typical" history which can be viewed in my other posts, but after visiting with a pediatric pulmonologist today, we have been told in that doctor's opinion that without a doubt my son does not have CF. He will not genetically test because he feels there is no reason to and that if he were somehow to show positive for some mutation that it would be a case for the medical journals! Before you ask, yes this physician was pretty arrogant and adamant in what he knows and what I don't. I do not have the strongest backbone in the world so I didn't push for the test.

He said that with 2 "negative" sweat tests (he only used the results from the certified center) and review of his chest xrays and history that he believes my son to be an intermediate to moderate asthmatic with no specific triggers and that he will probably grow out of it by age 5. He dismissed the digestive issues based on the fact that he has a normal growth pattern for his age and said that we might look into seeing a GI specialist if we are that concerned.

For now our journey ends here. I have had 3 doctor's tell me that my son does not have CF. I will keep a close eye on him and his ailments, and if he has to be hospitalized again for anything to do with his upper respiratory system, I will then pay for the damn test out of my pocket.

Thank you all for being supportive. The stories of the brave kids and adults of this forum touched my heart and I have donated my combined federal campaign donation to the Cystic Fibrosis Foundation this year. I know it isn't much, but I pray that it helps find a cure. Blessings to you all.

Dori and Jacob

F8AW8SU2 · Dec 19, 2007

I posted in the past couple of months about my son Jacob and our journey to find out weather he has CF or not. He appears to me to have had a "typical" history which can be viewed in my other posts, but after visiting with a pediatric pulmonologist today, we have been told in that doctor's opinion that without a doubt my son does not have CF. He will not genetically test because he feels there is no reason to and that if he were somehow to show positive for some mutation that it would be a case for the medical journals! Before you ask, yes this physician was pretty arrogant and adamant in what he knows and what I don't. I do not have the strongest backbone in the world so I didn't push for the test.

He said that with 2 "negative" sweat tests (he only used the results from the certified center) and review of his chest xrays and history that he believes my son to be an intermediate to moderate asthmatic with no specific triggers and that he will probably grow out of it by age 5. He dismissed the digestive issues based on the fact that he has a normal growth pattern for his age and said that we might look into seeing a GI specialist if we are that concerned.

For now our journey ends here. I have had 3 doctor's tell me that my son does not have CF. I will keep a close eye on him and his ailments, and if he has to be hospitalized again for anything to do with his upper respiratory system, I will then pay for the damn test out of my pocket.

Thank you all for being supportive. The stories of the brave kids and adults of this forum touched my heart and I have donated my combined federal campaign donation to the Cystic Fibrosis Foundation this year. I know it isn't much, but I pray that it helps find a cure. Blessings to you all.

Dori and Jacob

F8AW8SU2 · Dec 19, 2007

I posted in the past couple of months about my son Jacob and our journey to find out weather he has CF or not. He appears to me to have had a "typical" history which can be viewed in my other posts, but after visiting with a pediatric pulmonologist today, we have been told in that doctor's opinion that without a doubt my son does not have CF. He will not genetically test because he feels there is no reason to and that if he were somehow to show positive for some mutation that it would be a case for the medical journals! Before you ask, yes this physician was pretty arrogant and adamant in what he knows and what I don't. I do not have the strongest backbone in the world so I didn't push for the test.

He said that with 2 "negative" sweat tests (he only used the results from the certified center) and review of his chest xrays and history that he believes my son to be an intermediate to moderate asthmatic with no specific triggers and that he will probably grow out of it by age 5. He dismissed the digestive issues based on the fact that he has a normal growth pattern for his age and said that we might look into seeing a GI specialist if we are that concerned.

For now our journey ends here. I have had 3 doctor's tell me that my son does not have CF. I will keep a close eye on him and his ailments, and if he has to be hospitalized again for anything to do with his upper respiratory system, I will then pay for the damn test out of my pocket.

Thank you all for being supportive. The stories of the brave kids and adults of this forum touched my heart and I have donated my combined federal campaign donation to the Cystic Fibrosis Foundation this year. I know it isn't much, but I pray that it helps find a cure. Blessings to you all.

Dori and Jacob

Alyssa · Dec 20, 2007

I would defiantly follow through with the GI stuff though, maybe you will get a doctor there who is willing to pursue things again, if nothing else you really need to know if he could benefit from enzymes.

I would also look for any opportunity you might be given to see if he has he vas deferins or not. This might tip the scales for someone to test him genetically too. Some people report that doctors can just feel under the testicles for them, but I also think they can look for them with an ultrasound.

Other than that.... let's just hope the arrogant doctor is correct. Best wishes.... and I hope to never hear from you again

hehehehe

Alyssa · Dec 20, 2007

I would defiantly follow through with the GI stuff though, maybe you will get a doctor there who is willing to pursue things again, if nothing else you really need to know if he could benefit from enzymes.

I would also look for any opportunity you might be given to see if he has he vas deferins or not. This might tip the scales for someone to test him genetically too. Some people report that doctors can just feel under the testicles for them, but I also think they can look for them with an ultrasound.

Other than that.... let's just hope the arrogant doctor is correct. Best wishes.... and I hope to never hear from you again

hehehehe

Alyssa · Dec 20, 2007

I would defiantly follow through with the GI stuff though, maybe you will get a doctor there who is willing to pursue things again, if nothing else you really need to know if he could benefit from enzymes.

I would also look for any opportunity you might be given to see if he has he vas deferins or not. This might tip the scales for someone to test him genetically too. Some people report that doctors can just feel under the testicles for them, but I also think they can look for them with an ultrasound.

Other than that.... let's just hope the arrogant doctor is correct. Best wishes.... and I hope to never hear from you again

hehehehe

Alyssa · Dec 20, 2007

I would defiantly follow through with the GI stuff though, maybe you will get a doctor there who is willing to pursue things again, if nothing else you really need to know if he could benefit from enzymes.

I would also look for any opportunity you might be given to see if he has he vas deferins or not. This might tip the scales for someone to test him genetically too. Some people report that doctors can just feel under the testicles for them, but I also think they can look for them with an ultrasound.

Other than that.... let's just hope the arrogant doctor is correct. Best wishes.... and I hope to never hear from you again

hehehehe

Alyssa · Dec 20, 2007

I would defiantly follow through with the GI stuff though, maybe you will get a doctor there who is willing to pursue things again, if nothing else you really need to know if he could benefit from enzymes.

I would also look for any opportunity you might be given to see if he has he vas deferins or not. This might tip the scales for someone to test him genetically too. Some people report that doctors can just feel under the testicles for them, but I also think they can look for them with an ultrasound.

Other than that.... let's just hope the arrogant doctor is correct. Best wishes.... and I hope to never hear from you again

hehehehe

JORDYSMOM · Dec 20, 2007