Testing Results Back

MomOfMiles · Nov 21, 2008

My son is 4 months old. He was hospitalized for Failure To Thrive 3 weeks ago and during his stay was sweat-tested. His level was 42, so they took a blood sample for the gene testing (23 common mutations).

I FINALLY got in touch with the doctor's office today and they told me his test came back "normal", no mutations.

My question is, do I rejoice? Do I ask for a repeated sweat test? The nurse I talked to about the results on the phone gave me the impression that they would likely refer my son to the CF clinic in Lexington.

We have moved since he was hospitalized and he has a new pediatrician. We see her on Monday for his 4 Month Well Child. At our first appointment with her, we discussed the testing and I asked what her course of action would probably be if the test came back negative. She indicated that she would pursue more tests, so that is what I anticipate for Monday.

I'm cautiously relieved, but I still don't feel at ease. We've only told my parents about the results, and they act like I'm neurotic for wanting to have more tests done. At this point, I really just want a repeat sweat test to see if it was elevated for some other reason during his hospitalization.

Does anyone have any advice? Am I being crazy? Am I not being crazy enough?

MomOfMiles · Nov 21, 2008

My son is 4 months old. He was hospitalized for Failure To Thrive 3 weeks ago and during his stay was sweat-tested. His level was 42, so they took a blood sample for the gene testing (23 common mutations).

I FINALLY got in touch with the doctor's office today and they told me his test came back "normal", no mutations.

My question is, do I rejoice? Do I ask for a repeated sweat test? The nurse I talked to about the results on the phone gave me the impression that they would likely refer my son to the CF clinic in Lexington.

We have moved since he was hospitalized and he has a new pediatrician. We see her on Monday for his 4 Month Well Child. At our first appointment with her, we discussed the testing and I asked what her course of action would probably be if the test came back negative. She indicated that she would pursue more tests, so that is what I anticipate for Monday.

I'm cautiously relieved, but I still don't feel at ease. We've only told my parents about the results, and they act like I'm neurotic for wanting to have more tests done. At this point, I really just want a repeat sweat test to see if it was elevated for some other reason during his hospitalization.

Does anyone have any advice? Am I being crazy? Am I not being crazy enough?

MomOfMiles · Nov 21, 2008

My son is 4 months old. He was hospitalized for Failure To Thrive 3 weeks ago and during his stay was sweat-tested. His level was 42, so they took a blood sample for the gene testing (23 common mutations).

I FINALLY got in touch with the doctor's office today and they told me his test came back "normal", no mutations.

My question is, do I rejoice? Do I ask for a repeated sweat test? The nurse I talked to about the results on the phone gave me the impression that they would likely refer my son to the CF clinic in Lexington.

We have moved since he was hospitalized and he has a new pediatrician. We see her on Monday for his 4 Month Well Child. At our first appointment with her, we discussed the testing and I asked what her course of action would probably be if the test came back negative. She indicated that she would pursue more tests, so that is what I anticipate for Monday.

I'm cautiously relieved, but I still don't feel at ease. We've only told my parents about the results, and they act like I'm neurotic for wanting to have more tests done. At this point, I really just want a repeat sweat test to see if it was elevated for some other reason during his hospitalization.

Does anyone have any advice? Am I being crazy? Am I not being crazy enough?

MomOfMiles · Nov 21, 2008

My son is 4 months old. He was hospitalized for Failure To Thrive 3 weeks ago and during his stay was sweat-tested. His level was 42, so they took a blood sample for the gene testing (23 common mutations).

I FINALLY got in touch with the doctor's office today and they told me his test came back "normal", no mutations.

My question is, do I rejoice? Do I ask for a repeated sweat test? The nurse I talked to about the results on the phone gave me the impression that they would likely refer my son to the CF clinic in Lexington.

We have moved since he was hospitalized and he has a new pediatrician. We see her on Monday for his 4 Month Well Child. At our first appointment with her, we discussed the testing and I asked what her course of action would probably be if the test came back negative. She indicated that she would pursue more tests, so that is what I anticipate for Monday.

I'm cautiously relieved, but I still don't feel at ease. We've only told my parents about the results, and they act like I'm neurotic for wanting to have more tests done. At this point, I really just want a repeat sweat test to see if it was elevated for some other reason during his hospitalization.

Does anyone have any advice? Am I being crazy? Am I not being crazy enough?

MomOfMiles · Nov 21, 2008

My son is 4 months old. He was hospitalized for Failure To Thrive 3 weeks ago and during his stay was sweat-tested. His level was 42, so they took a blood sample for the gene testing (23 common mutations).
 
 I FINALLY got in touch with the doctor's office today and they told me his test came back "normal", no mutations.
 
 My question is, do I rejoice? Do I ask for a repeated sweat test? The nurse I talked to about the results on the phone gave me the impression that they would likely refer my son to the CF clinic in Lexington.
 
 We have moved since he was hospitalized and he has a new pediatrician. We see her on Monday for his 4 Month Well Child. At our first appointment with her, we discussed the testing and I asked what her course of action would probably be if the test came back negative. She indicated that she would pursue more tests, so that is what I anticipate for Monday.
 
 I'm cautiously relieved, but I still don't feel at ease. We've only told my parents about the results, and they act like I'm neurotic for wanting to have more tests done. At this point, I really just want a repeat sweat test to see if it was elevated for some other reason during his hospitalization.
 
 Does anyone have any advice? Am I being crazy? Am I not being crazy enough?

daisymae · Nov 21, 2008

I can completely sympathize with how you feel. I don't think you are being crazy and it's good if the doctors want to do more testing. We are in a similar situation to you. My youngest daughter's initial screenings came back negative but she had a high normal sweat test. My family thought I was crazy for not being completely relieved that her 23 mutation test came back negative. A doctor recommended the full genetic screen because he thought she might have atypical CF. We got her results back and she is in essence a carrier (she carries the 5T variant) which is what made her sweat test borderline for an infant but she does not have CF. It's hard not to feel like you're overreacting when family takes the screening results to mean that there is no way your child can have CF. Big Hugs! Your the mom, go with your instinct! <img src="i/expressions/face-icon-small-smile.gif" border="0">

daisymae · Nov 21, 2008

I can completely sympathize with how you feel. I don't think you are being crazy and it's good if the doctors want to do more testing. We are in a similar situation to you. My youngest daughter's initial screenings came back negative but she had a high normal sweat test. My family thought I was crazy for not being completely relieved that her 23 mutation test came back negative. A doctor recommended the full genetic screen because he thought she might have atypical CF. We got her results back and she is in essence a carrier (she carries the 5T variant) which is what made her sweat test borderline for an infant but she does not have CF. It's hard not to feel like you're overreacting when family takes the screening results to mean that there is no way your child can have CF. Big Hugs! Your the mom, go with your instinct! <img src="i/expressions/face-icon-small-smile.gif" border="0">

daisymae · Nov 21, 2008

I can completely sympathize with how you feel. I don't think you are being crazy and it's good if the doctors want to do more testing. We are in a similar situation to you. My youngest daughter's initial screenings came back negative but she had a high normal sweat test. My family thought I was crazy for not being completely relieved that her 23 mutation test came back negative. A doctor recommended the full genetic screen because he thought she might have atypical CF. We got her results back and she is in essence a carrier (she carries the 5T variant) which is what made her sweat test borderline for an infant but she does not have CF. It's hard not to feel like you're overreacting when family takes the screening results to mean that there is no way your child can have CF. Big Hugs! Your the mom, go with your instinct! <img src="i/expressions/face-icon-small-smile.gif" border="0">

daisymae · Nov 21, 2008

I can completely sympathize with how you feel. I don't think you are being crazy and it's good if the doctors want to do more testing. We are in a similar situation to you. My youngest daughter's initial screenings came back negative but she had a high normal sweat test. My family thought I was crazy for not being completely relieved that her 23 mutation test came back negative. A doctor recommended the full genetic screen because he thought she might have atypical CF. We got her results back and she is in essence a carrier (she carries the 5T variant) which is what made her sweat test borderline for an infant but she does not have CF. It's hard not to feel like you're overreacting when family takes the screening results to mean that there is no way your child can have CF. Big Hugs! Your the mom, go with your instinct! <img src="i/expressions/face-icon-small-smile.gif" border="0">

daisymae · Nov 21, 2008

I can completely sympathize with how you feel. I don't think you are being crazy and it's good if the doctors want to do more testing. We are in a similar situation to you. My youngest daughter's initial screenings came back negative but she had a high normal sweat test. My family thought I was crazy for not being completely relieved that her 23 mutation test came back negative. A doctor recommended the full genetic screen because he thought she might have atypical CF. We got her results back and she is in essence a carrier (she carries the 5T variant) which is what made her sweat test borderline for an infant but she does not have CF. It's hard not to feel like you're overreacting when family takes the screening results to mean that there is no way your child can have CF. Big Hugs! Your the mom, go with your instinct! <img src="i/expressions/face-icon-small-smile.gif" border="0">

beccasmom · Nov 21, 2008

I would do the whole gene testing and also have a repeat sweat test. If the repeat sweat test is still high you really need to pursue the whole gene testing. This is exactly what happened to my daughter. She was tested because of failure to thrive, had a boarderline sweat test, actually had one gene on the 23 screen and our doctor said not to worry she was just a carrier. She continued to not do well and then almost died before she was diagnosed.

beccasmom · Nov 21, 2008

I would do the whole gene testing and also have a repeat sweat test. If the repeat sweat test is still high you really need to pursue the whole gene testing. This is exactly what happened to my daughter. She was tested because of failure to thrive, had a boarderline sweat test, actually had one gene on the 23 screen and our doctor said not to worry she was just a carrier. She continued to not do well and then almost died before she was diagnosed.

beccasmom · Nov 21, 2008

I would do the whole gene testing and also have a repeat sweat test. If the repeat sweat test is still high you really need to pursue the whole gene testing. This is exactly what happened to my daughter. She was tested because of failure to thrive, had a boarderline sweat test, actually had one gene on the 23 screen and our doctor said not to worry she was just a carrier. She continued to not do well and then almost died before she was diagnosed.

beccasmom · Nov 21, 2008

I would do the whole gene testing and also have a repeat sweat test. If the repeat sweat test is still high you really need to pursue the whole gene testing. This is exactly what happened to my daughter. She was tested because of failure to thrive, had a boarderline sweat test, actually had one gene on the 23 screen and our doctor said not to worry she was just a carrier. She continued to not do well and then almost died before she was diagnosed.

beccasmom · Nov 21, 2008

I would do the whole gene testing and also have a repeat sweat test. If the repeat sweat test is still high you really need to pursue the whole gene testing. This is exactly what happened to my daughter. She was tested because of failure to thrive, had a boarderline sweat test, actually had one gene on the 23 screen and our doctor said not to worry she was just a carrier. She continued to not do well and then almost died before she was diagnosed.

kate620 · Nov 21, 2008

My story is similar to beccasmom. My daughter was tested at 2 for failure to thrive but she had about 6 sweat tests and they were all different. Some were negative, some borderline, and some slightly elevated. They only found one gene and said she was only a carrier. She absorbed her fats so she did not need enzymes. She was even in the hospital for RSV at 2 1/2 and they still did not think she had cf. It took another year for them to diagnose her and that was after I took her to another clinic and they did a throat swab and it came back growing pseudemonas so that is what they used to diagnose her. So, my advice is DEFINATELY do more testing. You are NOT crazy! There were so many times I wanted to rejoice when they said they did not think she had it but I knew something was not right. All my family thought I should leave it alone too except my mom. She was the one who arranged for another clinics opinion and if she had not, I don't know if my daughter would be alive today. I will keep you in my prayers that your results will not be the same but don't leave it alone til every last possible test has been done.

Katie

kate620 · Nov 21, 2008

My story is similar to beccasmom. My daughter was tested at 2 for failure to thrive but she had about 6 sweat tests and they were all different. Some were negative, some borderline, and some slightly elevated. They only found one gene and said she was only a carrier. She absorbed her fats so she did not need enzymes. She was even in the hospital for RSV at 2 1/2 and they still did not think she had cf. It took another year for them to diagnose her and that was after I took her to another clinic and they did a throat swab and it came back growing pseudemonas so that is what they used to diagnose her. So, my advice is DEFINATELY do more testing. You are NOT crazy! There were so many times I wanted to rejoice when they said they did not think she had it but I knew something was not right. All my family thought I should leave it alone too except my mom. She was the one who arranged for another clinics opinion and if she had not, I don't know if my daughter would be alive today. I will keep you in my prayers that your results will not be the same but don't leave it alone til every last possible test has been done.

Katie

kate620 · Nov 21, 2008

My story is similar to beccasmom. My daughter was tested at 2 for failure to thrive but she had about 6 sweat tests and they were all different. Some were negative, some borderline, and some slightly elevated. They only found one gene and said she was only a carrier. She absorbed her fats so she did not need enzymes. She was even in the hospital for RSV at 2 1/2 and they still did not think she had cf. It took another year for them to diagnose her and that was after I took her to another clinic and they did a throat swab and it came back growing pseudemonas so that is what they used to diagnose her. So, my advice is DEFINATELY do more testing. You are NOT crazy! There were so many times I wanted to rejoice when they said they did not think she had it but I knew something was not right. All my family thought I should leave it alone too except my mom. She was the one who arranged for another clinics opinion and if she had not, I don't know if my daughter would be alive today. I will keep you in my prayers that your results will not be the same but don't leave it alone til every last possible test has been done.

Katie

kate620 · Nov 21, 2008

My story is similar to beccasmom. My daughter was tested at 2 for failure to thrive but she had about 6 sweat tests and they were all different. Some were negative, some borderline, and some slightly elevated. They only found one gene and said she was only a carrier. She absorbed her fats so she did not need enzymes. She was even in the hospital for RSV at 2 1/2 and they still did not think she had cf. It took another year for them to diagnose her and that was after I took her to another clinic and they did a throat swab and it came back growing pseudemonas so that is what they used to diagnose her. So, my advice is DEFINATELY do more testing. You are NOT crazy! There were so many times I wanted to rejoice when they said they did not think she had it but I knew something was not right. All my family thought I should leave it alone too except my mom. She was the one who arranged for another clinics opinion and if she had not, I don't know if my daughter would be alive today. I will keep you in my prayers that your results will not be the same but don't leave it alone til every last possible test has been done.

Katie

kate620 · Nov 21, 2008

My story is similar to beccasmom. My daughter was tested at 2 for failure to thrive but she had about 6 sweat tests and they were all different. Some were negative, some borderline, and some slightly elevated. They only found one gene and said she was only a carrier. She absorbed her fats so she did not need enzymes. She was even in the hospital for RSV at 2 1/2 and they still did not think she had cf. It took another year for them to diagnose her and that was after I took her to another clinic and they did a throat swab and it came back growing pseudemonas so that is what they used to diagnose her. So, my advice is DEFINATELY do more testing. You are NOT crazy! There were so many times I wanted to rejoice when they said they did not think she had it but I knew something was not right. All my family thought I should leave it alone too except my mom. She was the one who arranged for another clinics opinion and if she had not, I don't know if my daughter would be alive today. I will keep you in my prayers that your results will not be the same but don't leave it alone til every last possible test has been done.
 
 Katie

Testing Results Back

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