My doctor refused to test my son when I first brought up cf. Months later when he was still sick, I told the doctor it would make me feel so much better if she'd just order the test, just to rule it out. She said okay but stated that he didn't have the symptoms in her opinion. My neighbor, who had an adult son with cf, had urged me to test him. Anyway, most of me felt so silly asking for this test and felt I was wasting everyone's time, but part of me just wanted to rule it out. I was totally shocked when the test came back positive. Sometimes, as moms, we just have to be the advocate for our kid, even when the professionals don't agree.
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My 4 year old...help, please
- Thread starter guacamole
- Start date
My doctor refused to test my son when I first brought up cf. Months later when he was still sick, I told the doctor it would make me feel so much better if she'd just order the test, just to rule it out. She said okay but stated that he didn't have the symptoms in her opinion. My neighbor, who had an adult son with cf, had urged me to test him. Anyway, most of me felt so silly asking for this test and felt I was wasting everyone's time, but part of me just wanted to rule it out. I was totally shocked when the test came back positive. Sometimes, as moms, we just have to be the advocate for our kid, even when the professionals don't agree.
My doctor refused to test my son when I first brought up cf. Months later when he was still sick, I told the doctor it would make me feel so much better if she'd just order the test, just to rule it out. She said okay but stated that he didn't have the symptoms in her opinion. My neighbor, who had an adult son with cf, had urged me to test him. Anyway, most of me felt so silly asking for this test and felt I was wasting everyone's time, but part of me just wanted to rule it out. I was totally shocked when the test came back positive. Sometimes, as moms, we just have to be the advocate for our kid, even when the professionals don't agree.
My doctor refused to test my son when I first brought up cf. Months later when he was still sick, I told the doctor it would make me feel so much better if she'd just order the test, just to rule it out. She said okay but stated that he didn't have the symptoms in her opinion. My neighbor, who had an adult son with cf, had urged me to test him. Anyway, most of me felt so silly asking for this test and felt I was wasting everyone's time, but part of me just wanted to rule it out. I was totally shocked when the test came back positive. Sometimes, as moms, we just have to be the advocate for our kid, even when the professionals don't agree.
My doctor refused to test my son when I first brought up cf. Months later when he was still sick, I told the doctor it would make me feel so much better if she'd just order the test, just to rule it out. She said okay but stated that he didn't have the symptoms in her opinion. My neighbor, who had an adult son with cf, had urged me to test him. Anyway, most of me felt so silly asking for this test and felt I was wasting everyone's time, but part of me just wanted to rule it out. I was totally shocked when the test came back positive. Sometimes, as moms, we just have to be the advocate for our kid, even when the professionals don't agree.
Welcome to the site. I'm sorry you are struggling to get answers for your child. I don't think it's unreasonable to test for CF, given your child's symptoms. Asthma could also be a component here, but it doesn't sound like it's the only one. My son has an asthma component with his CF, and you are right about the cough. It is a dry cough.
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
Welcome to the site. I'm sorry you are struggling to get answers for your child. I don't think it's unreasonable to test for CF, given your child's symptoms. Asthma could also be a component here, but it doesn't sound like it's the only one. My son has an asthma component with his CF, and you are right about the cough. It is a dry cough.
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
Welcome to the site. I'm sorry you are struggling to get answers for your child. I don't think it's unreasonable to test for CF, given your child's symptoms. Asthma could also be a component here, but it doesn't sound like it's the only one. My son has an asthma component with his CF, and you are right about the cough. It is a dry cough.
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
Welcome to the site. I'm sorry you are struggling to get answers for your child. I don't think it's unreasonable to test for CF, given your child's symptoms. Asthma could also be a component here, but it doesn't sound like it's the only one. My son has an asthma component with his CF, and you are right about the cough. It is a dry cough.
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
Stacey
Welcome to the site. I'm sorry you are struggling to get answers for your child. I don't think it's unreasonable to test for CF, given your child's symptoms. Asthma could also be a component here, but it doesn't sound like it's the only one. My son has an asthma component with his CF, and you are right about the cough. It is a dry cough.
<br />
<br />If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
<br />
<br />Stacey
<br />
<br />If you have insurance, you should call them, and ask if you need a referral to go to the CF clinic. If you do, demand that your doctor send you, or find a doctor who will. I wish you the best. Please let us know how it goes.
<br />
<br />Stacey
My Grandson was just diagnosed in the last week with CF. We have learned alot about CF since then. Now that we know the symptoms we can relate all the signs to this desease. He is 4 1/2 yrs now and I only wish we would have known the signs before. He spent time in the hospital in the winter of his first 2 years and was diagnosed with asthma. So we thought we knew why he was having breathing problems and getting "sinus infections". There was one symptom that we could not figure out and thought he had digestive problems. His doctor was changed and was told of this problem where when he pooped there would be spots of oil in the toilet floating around and his stool was soft. This evidently sparked some interest to her and she sent him to a specialist that set up the sweat test to "rule it out", only it didn't rule it out. It was positive. I am not sure if Missouri test for CF at birth and if they do why it was not found then. If they don't shame on them. We still do not know how severe his CF is and praying to God that it is mild. Some of what we have learned gives us some hope and it is not as bleak as the first little information I read. We can only hope for a cure or at least more progress in treatment.
My Grandson was just diagnosed in the last week with CF. We have learned alot about CF since then. Now that we know the symptoms we can relate all the signs to this desease. He is 4 1/2 yrs now and I only wish we would have known the signs before. He spent time in the hospital in the winter of his first 2 years and was diagnosed with asthma. So we thought we knew why he was having breathing problems and getting "sinus infections". There was one symptom that we could not figure out and thought he had digestive problems. His doctor was changed and was told of this problem where when he pooped there would be spots of oil in the toilet floating around and his stool was soft. This evidently sparked some interest to her and she sent him to a specialist that set up the sweat test to "rule it out", only it didn't rule it out. It was positive. I am not sure if Missouri test for CF at birth and if they do why it was not found then. If they don't shame on them. We still do not know how severe his CF is and praying to God that it is mild. Some of what we have learned gives us some hope and it is not as bleak as the first little information I read. We can only hope for a cure or at least more progress in treatment.
My Grandson was just diagnosed in the last week with CF. We have learned alot about CF since then. Now that we know the symptoms we can relate all the signs to this desease. He is 4 1/2 yrs now and I only wish we would have known the signs before. He spent time in the hospital in the winter of his first 2 years and was diagnosed with asthma. So we thought we knew why he was having breathing problems and getting "sinus infections". There was one symptom that we could not figure out and thought he had digestive problems. His doctor was changed and was told of this problem where when he pooped there would be spots of oil in the toilet floating around and his stool was soft. This evidently sparked some interest to her and she sent him to a specialist that set up the sweat test to "rule it out", only it didn't rule it out. It was positive. I am not sure if Missouri test for CF at birth and if they do why it was not found then. If they don't shame on them. We still do not know how severe his CF is and praying to God that it is mild. Some of what we have learned gives us some hope and it is not as bleak as the first little information I read. We can only hope for a cure or at least more progress in treatment.
My Grandson was just diagnosed in the last week with CF. We have learned alot about CF since then. Now that we know the symptoms we can relate all the signs to this desease. He is 4 1/2 yrs now and I only wish we would have known the signs before. He spent time in the hospital in the winter of his first 2 years and was diagnosed with asthma. So we thought we knew why he was having breathing problems and getting "sinus infections". There was one symptom that we could not figure out and thought he had digestive problems. His doctor was changed and was told of this problem where when he pooped there would be spots of oil in the toilet floating around and his stool was soft. This evidently sparked some interest to her and she sent him to a specialist that set up the sweat test to "rule it out", only it didn't rule it out. It was positive. I am not sure if Missouri test for CF at birth and if they do why it was not found then. If they don't shame on them. We still do not know how severe his CF is and praying to God that it is mild. Some of what we have learned gives us some hope and it is not as bleak as the first little information I read. We can only hope for a cure or at least more progress in treatment.
My Grandson was just diagnosed in the last week with CF. We have learned alot about CF since then. Now that we know the symptoms we can relate all the signs to this desease. He is 4 1/2 yrs now and I only wish we would have known the signs before. He spent time in the hospital in the winter of his first 2 years and was diagnosed with asthma. So we thought we knew why he was having breathing problems and getting "sinus infections". There was one symptom that we could not figure out and thought he had digestive problems. His doctor was changed and was told of this problem where when he pooped there would be spots of oil in the toilet floating around and his stool was soft. This evidently sparked some interest to her and she sent him to a specialist that set up the sweat test to "rule it out", only it didn't rule it out. It was positive. I am not sure if Missouri test for CF at birth and if they do why it was not found then. If they don't shame on them. We still do not know how severe his CF is and praying to God that it is mild. Some of what we have learned gives us some hope and it is not as bleak as the first little information I read. We can only hope for a cure or at least more progress in treatment.
I will just say that our son's (original) pediatrician was convinced he did not have CF. In fact we asked for a blood test(they could not do a sweat test at our local hospital)while he was admitted for observation due to respiratory distress and it was canceled by the doctor because they were that convinced that he could not possibly have CF. When they wanted to admit him yet again I refused and asked for a transfer to a larger hospital a few hours from us where he was given a sweat test and diagnosed with CF. There is a CF care center there and when they came to talk to us they said Luke's symptoms were classic of CF-- frequent,large,bulky stools, poor weight gain, respiratory issues. Anyway I said all of that to say this--it is surprising how much of the medical community knows so little about CF. Go with your instincts and push until you get some answers.
I will just say that our son's (original) pediatrician was convinced he did not have CF. In fact we asked for a blood test(they could not do a sweat test at our local hospital)while he was admitted for observation due to respiratory distress and it was canceled by the doctor because they were that convinced that he could not possibly have CF. When they wanted to admit him yet again I refused and asked for a transfer to a larger hospital a few hours from us where he was given a sweat test and diagnosed with CF. There is a CF care center there and when they came to talk to us they said Luke's symptoms were classic of CF-- frequent,large,bulky stools, poor weight gain, respiratory issues. Anyway I said all of that to say this--it is surprising how much of the medical community knows so little about CF. Go with your instincts and push until you get some answers.
I will just say that our son's (original) pediatrician was convinced he did not have CF. In fact we asked for a blood test(they could not do a sweat test at our local hospital)while he was admitted for observation due to respiratory distress and it was canceled by the doctor because they were that convinced that he could not possibly have CF. When they wanted to admit him yet again I refused and asked for a transfer to a larger hospital a few hours from us where he was given a sweat test and diagnosed with CF. There is a CF care center there and when they came to talk to us they said Luke's symptoms were classic of CF-- frequent,large,bulky stools, poor weight gain, respiratory issues. Anyway I said all of that to say this--it is surprising how much of the medical community knows so little about CF. Go with your instincts and push until you get some answers.
I will just say that our son's (original) pediatrician was convinced he did not have CF. In fact we asked for a blood test(they could not do a sweat test at our local hospital)while he was admitted for observation due to respiratory distress and it was canceled by the doctor because they were that convinced that he could not possibly have CF. When they wanted to admit him yet again I refused and asked for a transfer to a larger hospital a few hours from us where he was given a sweat test and diagnosed with CF. There is a CF care center there and when they came to talk to us they said Luke's symptoms were classic of CF-- frequent,large,bulky stools, poor weight gain, respiratory issues. Anyway I said all of that to say this--it is surprising how much of the medical community knows so little about CF. Go with your instincts and push until you get some answers.
I will just say that our son's (original) pediatrician was convinced he did not have CF. In fact we asked for a blood test(they could not do a sweat test at our local hospital)while he was admitted for observation due to respiratory distress and it was canceled by the doctor because they were that convinced that he could not possibly have CF. When they wanted to admit him yet again I refused and asked for a transfer to a larger hospital a few hours from us where he was given a sweat test and diagnosed with CF. There is a CF care center there and when they came to talk to us they said Luke's symptoms were classic of CF-- frequent,large,bulky stools, poor weight gain, respiratory issues. Anyway I said all of that to say this--it is surprising how much of the medical community knows so little about CF. Go with your instincts and push until you get some answers.