A way we self tested Avery was we did the poop test, she was going #2 about 5-6 times a day with greasy foul smelling poop. So the next time she pooped we grabbed her diaper and I shook a quit a bit of it in the toliet and it floated. That is a pretty accurate sign of CF, because of the grease in the poop.
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Unsure need advice
- Thread starter jaazavala
- Start date
A way we self tested Avery was we did the poop test, she was going #2 about 5-6 times a day with greasy foul smelling poop. So the next time she pooped we grabbed her diaper and I shook a quit a bit of it in the toliet and it floated. That is a pretty accurate sign of CF, because of the grease in the poop.
A way we self tested Avery was we did the poop test, she was going #2 about 5-6 times a day with greasy foul smelling poop. So the next time she pooped we grabbed her diaper and I shook a quit a bit of it in the toliet and it floated. That is a pretty accurate sign of CF, because of the grease in the poop.
A way we self tested Avery was we did the poop test, she was going #2 about 5-6 times a day with greasy foul smelling poop. So the next time she pooped we grabbed her diaper and I shook a quit a bit of it in the toliet and it floated. That is a pretty accurate sign of CF, because of the grease in the poop.
A way we self tested Avery was we did the poop test, she was going #2 about 5-6 times a day with greasy foul smelling poop. So the next time she pooped we grabbed her diaper and I shook a quit a bit of it in the toliet and it floated. That is a pretty accurate sign of CF, because of the grease in the poop.
Ashley,
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
Ashley,
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
Ashley,
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
Ashley,
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
Ashley,
<br />i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
<br />i just wanted to say that my 6 year old hardly ever runs fevers when he is sick. Everytime i call the peds office cuz he is getting sick they always say is he running a fever and I have to explain that he has never had a fever when he has been sick. Or while being hospitalized for exacerbations. It's weird but thats how Austin is. There had been numerous times I have taken him to the doc also and he has had ear infections that i wasnt awre of. i just knew he wasn't himself. We also had a Jack Russel that would sniff at his ears every time he had a ear infection and thats how i knew most of the time. I know thats sick but thats how it was.
shimmereestar
New member
I am so sorry about all of your experiences so far. It sounds like you have been through so many ups and downs. I'm praying for you and your family. I did want you to know that my daughter nevers runs a fever and she has been treated for pneumonia twice and bronchitis (Alyssa I think you might be right when they say lung infections don't usually produce a fever). Definitey pursue the genetic testing (that's how we finally found out), and always go with your mommy instinct. Ellie has also had to be hospitialized for retracting and low oxygen levels before, it's so scary.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
shimmereestar
New member
I am so sorry about all of your experiences so far. It sounds like you have been through so many ups and downs. I'm praying for you and your family. I did want you to know that my daughter nevers runs a fever and she has been treated for pneumonia twice and bronchitis (Alyssa I think you might be right when they say lung infections don't usually produce a fever). Definitey pursue the genetic testing (that's how we finally found out), and always go with your mommy instinct. Ellie has also had to be hospitialized for retracting and low oxygen levels before, it's so scary.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
shimmereestar
New member
I am so sorry about all of your experiences so far. It sounds like you have been through so many ups and downs. I'm praying for you and your family. I did want you to know that my daughter nevers runs a fever and she has been treated for pneumonia twice and bronchitis (Alyssa I think you might be right when they say lung infections don't usually produce a fever). Definitey pursue the genetic testing (that's how we finally found out), and always go with your mommy instinct. Ellie has also had to be hospitialized for retracting and low oxygen levels before, it's so scary.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
shimmereestar
New member
I am so sorry about all of your experiences so far. It sounds like you have been through so many ups and downs. I'm praying for you and your family. I did want you to know that my daughter nevers runs a fever and she has been treated for pneumonia twice and bronchitis (Alyssa I think you might be right when they say lung infections don't usually produce a fever). Definitey pursue the genetic testing (that's how we finally found out), and always go with your mommy instinct. Ellie has also had to be hospitialized for retracting and low oxygen levels before, it's so scary.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
shimmereestar
New member
I am so sorry about all of your experiences so far. It sounds like you have been through so many ups and downs. I'm praying for you and your family. I did want you to know that my daughter nevers runs a fever and she has been treated for pneumonia twice and bronchitis (Alyssa I think you might be right when they say lung infections don't usually produce a fever). Definitey pursue the genetic testing (that's how we finally found out), and always go with your mommy instinct. Ellie has also had to be hospitialized for retracting and low oxygen levels before, it's so scary.
<br />
<br />
<br />Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
<br />
<br />
<br />Also, being a proud Texan, I want to apologize and am horrified for your horrible experience in the hospital (alhtough I do not live in Houston). Trust me not all hospitals here are like that. Definitely try to find out who they were and make a complaint, your experience was NOT okay. I hope you find answers soon. I'll be thinking of you and anything you need just let us know.
We had the sweat test done yesterday and I got the results back today. It was a 10. I am glad for that except that now we are going to have to wait for genetic testing to see if she really does have cf or not. I called the doctors 3 times today to get things sorted out. She has not called me back yet but the nurse did tell me that to do genetic testing I have to be refered to the genetic testing center at the university of michigan (the same place we had the sweat test done) which is an hr drive for us. I think my insurane will cover it but the copays and deductables are outrages. I am already sitting on a couple thousand dollars of medical bills.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
We had the sweat test done yesterday and I got the results back today. It was a 10. I am glad for that except that now we are going to have to wait for genetic testing to see if she really does have cf or not. I called the doctors 3 times today to get things sorted out. She has not called me back yet but the nurse did tell me that to do genetic testing I have to be refered to the genetic testing center at the university of michigan (the same place we had the sweat test done) which is an hr drive for us. I think my insurane will cover it but the copays and deductables are outrages. I am already sitting on a couple thousand dollars of medical bills.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
We had the sweat test done yesterday and I got the results back today. It was a 10. I am glad for that except that now we are going to have to wait for genetic testing to see if she really does have cf or not. I called the doctors 3 times today to get things sorted out. She has not called me back yet but the nurse did tell me that to do genetic testing I have to be refered to the genetic testing center at the university of michigan (the same place we had the sweat test done) which is an hr drive for us. I think my insurane will cover it but the copays and deductables are outrages. I am already sitting on a couple thousand dollars of medical bills.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
We had the sweat test done yesterday and I got the results back today. It was a 10. I am glad for that except that now we are going to have to wait for genetic testing to see if she really does have cf or not. I called the doctors 3 times today to get things sorted out. She has not called me back yet but the nurse did tell me that to do genetic testing I have to be refered to the genetic testing center at the university of michigan (the same place we had the sweat test done) which is an hr drive for us. I think my insurane will cover it but the copays and deductables are outrages. I am already sitting on a couple thousand dollars of medical bills.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
I have a few more questions if anyone has answers for me.
I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
Does everyone have every symptom or can some people only have lung problems with others only GI problems?
It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
Just for age appropriate symptoms she will be 1 yrs old on sunday.
She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
She has had Urinary tract infections.
She has had Parengitis a few times.
She sweats alot.
She does not get fevers even with ear infections and uti's.
She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
We had the sweat test done yesterday and I got the results back today. It was a 10. I am glad for that except that now we are going to have to wait for genetic testing to see if she really does have cf or not. I called the doctors 3 times today to get things sorted out. She has not called me back yet but the nurse did tell me that to do genetic testing I have to be refered to the genetic testing center at the university of michigan (the same place we had the sweat test done) which is an hr drive for us. I think my insurane will cover it but the copays and deductables are outrages. I am already sitting on a couple thousand dollars of medical bills.
<br />
<br />I have a few more questions if anyone has answers for me.
<br />
<br />I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
<br />
<br />Does everyone have every symptom or can some people only have lung problems with others only GI problems?
<br />
<br />It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
<br />
<br />Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
<br />Just for age appropriate symptoms she will be 1 yrs old on sunday.
<br />
<br />She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
<br />
<br />She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
<br />
<br />She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
<br />
<br />She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
<br />
<br />She has had Urinary tract infections.
<br />
<br />She has had Parengitis a few times.
<br />
<br />She sweats alot.
<br />
<br />She does not get fevers even with ear infections and uti's.
<br />
<br />She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
<br />
<br />They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.
<br />
<br />I have a few more questions if anyone has answers for me.
<br />
<br />I know that lung problems are a big symptom of cf and lacking the enzyme to break down food but what are the other symptoms? None are too small.
<br />
<br />Does everyone have every symptom or can some people only have lung problems with others only GI problems?
<br />
<br />It the sweat cloride number a symptom? Maybe one that everyone does not have and that would explane why not everyone that is positive has a high number.
<br />
<br />Let me tell you all the "symptoms" my daughter has and you can tell me if it is something that you have seen befor.
<br />Just for age appropriate symptoms she will be 1 yrs old on sunday.
<br />
<br />She has frequent lung infections despite the use of singulair daily and then we switched to pulmacort with no improvement either.
<br />
<br />She had one ear infection that took 3 months to get rid of even with using antibiotic injections.
<br />
<br />She often (almost always) has a runny or stuffy nose. She also get green or yellow discarge from her eyes. It was worse when she was a little baby. She also sometimes get the white streeks from her eyes but not everyday.
<br />
<br />She is almost always constipated, but a lot of the time it is not hard. But she still grunts and cries and sometimes throws up when she goes. (I did the poop test and it does not float.) She will also have the whole pices of food in her diapers sometimes but she deffinitly does not have failure to thrive. She is 25lbs and she has been in 2t clothes for a wile and she will only be 1 on sunday.
<br />
<br />She has had Urinary tract infections.
<br />
<br />She has had Parengitis a few times.
<br />
<br />She sweats alot.
<br />
<br />She does not get fevers even with ear infections and uti's.
<br />
<br />She has acid reflux. She was spitting up blood at 5wks old but she never acts like she is in pain.
<br />
<br />They say that newborns need to eat every 2 to 3 hrs but she always nursed every 45 min. She is just starting to go 2hrs without nursing and she still nurses all night long.