any thoughts on this please?

[MaksNana]

Hi, and welcome to the site.

I so totally agree with Heather, the 59 sweat test alone should had been enough for them to refer you to a CF Clinic . You may have sweat test done that your child might not even have shown any sweat, they may have to do 10 sweat test sometimes.

Your child should have cultures done and chest x-ray, and the genetic test done which a CF Clinic would do all these things. There are some CF patients that have severe constipation all the time and have to take Miralax forever and be Pancreatic Insufficient. The norm is the kiddoes will have severe diarrhea to be PI. This might be to much to absorb all at once. The only reason I have brought that up is because Makailyn is PI, but has to take alot , I mean alot , of Miralax everyday, and she is PI........

It's a crazy complex disease,,,,,,, I pray your child doesn't have CF........ We are here to try to help each other the best we can , and learn from each other , and we will be here for you. Keep us posted on what you find out.

God Bless you and your family, Karla <img src="i/expressions/heart.gif" border="0">

 

[MaksNana]

Hi, and welcome to the site.

I so totally agree with Heather, the 59 sweat test alone should had been enough for them to refer you to a CF Clinic . You may have sweat test done that your child might not even have shown any sweat, they may have to do 10 sweat test sometimes.

Your child should have cultures done and chest x-ray, and the genetic test done which a CF Clinic would do all these things. There are some CF patients that have severe constipation all the time and have to take Miralax forever and be Pancreatic Insufficient. The norm is the kiddoes will have severe diarrhea to be PI. This might be to much to absorb all at once. The only reason I have brought that up is because Makailyn is PI, but has to take alot , I mean alot , of Miralax everyday, and she is PI........

It's a crazy complex disease,,,,,,, I pray your child doesn't have CF........ We are here to try to help each other the best we can , and learn from each other , and we will be here for you. Keep us posted on what you find out.

God Bless you and your family, Karla <img src="i/expressions/heart.gif" border="0">

 

[MaksNana]

Hi, and welcome to the site.

I so totally agree with Heather, the 59 sweat test alone should had been enough for them to refer you to a CF Clinic . You may have sweat test done that your child might not even have shown any sweat, they may have to do 10 sweat test sometimes.

Your child should have cultures done and chest x-ray, and the genetic test done which a CF Clinic would do all these things. There are some CF patients that have severe constipation all the time and have to take Miralax forever and be Pancreatic Insufficient. The norm is the kiddoes will have severe diarrhea to be PI. This might be to much to absorb all at once. The only reason I have brought that up is because Makailyn is PI, but has to take alot , I mean alot , of Miralax everyday, and she is PI........

It's a crazy complex disease,,,,,,, I pray your child doesn't have CF........ We are here to try to help each other the best we can , and learn from each other , and we will be here for you. Keep us posted on what you find out.

God Bless you and your family, Karla <img src="i/expressions/heart.gif" border="0">

 

[MaksNana]

Hi, and welcome to the site.

I so totally agree with Heather, the 59 sweat test alone should had been enough for them to refer you to a CF Clinic . You may have sweat test done that your child might not even have shown any sweat, they may have to do 10 sweat test sometimes.

Your child should have cultures done and chest x-ray, and the genetic test done which a CF Clinic would do all these things. There are some CF patients that have severe constipation all the time and have to take Miralax forever and be Pancreatic Insufficient. The norm is the kiddoes will have severe diarrhea to be PI. This might be to much to absorb all at once. The only reason I have brought that up is because Makailyn is PI, but has to take alot , I mean alot , of Miralax everyday, and she is PI........

It's a crazy complex disease,,,,,,, I pray your child doesn't have CF........ We are here to try to help each other the best we can , and learn from each other , and we will be here for you. Keep us posted on what you find out.

God Bless you and your family, Karla <img src="i/expressions/heart.gif" border="0">

 

[MaksNana]

Hi, and welcome to the site.
<br />
<br />I so totally agree with Heather, the 59 sweat test alone should had been enough for them to refer you to a CF Clinic . You may have sweat test done that your child might not even have shown any sweat, they may have to do 10 sweat test sometimes.
<br />
<br />Your child should have cultures done and chest x-ray, and the genetic test done which a CF Clinic would do all these things. There are some CF patients that have severe constipation all the time and have to take Miralax forever and be Pancreatic Insufficient. The norm is the kiddoes will have severe diarrhea to be PI. This might be to much to absorb all at once. The only reason I have brought that up is because Makailyn is PI, but has to take alot , I mean alot , of Miralax everyday, and she is PI........
<br />
<br />It's a crazy complex disease,,,,,,, I pray your child doesn't have CF........ We are here to try to help each other the best we can , and learn from each other , and we will be here for you. Keep us posted on what you find out.
<br />
<br />God Bless you and your family, Karla <img src="i/expressions/heart.gif" border="0">

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tdubb</b></i>

Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...</end quote></div>


If your doctor isn't listening you can always go to another doctor.

You can also go to your local CF Center and they will get her tested.

It shouldn't be this complicated and there are several ways to get to the bottom of this quickly.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/">http://www.cff.org/LivingWithC...accreditedCareCenters/</a>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tdubb</b></i>

Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...</end quote></div>


If your doctor isn't listening you can always go to another doctor.

You can also go to your local CF Center and they will get her tested.

It shouldn't be this complicated and there are several ways to get to the bottom of this quickly.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/">http://www.cff.org/LivingWithC...accreditedCareCenters/</a>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tdubb</b></i>

Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...</end quote></div>


If your doctor isn't listening you can always go to another doctor.

You can also go to your local CF Center and they will get her tested.

It shouldn't be this complicated and there are several ways to get to the bottom of this quickly.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/">http://www.cff.org/LivingWithC...accreditedCareCenters/</a>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tdubb</b></i>

Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...</end quote>


If your doctor isn't listening you can always go to another doctor.

You can also go to your local CF Center and they will get her tested.

It shouldn't be this complicated and there are several ways to get to the bottom of this quickly.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/">http://www.cff.org/LivingWithC...accreditedCareCenters/</a>

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tdubb</b></i>
<br />
<br />Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...</end quote>
<br />
<br />
<br />If your doctor isn't listening you can always go to another doctor.
<br />
<br />You can also go to your local CF Center and they will get her tested.
<br />
<br />It shouldn't be this complicated and there are several ways to get to the bottom of this quickly.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/">http://www.cff.org/LivingWithC...accreditedCareCenters/</a>

 

[KAC1210]

I agree I would definately not give up until I got furthur testing. My son's sweat test numbers were 109 and 104. You can't give up when it comes to your kids. I would try to find a CF center and talk to someone there!

 

[KAC1210]

I agree I would definately not give up until I got furthur testing. My son's sweat test numbers were 109 and 104. You can't give up when it comes to your kids. I would try to find a CF center and talk to someone there!

 

[KAC1210]

I agree I would definately not give up until I got furthur testing. My son's sweat test numbers were 109 and 104. You can't give up when it comes to your kids. I would try to find a CF center and talk to someone there!

 

[KAC1210]

I agree I would definately not give up until I got furthur testing. My son's sweat test numbers were 109 and 104. You can't give up when it comes to your kids. I would try to find a CF center and talk to someone there!

 

[KAC1210]

I agree I would definately not give up until I got furthur testing. My son's sweat test numbers were 109 and 104. You can't give up when it comes to your kids. I would try to find a CF center and talk to someone there!

 

[SarahProcter]

My daughter has a CF diagnosis with sweat tests of 41, 40, and 37. Absolutely 59 should have gotten you sent straight to a CF clinic. How did things go with the doctor this time?

 

[SarahProcter]

My daughter has a CF diagnosis with sweat tests of 41, 40, and 37. Absolutely 59 should have gotten you sent straight to a CF clinic. How did things go with the doctor this time?

 

[SarahProcter]

My daughter has a CF diagnosis with sweat tests of 41, 40, and 37. Absolutely 59 should have gotten you sent straight to a CF clinic. How did things go with the doctor this time?

 

[SarahProcter]

My daughter has a CF diagnosis with sweat tests of 41, 40, and 37. Absolutely 59 should have gotten you sent straight to a CF clinic. How did things go with the doctor this time?

 

[SarahProcter]

My daughter has a CF diagnosis with sweat tests of 41, 40, and 37. Absolutely 59 should have gotten you sent straight to a CF clinic. How did things go with the doctor this time?