posoutlook
New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
My son is 8yrs old and in Jan 2010 after dealing with constant ENT issues adnoids and tonsils removed, several tubes, ear glue, sinus cysts and constant cough our doctor sent him for sweat test to rule out CF. I received a call later that day that he had a positive and borderline reading. We were at the Cf clinic at Pittsburgh's Childrens hospital within 48 hours. Dr. wasn't convinced with the first sweat test so he ordered another one along with genetic testing. 2nd test came back both positive. They started treating him for CF he does vest twice a day inhaler twice a day, vitamins and miralax for constipation.
His cough has been much better since vest. His genetic testing came back with all of the UNKNOWN mutations witch is very puzzling to doctor he said this has never happen.
Fast forward 8 months and now they want him to go to John Hopkins in Maryland for more testing. In preparing for this they ordered yet another sweat test. This time both came back negative. HOW DOES THIS HAPPEN? Doctors say they are so confused and don't know what to say.
I am loosing my mind over all of this does he have it or not. Don't have anyone to talk to that can possibly understand what I am going through.
I am glad to find this site maybe someone could help or atleast understand me.
My son is 8yrs old and in Jan 2010 after dealing with constant ENT issues adnoids and tonsils removed, several tubes, ear glue, sinus cysts and constant cough our doctor sent him for sweat test to rule out CF. I received a call later that day that he had a positive and borderline reading. We were at the Cf clinic at Pittsburgh's Childrens hospital within 48 hours. Dr. wasn't convinced with the first sweat test so he ordered another one along with genetic testing. 2nd test came back both positive. They started treating him for CF he does vest twice a day inhaler twice a day, vitamins and miralax for constipation.
His cough has been much better since vest. His genetic testing came back with all of the UNKNOWN mutations witch is very puzzling to doctor he said this has never happen.
Fast forward 8 months and now they want him to go to John Hopkins in Maryland for more testing. In preparing for this they ordered yet another sweat test. This time both came back negative. HOW DOES THIS HAPPEN? Doctors say they are so confused and don't know what to say.
I am loosing my mind over all of this does he have it or not. Don't have anyone to talk to that can possibly understand what I am going through.
I am glad to find this site maybe someone could help or atleast understand me.