Frustrated and so very confused...

qzsue

New member
Hi, I posted a couple of weeks about my 12 y.o. son. Well, since then he has had an Upper G.I, blood test and a sweat test. Endoscopy/Colonoscopy will be at the end of September. The specialist wanted the Upper G.I due to his acid reflux and abdominal pain...it did show alot of reflux in his esophagus. Blood work was for Celiac disease...negative, Sweat tesst...negative. I will consult with her about the Ambry. I guess we will just have to "rule" out diseases for the time being. He continues to take Miralax for constipation, and Prevacid for reflux. What lead the specialist to wonder if it was CF was his history with pneumonia, constipation and as of now his stature and body weight. He has not had pneumonia in five years...knock on wood! If anyone has a similiar story or friendly advice, please write!! Thank you.
 

qzsue

New member
Hi, I posted a couple of weeks about my 12 y.o. son. Well, since then he has had an Upper G.I, blood test and a sweat test. Endoscopy/Colonoscopy will be at the end of September. The specialist wanted the Upper G.I due to his acid reflux and abdominal pain...it did show alot of reflux in his esophagus. Blood work was for Celiac disease...negative, Sweat tesst...negative. I will consult with her about the Ambry. I guess we will just have to "rule" out diseases for the time being. He continues to take Miralax for constipation, and Prevacid for reflux. What lead the specialist to wonder if it was CF was his history with pneumonia, constipation and as of now his stature and body weight. He has not had pneumonia in five years...knock on wood! If anyone has a similiar story or friendly advice, please write!! Thank you.
 

qzsue

New member
Hi, I posted a couple of weeks about my 12 y.o. son. Well, since then he has had an Upper G.I, blood test and a sweat test. Endoscopy/Colonoscopy will be at the end of September. The specialist wanted the Upper G.I due to his acid reflux and abdominal pain...it did show alot of reflux in his esophagus. Blood work was for Celiac disease...negative, Sweat tesst...negative. I will consult with her about the Ambry. I guess we will just have to "rule" out diseases for the time being. He continues to take Miralax for constipation, and Prevacid for reflux. What lead the specialist to wonder if it was CF was his history with pneumonia, constipation and as of now his stature and body weight. He has not had pneumonia in five years...knock on wood! If anyone has a similiar story or friendly advice, please write!! Thank you.
 

jpetersen

New member
I was an obvious CFer as a newborn, so I can't relate other than hearing these stories before and going through a time with my wife now where we're not sure what is ailing her with allergy-like symptoms. I hate unknowns in my life.

You need to have a full panel genetic test. Sweat tests aren't always accurate with all mutations. That's the only way you're going to rule out CF at this point. Then you have to decide if you want it to be CF so you have an answer or be something else and keep searching for the answer while you wait for the results.

A quick prayer to you in this hard time.
 

jpetersen

New member
I was an obvious CFer as a newborn, so I can't relate other than hearing these stories before and going through a time with my wife now where we're not sure what is ailing her with allergy-like symptoms. I hate unknowns in my life.

You need to have a full panel genetic test. Sweat tests aren't always accurate with all mutations. That's the only way you're going to rule out CF at this point. Then you have to decide if you want it to be CF so you have an answer or be something else and keep searching for the answer while you wait for the results.

A quick prayer to you in this hard time.
 

jpetersen

New member
I was an obvious CFer as a newborn, so I can't relate other than hearing these stories before and going through a time with my wife now where we're not sure what is ailing her with allergy-like symptoms. I hate unknowns in my life.
<br />
<br />You need to have a full panel genetic test. Sweat tests aren't always accurate with all mutations. That's the only way you're going to rule out CF at this point. Then you have to decide if you want it to be CF so you have an answer or be something else and keep searching for the answer while you wait for the results.
<br />
<br />A quick prayer to you in this hard time.
 
M

Mommafirst

Guest
Cf is not easy to rule out. Several ways to find it, but just as many ways to avoid detection. Push for Ambry. And I hope the results bring you piece of mind.
 
M

Mommafirst

Guest
Cf is not easy to rule out. Several ways to find it, but just as many ways to avoid detection. Push for Ambry. And I hope the results bring you piece of mind.
 
M

Mommafirst

Guest
Cf is not easy to rule out. Several ways to find it, but just as many ways to avoid detection. Push for Ambry. And I hope the results bring you piece of mind.
 
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