NEw with questions!

C

clawson5104

New member
my son will be 3 in june. he was diagnosed in may 07. he had tons of sinus/respiratory infections, 1 ear infection, pneumonia twice. he was really underweight, and as far as bowels, he would go from one extreme to the other. one week diarrhea, one week constipation. and he does not eat good either pediatrician kept telling me, asthma and allergies, and he is also anemic, so the iron could be the bowel and not eating issue. but i "knew" something wasn't right. so after ALOT of persistance, we were referred to pulmonologist who took one look at him and said we will do CF testing.

So I agree with everybody else, TAKE A DEEP BREATH. Push for genetic testing, they will probably start with sweat testing...thanks to stupid insurance. but if you can get the genetic GO FOR IT FIRST. Ambry testing,,,,they're the best!

I hope you get some answers soon, and hope it's not CF, but if it is, it'll be okay. CF medicine has come a long way, and CFers can lead some pretty busy lives! It could be worse too. So hang in there! Keep us updated, and come back ANYTIME!

And although I love MayoClinic.com.......you may wanna go to cff.org for more CF info.
 
C

clawson5104

New member
my son will be 3 in june. he was diagnosed in may 07. he had tons of sinus/respiratory infections, 1 ear infection, pneumonia twice. he was really underweight, and as far as bowels, he would go from one extreme to the other. one week diarrhea, one week constipation. and he does not eat good either pediatrician kept telling me, asthma and allergies, and he is also anemic, so the iron could be the bowel and not eating issue. but i "knew" something wasn't right. so after ALOT of persistance, we were referred to pulmonologist who took one look at him and said we will do CF testing.

So I agree with everybody else, TAKE A DEEP BREATH. Push for genetic testing, they will probably start with sweat testing...thanks to stupid insurance. but if you can get the genetic GO FOR IT FIRST. Ambry testing,,,,they're the best!

I hope you get some answers soon, and hope it's not CF, but if it is, it'll be okay. CF medicine has come a long way, and CFers can lead some pretty busy lives! It could be worse too. So hang in there! Keep us updated, and come back ANYTIME!

And although I love MayoClinic.com.......you may wanna go to cff.org for more CF info.
 
C

clawson5104

New member
my son will be 3 in june. he was diagnosed in may 07. he had tons of sinus/respiratory infections, 1 ear infection, pneumonia twice. he was really underweight, and as far as bowels, he would go from one extreme to the other. one week diarrhea, one week constipation. and he does not eat good either pediatrician kept telling me, asthma and allergies, and he is also anemic, so the iron could be the bowel and not eating issue. but i "knew" something wasn't right. so after ALOT of persistance, we were referred to pulmonologist who took one look at him and said we will do CF testing.

So I agree with everybody else, TAKE A DEEP BREATH. Push for genetic testing, they will probably start with sweat testing...thanks to stupid insurance. but if you can get the genetic GO FOR IT FIRST. Ambry testing,,,,they're the best!

I hope you get some answers soon, and hope it's not CF, but if it is, it'll be okay. CF medicine has come a long way, and CFers can lead some pretty busy lives! It could be worse too. So hang in there! Keep us updated, and come back ANYTIME!

And although I love MayoClinic.com.......you may wanna go to cff.org for more CF info.
 
C

clawson5104

New member
my son will be 3 in june. he was diagnosed in may 07. he had tons of sinus/respiratory infections, 1 ear infection, pneumonia twice. he was really underweight, and as far as bowels, he would go from one extreme to the other. one week diarrhea, one week constipation. and he does not eat good either pediatrician kept telling me, asthma and allergies, and he is also anemic, so the iron could be the bowel and not eating issue. but i "knew" something wasn't right. so after ALOT of persistance, we were referred to pulmonologist who took one look at him and said we will do CF testing.

So I agree with everybody else, TAKE A DEEP BREATH. Push for genetic testing, they will probably start with sweat testing...thanks to stupid insurance. but if you can get the genetic GO FOR IT FIRST. Ambry testing,,,,they're the best!

I hope you get some answers soon, and hope it's not CF, but if it is, it'll be okay. CF medicine has come a long way, and CFers can lead some pretty busy lives! It could be worse too. So hang in there! Keep us updated, and come back ANYTIME!

And although I love MayoClinic.com.......you may wanna go to cff.org for more CF info.
 
C

clawson5104

New member
my son will be 3 in june. he was diagnosed in may 07. he had tons of sinus/respiratory infections, 1 ear infection, pneumonia twice. he was really underweight, and as far as bowels, he would go from one extreme to the other. one week diarrhea, one week constipation. and he does not eat good either pediatrician kept telling me, asthma and allergies, and he is also anemic, so the iron could be the bowel and not eating issue. but i "knew" something wasn't right. so after ALOT of persistance, we were referred to pulmonologist who took one look at him and said we will do CF testing.
<br />
<br />So I agree with everybody else, TAKE A DEEP BREATH. Push for genetic testing, they will probably start with sweat testing...thanks to stupid insurance. but if you can get the genetic GO FOR IT FIRST. Ambry testing,,,,they're the best!
<br />
<br />I hope you get some answers soon, and hope it's not CF, but if it is, it'll be okay. CF medicine has come a long way, and CFers can lead some pretty busy lives! It could be worse too. So hang in there! Keep us updated, and come back ANYTIME!
<br />
<br />And although I love MayoClinic.com.......you may wanna go to cff.org for more CF info.
 
A

ann232

New member
well hello my daughter is eighteen months old and when she was born evrything was fine it was the second day when we getting ready to go home and she hadnt had alot of the stool and her belly was bigger thats how they got to testing her because the sweat test she didint sweat enough so the newborn screening picked it up that she had it but they do live longer lives now so theres more hope then in past years
 
A

ann232

New member
well hello my daughter is eighteen months old and when she was born evrything was fine it was the second day when we getting ready to go home and she hadnt had alot of the stool and her belly was bigger thats how they got to testing her because the sweat test she didint sweat enough so the newborn screening picked it up that she had it but they do live longer lives now so theres more hope then in past years
 
A

ann232

New member
well hello my daughter is eighteen months old and when she was born evrything was fine it was the second day when we getting ready to go home and she hadnt had alot of the stool and her belly was bigger thats how they got to testing her because the sweat test she didint sweat enough so the newborn screening picked it up that she had it but they do live longer lives now so theres more hope then in past years
 
A

ann232

New member
well hello my daughter is eighteen months old and when she was born evrything was fine it was the second day when we getting ready to go home and she hadnt had alot of the stool and her belly was bigger thats how they got to testing her because the sweat test she didint sweat enough so the newborn screening picked it up that she had it but they do live longer lives now so theres more hope then in past years
 
A

ann232

New member
well hello my daughter is eighteen months old and when she was born evrything was fine it was the second day when we getting ready to go home and she hadnt had alot of the stool and her belly was bigger thats how they got to testing her because the sweat test she didint sweat enough so the newborn screening picked it up that she had it but they do live longer lives now so theres more hope then in past years
 
P

Pumpkinnut3

New member
My daughter was born with meconium ileus (intestinal obstruction) which is a major red flag for CF, however she wasn't diagnosed at birth. She was underweight even though she ate CONSTANTLY, she always had stomach/BM problems from the very begining. After being treated in the hospital twice with lung infections she was finally diagnosed at 16months. I wouldn't worry yourself until you get answers. Good news it that CF is very treatable. They can put her on enzymes that will significantly improve her GI problems and help get a little weight on her bones and treatments for her lungs and sinuses. Hope this helps. Good luck!
 
P

Pumpkinnut3

New member
My daughter was born with meconium ileus (intestinal obstruction) which is a major red flag for CF, however she wasn't diagnosed at birth. She was underweight even though she ate CONSTANTLY, she always had stomach/BM problems from the very begining. After being treated in the hospital twice with lung infections she was finally diagnosed at 16months. I wouldn't worry yourself until you get answers. Good news it that CF is very treatable. They can put her on enzymes that will significantly improve her GI problems and help get a little weight on her bones and treatments for her lungs and sinuses. Hope this helps. Good luck!
 
P

Pumpkinnut3

New member
My daughter was born with meconium ileus (intestinal obstruction) which is a major red flag for CF, however she wasn't diagnosed at birth. She was underweight even though she ate CONSTANTLY, she always had stomach/BM problems from the very begining. After being treated in the hospital twice with lung infections she was finally diagnosed at 16months. I wouldn't worry yourself until you get answers. Good news it that CF is very treatable. They can put her on enzymes that will significantly improve her GI problems and help get a little weight on her bones and treatments for her lungs and sinuses. Hope this helps. Good luck!
 
P

Pumpkinnut3

New member
My daughter was born with meconium ileus (intestinal obstruction) which is a major red flag for CF, however she wasn't diagnosed at birth. She was underweight even though she ate CONSTANTLY, she always had stomach/BM problems from the very begining. After being treated in the hospital twice with lung infections she was finally diagnosed at 16months. I wouldn't worry yourself until you get answers. Good news it that CF is very treatable. They can put her on enzymes that will significantly improve her GI problems and help get a little weight on her bones and treatments for her lungs and sinuses. Hope this helps. Good luck!
 
P

Pumpkinnut3

New member
My daughter was born with meconium ileus (intestinal obstruction) which is a major red flag for CF, however she wasn't diagnosed at birth. She was underweight even though she ate CONSTANTLY, she always had stomach/BM problems from the very begining. After being treated in the hospital twice with lung infections she was finally diagnosed at 16months. I wouldn't worry yourself until you get answers. Good news it that CF is very treatable. They can put her on enzymes that will significantly improve her GI problems and help get a little weight on her bones and treatments for her lungs and sinuses. Hope this helps. Good luck!
 
You must log in or register to reply here.
Top