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First signs of CF?
- Thread starter NoahsMommy
- Start date
T
tammykrumrey
Guest
My first daughter had many symptoms as an infant, I would say within a few weeks, although she wasn't dx until she was 14 months old. The symptoms were all due to being pancreatic insuff. Eventually a rectal prolapse led us to the CF dx. My younger daughter started enzymes at one month due to pance insuff. symptoms.
As for lung issues, my oldest was about 7-8 years old, and my younger one is following the same path...just now starting to have more problems at the age of 7.
As for lung issues, my oldest was about 7-8 years old, and my younger one is following the same path...just now starting to have more problems at the age of 7.
T
tammykrumrey
Guest
My first daughter had many symptoms as an infant, I would say within a few weeks, although she wasn't dx until she was 14 months old. The symptoms were all due to being pancreatic insuff. Eventually a rectal prolapse led us to the CF dx. My younger daughter started enzymes at one month due to pance insuff. symptoms.
As for lung issues, my oldest was about 7-8 years old, and my younger one is following the same path...just now starting to have more problems at the age of 7.
As for lung issues, my oldest was about 7-8 years old, and my younger one is following the same path...just now starting to have more problems at the age of 7.
T
tammykrumrey
Guest
My first daughter had many symptoms as an infant, I would say within a few weeks, although she wasn't dx until she was 14 months old. The symptoms were all due to being pancreatic insuff. Eventually a rectal prolapse led us to the CF dx. My younger daughter started enzymes at one month due to pance insuff. symptoms.
As for lung issues, my oldest was about 7-8 years old, and my younger one is following the same path...just now starting to have more problems at the age of 7.
As for lung issues, my oldest was about 7-8 years old, and my younger one is following the same path...just now starting to have more problems at the age of 7.
NoahsMommy
New member
thank for the replys i worry cause i don't know what to expect noah has lately been really phlemy, puking mostly spit and flem through is mouth and nose and has had mucus in his stool pooping dang nearly every 10 minutes it so bad is poor little butt is raw <img src="i/expressions/face-icon-small-sad.gif" border="0"> . my mom says it is normal but i don't feel like it is am i over worring?
NoahsMommy
New member
thank for the replys i worry cause i don't know what to expect noah has lately been really phlemy, puking mostly spit and flem through is mouth and nose and has had mucus in his stool pooping dang nearly every 10 minutes it so bad is poor little butt is raw <img src="i/expressions/face-icon-small-sad.gif" border="0"> . my mom says it is normal but i don't feel like it is am i over worring?
NoahsMommy
New member
thank for the replys i worry cause i don't know what to expect noah has lately been really phlemy, puking mostly spit and flem through is mouth and nose and has had mucus in his stool pooping dang nearly every 10 minutes it so bad is poor little butt is raw <img src="i/expressions/face-icon-small-sad.gif" border="0"> . my mom says it is normal but i don't feel like it is am i over worring?
purplemartin
New member
My son showed symptoms right out of the womb. First off, he was diagnosed due to newborn screening (YAY for newborn screening) but had a terrible time gaining back his birth weight until the diagnosis and the enzymes were started. Then at 5 months he was hopitilized with pneumonia and a collapsed lung, a few respiratory infections in between and at 7 months diagnosed with reactive airway disease. So I will have to disagree with your doctor, signs of CF can happen at any time! Best wishes to your family!
purplemartin
New member
My son showed symptoms right out of the womb. First off, he was diagnosed due to newborn screening (YAY for newborn screening) but had a terrible time gaining back his birth weight until the diagnosis and the enzymes were started. Then at 5 months he was hopitilized with pneumonia and a collapsed lung, a few respiratory infections in between and at 7 months diagnosed with reactive airway disease. So I will have to disagree with your doctor, signs of CF can happen at any time! Best wishes to your family!
purplemartin
New member
My son showed symptoms right out of the womb. First off, he was diagnosed due to newborn screening (YAY for newborn screening) but had a terrible time gaining back his birth weight until the diagnosis and the enzymes were started. Then at 5 months he was hopitilized with pneumonia and a collapsed lung, a few respiratory infections in between and at 7 months diagnosed with reactive airway disease. So I will have to disagree with your doctor, signs of CF can happen at any time! Best wishes to your family!
To answer your second post, I don't think anything that you are describing is normal. Don't let those "I'm a new mommy" doubts cloud your perception that something is wrong! I hope you get your answers soon. Perhaps your doctor can treat the GI symptoms with enzymes NOW. Ask him.
To answer your second post, I don't think anything that you are describing is normal. Don't let those "I'm a new mommy" doubts cloud your perception that something is wrong! I hope you get your answers soon. Perhaps your doctor can treat the GI symptoms with enzymes NOW. Ask him.
To answer your second post, I don't think anything that you are describing is normal. Don't let those "I'm a new mommy" doubts cloud your perception that something is wrong! I hope you get your answers soon. Perhaps your doctor can treat the GI symptoms with enzymes NOW. Ask him.
T
tammykrumrey
Guest
I agree with Dana, those symptoms do not seem normal to me either. I would definately check into it a bit closer. And I feel for you with the raw bottom...both of my girls suffered with that when they had too many bowel movements, and it broke my heart. You know they are miserable. See if you can get a prescription to help clear it up. I don't remember the name of the cream, but it really helped a lot for my girls.
T
tammykrumrey
Guest
I agree with Dana, those symptoms do not seem normal to me either. I would definately check into it a bit closer. And I feel for you with the raw bottom...both of my girls suffered with that when they had too many bowel movements, and it broke my heart. You know they are miserable. See if you can get a prescription to help clear it up. I don't remember the name of the cream, but it really helped a lot for my girls.
T
tammykrumrey
Guest
I agree with Dana, those symptoms do not seem normal to me either. I would definately check into it a bit closer. And I feel for you with the raw bottom...both of my girls suffered with that when they had too many bowel movements, and it broke my heart. You know they are miserable. See if you can get a prescription to help clear it up. I don't remember the name of the cream, but it really helped a lot for my girls.
So have you had the testing done yet?
Go to CFF.com to find an accredited cf center. Don't mess around with regular ped's on this matter. You can think of it this way... if you stall his possible diagnosis you could take years of his life. Get it done! I wasn't diagnosed until I was two. I had multiple sweat tests all which said yes I had cf but the stupid doctors told my parents I was fairing all too well (I was a fat baby) and that it wasn't possible. Skip the sweat test and go straight for the Ambry full genetic panel test. They should be testing him for over 1000 mutations. Don't settle for one of the other tests that only checks for 30-100 mutations. A diagnosis is a God sent and will not make him have cf - if he has it, he has it. Please call today to make an appt. Let us know how it goes.
Oh I just saw you are having the sweat test done March 5th. Consider skipping that and heading straight for the genetic work up. Check with your insurance and skip it unless they require it. You're in control - forget what the doctor's say. Nod and demand what you want. After all he's a carrier so he is at increased risk for having cf. Just to give you a stat to think about. My hubby is not a carrier of the 89 most common mutations. I have cf so have two mutations. My baby due this summer will definitely inherit one of my defective mut's and there's still a 1 in 500 chance the baby will have cf because of those other 1000 mutations my hubby wasn't tested for.
Good luck!
Go to CFF.com to find an accredited cf center. Don't mess around with regular ped's on this matter. You can think of it this way... if you stall his possible diagnosis you could take years of his life. Get it done! I wasn't diagnosed until I was two. I had multiple sweat tests all which said yes I had cf but the stupid doctors told my parents I was fairing all too well (I was a fat baby) and that it wasn't possible. Skip the sweat test and go straight for the Ambry full genetic panel test. They should be testing him for over 1000 mutations. Don't settle for one of the other tests that only checks for 30-100 mutations. A diagnosis is a God sent and will not make him have cf - if he has it, he has it. Please call today to make an appt. Let us know how it goes.
Oh I just saw you are having the sweat test done March 5th. Consider skipping that and heading straight for the genetic work up. Check with your insurance and skip it unless they require it. You're in control - forget what the doctor's say. Nod and demand what you want. After all he's a carrier so he is at increased risk for having cf. Just to give you a stat to think about. My hubby is not a carrier of the 89 most common mutations. I have cf so have two mutations. My baby due this summer will definitely inherit one of my defective mut's and there's still a 1 in 500 chance the baby will have cf because of those other 1000 mutations my hubby wasn't tested for.
Good luck!
So have you had the testing done yet?
Go to CFF.com to find an accredited cf center. Don't mess around with regular ped's on this matter. You can think of it this way... if you stall his possible diagnosis you could take years of his life. Get it done! I wasn't diagnosed until I was two. I had multiple sweat tests all which said yes I had cf but the stupid doctors told my parents I was fairing all too well (I was a fat baby) and that it wasn't possible. Skip the sweat test and go straight for the Ambry full genetic panel test. They should be testing him for over 1000 mutations. Don't settle for one of the other tests that only checks for 30-100 mutations. A diagnosis is a God sent and will not make him have cf - if he has it, he has it. Please call today to make an appt. Let us know how it goes.
Oh I just saw you are having the sweat test done March 5th. Consider skipping that and heading straight for the genetic work up. Check with your insurance and skip it unless they require it. You're in control - forget what the doctor's say. Nod and demand what you want. After all he's a carrier so he is at increased risk for having cf. Just to give you a stat to think about. My hubby is not a carrier of the 89 most common mutations. I have cf so have two mutations. My baby due this summer will definitely inherit one of my defective mut's and there's still a 1 in 500 chance the baby will have cf because of those other 1000 mutations my hubby wasn't tested for.
Good luck!
Go to CFF.com to find an accredited cf center. Don't mess around with regular ped's on this matter. You can think of it this way... if you stall his possible diagnosis you could take years of his life. Get it done! I wasn't diagnosed until I was two. I had multiple sweat tests all which said yes I had cf but the stupid doctors told my parents I was fairing all too well (I was a fat baby) and that it wasn't possible. Skip the sweat test and go straight for the Ambry full genetic panel test. They should be testing him for over 1000 mutations. Don't settle for one of the other tests that only checks for 30-100 mutations. A diagnosis is a God sent and will not make him have cf - if he has it, he has it. Please call today to make an appt. Let us know how it goes.
Oh I just saw you are having the sweat test done March 5th. Consider skipping that and heading straight for the genetic work up. Check with your insurance and skip it unless they require it. You're in control - forget what the doctor's say. Nod and demand what you want. After all he's a carrier so he is at increased risk for having cf. Just to give you a stat to think about. My hubby is not a carrier of the 89 most common mutations. I have cf so have two mutations. My baby due this summer will definitely inherit one of my defective mut's and there's still a 1 in 500 chance the baby will have cf because of those other 1000 mutations my hubby wasn't tested for.
Good luck!
So have you had the testing done yet?
Go to CFF.com to find an accredited cf center. Don't mess around with regular ped's on this matter. You can think of it this way... if you stall his possible diagnosis you could take years of his life. Get it done! I wasn't diagnosed until I was two. I had multiple sweat tests all which said yes I had cf but the stupid doctors told my parents I was fairing all too well (I was a fat baby) and that it wasn't possible. Skip the sweat test and go straight for the Ambry full genetic panel test. They should be testing him for over 1000 mutations. Don't settle for one of the other tests that only checks for 30-100 mutations. A diagnosis is a God sent and will not make him have cf - if he has it, he has it. Please call today to make an appt. Let us know how it goes.
Oh I just saw you are having the sweat test done March 5th. Consider skipping that and heading straight for the genetic work up. Check with your insurance and skip it unless they require it. You're in control - forget what the doctor's say. Nod and demand what you want. After all he's a carrier so he is at increased risk for having cf. Just to give you a stat to think about. My hubby is not a carrier of the 89 most common mutations. I have cf so have two mutations. My baby due this summer will definitely inherit one of my defective mut's and there's still a 1 in 500 chance the baby will have cf because of those other 1000 mutations my hubby wasn't tested for.
Good luck!
Go to CFF.com to find an accredited cf center. Don't mess around with regular ped's on this matter. You can think of it this way... if you stall his possible diagnosis you could take years of his life. Get it done! I wasn't diagnosed until I was two. I had multiple sweat tests all which said yes I had cf but the stupid doctors told my parents I was fairing all too well (I was a fat baby) and that it wasn't possible. Skip the sweat test and go straight for the Ambry full genetic panel test. They should be testing him for over 1000 mutations. Don't settle for one of the other tests that only checks for 30-100 mutations. A diagnosis is a God sent and will not make him have cf - if he has it, he has it. Please call today to make an appt. Let us know how it goes.
Oh I just saw you are having the sweat test done March 5th. Consider skipping that and heading straight for the genetic work up. Check with your insurance and skip it unless they require it. You're in control - forget what the doctor's say. Nod and demand what you want. After all he's a carrier so he is at increased risk for having cf. Just to give you a stat to think about. My hubby is not a carrier of the 89 most common mutations. I have cf so have two mutations. My baby due this summer will definitely inherit one of my defective mut's and there's still a 1 in 500 chance the baby will have cf because of those other 1000 mutations my hubby wasn't tested for.
Good luck!
CF symptoms can show up anytime from in the womb (blockage shows up on ultrasound) to someone in there 40's (a man with fertility problems gets genetic testing.... aw ha! That's why he has all those sinus & pneumonia problems)
My daughter started having symptoms at 5 years old, my son is 20 years old and hasn't really shown any (my kids are not typical cases though)
If you feel like it, read my first entry of my blog page (link in my signature line) It also gives some good info about sweat test numbers.... be sure to ask what your child's number is... do not just let them tell you negative and forget about it. If it's anywhere in the 30's keep pushing for more testing.
Best wishes, and be sure to tell us what happens!
My daughter started having symptoms at 5 years old, my son is 20 years old and hasn't really shown any (my kids are not typical cases though)
If you feel like it, read my first entry of my blog page (link in my signature line) It also gives some good info about sweat test numbers.... be sure to ask what your child's number is... do not just let them tell you negative and forget about it. If it's anywhere in the 30's keep pushing for more testing.
Best wishes, and be sure to tell us what happens!