Hi everyone! I am so glad to have found this wonderful forum. My best friend had a 6 year old son. He is sick with bronchitus/pneumonia, literally every month. The doctor gives him antibiotics and nebulizer treatments which clear it up but 2 weeks later he gets sick again. In addition to this he has strange colored bowel movements which my friend says are very foul smelling and sometimes days of constipation. In addition he has relux that he takes nexium for. He is literally the size of a 4 year old and just turned 6 and a half. He lost a pound this past year and did not grow in height at all. In fact he has only grown an inch or two since he was 3 and a half. My friend herself is short, only 4'11 so I honestly kind of always though he was little like her. But now I am concerned. The doctor ordered a bone scan last month which shows his bone age at 4 years, 2 and a half years delayed and they estimate his adult height to be only 4'9! The pediatrician is now sending them to an endocronologist to check his hormones,ect. I really feel he has all the symptoms of CF. I brought CF up to my friend and she said its weird I mention it because the respritory therapist asked if he had been tested for it, which he has not been by the pediatrician. I looked online and the newborn screening has been done in our state of NJ since July of 2001 so he would hve been tested as a newborn. My question is does the newborn screening always pick up CF? My friend is going to call the pediatrician and mention CF to her to see what she thinks but until then I was hoping someone would have some insight. Thank you so much for taking the time to read my post! Oh one more thing, he had a stomach ache last week and the pediatrician said his lymph nodes are all swollen under his ribs and his CBC came back with extremly high red blood cell count and hemoglobin. Thanks again!!!
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Questions about possible CF in 6 year old plz help!
- Thread starter lizsab
- Start date
Hi everyone! I am so glad to have found this wonderful forum. My best friend had a 6 year old son. He is sick with bronchitus/pneumonia, literally every month. The doctor gives him antibiotics and nebulizer treatments which clear it up but 2 weeks later he gets sick again. In addition to this he has strange colored bowel movements which my friend says are very foul smelling and sometimes days of constipation. In addition he has relux that he takes nexium for. He is literally the size of a 4 year old and just turned 6 and a half. He lost a pound this past year and did not grow in height at all. In fact he has only grown an inch or two since he was 3 and a half. My friend herself is short, only 4'11 so I honestly kind of always though he was little like her. But now I am concerned. The doctor ordered a bone scan last month which shows his bone age at 4 years, 2 and a half years delayed and they estimate his adult height to be only 4'9! The pediatrician is now sending them to an endocronologist to check his hormones,ect. I really feel he has all the symptoms of CF. I brought CF up to my friend and she said its weird I mention it because the respritory therapist asked if he had been tested for it, which he has not been by the pediatrician. I looked online and the newborn screening has been done in our state of NJ since July of 2001 so he would hve been tested as a newborn. My question is does the newborn screening always pick up CF? My friend is going to call the pediatrician and mention CF to her to see what she thinks but until then I was hoping someone would have some insight. Thank you so much for taking the time to read my post! Oh one more thing, he had a stomach ache last week and the pediatrician said his lymph nodes are all swollen under his ribs and his CBC came back with extremly high red blood cell count and hemoglobin. Thanks again!!!
Hi everyone! I am so glad to have found this wonderful forum. My best friend had a 6 year old son. He is sick with bronchitus/pneumonia, literally every month. The doctor gives him antibiotics and nebulizer treatments which clear it up but 2 weeks later he gets sick again. In addition to this he has strange colored bowel movements which my friend says are very foul smelling and sometimes days of constipation. In addition he has relux that he takes nexium for. He is literally the size of a 4 year old and just turned 6 and a half. He lost a pound this past year and did not grow in height at all. In fact he has only grown an inch or two since he was 3 and a half. My friend herself is short, only 4'11 so I honestly kind of always though he was little like her. But now I am concerned. The doctor ordered a bone scan last month which shows his bone age at 4 years, 2 and a half years delayed and they estimate his adult height to be only 4'9! The pediatrician is now sending them to an endocronologist to check his hormones,ect. I really feel he has all the symptoms of CF. I brought CF up to my friend and she said its weird I mention it because the respritory therapist asked if he had been tested for it, which he has not been by the pediatrician. I looked online and the newborn screening has been done in our state of NJ since July of 2001 so he would hve been tested as a newborn. My question is does the newborn screening always pick up CF? My friend is going to call the pediatrician and mention CF to her to see what she thinks but until then I was hoping someone would have some insight. Thank you so much for taking the time to read my post! Oh one more thing, he had a stomach ache last week and the pediatrician said his lymph nodes are all swollen under his ribs and his CBC came back with extremly high red blood cell count and hemoglobin. Thanks again!!!
The CDC website says that the newborn screens routinely have false negatives. Everything you said does sound like CF. I would have her doctor send her to an accredited CF center and request a sweat test. If he has it, he really needs to be diagnosed and treated with the correct drugs. The sweat test only takes a couple of days to get back. Good luck.
The CDC website says that the newborn screens routinely have false negatives. Everything you said does sound like CF. I would have her doctor send her to an accredited CF center and request a sweat test. If he has it, he really needs to be diagnosed and treated with the correct drugs. The sweat test only takes a couple of days to get back. Good luck.
The CDC website says that the newborn screens routinely have false negatives. Everything you said does sound like CF. I would have her doctor send her to an accredited CF center and request a sweat test. If he has it, he really needs to be diagnosed and treated with the correct drugs. The sweat test only takes a couple of days to get back. Good luck.
Thank you so much for your quick reply!! I am wondering why the DOCTOR would not suspect CF. Seems really odd to me that I would figure it out never knowing anything about it just by going on the internet and the doctor is looking only on the lines of a hormonal or pituitary gland problem. I told my friend about the sweat test today so hopefully it gets done soon. Im so scared for them but dont want him to go undiagnosed when he could be getting proper treatment if it is CF <img src="i/expressions/face-icon-small-sad.gif" border="0"> Again, thanks so much for the reply!
Thank you so much for your quick reply!! I am wondering why the DOCTOR would not suspect CF. Seems really odd to me that I would figure it out never knowing anything about it just by going on the internet and the doctor is looking only on the lines of a hormonal or pituitary gland problem. I told my friend about the sweat test today so hopefully it gets done soon. Im so scared for them but dont want him to go undiagnosed when he could be getting proper treatment if it is CF <img src="i/expressions/face-icon-small-sad.gif" border="0"> Again, thanks so much for the reply!
Thank you so much for your quick reply!! I am wondering why the DOCTOR would not suspect CF. Seems really odd to me that I would figure it out never knowing anything about it just by going on the internet and the doctor is looking only on the lines of a hormonal or pituitary gland problem. I told my friend about the sweat test today so hopefully it gets done soon. Im so scared for them but dont want him to go undiagnosed when he could be getting proper treatment if it is CF <img src="i/expressions/face-icon-small-sad.gif" border="0"> Again, thanks so much for the reply!
I agree that it sounds like CF and is definately worth the testing (genetic and sweat). Doctors often overlook CF - you will find that from a lot of parents on here who searched for a diagnosis for their child and doctors told them over and over that it was not cf, and then, of course it was cf. Sometimes doctors have trouble seeing what's in front of them or they just don't know enough about a condition like cf.
Whatever happens, I hope your friend gets answers to help her son.
Please keep us posted as sometimes the first round of genetic testing comes back and doesn't show cf because it doesn't test for all the mutations (1600). there is a full panel genetic test that can be done. And also, sweat tests can be tricky sometimes too. So if you have any further questions down the road, please ask.
Whatever happens, I hope your friend gets answers to help her son.
Please keep us posted as sometimes the first round of genetic testing comes back and doesn't show cf because it doesn't test for all the mutations (1600). there is a full panel genetic test that can be done. And also, sweat tests can be tricky sometimes too. So if you have any further questions down the road, please ask.
I agree that it sounds like CF and is definately worth the testing (genetic and sweat). Doctors often overlook CF - you will find that from a lot of parents on here who searched for a diagnosis for their child and doctors told them over and over that it was not cf, and then, of course it was cf. Sometimes doctors have trouble seeing what's in front of them or they just don't know enough about a condition like cf.
Whatever happens, I hope your friend gets answers to help her son.
Please keep us posted as sometimes the first round of genetic testing comes back and doesn't show cf because it doesn't test for all the mutations (1600). there is a full panel genetic test that can be done. And also, sweat tests can be tricky sometimes too. So if you have any further questions down the road, please ask.
Whatever happens, I hope your friend gets answers to help her son.
Please keep us posted as sometimes the first round of genetic testing comes back and doesn't show cf because it doesn't test for all the mutations (1600). there is a full panel genetic test that can be done. And also, sweat tests can be tricky sometimes too. So if you have any further questions down the road, please ask.
I agree that it sounds like CF and is definately worth the testing (genetic and sweat). Doctors often overlook CF - you will find that from a lot of parents on here who searched for a diagnosis for their child and doctors told them over and over that it was not cf, and then, of course it was cf. Sometimes doctors have trouble seeing what's in front of them or they just don't know enough about a condition like cf.
<br />Whatever happens, I hope your friend gets answers to help her son.
<br />Please keep us posted as sometimes the first round of genetic testing comes back and doesn't show cf because it doesn't test for all the mutations (1600). there is a full panel genetic test that can be done. And also, sweat tests can be tricky sometimes too. So if you have any further questions down the road, please ask.
<br />Whatever happens, I hope your friend gets answers to help her son.
<br />Please keep us posted as sometimes the first round of genetic testing comes back and doesn't show cf because it doesn't test for all the mutations (1600). there is a full panel genetic test that can be done. And also, sweat tests can be tricky sometimes too. So if you have any further questions down the road, please ask.