Could it be CF in my 14 yo?

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snowborden1

Guest
My son is 14 years old, weighs 78 lbs and is 4'10". He has had a cough for 2 years now and asthma among other things have been ruled out. He has had pneumonia twice and bronchitis once in this time. He is currently under the care of an endocrinologist because of his growth issues. He is falling farther and farther behind. His latest labs show his FSH to be very low and his LH to be low but not out of range. His vitamin D level continues to stay low despite supplements for the last year. It is currently at 21. He has always struggled with constipation and very large BM's. As an infant he had the same cough he has now that lingered from about the age of 8 months to 2 years. He suffered with chronic constipation as an infant that would have him screaming for hours. I terrified that this could all be CF. I tasted his skin to see if he tasted salty (he thought I was nuts!) but he doesn't. Any opinions? I'm freaking out right now! Thanks so much!
 
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snowborden1

Guest
He has always been very low on energy as well. Has a hard time keeping up with friends.
 
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Aboveallislove

Super Moderator
There is enough there to strongly push for a referral to an accredited cf center and a sweat test and genetic test. Id call the doctors tomorrow to get the ball rolling. If it is cf he has always had it and will now be treated properly and grow and be much healthier. And if t isn't they can rule that out. Hugs and prayers
love
 
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snowborden1

Guest
Thank you! Does a CF cough always have mucus? It's never been a productive cough... unless he was ill at the time.
 
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Aboveallislove

Super Moderator
I'm so sorry; I can't answer that as our son doesn't have a CF cough. At this point, I know its easier said then done, but I would look at it as this might explain everything or it will be good to get this ruled out. There are many on here who were diagnosed much later than 14 (20, 30, 40) and who thrive now that they have proper treatment. I am sorry. Please do ask more questions and others might be able to give some insight too, but for now go to cff.org and find the accredited centers near you and talk to your doctor about having a referral. And if he says your son is too old to have CF, run to another doctor. He might think it isn't CF, but he needs to rule it out given all you wrote.
 
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Ratatosk

Administrator
Staff member
Push for testing, a friend of mines husband was diagnosed at age 14 due to failure to thrive. His mother was concerned because he wouldn't gain weight. He also was very salty. He actually has the same mutation ddf508 as my son.
 
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snowborden1

Guest
Aboveallislove said:
I'm so sorry; I can't answer that as our son doesn't have a CF cough. At this point, I know its easier said then done, but I would look at it as this might explain everything or it will be good to get this ruled out. There are many on here who were diagnosed much later than 14 (20, 30, 40) and who thrive now that they have proper treatment. I am sorry. Please do ask more questions and others might be able to give some insight too, but for now go to cff.org and find the accredited centers near you and talk to your doctor about having a referral. And if he says your son is too old to have CF, run to another doctor. He might think it isn't CF, but he needs to rule it out given all you wrote.
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Thank you! I just looked and his pulmonologist is actually our only accredited CF Dr here. He hasn't seen her in a while as she kinda gave us the shoulder shrug and said she didn't know. She never even brought up testing him for this. His endocrinologist is the one who brought it up. She I take him bake the the polmunologist or let the other dr test him?
 
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Aboveallislove

Super Moderator
snowborden1 said:
Thank you! I just looked and his pulmonologist is actually our only accredited CF Dr here. He hasn't seen her in a while as she kinda gave us the shoulder shrug and said she didn't know. She never even brought up testing him for this. His endocrinologist is the one who brought it up. She I take him bake the the polmunologist or let the other dr test him?
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Since the endo thought of it I'd have him order a blood test (see if he can do as many mutations as possible...likely they won't do all 2000 to start but if they do the 100 test and hit one then you'll be more likely to be able to get full testing. And have him order sweat test at accredited cf center...only they can do the sweat test properly but if he orders you have it coming from a doctor and not mom so the other Doctor might take it more seriously.
 
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Printer

Active member
If his Endocrinologist were qualified to do CF testing he/she would have already done the tests. If his Pulmonologist is an CF SPECIALIST and at an ACCREDITED CF CLINIC, see her as soon as possible. There is more than enough information to do serious CF testing.

Bill
 
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snowborden1

Guest
Ok, thank you! I'll call down there and have it set up asap. I'm a wreck thinking he could be sick and not have known!
 
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Printer

Active member
To answer an earlier question that you asked about cf coughing, there are almost 2000 known cf mutations, any 2 will cause cf. 2000 X 2000= 4,000,000 possible combinations of CF causing mutations ie that many differing CYSTIC FIBROSIS strains. So there is no answer to your question.
 
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