Please help i need some advice

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anonymous

New member
My son is 20 months old and sinse he was 4 months old he has had cough after cough.In august he was in hospital for a week with phnumonia(sorry bout spelling) He has had his last cough for 11 weeks now. When he went for his check up at the hospital on tuesday the doctor said he was going to do blood tests to find out if he has cf. From what i have read on the net its not done by a blood test, its done by a sweat test. My son has not gained weight sinse he was 10 months, coughs, colds, eye infections, ear infections. He has had an immunity test and that was fine.
The hospital i go to has the highest death rate and they also left my son just lying there for 3 days when he had phnumonia before they did any tests to find out what was wrong> i just need to make sure that they are doing this right. Please help. any advice welcome.
 
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anonymous

New member
The sweat test and a genetic test from a blood sample are used to identify CF. Either one by itself can provide an answer but sometimes just doing one can give an inconclusive answer and the other test is needed. If you've not looked at the CFF.org website for some basic information, that might be a good place to learn more from a reliable source.

My son was diagnosed by the sweat test but the standard genetic screening did not catch it - they had to do a more comprehensive genetic test to find it (it turned out to be a version that just did not show up on the "basic" screening).
 
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anonymous

New member
And DD was born with meconium illeus/bowel obstruction. They did a genetic blood test, which showed double deltaf508, but the sweat test came back normal -- not borderline, not inconclusive, but with a very very low, normal number.
 
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anonymous

New member
It can be diagnosed by both sweat & blood.
My suggestion to you is, find another hospital, even if it means traveling a couple of hours, your son is worth it.
 
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IG

Guest
Well that's not exactly true. CHOP, Childrens Hospital of Philadelphia is one of the highest rated yes, but not necessarily the best. If you count statistics I'd think that the hospital where Dr. Warrick sends his patients would be the best, since obviously he's one of the best CF docs out there [I'd argue my CF docs against him but I'm biased] Anyway CHOP [horrible accronym isn't it] is one of the highest rated hospitals out there.
 
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anonymous

New member
I would really think about taking your son to a different hospital, even if you have to drive 3 hours like we do. It's a pain but well worth it. Sometimes you have to fight for what your child needs.
 
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