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We just recently found out 12 yo ds's gallbladder is only functioning at 24%. Nurse called in a prescription for Actigall and said they want to see if this will jumpstart his gallbladder. They also want him to follow a low fat diet to see if that will help. He has a follow up appointment at...
Hi, haven't posted in a while. We recently got a second opinion on ds 16. It was suggested that we get a nasal potential difference test this summer on him and his younger brother. We were told this is the gold standard for diagnosing atypical cf. Atlanta, Birmingham and Cincinnati were the...
Hi, I'm hoping someone can answer some questions regarding cf gene mutations. We learned a few months ago that youngest ds has 1 rare cf gene mutation, so we then decided to have older ds have a sweat test although he had one as a baby 15 years ago that we were told was negative. First sweat...
<img src="i/expressions/face-icon-small-happy.gif" border="0"> We got the DNA results from Ambry at our appt. The only mutation they found was p.L997F. The nurse said that ds does not have cf that the reason he had a positive sweat test and two high normals was prob. due to the mutation. The...
Ds had his appt. at the plumonologist last week. Found out the result of his positive sweat test at our local hospital was a 63. The nurse practioner we saw said she could tell us that she was 98% sure ds did NOT have cf. They had had 2 patients in the last month that had false positive...
My youngest ds age 11 is scheduled for an appt.on 5/21. He is supposed to have a chest x-ray and lung function test. We were supposed to see one of the Dr.'s but got a call from them last week and they had to reschedule and now we are to see a nurse practioner. I would have rather he see the...
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