Guest guest Posted November 23, 2003 Report Share Posted November 23, 2003 Rhonda, I didn't know that Joradn was in the hospital. Has the Columbus clinic done a CT scan of Jordan's lungs? Abby had repeat pnuemonias. That is why they tested her for CF. You and Jordan have really been through a lot. Please keep us posted. If you come back to Columbus, let me know. I am going to be out of town a lot between now and the end of the year, but if I'm here I'd like to meet you. Gale > We are FINALLY home from the hospital! I feel so FREEEEEEEEE! LOL I > was going insane in that place. Jordan is feeling a little better > but at least he kept his fever down last night so they let us go > home. We have an appt Friday to see the dr and he has to have more > chest x-rays before his appt... probally Wednesday is when they will > set it up for. As for now though we are home and loving it. I was > soooo ready to come home. > > We have been in the hospital here since Tuesday!! Jordan had > Pnemonia(spelling) Is this consistant with possibly having CF? His > last test was 39 at Columbus hospital. It has been 80, 58, 57, and > then 39... is this normal? Can someone PLEASE explain this to > me?????? > > Email me at thearthurs3@z... > > Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2003 Report Share Posted November 23, 2003 Yea we went in on Tuesday and just got out yesterday(Saturday) morning. They have done x-rays of his lungs but Im not sure if that's the same as the CT scan. I dont think it is. Rhonda > > We are FINALLY home from the hospital! I feel so FREEEEEEEEE! LOL > I > > was going insane in that place. Jordan is feeling a little better > > but at least he kept his fever down last night so they let us go > > home. We have an appt Friday to see the dr and he has to have more > > chest x-rays before his appt... probally Wednesday is when they > will > > set it up for. As for now though we are home and loving it. I was > > soooo ready to come home. > > > > We have been in the hospital here since Tuesday!! Jordan had > > Pnemonia(spelling) Is this consistant with possibly having CF? > His > > last test was 39 at Columbus hospital. It has been 80, 58, 57, > and > > then 39... is this normal? Can someone PLEASE explain this to > > me?????? > > > > Email me at thearthurs3@z... > > > > Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 The CT scan provides a better picture. Abby's doctors do a CT scan every 6 months. Gale > > > We are FINALLY home from the hospital! I feel so FREEEEEEEEE! > LOL > > I > > > was going insane in that place. Jordan is feeling a little > better > > > but at least he kept his fever down last night so they let us go > > > home. We have an appt Friday to see the dr and he has to have > more > > > chest x-rays before his appt... probally Wednesday is when they > > will > > > set it up for. As for now though we are home and loving it. I > was > > > soooo ready to come home. > > > > > > We have been in the hospital here since Tuesday!! Jordan had > > > Pnemonia(spelling) Is this consistant with possibly having CF? > > His > > > last test was 39 at Columbus hospital. It has been 80, 58, 57, > > and > > > then 39... is this normal? Can someone PLEASE explain this to > > > me?????? > > > > > > Email me at thearthurs3@z... > > > > > > Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Rhonda, Below is a description of another diagnostic test for CF. It is not widely available, but from what I understand it is a very accurate test. It could be something to discuss with your doctors. Nasal potential difference measurement Potential difference (PD) (voltage) measured from nasal mucosa and the reading obtained by a reference electrode inserted into the forearm correlates with the movement of sodium across cell membranes, which is a physiologic function rendered abnormal by a CFTR mutation. A normal mean value standard error (SE) is 0.9-24.7 mV; an abnormal value is 1.8-53 mV. When measurements are repeated after mucosal perfusion with amiloride to block an epithelial sodium channel, the drop in PD is greater in patients with CF (73%) than in control subjects (53%). Normally, subsequent perfusion with chloride- free solution and isoproterenol produces a sharp increase in the PD but has little effect when CFTR function is abnormal. As a result of the lack of commercially available equipment and the practical difficulties with nasal PD measurement, this test is performed in only a few research centers to diagnose CF in patients in whom making a diagnosis is difficult or a sweat test is not technically possible because of skin problems. Sara > We are FINALLY home from the hospital! I feel so FREEEEEEEEE! LOL I > was going insane in that place. Jordan is feeling a little better > but at least he kept his fever down last night so they let us go > home. We have an appt Friday to see the dr and he has to have more > chest x-rays before his appt... probally Wednesday is when they will > set it up for. As for now though we are home and loving it. I was > soooo ready to come home. > > We have been in the hospital here since Tuesday!! Jordan had > Pnemonia(spelling) Is this consistant with possibly having CF? His > last test was 39 at Columbus hospital. It has been 80, 58, 57, and > then 39... is this normal? Can someone PLEASE explain this to > me?????? > > Email me at thearthurs3@z... > > Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Rhonda, This is a quote from one of the most trusted sources of cystic fibrosis literature, M. Orenstein's " Cystic Fibrosis A Guide for Patient and Family " copywright 1997, and here is what he says about the sweat test. It is done on both arms to make ensure that enough sweat is collected, most CF accredited centers do it on both arms. " The sweat test has been the gold standard " for diagnosing CF for over 40 years and when done by an experienced, reliable laboratory, the sweat test is still the best test for CF. There are no false positives (people who test for CF, but don't really have it) and no false negatives (people whose tests say they have it, but don't really have it). Once a test result is positive, it is always positive. Nothing changes as a patient grows older. And sweat test values do not vary when the patients have colds or other temporary illnesses. I need to stress the importance of the laboratory doing the tests. Most CF centers find that CF has been misdiagnosed in about half of all of the patients they see who have been tested by inexperienced laboratory personel. Sweat test laboratories associated with an approved CF center, have passed accreditation by the national CF Foundation, and can be trusted. Many other laboratories are also good, but it is harder to know about those not in CF Centers. so goes on to say about unusual cases: it may be difficult or impossible to make the diagnosis in a usual way. Examples might be a patient who doesn't make enough sweat to analyze or someone whose sweat test results are in the " gray zone " - neither clearly negative nor clearly positive - AND genetic testing has been inconclusive. The physician then must consider the WHOLE picture - what are the patient's lungs like? What germs grow on throat cultures? Does he or she have abnormal sinuses on x-rays? Are the stools abnormal? Is there finger clubbing? Occasionally the physician and the family will decide that that the wisest course of action is 1) to accept that for the time being that a definite diagnosis can not be made, and 2) to decide to treat the child as if they HAVE CF. This makes sense because the treatments are not harmful for someone who doesn't have CF but NOT getting the treatments could be very harmful for someone who does have CF. Rhonda, > > I didn't know that Joradn was in the hospital. Has the Columbus > clinic done a CT scan of Jordan's lungs? Abby had repeat > pneumonias. That is why they tested her for CF. You and Jordan have > really been through a lot. Please keep us posted. If you come back > to Columbus, let me know. I am going to be out of town a lot between > now and the end of the year, but if I'm here I'd like to meet you. > > Gale Quote Link to comment Share on other sites More sharing options...
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