My daughter is being tested

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anonymous

New member
I'm confused why they would do a throat culture/swab to test for CF. DD was diagnosed at birth because of meconium illeious/bowel obstruction. Her sweattest was normal -- not borderline, not inconclusive, but a low normal number. The genetic blood test showed otherwise. She was given the stool elastase test by a dietician while hospitalized, but the doctor's comment was "we already KNOW she has CF and has pancreatic insufficiency, so the test isn't needed"

I know you mentioned that your doctor was with a CF accredited clinic. Is he part of the CF team or does the hospital/clinic you're going to have a CF Clinic. It could be that the doctor you're going isn't affiliated with the CF center. We went to a hospital with an accredited CF clinic on an upper floor, but DD was in the NICU and time after time the neonatologist on call would say one thing, while the CF doctore would say something else. IMO get a second opinion.
 
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JazzysMom

New member
The CF doctors in ??? are part of an accredited CF clinic? This means that they get funding & backing of different sorts from the CF Foundtion, but in return must follow guidelines about different things issued by the foundation. I am very curious as to why you are having such a fight when early treatment is so critical. Did you & your husband get tested? If both of you are carriers then it is a greater chance that she does have CF if only one of you is a "known" carrier then she might be a symptamatic carrier. This is a phrase that I heard of, but personally dont believe in. She had one mutation identified so they classified her as a carrier. It is possible that the other mutation is more rare & didmt come up on the panel mot tested for. I feel your frustration & all I can do is tell you to fight for your little one. Get answers...fight, fight, push, push until she are comfortable with the responses!
 
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debs2girls

New member
Melissa, Cheyenne was adopted at birth that is why we cant test us to rule out/dx for sure. I would like to have the agency contact her bfather about testing but he is married now and I guess she doesnt know about Cheyenne. We speak to the bmom on the phone, but we have never met and I dont know if I should ask her about it. I did ask the dr on Monday if I should contact the agency so she can let the bparents know about Cheyenne so they can do testing or whatever and he said to wait til we know more.
Her blood was tested by Ambry and they only found one mutation, 3120 G to A, but the dr said the other one was probably futher down the line.
I assume the dr is part of an accredited cf clinic. Someone posted a link to find out about your dr being at a cf center and he is.
 
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JazzysMom

New member
Well that explains the biological parents not being tested. I did not realize Cheyenne was adopted. I really hope you can get a resolution for your daughters sake..................Its a HURRY UP then wait situation. LOL>>>Do your best in the meantime, but I still say be pushy parents & advocate for some real answers!
 
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anonymous

New member
hello Debbie, my name is Janice and my 5 year old daughter is being tested as of June 21, 2006 for CF. I really don't know what to expect at this point of course we are praying that she don't have it and I just had to turn it all over to the Lord for him to do his will. We will go back to the doctor on Friday to do CT's and te sweat test as well as get a TB skin test read. I guess I was just wondering how you guys were holding up and what can I expect.
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

hello Debbie, my name is Janice and my 5 year old daughter is being tested as of June 21, 2006 for CF. I really don't know what to expect at this point of course we are praying that she don't have it and I just had to turn it all over to the Lord for him to do his will. We will go back to the doctor on Friday to do CT's and te sweat test as well as get a TB skin test read. I guess I was just wondering how you guys were holding up and what can I expect.</end quote></div>
 
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anonymous

New member
also am curious on how long it takes for the test to come back. Kelleigh my 5 year old has already don ete blood work yesterday and i'm not exactly sure of what all they are testing her for with as much blood that they have drawn from her. If you have any answers please let me know.






Thanks,
Janice
 
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candiebar76

New member
Debbie,
As I was told "a tentative welcome to the CF families". We are ubdergoing testing for our son (6 years old) that had similar problems durring his first year and has continued to have more minor symptoms . Thankfully no pneumonia, but a lot of the other symptoms. His sweat chloride was 49 and this morning we are getting the 36 panel mutation test. We are at a non CF clinic for now. He also has a CT scan this afternoon. My prayers are with you. Keep us posted.
Candace
 
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Ratatosk

Administrator
Staff member
I seem to recall the sweat test results were within an hour or so. With the blood tests, the one was done on a Sunday and we got the results back on Thursday evening. They did another blood test on Monday or Tuesday, not realizing the local hospital had done so before lifeflighting him to Childrens and we got those results back within a week.
 
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candiebar76

New member
<div class="FTQUOTE"><begin quote>am curious on how long it takes for the test to come back</end quote></div>
My son just got back from the DNA testing. They told me the results should be in by Wednesday. That is for the 36 panel, not sure if larger panels take longer. I keep praying that if this is the route we should pursue with the constant infections that at least 1 mutation comes up. We feel it will be more likely that the insurance will approve the accreditated CF Dr.'s and the extended test of all 1300 known. If not the fight will go on.
Candace
 
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anonymous

New member
Sweat test results are usually the same day but sometimes it takes another day or two for your dr to get the results to YOU. DNA testing varies. The shorter panels only take 1-2 weeks but the longer, extended panels can take 6 weeks, sometimes more. As far as CT scans, the techs usually know the answer that day but it takes another day or so for the radiologist to read them.
 
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