Grandson possibly has CF

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New Member

Date Joined Jan 2007
Total Posts : 4
   Posted 1/28/2007 8:12 PM (GMT -7)   
Hi everyone.  My daughter found the Mayo web site and that led me to this site.  I am glad she did.  Her son is going to be tested in Feb. for CF, the sweat test.  He is a snotty little fella and only 18 mos. old.  Last October he had his adnoides (SP?) removed.  His Dr. at Nemours  said that he had so much mucous in his lungs that he couldn't get all of it out.  He tried!, but too much.  He has been diagnosed with Chronis sinusitis, asthma, has allergies to eggs(deathly allergic to these), mold, dust mites, and one other thing I can't remember.  He is not a little guy either, he is in the 98 th percentile for his height and weight.  He has just started to walk at 18 mos.  He didn't seem to want to put his feet on the floor.  Also, he constantly takes off his shoes or socks and does not want them on.  He loves for us to massage his feet, then sometimes in his car seat he will pull at his feet and legs and just holler.  His feet are kinda squared, flat footed and fat.
Anyway all of this has my daughter fretting and worrying the worst.  I am trying to stay optimistic.  Alan, if you are there could you comment on any of these sysmptoms/problems I mentioned?  I would appreciate hearing from you.  The ENT PEDS Dr. Roy said it was just to rule it out.  Seems kinda funny that he wants to rule it out when he has requested it so easily and then other docs don't seem to request it that easy.  How did you know your daughter had CF?  Any sure signs?  Thank you so much for sharing.

Regular Member

Date Joined Apr 2006
Total Posts : 105
   Posted 1/31/2007 9:23 AM (GMT -7)   

Hello Pat and welcome to Healing Well. :-)

There are several tests to do for a CF diagnosis. First the sweat test, possibly a fat fecal, throat swab/cultures a dna gene analysis, even a NPD (nasal potential difference test).  Did his ENT happen to see nose polyps?  Docs can put the whole "picture" together and come to a conclusion.

Hope you get a diagnosis soon to what is ailing your grandson.  I know this can be a very difficult time for all involved in your grandson's life.  Hang in there and no matter what the outcome it sounds like your grandson will be in very good hands.

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss
Cystic Fibrosis Co-Mod

New Member

Date Joined Jan 2007
Total Posts : 4
   Posted 1/31/2007 12:06 PM (GMT -7)   
Thanks Sandra. I don't know about the polyps, I just know he is the one who wants the CF test. Tell me what do the feet look like if they are in fact clubbed. He really seems to have a lot of problems with them. He is flat footed, they are red when he stands on them and always cold but he doesn't seem to mind them being cold, he never wants them covered up. Or is this just a baby/guy thing?


New Member

Date Joined Feb 2007
Total Posts : 1
   Posted 2/15/2007 10:46 AM (GMT -7)   
Hi Everyone,
My soon to be 4yr. old grandson just had a sweat test done to check for CF and his results were confusing. On a scale from 1-50 he registered a 53. Does anyone happen to know what this might mean??? The reason my daughter took him to have this test is because he has bouts with diarrhea weeks at a time.Please let me know if you can tell me anything about this high ##.
God Bless,
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