Hi I'm new here to the forum and confused

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New Member

Date Joined Feb 2009
Total Posts : 7
   Posted 2/4/2009 3:22 PM (GMT -7)   
Hi, I am here looking for answers I am confused by what I have been told by two doctors. My story(My Son's story) I have a 7 year old son who will be 8 on the 9th of February and he has been having stomach pains for 8 months straight. I took him to his pediatrician who said maybe it was from his ADD medicine so we changed it and that did not help. We have tried 4 different ADD Medicines. They did stool samples and did a CT scan and everything came back normal. But he only weighs 41 pounds, he has a big appetite and eats really good. I finally called a GI doctor at Riley hospital and was seen by her on January 7th and he weighed 42 pounds then and she asked if the pediatrician had been concerned with my sons weight and I said no even though i had asked him if we should be. She said she wants to see him gain 2 ounces a month at least. And she ordered a complete blood panel on him not sure of everything that was tested but i do know he was tested for Celiac disease and that all came back fine. She has also done a Upper GI X-ray on my son and I am not sure of the results of that. But I had called because my son who weighed 42 on January 7th now weighs 41 pounds on January 26th and to this day. So she ordered a sweat test for my son and he tested 42 and she said that even though it is positive they want to do another test when he comes up for his endoscopy and colonscopy on the 24th of February. But when I speak to my sons Pediatrician he says that they don't label anyone with CF unless they test 55. And I asked about testing my daughter who is 6 because she has alot of breathing trouble and she has chronic sinus infections and alot of headaches. and has had two or three pneumonia episodes. And she tested 41 but her pediatrician says there is no more testing that he can do at this time. But she is growing and weighs 42 almost 43 pounds. I am just really confused and lost and trying to find out more so I can help my son to gain some weight cause he is eating alot and not gaining anything.

Thank you for listening and any information or advice anyone has please share.


Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted 2/5/2009 4:34 AM (GMT -7)   
Wow, I can understand your confusion.

Ok, the guidelines I have for sweat tests is:
<40mmol/l is not CF
40-60mmol/l is a borderline-grey area, the test should be repeated, or a genetics test done.
>60mmol/l is a definate postive result.

I don't get where the doc got his figure of 55 from. The figures I've give you, are the standard guidlines across the UK and in Austrailia too. Not checked up the guidelines for the US but, surely as everyone measures on the sweat test in mmol/l then they should all have to same guidelines:S
Plus, it seems people are less likely to stick to set guidlines over there. That's the image I've created anyway-because there seems to be no definate set guidlines for the US and it alters with every doc you see.

I hope someone can find something for both your sons and daughters symptoms. Things are so much harder when you don't know the root of a problem, and you're left guessing until someone finds a treatment.
Hope evrything goes well

Moderator of the Cystic Fibrosis Forums
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Post Edited (Darkies Gem) : 2/5/2009 4:37:10 AM (GMT-7)

Regular Member

Date Joined Jun 2004
Total Posts : 42
   Posted 3/27/2009 9:27 PM (GMT -7)   
Why can't the swab their cheeks and do a dna test?

It is simple and painless. It can also tell if you are a carrier of the disease or not, so if you and your husband/or father of your children to be PC, where to be tested, you would both have to be carriers in order to have a child with CF. If one of you is a carrier and one is not, your children may be carriers, but they would NOT have CF.

When my sisters got married and wanted kids they got tested for being carriers. One is a carrier and one is not. All it took was a swab of the cheek.



Diagnosed: Cystic Fibrosis, Diabeties, Osteoporosis, Marcus-Gunn, Hasimotos, Webber's Syndrome, Raynaud's, Reactive airway disease, Aspergillus, 2 strands of pseudomonas, scupluariopsis, ashthma, fibromyalgia, achromobacter xylosoxidans, scedosporium prolificans fungus, basliar migraines, frontal lobe seizures(in two doc's different opinions on this one), Depression
Medications: Too many
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Motto: It will be OKAY

Post Edited (Citty) : 3/27/2009 10:31:11 PM (GMT-6)

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