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Looking for CF input and information please

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Old 07-08-2010, 01:13 PM   #1
Join Date: Jul 2010
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marloann HB User
Looking for CF input and information please

Hello Everyone,

I am new and though to date there has been no diagnosis of CF I felt that I had a bit of questions since my 5 year old daughters sweat test is scheduled in a couple of weeks and I am loaded with questions. Reading online comments donít generally answer my questions so I am hoping that maybe a few of you can. My daughter was diagnosed with asthma when she was 2 she had two cases of pneumonia at that time and since has had tubes in and out of both ears, her tonsils and adenoids removed and is always sick with a stuffy nose. We have had two allergists do a work up of tests and she has no allergies and then we did the CT of her sinuses a few weeks ago and yes she has been diagnosed with Chronic Sinusitis. My daughter has been on augmentin, prednisone for the asthma and various other antibiotics for really years. She shows symptoms of improvements and 2 weeks off the medicine she is sick. Always a sinus infection and always a cough. She also wakes up most mornings with a tummy ache which only lasts a little while. We have tested her bowel movements twice and found no irregularities. Up besides all I noted above my daughter is noted to be in the 99% of height and weight so weight gain is not a problem. It might be the pulmicort (breathing treatment) we do nightly for the asthma. I donít taste salt and she is pretty active. I need input and thoughts from moms who really knows CF. I feel that the sweat test will come back negative with no signs of CF because she is tall and has a little tummy (not heavy) just healthy. The test wonít come soon enough and yet I have weird feeling that I will leave with no answers to why my child is always sick. I am a concerned mom who needs some type of answer. Thank you for reading and hopefully responding.

Concerned Momma

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Old 07-09-2010, 07:32 AM   #2
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Join Date: Nov 2003
Location: Midwest
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Ratatosk HB UserRatatosk HB User
Re: Looking for CF input and information please

I'm assuming by stools tests they tested for fat -- fecal elastase to see if she's digesting fats. With her weight, she very well me pancreatic sufficient, so it wouldn't show an issue like malapsorption.

Did they find polyps in her sinuses? That can be a sign. Also ask them to run a CF culture on her sputum if she can cough something up or via a throat culture. I know of adults who were diagnosed with asthma and allergies because they were culturing common CF bugs such as pseudomonas, staph, mrsa...

Also, is the sweat test being conducted at an accreditted CF facility?

Old 07-09-2010, 07:57 AM   #3
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Join Date: Nov 2003
Location: Midwest
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Ratatosk HB UserRatatosk HB User
Re: Looking for CF input and information please

Also, even if the sweat test comes back as normal, IMO I would push for genetic testing. If anything just to RULE out CF so you can focus on other things to see what's causing her problems. There are over 1500 cf mutations. I'm not a fan of the sweat test as DS had a normal result. Also, absolutely no family history of cf.

I mentioned in the post above about running a sputum culture. What that will do is identify any bugs (infection) and it will identify what antibiotic the bug is sensitive to, so maybe they'll her infection is resistant to augmentin and be able to prescribe a different antibiotic.

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