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Re: my 3 year old HELP!!!

Re: my 3 year old HELP!!!

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Posted by leslie on July 26, 2000 at 14:56:46:

In Reply to: my 3 year old HELP!!! posted by holly gallahue on July 26, 2000 at 13:04:41:

: ok here is the deal she has had oil in her stool, stomach pain, leg pain all now for 4 months. we are seeing a pediatric GI her IGG antibody are elevated for celiac disease i put her on a gluten free diet and she has been better. well they did a sweat test to rule out CF it came back chloride 32 and sodium 52 so now they want to do another sweat test and a DNA blood test. why do both? if the blood test is more definitive(sp?)why not just do it? Taylor has never been sick a day in her life except with the gastro problems for 4 months now.I thought children with CF are sick. i guess i am jsut rambling but i am terrified and the doctors dont seem to have any answers. thanks for any info Holly


Holly,

I think (don't know for certain)the reason the doctors give a sweat test first is that it is less invasive than a blood test, provides quicker results, and if done properly will provide an accurate answer. The docs may be adding on a blood test, if your daughter does have CF, to determine which "mutation" she carries. Depending on the severity of the disease and the treatment routine, children with CF may or may not "be sick". The degree of severity of CF varies by child (some families have multiple children with CF and each can be different).

I understand how frustrating it can be when the doctors can't or won't explain things. When my son was born he needed abdominal surgery and was essentially diagnosed with CF. The pediatric specialists though wouldn't really go into what CF was or meant until the blood tests came back (10 days later!). They didn't want us to deal with the issue until we had to. I was frustrated because I really just wanted to find out about it.

A resource that may help you is the Cystic Fibrosis Foundation (www.cff.org). There is basic information about the disease as well as a listing of centers that specialize in treating CF across the country.

I empathize with you being terrified. I think all of us do. But there really is alot of hope and the most important thing is the child's happiness.

So, good luck and may God be with you during your trials. Please keep posting :)


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