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Trying to figure out if my son has CF

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Cystic Fibrosis
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Posted 6/26/2008 3:47 AM (GMT 0)
I am really baffled.  My 3 year old son has been recurrently sick.  At 18 months he had ear tubes placed for repeated ear infections.  Then, at 2 1/2 he started to get sick almost every month.  He would run high fevers, and his tonsils would look sick, his lympho nodes would swell in his neck, but very seldom did he have strep.  Our pediatrician ran numerous tests from everything to leukemia to systemic lupus, and many others in between.  All came back negative.  He has never had a lung infection, sinuses were clear on X-Rays, and no digestion problems.  When he has been sick, there is no cough,  there is no mucus (sometimes a slight clear runny nose)  He weighed 9 pounds at birth and has been in the 50th to 90th percentile for growth ever since. 

Our doctor said, "I don't think he has CF, but let's get a sweat chloride test to rule it out."  To our surprise, the sweat chloride came back at 60.    We then were sent for Mutation panels.. one through our lab and then one through Mayomedical for what we were told screened for more mutations.  Both of those labs came back negative for CF.  Not one showed up. 

I understand there are many other mutations.

Can someone NOT have CF and have a sweat chloride of 60?

My son just had his tonsils and adenoids removed on Friday, and is scheduled to go for another sweat test on July 1st.

We feel so confused.

My son is the youngest of 5 children and none of his sibling have CF...his sister is Type 1 diabetic and insulin dependent.

Thank you for any thoughts, clarifications or suggestions. 

Posted 6/26/2008 10:12 AM (GMT 0)
Hi there,

Wow, this must be so confusing for you. I will do my best too answer your questions, though I think the only way you will get real answers too suit you and your child, is by going back too your doctor and asking for his opinion on things.

The figures I have for sweat tests are:

If the concentration of chloride is over 60 mEq/L, the test is positive; 40-60 mEq/L is borderline; under 40 mEq/L is negative.

It is very possible that as your child is at the very top of the borderline range, it isn't CF. There is always like a 2% chance that the test isn't accurate on some people. I'm glad you're going for another sweat test though, as it may give a clearer result than the previous one.

I would say, showing no real major symptoms of CF, and with no genetic mutations that your son probably doesn't have CF. I've never actually heard of anyone having CF, but not been able too find at least one of the gene's. But then I'm not a doctor, only a patient.

My sister has loads of problems with her tonsils and throat infections, and ear infections and is asthmatic. Though if she did have CF, she would have at least one copy of Df508 muation-the most common. But, she hasn't. It's weird because she actually has more time off school than me and my brother (both of us have CF) ever had.

Good luck on the 1st, and hope things can be made clearer for you. Hope your little one gets better soon.

Gem

  

Posted 7/3/2008 8:02 AM (GMT 0)

Hello...this is my first time here.  I am so thankful to have found this sight.  My grandbaby, Ellie was just diagnosed with CF.  She will be only three weeks old tomorrow.  My first thought would be to have yourself and the father of your child tested to see if you are both carriers of the CF gene.  I understand you both have to be carriers for your child to have CF.  There is a 1 in 4 chance of having CF for any pregnancy you might have.  If you are not both carriers, then your child can't have it.  If I'm wrong, please anyone, correct me.  But this is what I've heard over and over again.

    The tests for Cystic Fibrosis....genetic screening are pretty conclusive if the child is tested....they do further testing and can know for sure.

Posted 7/9/2008 3:59 AM (GMT 0)

This is very similar to your case.

I need help!  I have a nephew that was tested two weeks ago and had a sweat test that was 49 and then retested sweat test on another day and it was a 61.  I have three boys and I had taken my youngest (7weeks old ) in for a check up and she checked his chart and his newborn screening he tested neg for CF.  She wanted to have my 5 and 3 year old boys tested with the sweat test just in case.  They were tested today and had high borderline scores of 47 and 44.  My nephew and my boys are all healthy kids.  This would also mean that me, my husband, my sister and my sister's husband are ALL carriers of CF.  This is astronomical.  My pediatrician mentioned something about mosaic gene??? A gene that maybe mimicing CF?  The reason my nephew was tested is that he had a sinus infection and the ENT does a "routine" check on all his patients with sinus infections.  I have called lots of relatives and in all the families mentioned as far as we can go back no one has been diagnosed as having CF or has died at an early age with unknown death.  Please if anyone has heard of similar cases then please let me know.  My ped is talking to a lung spec in the morning and we will go from there. 

 

My  5 year old does have ear infections a good bit and is going to have surg (tubes on the 23rd) to correct this.  I'm so confused.

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