Just paranoid?

[CFHockeyMom]

I'm looking for some advice/opinions. As you know, my youngest son has CF. When he was diagnosed at 11 weeks we had our oldest son tested (sweat test). He was 2 1/2 at the time and the test came back negative. I don't remember the number and am not sure I ever knew it. CF was so new to me, and we were still in shock, that negative was all I needed to hear. Well, for the past few years, my husband has begun wondering if maybe the sweat test wasn't conclusive and our oldest does indeed have CF. He didn't suffer from any of the tell tale signs as a baby. In fact, he was a very healthy baby. However, as he's gotten older, we've made a few observations that have us wondering. Firstly, he's soooooo skinny. He eats and eats but is little more than a stick figure. Secondly, he is more prone to colds/coughing than our "official" CFer. In fact, he's missed more school than our CFer. Lastly, he's recently developed some digestive issues. Nothing consistent but still worrisome. Are we just being paranoid?

My husband would really like to have the Ambry (sp?) blood testing done. My question is how do we go about getting this done? Should we go through our regular pediatrician or pressure our CF Dr?

Thanks in advance.

 

[JazzysMom]

Unless your regular pediatrician is associated with an accredited CF clinic, you should go through the CF doctor. Its important that any CF testing be done by an accredited lab to avoid problems. Was your older sons sweat test done by such a lab/clinic? Do you know? If nothing else it should be done to rule out the CF. You are his spokesperson so get speaking!!!

 

[ErinsMommy]

I don't think that you're being paranoid at all.
I think it's completely normal for a parent... if they have a child with CF... to get their other child(ren) tested and if it came back negative and you want to do it again for your own peace at mind... that's your right.
Goodluck with everything!

 

[anonymous]

i often wonder the same thing.. my son is almost 4 and has cf my oldest is almost 7.. he has had a sweat test and it was normal and its just eating at my brain wondering if it is actually normal or if there is still a chance he could have cf.. he is at a good weight but he eats like a horse and also coughs alot at night.. hmm maybe at my next clinic i will see what they say.. jsut wanted you to know that your thoughts are normal..


Melissa

 

[denise]

My pediatrition ran the blood test for us to check our other children after the baby was diagnosed. I told him the exact kind of cf my other child had and he ordered the blood test. The Cf doctor did not know our older children so I did not even ask him.
I wouldn't even tell the doctor he has had a sweat test just explain why you want the blood test.
Good luck

 

[CFHockeyMom]

Just a quick follow-up...

We are having our older son retested (sweat test) and a blood test. Seems his pediatrician was a bit nervous about the giant salt ring on the bill of his baseball hat. She ordered the tests to be done through our CF center.

I'll let you know how it turns out.

 

[anonymous]

YOu shoulc have him genetically screened with a blood test. He will probably want to know this info when he's an adult.

 

[CFHockeyMom]

Just wanted to update you all...

Neil had his sweat test today, only a 26. So, it does look like we were being a bit paranoid but we're still having the blood test done. If nothing else, we'll find out if he's a carrier and of what gene.

 

[rose4cale]

I don't think it's being paranoid. I think it is natural to wonder, especially since so many kids and young adults are diagnosed late. We are also going to have our daughter tested, especially since she will hopefully be a Mother some day. It would be nice to know if she is a carrier ahead of time. We waited to have her tested until we did a life policy on her, just in case. Now that that is in place, she will be tested. Let us know how the genetic test turns out.