Question

anonymous

New member
Hi. My son has been sick off and on for the past 3 yrs. They say it's allergies which leads to bronchitis and has led to pneumonia. Currently we are looking at his adenoids. If they are enlarged, then they are planning on removing them. I'm wondering if I shouldn't talk to his doc about CF. He has salty skin, extreme when he sweats, gets out of breath easily, stinky toots, large bm's and has a constant cough and lately low grade fevers. I'm really frustrated! He will be 7 this month. Am I over reacting? Just looking for any suggestions. Thanks!

Lauren
 

Emily65Roses

New member
If you suspect it, demand a sweat test. It's for your son's health. If you think a sweat test is warranted (and I tend to agree from what you've said), demand that they set up a sweat test for him. If your doctor won't help you set up a test, go to another. One thing we learn from being so involved in the medical community, is to never take no for an answer, and always question question question! Doctors can be smart, but they're people and make mistakes. If they try to give you any phony baloney about no family history or blah blah blah, don't buy it. I was the first, and am still the only CFer in a very large extended family.

Just one piece of advice we extend to all parents having their kids sweat tested... make sure the place he's getting tested is an accredited CF care center. Doctors can be as smart as they want, but if they're not specialized in CF, they VERY OFTEN either perform the test or read the results (or both) incorrectly. You can find a CF center near you at the following website:
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
Good luck. <img src="i/expressions/rose.gif" border="0">
 
2

2sickkids

Guest
I agree with you and Emily65roses make them test if they will not get another dr to. That is what I had to do with my oldest son. If they test and it is negative good then look to another cause. If they test and it is positive then you can do every thing to help your child along the way.
 

anonymous

New member
Lauren, I agree with what emily said. I don't think you are over reacting at all, it is very reasonable to be concerned about someone you love, especially your child. From what you said about your sons symptoms, it does sound like something isn't right. Depending on your insurance you may need a referral, you should definately request a referral to a CF accredited physician. Good luck and my thoughts and prayers are with you. If you are willing, please do share the outcome of the test with us. And if you have any struggles with the doctors, please don't hesitate to come back here for advice on that because chances are someone else has had the same or similar struggle.

Julie (wife to Mark 24 w/CF)
 
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