Hello. I've had a hard time even deciding to post this question, let alone actually asking his doctor to consider testing for CF. My son is 13 months old, and he has had GI problems since birth. He has GERD and could not tolerate any solid foods till 10 months old. He vomits 2 or 3 times per week on average, and he often has mucous in his poo. His vomit is usually very mucousy too. I never thought of CF until recently because he has had chronic sinus infections, cough, asthma, and one virus after another all winter. His doctors think he's fine and that he's just been unlucky. I guess they are probably right, but all the mucous makes me wonder. Should I just wait to see if he gets better now that spring is coming? I mean, he has some relevant symptoms, but he also is not THAT sick. I really can't tell anymore if I am too carried away with worry or if I am on to something. Thank you for any thoughts.
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can't decide if he should be tested
- Thread starter anonymous
- Start date
Have you asked the Dr. specifically about the possibility of CF? If not, I'd start there and maybe ask the Dr. about getting a sweat test. It's not an invasive or particularly expensive test. Do you know if you or the other parent are CF carriers? If either are, it would be another reason to pursue the test. On the other hand, have you been to an allergist or had a GI test done to see if there are any structural things behind the reflux/vomit/poo? Lots of symptoms look like lots of diseases to most of us non-doctors.
thelizardqueen
New member
If you decide to test (and I would if symptoms pointed to CF), I would get a sweat test done, and then a DNA test. There is a such thing as a false negative sweat test, but not a false positive sweat test. Hence where the blood test comes in. Just because there is no history of CF, does not mean that your child does not have it.
Have you licked him to see if he tastes salty? <img src="i/expressions/face-icon-small-smile.gif" border="0"> DS was tested shortly after he was born and he pretty much as the loose, shiny (greasy) stools if he malabsorbs. Different CFers have different symptoms. Some don't have the loose stools -- know of a couple with constipation issues. Some have more sinus type problems... And there are other conditions that can cause some of the symptoms you're describing -- allergies, celiacs.... IMO, get tested, so you can find out for sure. Liza
My first thought, after just seeing the title of your post, was "Get him tested!" What do you have to lose? More information is good information one way or the other! My child, with CF is also "not that sick." But I know that everything we do for her now (Chest PT, enzymes to help her absorb nutrietnts, antacid to help with refllux...) contributes to her good health further down the road. You have every reason to be suspicious that there is CF or another issue. Please don't take "Unlucky" as a diagnosis. Get a sweat test to start.
Thank you all for your replies. I will be scheduling a follow up with the GI we saw once before, and I will try to work up the nerve to ask directly about CF. I know there is a good chance he will outgrow all the issues he has had, but I have a nagging feeling that we are missing something. He has not had a lot of testing - an upper GI, which was normal, and limited food allergy testing, which was negative. He also stopped gaining weight for a few months, but he has put on a little again recently. I am discouraged because I think that I will likely be brushed off as paranoid if I ask for testing. I think I need to push for the doctors to start ruling out underlying problems at this point though.
I also wanted to suggest to write your concerns down ahead of time. Do not feel wierd to even take out the list and read it to the doc. Sometimes , people get nervous around docs forget what there going to say etc. I've even just handed my written list to the doc, usually(the good docs ) smile.
Rebecca(mom to Sammy 7 no Cf and Maggie 3 with CF)
Rebecca(mom to Sammy 7 no Cf and Maggie 3 with CF)
<b>You are not being paranoid !!! Be assertive with your doctor, you have some VERY LEGITIMATE concerns.</b> Any reasonable doctor should take you seriously and run either the sweat test or the fecal fat or both without giving you any hassle about it.
I hope you son is just "unlucky" or "will grow out of it" but it's not fair to him to wait any longer to find out! <b>If he does have CF, waiting to find out is of NO benefit to anyone, BUT getting it diagnosed and treated sooner IS !!</b>
If you want to hear another story of kids that "were not sick" but do have CF, please click on my blog link below.
I hope you son is just "unlucky" or "will grow out of it" but it's not fair to him to wait any longer to find out! <b>If he does have CF, waiting to find out is of NO benefit to anyone, BUT getting it diagnosed and treated sooner IS !!</b>
If you want to hear another story of kids that "were not sick" but do have CF, please click on my blog link below.