My son

[Allie26]

My son is 4 1/2 months old and he is failure to thrive. He is still
not on the charts and weighs just a little over 10 lbs. His birth
weight was 6.12.  I do not think that he has been tested for
CF. He has had pyloric stenosis that required surgery at 5 1/2 wks.
He eats a lot, but does not seem to gain weight. He has a slight
cough, but his bowl movements are normal. He has usually 1 a day,
sometimes 2 and they do not look oily to me. He doesn't wheeze, but
he sneezes a lot. His skin overall does not taste salty, but the
top of his head does. I asked my GI dr. about CF and he said that
he doesn't have it. Can he know that without doing a sweat test? He
did have endoscopy done where they took a stomach tissue and tested
it? If he had CF, would that come up on the tests? Should I ask for
a sweat test from my pediatrician? I was also wondering if a baby
could have CF and not have the large oily foul smelling bms. My
son's bm smell, but they aren't that bad. Am I just being paranoid?
My son is so tiny. I worry about him a lot. He is very active and
smiley. He doesn't cough all day long, just every now and then.

 

[anonymous]

Allie26,

You need to demand that the test be done for CF, either sweat test or genetic test. My son was born and weighed 6lbs, 10ounces, and was not diagnosed until he was ten months old. He never made it back on the growth charts until he was about 2years old. He virtually was starving to death by the time he was finally diagnosed. My son did have the oily poops, salty taste, but no cough, wheezing etc., and for that reason I think that CF was never thought of. I was the one who finally asked for the CF test to be done after lots of researching and late nights with my son who was so very sick for so long before he started to get the medical treatments that he needed. It was a very rough first year or so, however, he is now 3 1/2 and on the growth charts, and advanced developmentally for his age. He was hospitalized 5 times in two years and I would due to my experience not want anyone else to have to wait for something that could've/should've been done.

Be his strongest advocate. He'll love you for it and you may find the answers that you need the more you push.

Lots of people here with lots of good advice, so ask away.

Deanna
(mom to 3 1/2 year old w/cf)

 

[JazzysMom]

I wasnt dx until 7 years old. I didnt have respiratory issues at that time. Mine were ALL digestive. Everytime I ate it put me on the toilet with bad cramps & smelling diahrea. It made my first few years of school hell. I wasnt classified as failure to thrive because I pretty much held my own in the weight etc. I was tested for every food allergy & anything else the Allergist could think of. When he ran out of ideas he referred me for the sweat test. No ??? about the postive results. Once we had a reason & I was put on the enzymes etc my life became "normal". Push for it!

 

[anonymous]

I'd ask your doctor to perform the test. Have you asked him what he thinks your child does have if he doesn't believe it's CF?

DS's doctor told us that most cfers are born with normal lungs. So a lot of times the upper respiratory problems don't show up until later on. A friend of my MIL's tells the story about how her friend, had a baby that ate like a pig and didn't gain any weight. They were both nurses, and the friend LICKED her son and said, I think he has CF. He tastes salty.

Liza

 

[Abby]

My daughter started her respiratory problems at 2 months old, the foul-smelling, greasy poo came when she was about 4 months old, Christmas Day to be exact. She was diagnosed at 5 months old, she weighed just over 10 lbs at the time and was 8 lbs when she was born. I only notice the salty taste on her forehead, never anywhere else.

Definitely ask for the test, how can the doctor make a determination without it?

 

[Allie26]

I notice the salty taste on his forehead only too. He doesn't have
the foul smelling greasy poop at all. He doesn't have big bowel
movements either and he is 4 1/2 months old. Could he have the
conditions and not have those type of bowel movements?

 

[julie]

CF affects everyone differently, even siblings in the same family with the same mutations. It is possible that your son could have CF and not have the bad bowel movement problems.

Many with CF have a variety of ailments. Some have digestive, respiratory and reproductive problems, others have just digestive, or just respiratory or just reproductive. Or different combinations of the three. That is why CF can be so difficult to diagnose. Many doctors are looking for ALL three symptoms otherwise they conculde the person DOES NOT have CF. THis is so common, but unfortunately is is the worst way for a doctor to diagnose or not diagnose CF.

I would definately have a sweat test or blood (genetic) test done on your son.

 

[anonymous]

I think it is understandable for you to be concerned about your son. I think it is reasonable to do a sweat test/genetic test on your son to rule out CF. What would it hurt? Failure to thrive is one symptom of CF. Your child's pediatrician can order the sweat test, however make sure it is done at an accredited Cf Center(sometimes you can get a false negative test). You can find an accredited CF Center at www.cff.org and look for a center near you. My daughter does have CF and does NOT usually taste salty, so it is not always a good indicator for CF. My son who does not have CF Does taste salty, go figure.

Alot of docs do not know alot about CF so sometimes they give you very outdated information. It is best to go to a accredited Cf center for info as they have the most current info.

Hopefully your child does not have CF, it's more likely your child does not have CF that does. But to rule it out would put your mind at ease as well as if your child did come back having CF, you'd know and be able to treat him with all the current meds/treatment that are available today.

Rebecca(mom to Sammy7 no CF and MAggie 3 with CF)