Hi group,

I'm a military wife and Mom of 4 boys. One of my twins, who is 9 1/2
year old has been sickly for the last several years. For the past 7
years I've been actively trying to figure out what the heck is wrong
with him. He was born smaller then his twin and to this day, doesn't
thrive as well as the other boys. He's small for stature, rail thin
and always sick. About 7 months ago, his pediatrician put him on
pancrease to help with digestion (but didn't tell me why). Prior to
the pancrease, food would seemingly run right through him. He also
has bad reflux, for which he takes medication. When the pancrease
worked so beautifully the ped. suggested that we get him a sweat
test and told me that he may have CF. I'm finally just now getting
around to his appointment. I guess in my area, all of the area
hospitals use the same hospital to do this test, so it takes forever
to get in.

This past weekend I had to take him to the emergency room bc he was
having episodes of severe chest pain, heart palpitations, dizziness,
nausea and just felt very clammy. At one point he almost blacked out
and when I got to him he was holding on with both hands to a towel
rack to keep from falling over. At the ER, they did an EKG and took
chest xrays. After monitering him for several hours, the ER doc
couldn't find anything immediately wrong with him but told me to
mention it at his next pediatrician exam. The following morning I
got a call from the ER nurse. She asked if I'd been told to come
back in for additional xrays. I hadn't, so I began asking her
questions. She said that the radiologist had reviewed films after we
were discharged and that he saw something "questionable". That was
all that was said,

Fast forward, I get him in to see his pediatrician and update him on
what happened @ ER and that we needed more xrays. He listens to my
sons heart for a LONG time (oh, I was told @ ER that they found a
heart murmur that hadn't been previously diagnosed). He confirms the
murmur. He goes out of room to review xrays and is gone for a long
time. When he comes back in room, he's with another docter and they
both listen to his heart for a long time. He's sent for another EKG,
a lung test and then when I get to sit down and talk to the docter
again, he shows me the xrays that were taken @ ER. Two of the valves
in his heart are enlarged. And there are lots of blood vessels
leading away from the heart where they shouldn't be. He asks about
getting a sweat test done and I tell him that I have one sheduled
for this week. He says, "I'm not saying it's definately CF, but this
is consistent with what we see in CF patients."

Nick, my son, has never really had any extrodinary lung infections
or mucus issues. Is it possible to still have CF? I've been looking
online to see if you can have some of the symptoms of CF and be
diagnosed with it. He definately has everything that points to CF
aside from the respiratory ailments.

He has the sweat test and CT scan sheduled (sweat test this week and
CT scan the following week). It's taken us so long to get to this
point. I started questioning his growth when he was 2 years old.
He's never been on any of the growth charts for height or weight.
There have been times where he comes in JUST below the bottom of the
lowest line, poor baby. He's almost 10 now and his height/weight are
becoming more of an emotional problem now. I get so frustrated that
I've been begging docters to test him for years bc I knew that
something was wrong. I've always been assured that he was "just
fine". Uggg....

So, my question, at the end of this long book, is for those parents
that have a child with CF: Are the things that I've described
consistent with CF? Can you have CF without the respiratory
ailments? What has been your experience with having a child with CF?
I am very scared, but I'm anxious to get a diagnosis one way or the
other. At least when I know what's wrong, I'll be able to take steps
to treat it.

Thank you for reading if you've made it this far! Any advice or
comments would be appreciated. Thank you in advance!

Regards,

Kerry