Re: new member/AMANDA!

[Guest guest]

Welcome to our brand of craziness; we try to be sane on this list and

offer high hopes that your child does not have cystic fibrosis as well.

You are a welcome member in any event, from my point of view. And

I thank you for joining us; you will find other multiply diagnosed kids

and parents and sometimes both on this list. Love to you and to all

of yours, n Rojas, with cystic fibrosis, 3 adults, one with cystic

fibrosis also. . .

new member

Hi. My name is , and I have a 5 month old child that has a

totally different syndrome - Joubert Syndrome (JS). He had to have

an abdominal ultrasound to rule out some things with that syndrome,

and it turned out that we may be looking at a dual diagnosis of some

sort. The GI mentioned Cystic Fibrosis as a possibility. I'm a

member of a yahoo group for Joubert Sydrome - my 5 year old also has

JS, and I know that these groups of parents are the best resource

out there. So, I am turning to this group to ask some

questions...maybe you can shed some light on what we are seeing.

Basically, the head of his pancreas is small for age, and his spleen

was large for age. (He also had RSV, so this may account for the

spleen) He is a breast fed baby...yet his bowel movements are quite

stinky (the only time in his life they shouldn't be!) and they

aren't yellow and mustardy, they are a little mucousy and a little

dark. He has gas a lot, which is also quite stinky...again, not

really normal for a breast fed baby. He also seems to nurse a

little more frequently than he should at this point...every 2 1/2 -

3 hours instead of every 4 hours.

That's it...that's what prompted this doctor to say that CF is a

possibility. We are going to have the ultrasound redone to see if

the pancreas is still small, and if it is she said a sweat test and

a few other tests. He is off the charts...weighing 22 pounds at

only 5 months. Nothing strange came back in the bloodwork we've had

done so far. He doesn't seem to be in any pain (anymore...he used

to have bad pain with his gas, but then again MANY babies do!).

I guess my question is this...did any of you find out your child had

CF this way? Does this sound like CF to you? Do you think it might

be something different, or nothing really? My experience has been

that parents know more than doctors!

I appreciate your help! Thank you for reading, and sorry so long!

Tulumalo

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