How I found out. ..

[Guest guest]

When I posted my introduction, I never quite did say how my hubby and I found

out about Jake. It's a long story and here it goes. . .

Jake was always having a hard time gaining weight. His first 7 weeks of

life, I breastfed him. He didn't even regain his birth weight back. I first

thought something was wrong with my milk (I definitely had plenty), so we

switched to formula. Then he started gaining weight. He was doing

wonderful. His weight gain was about 4-5oz a week. He was eating like a

champ (and he was a tough, slow, tedious little guy). Sometimes, it would

take him an hour to eat one bottle. But I was patient. . .

About 3 weeks ago, he started breaking out in a weird rash. It started on

his face, then eventually spread to his extremities. He stopped wanting to

eat. He would only take in about 8-13 ounces a day. When he didn't pee for

6 hours, I got absolutely crazy. I called the gastroentrologist that I took

him to the week before-and BAM! We were admitted into the hospital for the

first time. My hubby is a chiropractor, didn't want unnecessary tests

done-so when Jake was eating around 17 ounces-we were allowed to go home.

MISTAKE!

Jake at home was doing okay for about 2 days. Then, he started his stuff all

over again. He decided not to eat. I admitted him in again. This time I

told my hubby that something was wrong with him and I wasn't going to leave

the hospital till they found out. So there I was, for about 2 weeks. They

didn't know what his rash was (and boy was it rude), he had a cold (even lost

his voice). So, my doc consulted in a Disease Specialist; thinking he had a

really bad viral infection. So much blood was taken (whatever little they

could get), tests were ran, and my little guy kept getting perfect numbers

and all NEGATIVES. My hubby kept saying to test for CF, but my doc was

convinced otherwise. Not according to his bloodwork, or his fat in his

stools he said. He even took an organic salts for a metabolic screening.

Everything fine!

Then, I think out of desperation, he took the sweat test. He needed no blood

(which was impossible to get) and he decided to do it. It was April 24th. I

was a nervous wreck. I would read what it said about Cystic Fibrosis in the

Merck manual. It didn't really describe him. But it did. Slow weight gain

(failure to thrive), had a little cough, diarrhea (didn't start until his

second time in the hospital-and his #2's weren't too smelly not bad)-but who

am I to compare [first child). I was hoping it would be negative like the

rest of the tests. But I was wrong! After 2 positive sweat tests, Jake was

diagnosed with Cystic Fibrosis.

They did a cheek test b/c they can't get blood from him. That DNA test isn't

back yet. Can 2 positive sweat tests be wrong? He tastes sweaty. I don't

know. It's been a hard week. Thanks for those of you who already wrote me

back. It's nice to know I'm not alone.

Anxious and waiting on the cheek tests,

Cheryl