No CF/update on Sam

shanlubey · July 2012

The sweat test we brought Sam to today was a huge struggle for us. I had to hold him down for 10 minutes while he screamed, cried, held his breath and turned all shades of the rainbow. The technician running the test was not friendly for working in a Children's hospital.

The good news is that his test came back negative.

I know I haven't been on this board much. I kind of gave up TB for a while, but I relate to many of your struggles and feel comfortable here. Sam is now 17 months old, 14 adjusted and walking, running and sometimes mimicking us. He's not quite talking but he'll get there! He's still a crappy eater but he's doing much better than a month ago.

kck329 · July 2012

I love when you update-its always good to "see" you.

And I'm so glad that Sam doesn't have CF, that's great news. It sounds like he is doing really well overall.

shanlubey · July 2012

Thanks, ladies. We have our moments. He has a FTT diagnosis even though he "looks" healthy. He's in the 4th percentile right now, but I think his docs are too conservative. His major struggle is breathing. He just struggles on a day to day basis.

Ooh, and another update - we're March of Dimes Ambassadors for RI so we're bringing him to Disney World to celebrate. We're super excited.

jrrs · July 2012

Glad your sons's test came back negative. Do you mind my asking, did you get results immediately? We're takin our 19 month old former preemie for the sweat test tomorrow. He's had breathing issues since birth too but it was his gi doctor that siggested this as a possibility. He's in the 3% now. I kinda freaked when they mentioned cf.

shanlubey · July 2012

We got a call with the results about four hours later.

We're perplexed right now at Sam's problems. His lower lobes are full of mucus even with a baseline xray when he is "at his best". GI and pulmonary are working together and they were pretty sure that all roads lead to CF. Now we're back to the drawing board!