pulmonary vein stenosis

sandsandmore

Has anyone here dealt with PVS and had positive outcomes?

Kate621

How was it diagnosed? Through an echo? My ds had something like this. I'm sorry I'm flaking on the exact name, he had quite a few issues. But it resolved on its own and he hasn't had any long term side effects.

sandsandmore

Yes, via an echo. The weird thing is that my DS has this along with pulmonary hypertension and the cardiologist is baffled. She has no idea how or why he's doing as well as he is with his oxygen saturation. I did find online that Chldren's Hospital in Boston is doing a study with chemotherapy drugs as a treatment since the stenosis acts as a cancerous growth.

njdcgirl

I don't have any experience, but wanted to point you to another resource.  Check out the inspire.com preemie site.  There are lots of ladies on there whose LOs have dealt with every possible preemie issue and they are very supportive.

I've been reading your blog (I'm pretty sure your sons are S&S, right?) and I'm sending many positive vibes your way.  I hope there is something they can do for him.  ((HUGS))

Kristin

sandsandmore

njdcgirl:

I've been reading your blog (I'm pretty sure your sons are S&S, right?) and I'm sending many positive vibes your way.  I hope there is something they can do for him.  ((HUGS))

Kristin

 Yep, that's me. Thanks for the info about inspire.com -- I'll check there.