FVC Should I worry???

We saw the Pulmo for a PFT today and my PALS FVC was 42. Two months ago it was 63. Should I be crazy worried????

He uses anTrilogy at night.

Have him use it during the day if possible. I wouldnt be crazy worried but I would monitor him closely.

Last March, my wife's FVC was at 15%. Darcey's neuro said, "no more than 6 months left". Two more weeks and we'll be at March again. ALS does not care about one's last measurement. Just saying...

Jim

I agree Jim. The numbers simply track progression and there is no saying when progression will stop or start

Thanks everyone. I'll settle down then. He refuses to ever have a trach.

Michelle, For a while Steve kicked around the idea. Our 13 yr old had a talk with him about quality of life. The decision has changed again. No trache..at least for today.

No, Michelle, do not sweat the numbers that are subject to all kind of skew and don't mean much even when they are "right." Go by his feelings, not the numbers. He will exhibit signs/pipe up when he needs BiPAP during the day as long as he knows you are good with that.