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spaatz1329 07-19-2011 06:14 PM

starting propalonol
Just as I thought, Derm started her on the meds today. She takes her first dose tomorrow morning (1/4 of her target dose) and has to go in for a BP check. Each time they up it she has to go in for a BP check. They want her fed every 5 hours, even through the night. Yikes!

missy 07-20-2011 03:24 PM

Keep us updated and come by with any questions you might have. Apparently, you're going to be up late !!! Hope those late nights treat you right.


siobhan 07-27-2011 12:58 AM


How old is your daughter? I heard a few people say their drs told them to wake their children during the night for feedings. I asked mine about it and she said it wasn't necessary. We started at 8 weeks and finished with propranolol a little while ago and 10.5 months. Best of luck to you both!

blessedmom10 07-27-2011 02:38 AM

I try to give my ds his propranolol at 10pm and 6am (and 2pm-every 8 hours) so I am not up at 3 in the morning. I just make sure he eats within an hour of the dose (either before and after). When he has little it was never a problem b/c he was eating all the time. And since he has been older, I have even gone up to 2 hours of a feeding either side of the dose . We started at 4 weeks old and never had a problem as long as he was eating (see my recent post-I had a bad moment and gave his medicine without him eating when he is sick--UGH). Other than the one episode he has been good for almost a year. We have had very good results. So glad this drug has kept the H in his airway from growing.

ds 11months old subglottic H, H on tongue/low lip/gum and parotid gland.

spaatz1329 07-27-2011 01:30 PM

Both my Derm and my Ped want her to eat every 5 hours, even at night. But maybe that will change as she gets older. I hope so!

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