Starting propranolol tomorrow!

mamatomaysie · #1 02-18-2009, 04:10 PM

Maysie should be starting propranolol tomorrow at Emory. I'm nervous but excited and I hope we're doing the right thing for her.

We saw Dr. Hochman Monday in Charleston, and he was great. He recommended that we wait and reassess the hemangioma in 4-6 months, unless it was causing problems. He said we could use laser if needed to treat any more ulcers (her ulcer has recently healed). He said surgery wouldn't work too well since her H is horizontal covering most of her bottom lip. The laser could cause permanent lip discoloration/fading.

Tuesday we saw Dr. Lawley at Emory, and she talked about the options of topical, injected, and oral steroids, or propranolol. I wasn't too keen on using the steroids, so we're going to try the propranolol. Maysie's H is still growing and Dr. Lawley felt like we would get good results with this treatment. She'll be inpatient for three days of monitoring, then we should go home. I'll post an update in a few days. Wish us luck!

missy · #2 02-19-2009, 12:01 AM

Heyyyyyyyyy!!

Best of luck, but it sounds like you've made a good decision. Let us know how she does and we'll keep her in our thoughts.

Take care,

Missy

Dawn and Baby Presley · #3 02-19-2009, 12:37 PM

Praying for her to have a great success! we have had wonderful results with Propraolol! Best of luck and im happy that they are doing an inpatient for you! it takes away some of the stress!!
Best of luck!
Dawn

mamatomaysie · #4 02-23-2009, 01:46 AM

Well, we're back home. The hospital stay was not bad and we could see changes in her hemangioma within 24 hours. It's flatter and darker- less red- than it was before. It does make me nervous to have my baby on a heart medication and I will be very glad when she can go off it in a couple of months. We will be followed closely by her pediatrician to make sure her vital signs and blood glucose remain normal. Overall, we are very pleased to see the hemangioma shrinking, and not to be experiencing any negative side effects.

missy · #5 02-23-2009, 11:12 AM

Please remember to keep us up to date!

Anything VBF can do to help, let us know. We will be keeping you in our thoughts and prayers!

Take care and hugs for you and your daughter.

Missy

SCollins5501 · #6 02-24-2009, 11:30 PM

I am so glad she is doing well.
I am SO glad we got propranolol treament for our daugher too. The difference is night and day.

Dawn and Baby Presley · #7 02-25-2009, 10:35 PM

im so happy you are having good results, we too seen a difference at the 24 hr mark! Best of luck, and thanks for sharing your experiance!