Prolonged period of time on Propranolol

[jilliang]

My daughter began taking Propranolol around 5 months for a compound hemangioma between her eyes. The med worked great and the hemangioma was essentially non-existent by 7 months. So, we discontinued Propranolol at 12 months. We restarted the medication at 15 months because the hemangioma slowly returned and eventually got as big as pre-treatment. My daughter will be 2 years next month. She was recently sick with an upper respiratory infection so we held the med for a few days and during that time the hemangioma developed fullness and a bluish-purple color. I feel like we're in uncharted territory with the MDs. For now our tx plan is ongoing follow-up every 2 months with increases in dosing with weight gain. Has anyone else had experience with regrowth after 12 months and prolonged use of Propranolol? I don't want her on the medication for years to come. Thanks.

[missy]

I don't know the answer to that ... it does seem like I remember someone around here with a similar question, though. Other parents will post soon. You might try asking one of the experts at http://birthmark.org/experts.php and see if one of them has had a patient with a similar experience.

Just wanted to say hi, though!!!

Missy

[Mae]

hey missy i sent you and the doctor an email seems to not be working very well

[Mae]

wow great minds and all!
can i jump in too?
my daughter started her meds at 4 months old she has been on now for going on 16 months it is getting slowly less red but it is still active and hot we go to sick kids in toronto every 2 months for increase dosages
I too am wondering how long this goes on for and has anyone had side effects with prolong use.

I will contact that link too missy thanks

[smurph]

Hi...I was just reading online that segmental hemangiomas can have a growth phase that is longer than a typical hemanigioma...is a segmental hemangioma the same thing as a compound hemangioma? Maybe that's why it's taking longer? I would also double check with one of the experts on here. I'm sure they will be able to help you and give you more peace of mind about the treatment plan. Good luck with everything! I'm sure it feels like it's been going on forever, but I bet you are on the verge of turning the corner. Once we turned that corner and my daughter's finally started to involute without medication, it's like I could barely believe my eyes. I was like, "Wow! It really does fade eventually!"

Shannon

[tlampley3]

My daughter turned 2 in April. She has been on Propanolol since 3 weeks of age. She has multiple hemangiomas. We have tried several times to wean, but no luck yet. The longest we have been off is about 2 weeks. She is on a very low dose (.25 ml/3x a day). It seems to be preventing further growth, but isn't improving any of the places that became "worse" when she was off meds. She doesn't seem to mind the medicine and hasn't exhibited any negative side effects, so for now, her derm. suggested we wait another 3 months and try again.

[blanca]

i'm no help, but wanted to ask if you could post a picture (before and after)?

i will be doing the same soon as i have no idea how to resize pics =D and have to wait till hubby gets home.

thanks!
blanca