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-   -   What age did you wean from Propranolol? (http://birthmark.org/board/showthread.php?t=5311)

tlampley3 04-28-2011 02:09 AM

What age did you wean from Propranolol?
 
My daughter has some pretty extensive hemangiomas and has been on Propranolol since she was 3 weeks old. She turned 1 on April 13th and we attempted weaning, but saw slight rebound, so we are back up to her full dose. I'm just curious what age others were able to wean? Dr. said we will try again in a few months.

missy 04-28-2011 11:45 AM

Just popping in to say HI! You know I don't know the answer to your question ... LOL ... but I'm curious as well. Others will be around soon. It seems to me that *most* weaned from it after nine months to a year, but that's just the ones that my foggy brain can remember offhand.

Hope you're well! How is Livy these days?

Missy

siobhan 04-29-2011 12:42 AM

Hi Tiffany,

My daughter is 8 months and has been on propranolol since she was 8 weeks old. We tried to wean last month but I thought I saw rebound growth. We went back to dr today and it was confirmed we are staying on meds for now. Dr said she is still in the growth stage and the goal is for H to be completely gone by age 2.

Siobhan

Texas75 05-09-2011 07:33 AM

My daughter has an orbital hemangioma and has been on propanolol since 8 weeks. We do not have the ability to see exactly what is taking place with her hemangioma due to its location but we did attempt to begin to wean her at 12 months. We felt that we saw some puffiness appear around her eye during that process and have decided to remain on the treatment. She is 15 months this week. We will probably readdress the weaning process soon. We have been told that hemangiomas in and around the eye tend to be a bit more aggressive so the lifespan may be a bit longer in those cases. Ours is a very rare case, have yet to find a fellow case, so we find ourselves in uncharted territory quite a bit.

Anniina 05-23-2011 12:00 PM

Our daughter has a nasal tip hemangioma and due to their rather persistent nature our doctor has said we probably won't even attempt to wean her off it before 12 months and it's unlikely she'll be totally off it before 18 months. I've heard of a child that is now 21 months and there's been a couple of attempts to wean her off it but she's had to go back on it each time. I'm preparing for the long haul but it's alright as she's doing well on the drug and I'm just so grateful it exists in the first place.


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