July 2014 Moms
littlemissmarla
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Hemangioma treated with Propranolol + some T's & P's ***UPDATED 11/11 w. picture***
littlemissmarla
member
Ugh. So DD has had a hemangioma growing on her back, left shoulder. Started out as a little red mark, grew to a strawberry and now it's about the size of a golfball -possibly bigger and completely raised. Finally had our pediatric dermatology appointment today that we had to wait 2 months to be seen. Well, now the hemangioma has black patches which is indicating that the "tumor" (what they call them, non-cancerous) is restricting blood flow to the skin and could cause it to break open/burst. The doctor is recommending actually doing treatment, which usually they just leave it alone but due to the possibility of it bursting, she wants DD to be on Propranolol which is actually a heart medication. Propranolol has been approved for use to treat hemangiomas since 2008 but DD has to be cleared by a cardiologist to ensure there are no underlying heart issues. She would have to be on the medication for a year and it's given orally. The medication apparently restricts blood flow to the site of the hemangioma causing it to shrink.
***UPDATE 11/11***
I am freaking out. She is 13 weeks and I can't believe they want to put her on heart medication for a year.
I have the appointment with the cardiologist tomorrow, hopefully he will be able to clarify any side effects and how she is monitored. The only other pediatric derms around are in NYC, so I called to get an emergency 2nd opinion and am waiting to hear back. I'm just hoping they can get us in on Friday so we can see what they say, and if needed start treatment right away.
The derm today gave us a topical ointment until we get cleared for the oral.
Any T's and P's would be appreciated and even more so, anyone with experience in this situation...
*****UPDATE*****
Thank you all so much for your thoughts!
Yesterday we took Zoey to the cardiologist, they did an EKG and Ultrasound of her heart, and everything is perfect! (He did say there is some flap that is open but all babies have this and will close eventually, they just don't do ultrasounds on all babies but to come back when she's 2 to double check).
After speaking with the cardiologist we feel way more comfortable proceeding with the treatment plan. The Dr. explained to us that they have treated over 100 babies with this medication and have stopped counting, and they have yet to see any babies experience any of the sides effects. One of the concerning side effects I read about was a lower heart rate and he explained that if she did get a lower heart rate, let's say her normal rate is 153bpm then it might drop to 151bpm, which would be in the normal range, it just might drop a little - which I was imagining a more significant drop. She will have to take the oral medication 2x a day and we have to feed her immediately after to stabilize her sugar but we would not have to wake her during the night to feed (which was another concern since she's STTN). The Dr. said there was no reason for her not to take the medication and that she would strongly benefit from it due to the size of the hemangioma.
He also told us that it will prevent the hemangioma from growing and we could see it reduce in size as early as 2 weeks. She will need to be on it most like for 9-12 months to make sure we get through the growth phase of the hemangioma. On Monday we go in for her first dose of the medication and we will be monitored for 2hrs to make sure she doesn't have a reaction and to check her BP.
I'm still a little scared but a lot more confident that we are making the right choice for her, I'm so afraid of this ulcerating and causing her extreme pain.
Before becoming a mother, I could have never imagined the worry that goes along with having a kid. These kind of situations make it even harder to function but I know that others have had to make harder decisions and have dealt with way more trying and impossibly hard times that I'm so very grateful just to have a healthy girl. Her daddy and I keep telling her will we fix this and always take care of her!
Thanks again ladies, for all the support. I'll keep you all updated as her treatment progresses.
I might include a picture of the hemangioma at the end of the posts, I know I've been looking up on the bump and baby center and other people's experiences have been so helpful, perhaps this might help someone in the same boat.
Zoey has been on the medication for a week now and has done fantastic! Last Monday we went in and had her first dose, they monitored her and had no issues! The dr did say that her hemangioma is starting to open so we have been putting prescription antibiotic ointment on 2x a day with a bandage in addition to her oral meds. We have already noticed a difference in the shape of the red part of the hemangioma!
Here is a pic that shows prior to meds, 5 day on meds and 7 days. Not much difference between the last two but I plan to continue taking pics to show progress. Thank you all again for your support and kind words!
[ Zoey 
7.28.14 ]
7.28.14 ]This discussion has been closed.
Re: Hemangioma treated with Propranolol + some T's &amp; P's ***UPDATED 11/11 w. picture***