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-   -   Hemangioma and propranolol- Help! (http://birthmark.org/board/showthread.php?t=5758)

jennr11 05-28-2012 02:58 AM

Hemangioma and propranolol- Help!
 
My 12 week old daughter was born with a large hemangioma on her left forearm/wrist/hand. It was flat at birth and started puffing up and deepening in color by 2 weeks of age. I was persistent to see a ped dermatologist from the start so our appointment was made for a month and a half later. By 9 weeks old her hemangioma was very large and beginning to ulcerate. We had her dermatology appt at 10 weeks old and they suggested we start propranolol. After a visit with a cardiologist we started the drug the same week (2mg/kg/day). We are now currently on day 11 on the propranolol and I have not seen much change in her ulcers. She had 4 ulcers at the time of our visit, one healed, but she has actually just developed a new ulcer in the crease of her wrist. She's been in extreme pain for over 3 weeks now and it's breaking my heart. Every time she moves her arm the "wrong" way or brushes it against something she screams in pain to the point of tears. When I asked about anything topical for pain at the appt, the Derm said she wouldn't need it because the propranolol heals the ulcers so quickly. He went as far to tell me they wouldn't be hurting her in a week or two.
Wondering what others experience with the drug has been? Am I hoping for too much too soon? How quickly did the med make your ulcers heal? Is there anything I should specifically call back and ask for for the pain?
Thanks in advance!

I will add that I do feel like the propranolol has already slightly decreased the puffiness of her hem and changed the color from more of a red to a purple color.

smurph 05-28-2012 03:52 AM

Hi there! I feel for you and for your daughter. Ulcerations can be so painful. It kinds of bothers me that the Derm. said she wouldn't need anything for the pain because it wouldn't hurt anymore in a week or two! That's easy for him to say! How would he feel if he had 4 open wounds for 3 weeks and his doctor told him he didn't need anything for the pain because it wouldn't hurt in a week or two??!! Sorry, that's just the Mom in me talking! :)

My 7 year old has a lip hemangioma and she had an ulceration when she was about 2 months old and she cried and cried every waking moment.( I did not even know what an ulceration was at the time. )And if she bumped her lip on something...she cried and cried some more! The whole time our pediatrician was telling us that her hemangioma was not painful and just told us to put vaseline on it. He said she was just colicky. It got so bad that I called Boston to see if they could move our first appointment up because she was having a hard time nursing. You can imagine how horrified I was when they told me that she had an extremely painful ulceration that needed immediate treatment. So I think that's why your post struck a chord with me!

The first thing they did to help with the ulceration was give us a tube of Xylocane. I had to put it on her lip often, especially before every feeding, until her lip totally healed. I don't know if it works the same way on ulcerations in other locations but it might be worth a try to ask. If the Derm. doesn't want to maybe her pediatrician would help with this...or maybe if you have a nurse practitioner in your practice...someone who can sympathize and think about the "whole child" and not just the "hemangioma." I wouldn't want it to interfere with the propanolol in any way (my daughter was on steroids, not propanolol) so you'd definitely want to check. Or maybe there is something else. Even tylenol or something? I remember the regimen for us was-Xyloncane, Antibiotic Ointment and Aquaphor. It helped a lot in the healing process, but I'm sure the steroids also played a big part because really stopped the growth pretty quickly.

Ironically, I also have a 3 year old daughter who has/had a hemangioma on her hand and wrist. It has done amazingly well going away on its own though. We did not have the same problems with ulcerations as we did with my older daughter. Do you have any pictures to share? I could share some of my daughters' hemangiomas if you are interested. Just let me know!

I would definitely call back and tell him about the pain again and see if there is anything more that can be done. Maybe some other people will chime in with other suggestions too. Good luck and keep us posted!

Hang in there. It will get better!

Shannon

blanca 05-30-2012 06:40 PM

i am so sorry that your lil' one is going through this pain. i hope she feels better soon. i am wondering... is your daughter formula fed?

jennr11 05-30-2012 07:49 PM

No, she is exclusively breast fed. Why?
As an update, I've spoken with the dermatologists NP and they told me to treat her pain with Tylenol. Because she is only 12 weeks old they don't want to give her anything topical for the pain because she could absorb it systemically. I could not be more annoyed about it, but we're dealing with it.

blanca 05-31-2012 05:18 PM

the reason i asked is because formula is filled with lots of fillers/toxins that can actually make things worse instead of helping. that is good that you are exclusively BF...she needs all the good nutrients she can get while dealing with this issue.

Mae 06-07-2012 02:11 AM

Quote:

Originally Posted by blanca (Post 25228)
the reason i asked is because formula is filled with lots of fillers/toxins that can actually make things worse instead of helping. that is good that you are exclusively BF...she needs all the good nutrients she can get while dealing with this issue.

please forgive me and good luck with your little one

but I do take offence some times you do not make enough milk, despite what all the docs want you to think and you have no other choice but to feed formula that does not make a bad mother, and as such did not effect my daughters hem. on her cheek and she is a healthy happy 21 month old


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