Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   hemangiomas propranolol - Infant - HELP (http://birthmark.org/board/showthread.php?t=5791)

Brownio3 06-10-2012 05:52 AM

hemangiomas propranolol - Infant - HELP
 
Hi everyone! We gave birth to a beautiful healthy son about three weeks ago. Upon birth, we noticed a mark covering from the area between his nose and eye in a half circle down to below the nose up to the other corner of his eye. It was very faint but looked like a bruise. He went through the birth canal in about 12 minutes so we thought it was a bruise. It got darker within the next few days and did not look like a bruise. 3.5 weeks in, it is a dark red/purple color. The surface was flat. Upon our first office visit with our pedestrian, she thought it was a port wine stain. She referred to us to Dayton Children's hospital to see a pediatric dermatologist. Dayton Children's is the closest children's hospital. Upon doing my research, I found birthmarks.com and talked to a nice lady that told me the story of the work of Columbus Children's Hospital with her daughter's port wine stain. I was able to get us a referal from our pedestrian, and had our first appointment with Dr. Fernandez on this past Thursday. Within 5 minutes of our visit, he indicated that it was not a port wine stain but rather a hemangioma. His treatment plan is to admit Joey (our son) to Columbus Children's hospital for a battery of tests to see if proranolol would be safe for him. By the way, he was a normal term baby, a healthy weight, developing normal, etc. We still kept our appointment at Dayton Children's Hospital this upcoming week for a 2nd opinion, but we were pretty sure, we would go along with Dr. Fernandez's treatment option. At a family gathering today, we had a couple of conversations with nurses in our family that did their own internet research and based on their research, they would not give it to their kids because of the potential side effects. We did our own internet research when we got home from Children's Hospital in Columbus, and didn't see anything that would prevent us from going down the path that Dr. Fernandez recommended. So now, I am up doing our research again on the impact of propranolol has on infants. We are interest in hearing a 2nd opinion on Tuesday, but we wanted to reach out to this forum and ask if anyone has negative experience with propranolol with their infants. Based on my 2nd round of internet research, it seems that the drug has a dramatic impact on the hemangioma with little side effects, but something we need to closely monitor with the help of Children's in Columbus and our local pediatrician as Dr. Fernandez suggested. There is never a magic drug for anything as everything has side effects, but please give us your experience with it. If the doctor at Dayton Children's hospital gives us a different answer than Children's in Columbus, then we will have a significant decision to make. I posted a couple of pictures of Joey :). Thanks again.

Edit - I should also note, it is still mostly flat, however, we and the doctors at Children's in Columbus it has started to raise slightly.

Brownio3 06-10-2012 05:57 AM

Joey at birth

Brownio3 06-10-2012 05:58 AM

Joey at 1 week

Brownio3 06-10-2012 05:59 AM

Joey at 2 weeks

missashleynicole 06-10-2012 12:16 PM

My daughter is almost 10 weeks old now. She has a hemangioma on the inner corner of her right eye. We thought the same thing when she was first born except her pediatrician said it was a birthmark from day 1 (although I didn;t believe her b/c it didn't look like one I had ever seen). It became red around 3 weeks and has slowly grown (started out the size of her finger nail and is now 2 inches by 1 inch). It became raised within the past month. This past week we were seen at her 2 month appointment and when the dr came in she said "well that's def grown" and wanted to send her to specialists ASAP. We said dermatologist and opthamologist(to check vision which is not effected yet) and a cardiologist to get her cleared to start propranolol. We go in next Saturday to start the med. We should see results in a week. I will post to tell how it goes. Everything (results/side effects)I have found about this treatment has been positive...nothing bad and the doctors we saw over the past week said that ALL of their patients have done well, not some, ALL of them.

Brownio3 06-10-2012 03:27 PM

Thanks for the response. We are still waiting to hear back on our scheduling, but please let us know how it goes!

smurph 06-10-2012 09:26 PM

I also wanted to reassure you that I have heard a lot of good things about propanolol and hardly anything negative. My daughter was on oral steroids for almost a year for her hemangioma and it is my understanding that the steroids have more side effects than the propanolol does (this was 7 years ago when propanolol was not offered)...my understanding is that it is better than the steroids...that being said it is "newer" in the treatment of hemangiomas so time will tell, but I think that this drug has been around for quite a while for other uses and doesn't have a lot of side effects.

Judging from the size and growth of your son's hemangioma I would definitely go with the advice of the doctors and start treating as soon as you can. It sounds like they are on the right path. Keep us posted on how it works! I'm sure others will chime in that have used propanolol..I'm sure they will have some experiences to share.

Shannon

smurph 06-11-2012 03:00 AM

I also forgot to mention before. I would definitely use the resources here on this site since it is so close to his eye, etc. Go to ask the experts and I would email those pictures to Dr. Levitin and Dr. Fay (an eye specialist). They are experts and I would see what they have to say as well. If if were me, that's what I'd do. Good luck and let us know how it goes!
Shannon

Brownio3 06-13-2012 03:05 AM

We had our 2nd opinion today at Dayton Children's, which confirmed the Hemangioma and they referred us to Cincinnati Children's hospital. We already started working with Columbus Children's hospital so now we are deciding what and how would be best. Both treatment plans are the same. Tough decision.

evanskl4 06-20-2012 07:33 PM

Hi, I started my daughter on propanolol when she was 5 weeks old. She's now 6 months and as far as I can tell has had no side effects from the medicine. However, it also didn't make a significant change in her hemangioma.
She's now had 3 laser treatments (along with continuing the propanolol) and will have surgery in the fall.
I'd recommend emailing photos to one of the specialists via this website (Dr. Levitin is great and very responsive) and seeing what they recommend.
Good luck!



All times are GMT. The time now is 11:36 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.