Anyone not successful on Propranolol?

allme2001 · #1 02-15-2011, 06:35 PM

My five month old daughter has been on propranolol for three months now, after being on steriods for about six weeks as well as timolol (sp?). She has a hemangioma on her left eyelid, an internal one in her neck, as well as a small one on her thigh. All the doctors we have seen (her dermatologist, pediatricain, eye doctor, and cardiologist) all said we should see dramatic results within the first few days. Well, the first few days came and went with no results. We have increased her dosage several times now. She is currently at 2.1 ml twice a day and she weighs 20 lbs. When we were at 1.8 ml twice a day, the dermatologist said she had never taken a child past 2 ml. We go back next week for another check up, but I'm starting to wonder if maybe the this isn't the right treatment for us. The hemangiomas are not growing, they just are not shrinking or changing in color either. I realize every child is different, but has anyone not seen any type of results with propranolol? I was told and read such good things that I think I got my hopes up too high.

phoenixihc · #2 02-15-2011, 07:56 PM

Hi,

My daughter started propanolol a little later around a year of age and was heavier than your five monht old of course.. this to say that her highest dosage went as high as 10ml/twice daily at her weight and results were great!

carley09 · #3 02-16-2011, 03:25 PM

My daughter started propranalol when she was 2months, our dr told us from day 1 our goal was to "halt" the growth of them. I was discouraged too when it didn't fade or shrink either, because I see other babies having better results in such a short time period! Our dr kept reminding us that it didn't GROW! Of course I am grateful for that! She is now 13 months and it faded slightly but we have begun laser treatment! The dr doing the laser told us that they are currently doing a case study and it seems propranalol works on certain kinds of hemangiomas better than others! I often wonder if she needed more than 2ml twice a day! You may consider laser treatment in combination with propranalol? I wish we had! Best of luck to you.

allme2001 · #4 02-23-2011, 06:30 PM

We went back to the dermatologist today and she has decided to leave the dosage at 2.1ml twice a day. She said at first, drs saw so much success with propranalol they toted it as a miracle drug. The more children that are on it, they have found it not to be quite as successful in everyone as originally thought. I wish she would've told me this before we started and maybe I wouldn't have had such high hopes. I am glad the hemangioma has not grown, but I'm still disappointed that it hasn't gotten smaller either. I don't think laser treatment is an option, as it has never been brought up. At this point, I guess we are back to "wait and see" what happens.

carley09 · #5 02-23-2011, 07:08 PM

I would encourage you to email Dr Geronemous on here with a picture! I did and he responded very quickly! He is a laser specialist, may be able to point you in the right direction! Best of luck and keep me posted!

momof3inpa2009 · #6 03-09-2011, 01:18 PM

I was discouraged at first. In the hospital we saw a change right away, it was a small change but we noticed it right away so I got HIGH hopes. But when we went home it was a few months and I didn't see any new changes and then suddenly there were dramatic changes. Her pediatrician said "Well it grew gradually and then BAM it got very large in a short time...so I guess it's shrinking kind of is acting the same way." Makes sense. I was getting very discouraged thinking "Oh great it works for everyone else but us..." Yeah I had my own pity party lol but seriously that is what I was thinking. And like I said then the changes were dramatic. I remember other people started telling me about the changes they saw and I was like "You really think so?" Because I wasn't seeing them. But I see her 24/7 so it was hard. But as I took pictures of her I compared them and I then started to see the changes. Don't lose hope. And you never know, you could be right it might not be the right treatment for your little one but don't lose hope and give it a little more time. Good luck! {{HUGS}}

carley09 · #7 03-09-2011, 01:48 PM

Others told us as well they could see it lighten, we were basically on propranalol from Feb 10 to Dec 10- like you say because us moms are around our kiddos everyday we prob don't notice changes as much! My daughter's hemi is superficial and I think maybe it helps deep hemi's more! Our dr said there is a study underway right now where they are narrowing down which hemi's the propranalol actually helps!! Apparently doesn't help all! I look back at pics all the time and I am thankful that once we started the meds it didn't grow anymore, and it did lighten a bit! We are now in the process of laser treatments - so far so good! it's all a journey and I have to remind myself these things take time! Best of luck to your little one!

momof3inpa2009 · #8 03-09-2011, 06:35 PM

Yes I agree I think it helps the deep ones more than the other ones. I have heard though that it takes the color from the strawberry ones. Good luck to you as well. Hugs!

autcamlin · #9 03-17-2011, 12:14 AM

My son has been on propranolol for about 4 mos, he is almost 20lbs and takes 1.6mL 3 times a day. At first we did see his hemangioma get lighter and not as puffy. Lately we haven't seen a change. His is on the tip of his nose and the dr says that for some reason hemangiomas on the nose take longer to go away. But like the other parent said, at least it is not getting bigger. So right now the propranolol his helping to prevent it from growing.