Propranolol for Hemangioma

[missy]

Pics for Carii!

The first one did not come through correctly, but since there is a five pic limit, I would have had to leave one out anyway. That's why they are not all there.

Thanks,

Missy

[jacobs_mom]

Originally Posted by RsMom

She takes 1 ml 3 times a day. She weighs about 14-15 pounds. The dose is periodically adjusted according to her weight. It has been about a month since our last derm visit so it may go up a bit when we go back next week. I feel grateful that propranolol is an option for our babies now!

Thanks for the info! From looking at the boards, it seemed like a lot of babies take more than my son. He weighs over 15 lbs now and his dosage was adjusted accordingly. But our doctor is pretty conservative, so maybe that's why she doesn't want to give him more. In any case, I agree with you-- I am also very grateful that Propranolol is available for our kids.

[jacobs_mom]

Originally Posted by carii

Thanks Kelly and JacobsMom! Our appt with Dr. Frieden is Monday Oct 4 so I will let you all know how it goes. I'm sending some pics to that email address as we speak.

It's so nice to have this forum, people just do not seem to understand these birthmarks. I keep hearing about how common they are, but people really do stare, point and ask what it is. It's so strange to me--I just don't think I ever would have done that!

I have no problem with sincere questions and I'm always happy to give information to strangers who seem genuinely sincere and curious. But I HATE when some people just keep on staring and make rude comments! Sometimes I'm mature and just ignore it. But other times, I just can't take it and end up saying something very offensive, like, "It could be worse. He could have been born rude and ignorant like you." I said that to a lady last week. I know it's immature of me to react that way, but on the other hand, I really do believe that it's worse to be rude and ignorant than to have a physical difference.

[serran]

Hi there! I am new here. I found this forum while searching for information about propranolol.

We just started treatment today, and I am so glad to see great results on other beautiful babies. I am very hopeful now.

And yes, I hate the staring and rude comments as well. The most common question I get is, "Is that a burn." My husband was tired of the same question all the time and finally told one lady, "Yup we use her to put out our cigars!" I like your response much better LOL

[RsMom]

I generally don't mind people asking - I find that usually, they really want to know. However, I did have a mom and two girls come up to my daugter and the little girl said, "eew whats wrong with her face?" and the other little girl said "gross!" That was hard to hear. That helped to reaffirm my decision to do propranolol. Even though I think my daughter is perfect with or without her birthmark, if we can help it, I don't want her to deal with responses like that as she becomes old enough to understand them!

[carii]

Yeah, the questions and comments can be hard, and I worry about kids making fun of him when he's older. But for all the difficult people, there are some great ones. A few weeks ago we were at Peet's Coffee. A little boy came over to our table, looked at Julian's forehead and said "Ouch! Daddy, can we give him my last Elmo bandaid?" I sincerely hope I can raise Julian to be such a sweet and generous kid, and I told his parents so.

I do agree that most people re just genuinely curious, and that is OK with me. At this point I have a standard line about his temporary birthmark (I call it his bindi, my little Indian god) and I find myself giving the speech whether somebody asks or not. I guess somehow I feel the need to explain. I love my son just the way he is, so why do I do this?

Please take a peek at my photos, thank you Missy for posting above!! For some reason the first one does not appear as dark as it really is in person. He also has one on his butt, but that one is trickier to photograph!

[carii]

Forgot to say:
Annina, Jacob'sMom and RsMom--your photos are so great, thank you for posting them. The results of the propranalol are pretty amazing, and your babies are so beautiful, with and without the hemangiomas.

[missy]

Originally Posted by carii

Please take a peek at my photos, thank you Missy for posting above!! For some reason the first one does not appear as dark as it really is in person. He also has one on his butt, but that one is trickier to photograph!

Well, until you're old enough to sit yourself on the copy machine at work, photo-ing your butt is tricky!



Missy

[carii]

Originally Posted by missy

Well, until you're old enough to sit yourself on the copy machine at work, photo-ing your butt is tricky!



Missy

OK, you are too funny. I just keep picturing my little guy laughing and photocopying his butt like one of those babies in the e-trade commercials...

[ctaylor]

Hi everyone. I'm glad I've found this site. My daughter who has just turned one has had an hemangioma on her forehead very similar to that on carii's photo HOwever she also has one under her eye that is not visible on the skin surface but rather, this one is under the skin (looks like she has a black eye). An MRI confirmed this and since it's affecting her vision slightly, the Dermatologist is recommending she start on Propranolol to help reduce it's size and prevent any further damage to her vision.

My question is that most pharmacies compound the propranolol from tablet form. However the Doctor suggests that we go to a specific pharmacy here in Ottawa where the compound it using a liquid form instead of ground-up tablets. Has anyone heard of this difference? I'm wondering if it's worth me going out of my way to get this prefered type or whether I should just go to my local pharmacy...

Caroline