Propranolol for Hemangioma

[missy]

Originally Posted by carii

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...

LOL YES!!! I love the "Shankapotomus" baby!

[annina]

Originally Posted by momof3inpa2009

does your daughter have a hemangioma above her eye on eyebrow too? thats where my daughter's is. i've never seen anyone else with one like hers' and where it is at. your little girl is goregous by the way. looks great!

Yes, I saw in your blog some pics... They have the same deep H above the eye!
Does it affect your daughter's eye?

[carii]

Hi everyone,
I wanted to share the outcome of our visit with the specialist (Dr. Frieden at UCSF). She feels that while Julian's hemangiomas are small, the one on his forehead will leave a scar when it involutes and will need minor reconstructive surgery. We have the option to do that between 6-16 months, or after he is 3 years old.

We are also trying Timolol, which is essentially a topical version of the propranolol. I put it on his hemangioma 2x/day. So far, I just see a lot of skin flaking, but will let you know how it goes.

The most frustrating part of the visit was that she felt if we'd seen her earlier, she could have controlled some of the growth and he may not have needed surgery. But I made the appointment with her when he was 3 weeks old and it took this long to get in. My pediatrician would not give me a referral, so I couldn't get bumped up the priority list.

While I know Julian's H is minor compared to many others, it's still frustrating that now my little baby will need surgery that could have been avoided. I guess I've learned my lesson, and will need to become more of an advocate for my little guy

[missy]

I guess I've learned my lesson, and will need to become more of an advocate for my little guy

This is the second time in less than 12 hours that I've heard that!!

No no no. You get up every day and do the best you can with the information you have. You have done nothing wrong ... nothing.

How is Julian feeling other than the flaky skin? When will you be able to follow up?

Missy

[lrlt2000]

My daughter is 10 weeks old and started Propranolol on September 13th, at just 6 weeks old. She has a H on the FRONT of her nose and it is just an awful place to have one: can you say "Rudolph"? It's the first thing on most people/children's minds, and one even said it.

Anyway, here are my pics: they are titled with the number of days from birth or number of days post-treatment.

Pre-treatment/Growth:

Day 1:


Day 9:


Day 21:


Day 48:


I'm so glad I have an outlet of people who understand!

ETA: Our dosage is 2mg/kg/day. When she was in the hospital for monitoring for the first 24 hours, they started her on 1/4 doses, then upped to 1/2 doses. She stayed on half doses for three days, and then went up to the full dose. The pediatric cardiologist re-checked her after that first full dose, and she's been on the 2/k/d since (she takes it every 8 hours, so 3x a day).

[lrlt2000]

Originally Posted by carii

Hi everyone,
The most frustrating part of the visit was that she felt if we'd seen her earlier, she could have controlled some of the growth and he may not have needed surgery. But I made the appointment with her when he was 3 weeks old and it took this long to get in. My pediatrician would not give me a referral, so I couldn't get bumped up the priority list.

While I know Julian's H is minor compared to many others, it's still frustrating that now my little baby will need surgery that could have been avoided. I guess I've learned my lesson, and will need to become more of an advocate for my little guy

Don't blame yourself, no one knew what the mark would do and you are getting treatment *now*! As for surgery, I don't think that is a definite--even our specialists say there is no way to tell from mark to mark, how they will involute and what, if any, trace will remain. Hopefully, he won't need any, but if he does, at least you know it will be minor! Also, he's so young, as he grows, any scar that might remain will fade more than if he was older!

[lrlt2000]

And I know what you all mean by being "an advocate for your children"--I've learned my lesson at other times in my life, with my other two children. So, this time, I was adamant! I did not take no for an answer, did my own research, and had her officially diagnosed by 5.5 weeks (although by photograph, diagnosed at 4 weeks) and under treatment by 6 weeks. I would have *never* been as active had I not experienced this advocacy phenomenon with my older daughters over the years! I also credit this website with much of my education during that first month or so!!!

[RsMom]

Cari - He may not need any surgery at all. His H looks similar in size to my daughter's when we started propranolol. Hers is on the side of her nose and the dermatologist expected it to affect the shape of her nostril. After 3 months, her nose looks perfectly normal and the H is nearly gone. He is such a cutie! Even if it does leave a slight mark when all is said and done, it may not require surgery. Babies skin is so resilient!

Don't beat yourself up over the time it took to start treatment. He will be just fine! Even after seeing a specialist, we still waited a couple of months before starting propranolol. We started with timolol and a topical steroid. For me, this whole process was such an eye opener because it sunk in that my husband and I are responsible for making big decisions for this little person! I know how you feel about the advocacy piece! Parenting is a learning process and we all do the best we can for our babies! Your little boy is lucky to have a Mom who cares so much about him

[lrlt2000]

Sorry, I had to separate the photos because it only allows 4 images per post! Here are the post-treatment ones:

Day 16 of treatment:


Comparison by doctor of pre-treatment and Day 16 of treatment:

[jacobs_mom]

Originally Posted by carii

Hi everyone,
I wanted to share the outcome of our visit with the specialist (Dr. Frieden at UCSF). She feels that while Julian's hemangiomas are small, the one on his forehead will leave a scar when it involutes and will need minor reconstructive surgery. We have the option to do that between 6-16 months, or after he is 3 years old.

We are also trying Timolol, which is essentially a topical version of the propranolol. I put it on his hemangioma 2x/day. So far, I just see a lot of skin flaking, but will let you know how it goes.

The most frustrating part of the visit was that she felt if we'd seen her earlier, she could have controlled some of the growth and he may not have needed surgery. But I made the appointment with her when he was 3 weeks old and it took this long to get in. My pediatrician would not give me a referral, so I couldn't get bumped up the priority list.

While I know Julian's H is minor compared to many others, it's still frustrating that now my little baby will need surgery that could have been avoided. I guess I've learned my lesson, and will need to become more of an advocate for my little guy

I felt the same way. I got a referral from my son's pediatrician at his 2 week well visit and although I made the appointment that very same day, Dr. Freiden still couldn't see us until he was 2 months old. At the time, the pediatrician thought it was a port wine stain and wrote a referral for that. By the time he was 1 month old, I knew it wasn't a port wine stain. After researching online, I felt it might be a hemangioma but I wasn't sure because I'm not a doctor. Anyway, we went when my son was 2 months old and the hemangioma on his nose had grown by them. His hemangioma goes slightly inside his nose so there was some damage to the inside of his nose by then as well. I was so upset with myself for not going down to Dr. F's office before the appointment with pictures to see if she thought it was a priority. But I try not to beat myself up about it. I was sleep deprived, I had no idea what was going on with my son's nose, and I was doing the best I could.

If you see any growth or anything that concerns you, don't be afraid to call the doctor on call. The first week of my son's treatment, I called them almost every day! They are very good about returning calls and they always have spots for emergency appointments if they want to see you before your next appointment.

Oh, and I took a look at your pictures and your son is beautiful!