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View Full Version : 5 week old with forehead hemangiona-please help!


kate
01-10-2011, 11:25 PM
Please see photo. not sure what to do about this. Appeared at birth as a much smaller pink mark and has grown considerably and she is only 5 weeks old! Looks like there's a bit of grey in the middle but I think this appeared when she scratched it(it didn't bleed) about 2-3 wks ago. I live in NZ. Is this likely to grow a lot bigger? Anyone with similar? We are very worried.
Thanks!

kate
01-10-2011, 11:36 PM
Sorry, here is the photo!

KatieG
01-11-2011, 12:27 AM
I would say if its that big at 5 weeks it could get a lot larger. Has she been seen by anyone?

kate
01-11-2011, 12:48 AM
No, not yet. Midwife just said it will go in 6-12 mths but that's a bit hard to believe!Having first Paed check today as they have been on holiday apparantly and big shortage here....

nickbar
01-11-2011, 01:25 AM
I would recommend keeping a photo journal of the changes and see a specialist. Check out the website for anyone in your area. Graying in the center can be a sign of a couple things. I) it could be sign of involution 2) watch for it getting darker/black... rapid growth can cause hemangiomas to ulcerate. Please feel free to email me directly as well.

phoenixihc
01-13-2011, 04:50 PM
Hi Kate, My daughter has a very similar one (i'll and post a mic.. not sure how). Her's grew until she was about 8-9 months old then stopped. She started on a medication called propanolol since she also had a deep hamgioma under her eye. But the results have also been seen on her forehead hemangioma.

Missy.. where do I send pics to post?

missy
01-13-2011, 10:35 PM
You can send photos as attachments to contact@birthmark.org and I'll resize them and post them.

Missy

mperron
01-14-2011, 05:27 AM
Hi Katie,

I find that their is a lot of misinformation about hemangiomas, even from medical professionals (i.e. midwife) whom we put a lot of trust and faith into their opinions. Sadly though, I've come to realize that we need to do our own research and educate ourselves to make informed decisions.

I also think it would be beneficial for you to speak with a specialist. Many are great, and will give you an opinion via email. For example, you can send Dr. Waner a email by going to his clinics website (NYC Vascular Anomolies). Sorry don't have the email address handy.

Wishing you and your little one the best of luck!

kate
01-14-2011, 06:02 AM
Thank you for your replies! It seems to be greying in places but still very red and spreading on the outside and there is a bump forming underneath...Pediatrician said he would prescribe propanolol but never done so before and wasn't able to admit her to hospital at the beginning to monitor and sounded like any monitoring was up to me, all he would do was prescribe it. Went to Dermatologist today but she didn't know much either.Getting frustrated....There doesn't seem to be any specialist here in the city I live in or even the South Island. I have emailed Dr. Waner but no reply and have also emailed a Dr. here in NZ that seems to be the only specialist in the country but no reply. Does anyone have a good specialist in Australia as I am willing to travel if needed.....???

missy
01-14-2011, 12:53 PM
Here ya go!

phoenixihc
01-14-2011, 03:29 PM
Thanks Missy.

Kate.. the first pic is at a few weeks old and you see that her mark on her forehead is very small and pink. Then the second pic in is june at 9 months old where you can also notice a lump under her right eye where she had a deep hemangioma. And finally the last one dates on december at 15 months old.

kate
01-17-2011, 04:58 AM
Thanks for that phoenixihc, my daughter's seems to be the same size at 6 weeks though as your daughter's at 9 months! Did it grow much after 6 weeks?
The pediatrician has said he will prescribe propranolol but any monitoring it seems will be up to me. All he will do is the prescription. Is this unusual?

phoenixihc
01-17-2011, 07:32 PM
Kate.. My daughter's H grew up until she was about 6-8 months old. But I know this time frame can vary per child. As for the monitering it was up to us as well. A pediatric Dermatologist is the one who prescribed it and then it was for us to monitor. Although we did see the Derm on a weekly basis until our daughter was up to her full dose. We had to take her tempature and heart rate (not obvious to do ugghh..) after every dose until we got to her full doses to make sure her heart rate wasnt affected. But it turned out to be easier than I thought it would be once I got used to it. Now that she's on full dose we see the Derm every 6 weeks.

BTW, if you do get the propanolol, ask the pharmacist to add flavoring to the mix. My daughter loves it.. makes it so much easier! :)

kate
01-18-2011, 04:05 AM
Well, good news! Have been referred to Prof. Swee Tan in Wellington so hopefully we will be able to start the propranolol! I hope he thinks it's serious enough.Has anyone else dealt with him??? He looks an amazing man in any case.
Thanks for the tip Phoenix!

missy
01-18-2011, 11:23 AM
I have always heard great feedback about Swee Tan. You should be in good hands!

Missy

phoenixihc
01-18-2011, 12:29 PM
Good news Kate. Keep us posted on your daughters progress :)

nickbar
01-19-2011, 12:49 AM
thank you for the update. Look forward to good news.

Jen2586
01-20-2011, 12:25 PM
Hi Kate
My little girl is 7 weeks old and has a hamangioma on her left eyelid. She was started on propranolol 1week ago and we have already noticed a huge difference. This was prescribed by her pediatrician and we are currently waiting for an appointment at the Royal Brisbane Hospital as they gave a clinic there specializing in hamangiomas. Behaps you could try getting in contact with them if you are still having issues finding a specialist in NZ. Good luck.
Jen

kate
01-22-2011, 03:01 AM
Thanks everyone for your support. Looks like she will definitely be starting the propranolol from Feb 1st with Swee Tan. He said they're also doing a trial with captopril.Anyone tried or heard of this? We are so relieved!!!

smurph
01-22-2011, 02:46 PM
Did you try emailing Dr. Levitin? He has been great in getting back to me. Good luck! I hope you are able to find a doctor who can help you.

Shannon

nickbar
02-03-2011, 01:49 AM
please let me know if you need any help. Dr. L is very good at answering emails, but he gets a lot of them... so keep trying him or let me know and I'll make sure your email hits "the top of the inbox" ;)

kate
02-08-2011, 06:46 PM
Sophie has started propranolol and tolerating it well no probs. In the first few days as expected we saw a huge difference, the mark had flattened and faded. She is only on 1mg per kilo but I think it will be increased to 1.5 next week. I will keep you updated on the results!

catherine
02-24-2011, 07:50 AM
Hi Kate
Our 4 month old baby girl is also going to be starting treatment with Prof Tan for an ulcerating haemangioma on her chin. We are going on the captopril trial, but don't think there are too many others on it. Hope all goes well with the propanolol - my neice has had it and her birthmark on her nose has improved hugely. Professor Tan is amazing and it sounds as though we are in great hands. Bit of a worry that your paediatrician was going to prescribe you propanolol though without monitoring in hospital, as this is a medication used to slow the heart rate and decrease blood pressure.

tessaemay1981
03-07-2011, 07:45 PM
Your daughter looks fantastic! When did you start her on the propranolol? We just started our son on propranolol at 3 months. I'm hoping to see results like your baby's.

momof3inpa2009
03-09-2011, 12:57 PM
Hey phoenixihc - your daughter's deep hemangioma under her eye is there just some extra skin there now? My daughter has one above her eye on eyebrow and today is actually day 3 of no propanolol. We have weaned her off slowly. She is 18 months btw. Anyway my daughter's hemangioma looks great but I see some extra skin there. Sometimes I think her hemangioma is "back" and other times I think it's just extra skin.

Kate: There's things that can be done so that it does not get larger. Do your own research on it and get different opinions. It's frustrating at first but so worth it!!!! Good luck!

phoenixihc
03-18-2011, 11:55 AM
momof3inpa - Yes same with our daughter. Not very much extra and on most days I don't notivce it but sometimes, like you, I think it's coming back but then the next day I don't :) We're weening her off as well and she also now 18 months. I suppose as they grow the skin will stretch and the extra skin would flatten out. :)

momof3inpa2009
03-22-2011, 06:21 PM
Well I was just coming in to update again...we are not having any luck with weaning....Lexi is back on one dose again. Her hemangioma is getting bigger again. Phoenixihc...I would love to talk with you more....It looks like we are in the same boat with our girls ages and being on propanolol.

phoenixihc
03-22-2011, 08:54 PM
Momof3in pa... I would love that. Where can I email you? :)

momof3inpa2009
03-22-2011, 11:07 PM
I will try to PM you my email

slcraig1
05-02-2011, 05:58 PM
Hi,
My daughter also had a forehead hemangioma that started off as a pale red mark. it grew very rapidly to a big, bright red, puffy hemangioma with a bump "underneath" also. I ended up opting for surgical removal at age 18 months; but if I had to do it all over again, I would have taken her to specialist ASAP after birth and tried some of the drugs out there that are able to shrink the hemangioma and/or stop the growth process -- in the hopes that I might have been able to avoid surgery.

In case it's helpful to you, here's a link to pictures that document the growth and healing of my daughter's hemangioma.

Our pediatrician AND dermatologist recommended a "wait-and-see" approach; but like I said, I wish now that I had tried the drugs while the hemangioma was still very small.

it's also important to note that everyone's situation is different though! Bottom line is that it's tough to make the decision. I know I would have also been scared to put drugs into my daughter's body. No decision is stress-free, unfortunately.

Hope this helps,
Sally

here's the link:
http://www.flickr.com/photos/62468545@N08/sets/72157626631303066/

kate
07-17-2011, 11:05 AM
Hi everyone, Sophie has been on propranolol (1.5mg/kg) for about 5 months now. She is just over 7 months old. Her H has flattened a couple of times over the last few months but also puffed up again. Now it has just flattened again but has some scabbing....not black but burgundy red. It doesn't really look worrying but I have been reading about ulceration and getting worried especially because we are going to Fiji in a couple of weeks for a week's holiday. Do you think this is ulceration beginning?? I will post a pic.
Kate

kate
07-18-2011, 06:57 AM
Here's a better photo.

slcraig1
08-01-2011, 08:31 PM
Thank you for your replies! It seems to be greying in places but still very red and spreading on the outside and there is a bump forming underneath...Pediatrician said he would prescribe propanolol but never done so before and wasn't able to admit her to hospital at the beginning to monitor and sounded like any monitoring was up to me, all he would do was prescribe it. Went to Dermatologist today but she didn't know much either.Getting frustrated....There doesn't seem to be any specialist here in the city I live in or even the South Island. I have emailed Dr. Waner but no reply and have also emailed a Dr. here in NZ that seems to be the only specialist in the country but no reply. Does anyone have a good specialist in Australia as I am willing to travel if needed.....???

Hi Kate,
My daugher also had a forehead hemangioma that looked much like your daughter's. Please see my VBF post here:

http://174.120.2.174/board/showthread.php?t=5316

This post documents my thoughts after having my duaghter's H surgically removed at 18 months old. It also contains a link to several photos that document the growth of the hemangioma from birth to 18 months. Personally, with highsight, I wish I had put her on proplanalol in the very early stages. I feel I could have avoided surgical intervention if I had done that. But obviously that is a very tough call to make for any parent. I wish you the best of luck. Your baby is beautiful.

mjwrw
08-25-2011, 02:13 AM
Hi Kate,
I'm not sure if you are still checking these posts, but my daughter also had a similar hemangioma right in the middle of her forehead. It grew very large and we ended up having it surgically removed by Dr. R einisch in Los Angeles at 13 months. We have absolutely no regrets about our decision.

Our daughter's hemangioma started out as a pink patch at birth and grew rapidly as well. We did the wait and see for a while and at about 9 months we started getting other opinions. I spoke and emailed with doctors all over the country--we lived in Idaho at the time--and received wonderful feedback. We ended up choosing Dr. Reinisch and have been very pleased with the results. She does have a scar but it is not very noticeable and is covered mostly by her bangs. It is rare that we even get questions ut of curiosity which is in sharp contract to the awful things people used to say when she was a baby with the hemangioma.

Anyway, if I can help in any way please let me know. Good luck with your beautiful baby:)
Rory