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-   -   Advice/Questions: 4mths old and 3yr old (http://birthmark.org/board/showthread.php?t=5251)

Stefany 02-13-2011 01:07 AM

Advice/Questions: 4mths old and 3yr old
 
Hi,

Both my daughters have hemangiomas. My 3 year old, Kaylie, has 3: a large one on her upper arm, one large and one smaller one on her tummy (she also has stork marks on her eye lids and a line in the middle of her forehead which don't show very much). On a good note the hemangiomas have considerable reduced in size now!
My 4 months old, Millie, has 2: one on her forehead and one at the back of her head (and light stork marks on her eyelids). The hemangiomas are still getting bigger and I'm afraid they'll get as big as her sister's.

We lived in England until 3 months ago (now in Illinois, USA) and when we had Kaylie we were told there was nothing that could be done about her birthmarks and they would go away with time. When Millie was born we were told again that nothing could be done and since they don't disturb her vision we shouldn't worry about them. As they keep on getting bigger I am getting a little concerned as to how this will effect her self esteem when she gets older. Kaylie never had any problems as we are able to cover her birthmarks so no one has ever made any comments (she doesn't wear tops with no sleeves as she used to get "looks" when she was a baby and I didn't want her to have to deal with this when older). However as Millie's birthmarks are very obvious we do get a lot of comments from adults and children (who point them out etc) every time we're with a group of people, at the moment she's too young to notice but I can imagine this won't be very nice when she's older and understands what's going on.

It's only now after googling about it that I've learnt that there are other options than just leaving them. Our new pediatrician here also told us "to wait and see; they'll go away on their own" usual speech. As they are quite large though won't the stretched skin still remain if they do eventually totally disappear? After looking at before/after photos of babies using Propranolol I wonder if we should be giving this a try or not? Would laser treatment be effective? Does anyone know if Millie's likely to have a bald spot where her hemangioma is? Sorry for all the questions! I'm not sure who to turn to for advice since the pediatrician doesn't seemed bothered. Any help/advice would be greatly appreciated.
Thank you!
Stefany (Naperville, IL)

Photos (Kaylie's photos are in the next comment as I was limited to posting 4)

Millie (4mths old)




Stefany 02-13-2011 01:07 AM

Photos:

Kaylie (3yr old):



smurph 02-13-2011 03:25 AM

Hi Stefany,
I certainly think it couldn't hurt to look into your options. I would try to go to a specialist and see what they say. You could also email your situation and photos to one of the experts here and see what they have to say too.

Mostly I wanted to respond because I also have multiple children with hemangiomas. 3 out of 4 of my daughters have them. My oldest has none. My 5 year old has a lip hemangioma (was on oral steroids during her first year, had surgery last June and has an upcoming laser treatment). One of my 2 year old twin daughters has a pretty extensive one on her hand/wrist (no treatment...going away on its own) and her twin sister has a small superficial one on her arm. We have a family of hemangiomas and before my 5 year old was born I had never even heard the word hemangioma in my life!!!! What an education and experience it has been for me!

Just wanted to wish you luck on your journey. I suggest finding out all your options from a specialist and then going with what you think is best. Good luck!
Shannon

smurph 02-13-2011 03:29 AM

I forgot to mention...I think I have read before that when children have multiple hemangiomas on the skin there is a chance they may have some internally. I'm really not trying to alarm you because I don't know how often that really occurs, but I just thought it might be something to mention while talking to your doctor or specialist in case they want to do any tests for that. Just a thought! Shannon

Stefany 02-13-2011 03:53 PM

Thanks for your reply Smurph! As for seeing a specialist, who would you recommend I turn to, should it be a dermatologist?

I was the same as you, I had never heard of hemangiomas until I had my DD#1. No one else in my family nor my husband's have had these types of birthmarks. Thanks for mentioning about the potential internal ones; again I didn't even know about this possibility until last night! I wonder why they never checked Kaylie for these when she was younger, grrr. Hopefully we can find a dr. who knows more about hemangiomas and see if they should be checked for possible internal ones. I wished I had thought about looking this up for myself earlier instead of just listening to our doctors...

Stefany 02-13-2011 03:56 PM

Just thought I'd share this picture too, Kaylie's (bigger) hemangioma that's on her tummy was in the shape of a heart when she was born:


smurph 02-14-2011 12:39 AM

That's actually kinda cute! A heart shaped hemangioma. As for the possibility of internal ones, I'm not a doctor so I really don't want to alarm you unnecessarily, but I read that on the Children's Hospital website (Boston) where my daughter goes. As for a doctor for your daughter, if you look at the resources page on this site they have a page called "Find a Doctor." I'm not familiar with your area but maybe someone on here will have a suggestion of someone to see, usually it will be a dermatologist that specializes in hemangiomas, or a pediatric plastic surgeon that specializes in vascular anomalies. In the meantime, you can go to "Ask the Expert" page here on this site and email Dr. Levitin with photos and he'll get back to you with his opinion.
Good luck!!
Shannon

Stefany 02-14-2011 01:07 AM

Quote:

Originally Posted by smurph (Post 22727)
That's actually kinda cute! A heart shaped hemangioma. As for the possibility of internal ones, I'm not a doctor so I really don't want to alarm you unnecessarily, but I read that on the Children's Hospital website (Boston) where my daughter goes. As for a doctor for your daughter, if you look at the resources page on this site they have a page called "Find a Doctor." I'm not familiar with your area but maybe someone on here will have a suggestion of someone to see, usually it will be a dermatologist that specializes in hemangiomas, or a pediatric plastic surgeon that specializes in vascular anomalies. In the meantime, you can go to "Ask the Expert" page here on this site and email Dr. Levitin with photos and he'll get back to you with his opinion.
Good luck!!
Shannon

Thank you Shannon :) !

jkmorgan333 02-14-2011 12:36 PM

Our daughter had two hemangiomas on the side of her head behind either ear. They were about the same size as Millie's. When she was about 6 weeks old, our doctor ordered an ultrasound on her head to ensure that there weren't any internally-and there weren't. I guess they weren't worried about the possibility of any inside her torso area since they just scanned her head.

We did the wait and see approach until she was about 10 months old and then we started her on propranolol. The medicine helped a lot-I only wish we had started it sooner. One of the hemangiomas had gotten so big we did get it removed because her skin was overstretched. I don't know for sure, but I assume that had we started propranolol while her hemangioma was growing we could have avoided it getting so big and therefore avoided surgery. I have not had this thought confirmed by a doctor, but it's my personal thought on it.

At any rate, she's 19 months now. Her surgery was a month ago to remove the larger of her two hemangiomas. We chose to leave the smaller one since it's pretty well covered by her hair, and her skin is not as overstretched there. She's doing fabulous, and her scar is healing beautifully!

NevaehsNana 02-14-2011 04:37 PM

I have learned a lot over the past 4 weeks as my granddaughter has several on her face and one in her airway. We had to take her to the regional Children's Hospital in Seattle to get answers as every doctor near us wanted to diagnose her with croup at one and a half weeks old. Babies don't get croup at that age and we have come to find out that 85% of babies with a "bearded" Hemangioma, which she has, have airway H as well. They have a team called vascular anomalies at Children's in Seattle and since Propanalol is working with H's they don't believe in the wait and see approach. I hope you find a doctor that will help!
Blessings,
Kathy


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