New w/ Questions Please Help! - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment.
Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Twins With Birthmarks

Reply
 
Thread Tools Display Modes
  #1  
Old 08-02-2007, 11:20 PM
pichpaw pichpaw is offline
Junior Member
 
Join Date: Aug 2007
Posts: 24
Default New w/ Questions Please Help!

Hi All,

I have twin boys who are 3 1/2 months. One of them developed a hemangioma around 3 weeks of age just next to the outer corner of his left eye. It is a little bigger than 1/3 dime size and raised just over 1/8". I had an appt. w/ Kaiser's pediatric dermatologist who prescribed oral steroids (6 ML/day) along w/ Zantac and antibiotics. His H is not affecting his eye or vision but of course we don't want it to get bigger and obviously want it to go away. He has been on the meds for 6 days and I have noticed a VERY slight improvement-- H is softer, less bright, and a darker more purply red w/ maybe a grayish tinge (rather than bright red). It also looks just a TAD less raised--like slightly deflated. However, these changes are very slight so much that my husband can barely tell. My questions are:

1) How soon after starting steroids should one expect improvement? Is this improvement encouraging or does it look like he might not respond?

2) He is fussier. Does this always last or sometimes subside? Also I am so worried that I am doing him harm by giving him these meds.

3) Do any think it's wiser just to go straight to (plastic) surgery to avoid meds? Please share any experience w/ steroids vs. surgery.

3) Does an H need to be totally flat to do laser? The dr. said she can't do laser w/ it raised.

4) Has anyone done cryotherapy for a raised H?

I would so so much appreciate any advice as I'm really worried about this.

Thank you so much!

Zoe
Reply With Quote
  #2  
Old 08-11-2007, 03:55 AM
mom2savyandsharon mom2savyandsharon is offline
Junior Member
 
Join Date: Apr 2007
Location: spring texas
Posts: 1
Default

can you post a picture of his hemangioma that i can see?
Reply With Quote
  #3  
Old 08-11-2007, 04:26 AM
pichpaw pichpaw is offline
Junior Member
 
Join Date: Aug 2007
Posts: 24
Default

kodak easy share has co-opted all photos and i can't seem to attach them, but can only use that program. does anyone know how to override kodak and attach them? sorry i'm not computer savvy.
Reply With Quote
  #4  
Old 04-03-2008, 03:11 PM
dilarossi dilarossi is offline
Junior Member
 
Join Date: Apr 2007
Posts: 7
Default

My *personal* opinion - the less meds at this young age, the better. Your son's H is not big and doesn't affect his vision, right. I would just wait for about a year. The H might involute on its own and he is too young to be self-conscious about it.

Here's a link to somebody's post with pics that might be helpful:
http://www.birthmark.org/board/showt...eferrerid=3285

Your questions:

1) How soon after starting steroids should one expect improvement? Is this improvement encouraging or does it look like he might not respond?

- don't know because we never tried steroids, deciding between laser and surgery.

2) He is fussier. Does this always last or sometimes subside? Also I am so worried that I am doing him harm by giving him these meds.

- don't know. Didn't try steroids. I would try to avoid them if medically possible and H is not life threatening and doesn't affect functions of the body.

3) Do any think it's wiser just to go straight to (plastic) surgery to avoid meds? Please share any experience w/ steroids vs. surgery.

- we are deciding between laser and surgery. didn't try steroids.

3) Does an H need to be totally flat to do laser? The dr. said she can't do laser w/ it raised.

- I got the same answer from our doctor. From what I understand, if the H is raised, laser would only bleach it (reduce redness), but the extra skin will remain and the child would need another procedure to improve the averall appearance.

4) Has anyone done cryotherapy for a raised H?

- I would like to know that too. From what I've been reading, this method could remove H with minimal scarring.
Reply With Quote
  #5  
Old 04-14-2008, 05:15 PM
Sam's Mom Sam's Mom is offline
Junior Member
 
Join Date: Oct 2007
Posts: 25
Default

Hi there -

Our son Sam has a parotid hemangioma that we treated with steroids for three months (about 6 weeks at full dose and 6 weeks weaning) starting when he was 7 months old. He's now just over a year. Based on our experience, here are a few answers:

1) We saw change in Sam's hemangioma within a few days as well. In his case, the deep part went away almost completely after about a month or so and we haven't seen noticeable rebound growth at all. He's been weaned almost 2 months.

2) We were also worried about the effects of the meds and only time will tell if there are any long-term impacts. Sam wasn't much fussier, but he barely slept for many weeks. It was really really hard - he would literally sleep for an hour or an hour and a half at a stretch and then be up for an hour to two hours - all night. That was the only problematic side effect and it began to resolve (as did the huge cheeks and the weight gain) about half way through the weaning process.

3) I think that the steroids vrs. surgery question is so different for every situation that it's hard to say. For us, given the inherent risks with any surgery and the excellent outcome we had with the steroids, I think we did the right thing. Our own doctor felt strongly that Sam was not a candidate for surgery although we did send some photos to other doctors in the US (we are in Canada) who disagreed. A lot of posters here suggest following your instincts - unfortunately my instincts said something different from minute to minute. I decided that we needed to trust our doctor and try what I felt to be the least intervention possible first. Your mileage may vary.

4) Don't know the first thing about cryotherapy but I'm sure someone here will.

Best of luck!
Reply With Quote
  #6  
Old 04-14-2008, 05:18 PM
Sam's Mom Sam's Mom is offline
Junior Member
 
Join Date: Oct 2007
Posts: 25
Default

I've just noticed that this is a very old thread. Whoops!
Reply With Quote
  #7  
Old 06-23-2008, 01:54 AM
E & E mom E & E mom is offline
Junior Member
 
Join Date: Jun 2008
Posts: 2
Default

I see this is a VERY old thread but my son has the same H two very close to his eye and I would like to know how Zoe experience turned out w/ steroids? Thanks.
Reply With Quote
  #8  
Old 04-07-2009, 08:48 PM
emilyjane emilyjane is offline
Junior Member
 
Join Date: Apr 2009
Posts: 1
Default Twin with Carnevous hemangioma

Hi There,

Im new to this site, its very helpfull.
I hope all is ok with you all.
im not quite sure on treatment or medication, I have just started to read up on treatments. What hospital are you at?
I have been referred to great ormond Street london as the hospital we were at were usnure. My twin girls were born at 36+4 days we noticed Chloe had a blue lump abouce her chest, its been diagnosed as a right infra clavicle 1.7 x 1.1cm haemangioma. My worry is that its close to her main veins. Im so glad i found this site.
I will let you now how the apps go,
Good luck
Reply With Quote
  #9  
Old 09-08-2009, 03:08 PM
madeeha madeeha is offline
Junior Member
 
Join Date: Sep 2009
Posts: 7
Default haemangioma

hi emily

how did your app go at GOSH, my daughter has very large haemangioma on right side of her face and is being treated at GOSH with propranalol its working well however in last month or so shes outgrown the medicine and looks like gosh will need to double dose as her face looking redder than usual
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
General malaise and questions hughes Adults Living with Birthmarks 2 01-27-2009 02:37 AM
Questions re: duration, effectiveness of laser treatment oprichard Port Wine Stain Help and Resources 3 10-18-2007 03:06 AM
PWS questions about scheduled treatment mommy23 Port Wine Stain Help and Resources 8 04-05-2006 02:24 PM
questions about PWS katie_girl Port Wine Stain Help and Resources 3 12-20-2005 12:50 PM
Many questions..... QCBirthmark Port Wine Stain Help and Resources 18 08-16-2005 11:53 AM