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-   -   New w/ Questions Please Help! (http://birthmark.org/board/showthread.php?t=2492)

pichpaw 08-02-2007 11:20 PM

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

mom2savyandsharon 08-11-2007 03:55 AM

can you post a picture of his hemangioma that i can see?

pichpaw 08-11-2007 04:26 AM

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.

dilarossi 04-03-2008 03:11 PM

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.

Sam's Mom 04-14-2008 05:15 PM

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!

Sam's Mom 04-14-2008 05:18 PM

I've just noticed that this is a very old thread. Whoops!

E & E mom 06-23-2008 01:54 AM

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.

emilyjane 04-07-2009 08:48 PM

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

madeeha 09-08-2009 03:08 PM

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


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