Treatments for PWS

erih · #1 11-04-2008, 01:10 AM

Hey all, I was wondering if you've noticed a lot of swelling after treatments.

I have a PWS on the left side of my forehead & have been getting treatments (about 4 total so far) on it & after every one, my left eye nearly swells closed due to the treatment. I had some when i was younger (in either Kindergarten or 1st grade) and neither my mom or I remember my birthmark swelling or particular need for me to stay out of the sun and keep slathering Vaseline on it.

Has anyone else experienced this?
Thanks!
~Eri

zuzuspetals · #2 11-05-2008, 06:11 PM

I can tell you that my daugther has laser treatments for her PWS, which is also near her eye. For the first few days, her eye does become very swollen. In the morning, particularly, it can be almost swollen shut.
I have noticed that as the intensity of treatments is increased, the swelling is increased (so there wasn't really any swelling for the first couple treatments when they used a lower setting on the laser).
Perhaps this is the reason for the swelling now, as opposed to when you were younger. Maybe because you are older now and have previously undergone treatments, your doctor is using a higher laser setting.
This has been my experience with my daughter. Happy healing!!

tess · #3 11-06-2008, 11:39 AM

Eri,

My daughter has a PWS on one side of her face, including the eye area. Her eye becomes puffy following laser treatment. The swelling usually subsides within a few days. We also have to keep her skin very moist following treatments (by using Aquaphor) so that it doesn't become chapped or blistered.

I think what you are going through following your treatments is normal, but if you want to give your doctor a quick call with your question, I'm sure that will put your mind at ease.

Blessings to you!

erih · #4 11-07-2008, 11:53 AM

Thanks Tess. I have talked to my doctor about it (he's told me to use Vaseline tho...very messy & gets *everything* oily

), and he didn't seem overly concerned. I've just been getting emails from a newsgroup on a different site & none of them have mentioned swelling.

Superchikk · #5 11-10-2008, 09:36 PM

Our son receives treatments for a PWS on his cheek and up near his ear. The doctor has used a low setting for his treatments so far, but I have noticed a little swelling for a day or two following his treatments.

We were told to put an ice pack on it (covered with a cloth) to help reduce swelling and discomfort. A toddler usually doesn't sit still for an ice pack, but for the first day or two afterwards, he seems to like it. You could try an ice pack periodically and see if it will help.

erih · #6 11-11-2008, 01:06 AM

Superchikk, I was told to definitely NOT use cold packs on or around mine...

Luck to your son with his treatments.
~Eri

Nicoleta · #7 11-21-2008, 02:48 PM

Quote:

Originally Posted by zuzuspetals

I can tell you that my daugther has laser treatments for her PWS, which is also near her eye. For the first few days, her eye does become very swollen. In the morning, particularly, it can be almost swollen shut.
I have noticed that as the intensity of treatments is increased, the swelling is increased (so there wasn't really any swelling for the first couple treatments when they used a lower setting on the laser).
Perhaps this is the reason for the swelling now, as opposed to when you were younger. Maybe because you are older now and have previously undergone treatments, your doctor is using a higher laser setting.
This has been my experience with my daughter. Happy healing!!

Hello,

I just registered I'm looking for someone who tried treatment of the eyelid for PWS. I have a son who is now 16 months old and started laser treatment when he was 8 months. The treatment is going quite well but our doctor did not try the eyelid treatment, as we need a special shell for the eye. I tried to order it from a USA company but it seems they do not have the right shells for children. Do you know a company providing this kind of shells? What to expect after the eyelid treatment? How risky is it?
Is it true that people with PWS have to treat the birthmark for their entire life?

erih · #8 11-22-2008, 07:12 AM

I'm not sure about the shell...I was under the impression my Dr would obtain it for me.

& I believe people with PWS will have to treat it for their entire life. I think it might be possible that the treatments, if done at a young age, will have more of an effect than at an older age, so the amount/type of treatment might not be as much/strong.

Hope this helped!

Nicoleta · #9 11-24-2008, 07:21 AM

Could you please tell me where I can find a company providing shells for laser treatment? I'm from Romania and it seems I have to order them elsewhere (as far as I know in Romania there is no branch of a company specialised in titanium shells).
Our doctor told us that we have to order the shell ourselves as he will only proceed the eyelid treatment. I really don't know what size and type are the best. Mostly I'm worried about the risk of damaging the eye if the shell doesn't fit right or the texture is inadequate.

erih · #10 11-27-2008, 01:54 AM

Sorry, Nicoleta, I have no idea where to even start looking. Have you asked your doctor? he might know.
Dr. Nelson might know too. You can find his contact info on the "Ask a Pro" page (that might not be the actual page name..I forget what they call it here).
Luck to ye, tho!
~Eri