5 Month old with PWS on hand - Vascular Birthmarks Foundation Forum
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Old 12-31-2007, 05:25 PM
ethansparents ethansparents is offline
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Join Date: Aug 2007
Posts: 2
Default 5 Month old with PWS on hand


I'm hoping I can get some advice for PWS on my infant sons hand. His name is Ethan and he is a terrific little kid. He was diagnosed with PWS on roughly 1/3 of his left hand. It is quite dark already but doesn't seem to cause him any sort of pain.

In visiting with our doctors here in Calgary, Alberta, it became clear there really wasn't much current knowledge on the kind of treatments available today. I have learned considerably more in my frequent visits to this site than what our doctors have been able to provide so far.

In our last visit with a dermatologist, we were advised that treatment shouldn't happen until he is 2 yrs old since he will be put under general anesthestic. This seemed very contrary to what I have learned. Earlier treatment is preferrable (i think) and I don't believe children need to be have general anesthestic do they?

This puts us in an ackward situation of not knowing what to do as a next step. Do we wait until he is closer to two years of age to do something? We have full coverage for treatment here, but I am doubtful the latest techniques and lasers are available locally. If anyone has some advice as to a next step, I would greatly appreciate it.
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Old 01-03-2008, 07:27 PM
michelle.karim michelle.karim is offline
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Join Date: Nov 2005
Location: Essex, United Kingdom
Posts: 16
Smile Hope I can help

Hi, My name is Michelle. My son, Sam, is 11 years old and has PWS on 1/3 of his left hand and his arm. We were told the same as you when he was small and so consequently left things alone. The advice we received was that the cons of general anaesthetic outweighed the pros of the treatment. They use general anaesthetic on infants because they cannot be sure of them keeping still. When we returned to Great Ormond Street at a later date we were told that it probably was better to start treatment as soon as possible, but at that time Sam was about 7 and too scared.

Sam has since had a few incidents where his hand has become swollen and painful. This can happen when it is cold or when he has a temperature. Some times it may have been as a result of it being knocked (only very slightly tho!). We decided to go back to GOSH and ask for some advice. The surgeon (Dr Samira Syed) said that as the child grows, their PWS can undergo changes. Sam's hand has started to develop minute red spots (which I cannot see!) and these are sign that it is thickening. She suggested we try a test laser session on an area where his PWS is less dense than his hand. In November Sam had this test done on his arm - he had a local anaesthetic cream applied (magic cream!) and I gave him some Calpol. He was very relaxed as the surgeon and nurse explained everything beforehand - even down to describing how the machine looked. He didn't feel a thing! We were told to use iced water to cool the area after treatment and given cream to apply four times a day. It was sore the next few days but healed very quickly - he had to miss football and PE at school for two weeks but that was all.

Sam will be returned to Great Ormond Street Hospital in May for further treatment to the rest of his arm if the surgeon is happy with the results. As yet, I cannot see an improvement but this may happen in time. She is uncertain whether they will actually treat his hand as this area is much darker than the PWS on his arm, but we are hopeful. She also said that the swelling on the hand is more severe and may prove too painful.

I hope this has been of some help. Please feel free to email me should you want to talk more. My email address is michelle.karim@virgin.net.
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Old 01-03-2008, 08:38 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

Dr. Nelson of Beckman laser institute (surgeon and engineer developing lasers/devices/techniques for vascular lesions) wrote me about early intervention. It is often beneficial to start treatment earlier. Here are his points:there are a number of good reasons from an optical
point of view to intervene earlier: 1) less epidermal melanin to
block the laser light; 2) less dermal collagen means less optical
scattering making laser treatment more effective; 3) blood vessels
size is smaller; and
4) lesion thickness is less.

I know Canada does not have a lot of resources with new equipment and as in the U.S. it is still common practice to wait. Treatment is not always necessary...but some of the U.S. doctors have studied so many cases that they have found the optimal time to treat a patient. (treatment needs to be customized to the patient...no one treatment route (i.e. laser type/laser settings) will work for all patients.

If at all you can travel to the U.S. for an opinion/treatment or you are willing to seek an opinion via email with some of the "ask the experts"...I would encourage you to do so. Sending pictures can aide them in an opinion.

Good luck and keep us posted.

Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 01-10-2008, 09:07 PM
Lailasmom Lailasmom is offline
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Join Date: Jan 2008
Location: Calhoun City, MS
Posts: 3
Question Lailasmom:11 mos old PWS on right hand


I just joined in search for more information regarding treatment for my little girl's PWS on her hand. It covers her thumb and part of her index finger, extending into the palm. So many people have made me feel like I am being vain when I talk about getting this removed. But from my research I have discovered that this could ultimately cause problems if not treated. The ped told us she did not have the type that would grown and to have it removed when she is old enough to aks about it. But his partner, and son, recommends what I have been reading in research. Earlier intervention is best.

For all these reasons, I have delayed this until after her first birthday. With it fast approaching I am looking for a doctor. In searching, I discovered this website.

Seeing you and that you have started your search early. I was hoping for any knowledge you have learned so far that may help our selection. Have heard via rumor and resources that there is a specialist in Arkansas which is not that far for us.

I emailed the expert on PWS on this site. He said that Dr Lisa Buckmiller was at Arkansas children's and I had previously found her as well but was not sure that she was the one I had been hearing about.

Anyway, hoping that you can share some wisdom with me as we set out to seek treatment for my sweet angel. I know that this is the right decision. When she is 12 nad 13 she will be glad that her parents were proactive I think!

Thanks for any guidance you might be able to offer!

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Old 01-10-2008, 11:40 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Dr. Buckmiller is probably the specialist you had heard of. It's worth going to see her if you can manage it from Mississippi.

Let us know how things turn out!

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Old 01-13-2008, 02:36 AM
ethansparents ethansparents is offline
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Join Date: Aug 2007
Posts: 2

Thank you for the feedback everyone. I think I would like to see a U.S. based dematologist for a full assessment. We are regular travellers to Phoenix, so I'm wondering if anyone can provide a recommendation on a physician in Phoenix.

Thanks for any assistance.
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