Portwine Stain On The Leg
My Son will be 3 in November and he has a PORTWINE STAIN on his (left) leg,buttocks,foot&3toes,and a spot on his penis and scrotum.He will have his 8th laser surgery on Augest 29th.This is still EXTREMELY diificult for me.My Son has to be put under anesthesia due to his age and the pain from the laser treatment.His left leg with the PORTWINE STAIN WAS smaller than the right.He has seen the BONE SPECIALIST 3 times and the x-rays show only a .5cm difference in length.Also,his LEFT butt cheek is smaller(this IS noticable)My Son's leg is now the same size as the right but his LEFT butt cheek does not seen to have caught up yet.The Doctors do not know why this is.I would love to talk with other parent's who have a baby with a PORTWINE STAIN on the LEG.Any emotional support would be nice,too.-from issues on what you do to protect the LEG from sun,owies,burns,scrapes,after treatment to people's rude staring.I would love to share also.Thank You, AMY
First of all welcome to the group.
Have you done any research on KT syndrome? The reason I ask is because a lot of people I know that have PWS on the limbs have KT. The difference in the size is one indication that I heard you talk about. I have a condition with my PWS called Sturge Weber Syndrome. In which KT is linked to that as well but given the location of your sons PWS I do not think he would have this, but SWS sites have a lot of info about KT as well.
One thing I would suggest is to contact the KT and the PWS experts on the front page of this website. Send them pictures and see what they would recommend about the butcheek area. Remember if for some reason you ever become uncomfortable with the current doctor you are seeing you can always get another opinion.
For treatments I would suggest the least amount of sun exposures before and diffently after. If he is going to be in the sun use 50 block on the area where his pws is because the sun will make the laser treatment less effective.
You can see before and after pictures of what laser treatment has done for me in the past 19 years on my website www.hankspws.com . Being that I have a very dark purple birthmark it takes longer for the laser treatments to help. The lighter your sons PWS is the easier it will be to treated.
For the stares plus everything else. Being that I have a facial PWS there are a lot of different. I have learned how to not let the comments get to me. In so speak let them roll off my shoulders. It still bothers my friends when I am around them and people are staring at me they get affended. If you are act in a negative effect with people and your son sees this he will do the same. I personally always choose the educational side of it. Teaching people about it makes them more comfortable. on my website I wrote a paper on social issues if you have any interst in reading it, it might help.
I am sure others will chime in and give you the parent prospective. If there is any other questions you have please let use know we are here for you.
Hank,thank you.My Son does not have KT or SWS-we've looked into it and the Doctors informed us,too.Thank you for your kindness....you look great!GOOD LUCK and best wishes to you!When and IF people stare I just don't notice-It doesn't bother me anymore.You know what makes all the difference in the world? A FABULOUS PERSONALITY-our Son has this and I believe you do too.As for Doctors,we have the BEST for our Son as I'm sure you do.That was a MUST!! AMY
Hi, My daughter Emily is now 5 and was born with PWS on her face,and most of the right side of her body. When she was 6 months old we started the laser treatments on the face and they look much better. But it didn't work on the arms and legs. I am looking around to see if there are any new treatments available since it has been almost 5 years since her last laser treatment. We kind of gave up when it didn't help in the extremities. I am thinking of all of you and if anyone has any advice, I would really appreciate it.
Well the good news is there is so much new technology these days rather then when I was young. You have got an early start on your sons condition which is very commendable. My mother didn't start trying to find treatment options until I was about 7 years oldd Most likely it was because there really wasn't much of an option. Doctors said sit back and wait and see what happens and then one doctor told me I only had 6 months to live so to make th most out of it. The fact is that they really have learned a lot in the last 10-15 years about this condition. Of course, your sons case is a little different then mine. I have a very large VM (hemangioma) that goes from my lower left leg and all the way up into my stomach. Although it is not the same as a port wine stain, the area your son has his birthmark in is a lot like the area mine is in. I recently had a pelvic exam and they found that it is starting to invade my rectum (which is causing serious bleeding) and the pelvic exam was almost unbearable due to the fact that they think the tumor is beginning to be in my private area. The Pel Xam was so painful I nearly threw up. Anyways, As for protection, I don't know if it's the same w/ port wine and hemangiomas but I was always told I had to be careful not to puncture the area of my birthmark because there is a chance I could bleed to death from just a small lesion to any part of the Bruised region of the birthmark. I am not sure about the sun or if it has any effect on these types of birthmarks. I am currently seeing a radiation oncologist and they seem to know more about my condition then anyone so far so thats what I reccomend. Good luck w/ everything!
my son is 5 months old and was born with port wine stains down his right leg. a day or two after birth we had him scanned and were told that he had an extensive malformation. most of the doctors there had never seen this before and told us we should monitor it carefully but that he'd probably grow out of it. we did a little research on venous malformations but our son didn't seem to have the extreme deformities which some of the other kids had, so i didn't think much of it. 2 days ago i noticed that his right leg is smaller than the left. it looks the same length but it's definitely thinner. on further examination i've noticed that he favors standing on the left leg and that leg seems much stronger. needless to say it feels like my heart has just been ripped out.
we are going to see a specialist on monday to get the diagnosis but i fear, after much research, that these types of conditions are often mis-diagnosed and i'm imagining his life of constant visits to hospitals. can you offer any advice? did your child start walking normally and did he experience any pain other than after the treatments? i also wasn't clear on whether you said that your sons legs were now the same length or were only 0.5cms different?
how is your son progressing as he gets older?
thank you for sharing your story.
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