son with PWS on torso - what do we do? - Vascular Birthmarks Foundation Forum
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Old 02-25-2012, 05:15 AM
momtoxman momtoxman is offline
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Default son with PWS on torso - what do we do?

Hi all,

I am new to the site. My son will be 2 years old next month, and was born with a PWS on three different areas of his torso, covering about 35% of his side, stomach and back. It seems really unsual to have a PWS on the torso. Does anyone else out there have a PWS on the torso area?

At his birth we were referred to a local dermatologist who recommended that we do nothing. Since then, I have struggled with knowing if that is the right the thing to do - treatment or not. My husband thinks I am being vain by even researching treatment, but the more I read the more I worry about how his PWS may become problematic as he ages and how much of a psychological effect it will have on him. His birthmark is not an issue at all when he is clothed, but now that he is a toddler and he lifts his shirt up for fun we are dealing with gasps and frantic looks from both strangers and friends. I took him to a hotel pool last week and a young woman asked me if he was 'sick'. I am not used to yielding these questions, and I am feeling very empathetic towards those of you who deal with this type of stuff daily.

Family is a whole other issue...His grandma's were both pro-treatment at first, and not accepting of his marks, but now that he is turning into a little man it seems to be less of an issue. His aunt has not even seen his marks, and I am happy for this - she is competetive with me and probably secretly gleeful that I am dealing with this. I am ashamed to admit that I cover him up when I can, both because I want to protect him and because of my own insecurities. I know other parents out there must feel this way sometimes too though.

I guess I am unsure about looking into treatment because I am unsure of what is best. Would it change things for you if you or your child's PWS was on an area of your body that was more hidden, such as your torso? Would you still seek treatment or would you have let things go and do the 'wait and see what happens' game?
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Old 02-25-2012, 05:23 AM
momtoxman momtoxman is offline
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I just read on another thread that laser is not very effective on the trunk area. Does anyone know if this is true?
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Old 02-25-2012, 12:06 PM
abatie abatie is offline
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My daughter has CMTC and not a PWS but I can relate to your hotel story. When we were at a hotel we were trying to get Becca used to the water temp. These people kept staring at her. Then when we put her in the water the lady got out-how rude! Anyway your skin will get thicker! I used to cover Becca up all the time but with shorts and the summer I have realized people are going to see her markings. I actually heard people talking about how Beeca got hurt and what caused it. I stopped the people in their tracks. She was not hurt or beaten but has a condition called CMTC. They were embarrassed by their actions. I know of families who actually carry cards explaining CMTC for this reason.

As far as treatment I don't know a lot about laser because it isn't effective on CMTC. Hopefully more parents will be around soon. Best of luck!
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Old 02-25-2012, 09:08 PM
KatieG KatieG is offline
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Our doc actually said that laser works better on the body than on extremities. My daugther's is on her leg and after 2 laser treatments we have not seen much change.
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Old 02-26-2012, 03:19 AM
swaltjen swaltjen is offline
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My son just turned 1 and he has a PWS on his right left (from his hip down to his toes). When he was diagnosed 6 months ago the dermatologist wanted to start laser treatments ASAP. My husband and I decided to take the wait and see approach. Honestly, had the PWS been on his face we may have made a different decision.

It took me a while to become "okay" with waiting on laser treatments. I understand how you feel about him not wanting to be treated differently b/c of his birthmark, but at the same time I do not want to be putting him under GA at such a young age. When he is older and able to receive treatments without GA and he has a better understanding of what is going on then we will re-evaluate. And if it seems like it gets worse before then we will re-evaluate too.

I would also like to say that so far we haven't had strangers make any comments about his PWS. Our neighbors who are good friends of ours noticed his leg and asked questions which didn't bother me in the least, but I know I will feel differently when/if the general public starts commenting on his leg.

Best of luck to you and your little guy!

Sarah
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Old 02-27-2012, 02:06 AM
momtoxman momtoxman is offline
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Thank you all so much for your thoughts. Parenting a child with a birthmark can be emotional sometimes, and I just really appreciate knowing that you all are out there and I am not alone.

abatie - I hope that someday I am couragesous like you and just 'stop folks in their tracks' when they start making assumptions. In the past I've just remained quiet, but I am starting to find my voice....I cannot believe that woman that got out of the pool. How horrible!

Katie - That is good news for me. Thanks so much for sharing! I'm sorry your daughter's treatments on her leg haven't worked out as well has you'd hoped . Maybe with more treatments it will improve.

Swaltjen - We were really concerned about anasthesia too when our son was still an infant. Now that he talks and runs it's less of an issue for us. My other concern is letting him have a say in all of this. He is too little to even understand that he has his birthmark, and I have no idea how he will feel about it as he matures. Of course, I want him to be fully accepting of himself as the perfect little man that he is, but I know the world can be cruel and I don't know how he will feel about it as he gets older. I also worry what message I am sending to him if I start hauling him to doctors for laser surgeries before he even has a clue as to what is happening to him. Will he resent me as he gets older for not loving him exactly as he is? Or will he be upset with me that I didn't do more for him when he was still little? Such agonizing things to think about! This is so hard to navigate, and I feel like I'll never really know if I am doing the right thing.
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Old 03-01-2012, 02:11 AM
swaltjen swaltjen is offline
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Quote:
Originally Posted by momtoxman View Post
Swaltjen - We were really concerned about anasthesia too when our son was still an infant. Now that he talks and runs it's less of an issue for us. My other concern is letting him have a say in all of this. He is too little to even understand that he has his birthmark, and I have no idea how he will feel about it as he matures. Of course, I want him to be fully accepting of himself as the perfect little man that he is, but I know the world can be cruel and I don't know how he will feel about it as he gets older. I also worry what message I am sending to him if I start hauling him to doctors for laser surgeries before he even has a clue as to what is happening to him. Will he resent me as he gets older for not loving him exactly as he is? Or will he be upset with me that I didn't do more for him when he was still little? Such agonizing things to think about! This is so hard to navigate, and I feel like I'll never really know if I am doing the right thing.
In my humble opinion, the fact that you are putting so much thought into your decision demonstrates just how much you love your son and how important it is to you to make the right decision for your family.

What helped me feel better about our decision to hold off on laser treatments was that we could change our mind... if in a few years it looks like his PWS is darkening or changing then we can go ahead with laser treatments. It may not clear up as much as it would have had we started when he was 6 months, but it will look better than if he didn't have laser or waited until closer to adulthood.

Even though I feel good about our decision to wait, I still get that nagging feeling every now and then, but ultimately I know that it's the right decision for us right now.

I hope that helped a little.
Sarah
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Old 03-01-2012, 03:19 PM
Walsh6 Walsh6 is offline
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I am just learning more about my 14 year old son's birth marks. I have mentioned that they cover both feet and legs all the way up to the small of his back. I do not know what his condition is yet but I can speak to people looking and asking questions. I never covered him up. I was a special education teacher and felt blessed that my son was other wise healthy. My mother in law went through the roof when she saw him. He was born half purple. My favorite comments always came from the pool. Mother's asking if I knew to use sun screen or what kind of rash does he have. I always smiled and said it is just a birth mark. Now that he is 14 his marks have grown with him. A new teacher might ask or a new kid but now my son gives the same answers. His marks have never gotten in the way of friends, girlfriends or sports. He does say from time to time he wishes he could get them removed but we know that laser treatment might not work and we do not want to put him through it. He is no longer always purple but a mostly a light marblely red except in extreme tempertures. We helped our son when he was very littel by giving him names like Chief Red Butt or Doctor vein. Good luck, I am sure your child is very special.
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Old 04-05-2012, 06:01 PM
roub roub is offline
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hi momtoxman. i'm 22 years old and with a pws on my right leg, thigh, 2 toes and even my butt. my parents have never bothered about it. i never had any health problems but i always cover it up. because else people stare !! of course i can't cover my toes. so people stare at them and usually ask me why they are purple. so imagine if i did not cover the upper part !! i think u took the right decision by not doing laser because this might create further complications n neway the pws won't go away. he will have to accept he was born with it and it is a part of him. i have not come over it yet.till date no boyfriend. i'm afraid they would freak out when seeing it n i will feel even more complexed than i'm already am
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Old 05-01-2012, 04:27 AM
kaelinja kaelinja is offline
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Momtoxman,
My recommendation would be to do any and every treatment option you can while the little one is young. As you get older, your PWS becomes less prone to successful treatments. While the PWS is young, it is more likely to have some success in treatments.
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