Vascular Birthmarks Foundation Forum - View Single Post - son with PWS on torso - what do we do?
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Old 03-01-2012, 03:11 AM
swaltjen swaltjen is offline
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Join Date: May 2011
Posts: 15

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.
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