Introduction and pictures

[MrsAntilles]

Hello all!
My son was born this May and he has a large PWS on his right leg. It extends from his butt to his ankle. He also seems to have a venous malformation on his knee that bled spontaneously last week... VERY scary for mom and dad. We've already been to see a pediatric dermatologist who took measurements and digital pictures. The plan is to "keep an eye on it" until he is old enough for sedation and imaging to determine if Klippel Trenaunay is indicated. Dr Conlon was the one who recommended this website, and I am glad he did. It's nice to see all the resources available no matter what we discover in an MRI.

Stephanie

[KatieG]

Hello! Your son is precious! Where do you live? It sounds like you are on the right track with your Dr's! Best of luck to you!

[MrsAntilles]

We are in Springfield, IL. Chicago is a day trip away, but I'm hoping with the medical school we have here there will be options for treatment locally.

And thank you, I think he's adorable too

[nickbar]

He is so adorable. It sounds like you have a supportive doctor that is keeping a close eye on him. I would recommend getting second opinions from our KTS/Malformation experts just to have that knowledge as well.

Please do keep us posted on your little cutie!

[MrsAntilles]

Originally Posted by nickbar

He is so adorable. It sounds like you have a supportive doctor that is keeping a close eye on him. I would recommend getting second opinions from our KTS/Malformation experts just to have that knowledge as well.

Please do keep us posted on your little cutie!

Thank you for the advice. I did contact the experts via the links, but did not hear back from any of them. We go back to our pediatric dermatologist on Aug 5th, so hopefully we will learn more then.

[nickbar]

If you would like, email me and I will forward your message to them and make sure you get a reply.

[MrsAntilles]

Thank you Corrine, I will send you an e-mail shortly.

We have been back to Dr Conlon for a follow up, but I feel like I have more questions than before. He did give us a KTS diagnosis. I learned that my son will continue to develop new "blebs" that can scab and bleed. Will this be a chronic problem for him? How bad will it get?

Doctor said his PWS is too dark to make laser treatments effective at lightening it, but a laser might be helpful to treat the blebs? We won't know anything for sure until we can do an MRI which will have to wait until after he's a year old because it requires sedation. We will probably have to make annual trips to a vascular anomaly clinic. The one Dr Conlon is most familiar with is: http://www.chw.org/display/PPF/DocID/36150/router.asp in Wisconsin. Does anyone have experience with this clinic?

I guess it's a good sign that his legs are still the same size right now? KTS is such a frustrating diagnosis because it doesn't predict specific symptoms and there's nothing I can do to help my poor baby.

[kaykay]

cute kid !

sorry i don't have any answers for you. i only have a pws.

You seem to be doing all the right things ! you are asking questions that will help him, as much imformation as possible will help you. Your are not alone and i am sure there are other parents out there who will share their expeirences

[mikeb23ft]

Originally Posted by MrsAntilles

Doctor said his PWS is too dark to make laser treatments effective at lightening it, but a laser might be helpful to treat the blebs?

Did they really say that? I would consider looking for a second opinion. I've seen before and after photos of dark PWS that lightened significantly after laser treatment, and treatment usually has higher efficacy in children. I'm not expert, and I only have a facial PWS, but I don't see why it isn't worth a shot.

[Babyshine12]

Hi my daughter has a pws on her face and they did a MRI without sedation and treatment is recommend it I have not started treatment on my daughter's yet. Good luck, how do you know it is KT?