PWS on right arm....KTS??

My beautiful baby boy was born with a port wine stain covering his right arm. The stain is very spotty and is more substantial underneath the elbow, underneath his armpit and on his back. It is very light pink but gets dark after a bath or when he is crying. He is only 12 weeks old. He doesn't show any difference in arm growth nor does he show puffiness. It doesn't appear to be painful(at this point) The doctor say his arm is suspicious for KT syndrome. I have read quite a bit and I am very scared. Does the growth discrepancy occur at birth or as he grows? Is there anyone that has a PWS covering an extremity (arm) but doesn't have KT? I can't find any images that resemble what he has on his arm.

I realize that laser is cosmetic. I love my baby and am not sure if I want to put him through the pain. However, it seems that it is better to get laser done earlier then later. Thoughts???

We are in Chicago and will be going to a specialist out of Children's Memorial. I am not sure that the doctor specializes in KT? Can anyone suggest someone in the Chicago area that specializes in this syndrome?

Thank you.......I am a first time mom,a concerened and loving parent with lots of questions. I never thought being a mom would be this amazing!!

[swsc]

Hi. Congratulations on the birth of your son.

I'm not sure who your doctor is, but I would encourage you to seek the advice of the VBF KT Expert listed on the home page, Dr. Kamiab Delfanian. You can submit your questions via this website. Also, you might want to contact Mark Metcalf at the KT Foundation (ktfoundation.org) for more information. Also, I think Dr. Garden who has experience with vascular birthmarks, is in that area - so you might want to check the "Find A Doctor" list, too.

I know there are people on the group living with KT, so hopefully they will reply, also. I do know someone with extensive PWS on the arms and legs, but no KT. If you would like to talk with her, I'd be glad to forward you her email address (as well as the addresses of some other moms whose babies have KT).

Many doctors now feel that it is better to start treatments early. However, it is my understanding that with KT there can be lymphatic involvement, and laser treatment might not be the best option. But I'm not an expert, so please check with your doctor.

My grandson has facial PWS and Sturge-Weber syndrome, and undergoes laser treatment with good results. As you are learning, PWS is not simply a cosmetic issue, so please don't feel guilty about seeking treatment and wanting the best care for your baby. You have to do what you think is right for your little boy.

I know this is a lot to take in at first, but hang in there. We are all here for you. If there is anything I can do to help, please don't hesitate to ask. Feel free to contact me at any time.

Please let me know how things are going, and give your boy a big hug from all of us!
Glenda
http://swscommunity.org

[nickbar]

I just want to ditto Glenda.
And don't let anyone tell you treating a pws is cosmetic. It might seem like that, but really pws can get darker, thicken and even cobble if not treated... best to start early.

Corinne

Thank you for your responses. We have an appointment (2/2/06) scheduled with Dr. Paller/Dr. Mancini out of Children's Memorial in Chicago. My insurance won't pay for that consultation but did refer us to a Dr. Michelle Bain out of University of Ill. at Chicago medical center. We plan on going and getting two opinions. The problem is I don't know if they "specialize" in KTS. I did e-mail the KTS specialist/dr. on the this website. I also registered with the KTS community chat.

I still welcome any additional suggestions or advice. Thanks again for your replies.

[nickbar]

Also, check out kt foundation. Mark the founder is amazing.

http://www.ktfoundation.org/

Corinne

[swsc]

Please let us know what happens at the appointment. I'm glad you joined the KT chat. I'm sure they will have some great advice. Again, if there is anything I can do to help or if you just want to talk, don't hesitate to contact me.

Glenda

[Lisa_99]

TMart ---

Welcome to the board!

My daughter is 16 and was diagnosed with KT at the age of 10 yrs old.

If I can help w/ any questions I'll be glad to try!

Lisa
Addies' mom
Mississsippi

( my direct em is : lisa.william99@gmail.com )

[michelle.karim]

Please don't take this the wrong way but so pleased to read your post! I thought we were alone. My son Sam is now 9 years old. He was born with a pws on his left hand and arm. It was there at birth and has not got any darker yet. It is darker on his hand and lower arm and is more "spotty" as it goes up the arm. As a baby we noticed that it changed colour according to his health - on days when he was poorly and had a temperature it would go bright red. When he is well it is paler. We were told not to be concerned when he was born, however when he was about six we went to our GP for a second opinion. He referred us to Great Ormond Street Hospital for sick children, in London. The doctors there diagnosed as a pws vascular malformation and said that it could be treated cosmetically with laser but that because of its size, Sam would probably need about 8 operations with general anaesthetic. We decided against it. We were told that Sam could return at any time when he was older if he decided to have the operations.

Sam is quite happy with his "red" hand. He says it helps him remember which is his left one. Now and again people ask if it is a burn or what it is. Sam is always happy to explain and it doesn't seem to bother him at all. My only concern is whether it will become thicker and lumpy when he gets older (as you sometimes see on older people's faces).

I guess what I'm saying is that so long as you don't make too much of it, hopefully your child will grow up feeling that it is a part of them and is what makes them special!

[olchan]

Originally Posted by TMart

My beautiful baby boy was born with a port wine stain covering his right arm. The stain is very spotty and is more substantial underneath the elbow, underneath his armpit and on his back. It is very light pink but gets dark after a bath or when he is crying. He is only 12 weeks old. He doesn't show any difference in arm growth nor does he show puffiness. It doesn't appear to be painful(at this point) The doctor say his arm is suspicious for KT syndrome. I have read quite a bit and I am very scared. Does the growth discrepancy occur at birth or as he grows? Is there anyone that has a PWS covering an extremity (arm) but doesn't have KT? I can't find any images that resemble what he has on his arm.

I realize that laser is cosmetic. I love my baby and am not sure if I want to put him through the pain. However, it seems that it is better to get laser done earlier then later. Thoughts???

We are in Chicago and will be going to a specialist out of Children's Memorial. I am not sure that the doctor specializes in KT? Can anyone suggest someone in the Chicago area that specializes in this syndrome?

Thank you.......I am a first time mom,a concerened and loving parent with lots of questions. I never thought being a mom would be this amazing!!

Dear TMart,

I read your post and my son was born 2 months ago with the same exact port wine stain you described on your son's arm, and i am very very nervous about KT. We are also from chicago and i have an appointment scheduled with the same practice(Dr. Paller/Maccini) from childrens memorial on 7-1-2011. I know it's been 5 years since you posted this message. I am very curious if you made the decision to go with laser therapy and what results were achieved over the course of the last couple years. Any insights you can provide will be greatly appreciated. I have lots of questions and as every parent i can imagine, would be anxious and scared. I am looking forward to your response. Thank you, in advance.

[alecsmum]

Hi
My little man also has a pws on his right arm and hand. As with the others on this post, it gets spottier as it goes towards the shoulder. He also has it down the right side of his back and some on his leg.
We totally panicked when he was born, nobody here had seen anything like it. But it has been checked out and is not kts. Actually it was through reading posts on this site that I learnt most about the pws.
We elected not to treat, as it is unlikely that treatment will work for long. My son is now 7, plays alot of sport, and is happy with his hand, that also helps him tell left from right.
We get people in winter that tell me he is too cold, and in summer that i should use sunscreen, as i am letting my son get seriously burnt! Can't win!
I don't notice the pws anymore, although i do check sometimes that his arm isn't growing longer than the other (its not).
So, be strong, get it checked out, but know also that it might only be a big pws, and that if so you can live with it just fine.
Good luck..