Irregular growth of limbs

drakes · #1 07-03-2008, 07:28 PM

Hi there,

Our son (5 weeks old) has a PWS on his right hand, arm, shoulder and back.

We have noticed that the arm with the PWS is getting bigger than the other one.

Our pediatrician said that it's something that happens with PWS sometimes and that a plastic surgeon would be in a better position to give advice.

we are scheduled to see a plastic surgeon next week, however, I was wondering, does anybody have any experience with this? How concerned should we be...?

Thanks.

Aaron.
Toronto,ON.

Sue · #2 07-07-2008, 07:16 PM

My daughter has the same think on her shoulder, arm and hand. Her arm and hand are also a little bit bigger than the other one. Her's is not that bad, you only notice it when it's pointed out to you. I have decided not to see a surgeon now anyway, but in the future if it gets a lot bigger then I'll think about it. To me if it's not a huge difference I wouldn't put them thru that surgery. Please keep in touch with me, I haven't found many people who has a PW stain on their arm. If you have any more questions feel free to ask.

alecsmum · #3 11-08-2008, 10:55 PM

Hi
My 4 year old son has a PWS on his right arm, right back, the top of his chest and some spots on his right leg. Agree that this seems to be much rarer than facial PWS. Perhaps easier to live with also.

His arm and hand are bigger than the non-PWS side... but this has caused no physical discomfort or difficulties, he is definately right handed and has full mobility. The first dermo we saw even suggested (jokingly) that he should take up tennis or golf as he would probably have a stronger right arm than others!

I tossed up on getting laser treatment for him for over a year. My first impulse was to go for it, mainly due to the teasing factor and the risks of cobbling later on. But then I read posts here and elsewhere about kids living with PWS - and generally they were positive about it... after all everyone gets teased at school, big bum, big nose, red hair, etc...

We consulted with specialists in two different towns, both said that treatment was neither necessary nor urgent - and that breakthroughs are being made in the technology, so perhaps it would be better to wait. They also said that treatment hurts - and that if my son was not concerned about his birthmark and did not ask for treatment, why put him through the suffering?

Finally we decided not to do anything, but to revisit that decision when he gets older - perhaps when he is 8. If teasing is getting out of hand at that point, or if he ever asks for treatment, then we will do something about it.

He is a happy well adjusted boy - I have witnessed him more than once explaining his "red hand" to other kids, and it causes him no trauma or embarassment, indeed it seems to help him break the ice in making friends! He never complains of pain or tries to hide it. For the moment at least, I think we have made the right decision in holding off on treatment.

Good luck!

nmarsh2k · #4 01-01-2009, 09:28 PM

My daughter has the port wine stain birthmark on her right arm, hand, shoulder and the upper right quadrants of her chest and back. She ahs some overgrowth, a little bit. It has stayed about the same since she was a baby. She is a swimmer and during swim season her biceps get a little bigger but so does her regular arm so its truly not a big deal. She has had only slight pain problems related to carpal tunnel syndrome. She was diagnosed with more than just PWS however, she has Klippel Trenaunay syndrome. This is the pws and some hypertrophy of the limb. I wonder about the people who have posted here about their pws and overgrowth, I would ask your doctor about KT syndrome because it is very rare. Honestly though there is not alot you can do except manage any symptoms. On the arm KT syndrome is NOT a big deal. On the leg it can mean some of your internal organs are affected and can require much more medical treatment.

nmarsh2k · #5 01-01-2009, 09:29 PM

oh I forgot to add that my daughter is now 14 years old. Please feel free to contact me at my email bunnymom2k@yahoo.com

carebearnv · #6 03-12-2009, 07:11 PM

My 1 year old (almost) son has a large PWS on his leg and it goes to his tail bone and 1/2 of his scrotum. Each dr visit his legs are measured, the derm dr. is watching for K-T syndrome. In my sons case it is the non PWS leg that is larger not too much but it is larger. I am not sure if this is related to the PWS or not. Has anyone heard or experianced this?

Thanks,
Michelle