I recently posted that my son had a PWS on his right arm and we weren't sure if he also had KT. I was so very happy to hear the doctor(2 opinions) say that he doesn't appear to have Klippel Trenaunay. We will do a follow-up in 6 months. The doctor said it is called a reticulate port wine stain. How does a reticulate port wine stain differ then a PWS? He suggested not to do laser at this point. Is it true that the earlier you do laser the better the results?
I think the term reticulate is usually used to suggest the pattern of the birthmark....sort of a birthmark blotchy pattern that seems to follow several lines. A reticulate pattern can mimic a vascular condition called CMTC. There are tests that can determine if there is truly CMTC. I believe a simple test that shows one of the possible markers for CMTC is whether it changes color with cold or warmth. But that's best left to the doctors to determine.
I've also heard mention of a vascular mark called a reticulate naevi that is closely related to a PWS...but it is suggested that it actually fades over time. Though I've only recently heard of this....not sure of the reliability of this info. I'd do a google i guess.
As for laser treatment....it's a personal decision. Generally, the younger the skin, the easier it is to see results. Limbs are notoriously stubborn. But if the PWS is not typical, there may be some reasons to not jump into it. If it covers a large portion of the arm, it would most likely require general anesthesia, and that would also be a reason to wait a bit and let him gain some weight, get older, etc. so that he'll be better prepared to have less chance of any side effect from the GA. 6-12 months is a common age. We started at 15 months...but we also didn't have a definite diagnosis until 12 months. Waiting for 6 months in your case may be a good idea....just to make sure everyone is on the same page with any treatment plan or diagnosis.
Most often there is no question that you're dealing with a PWS, but "I'm here to testify!!" ;D ;D, that not everyone's birthmark appears in the typical fashion. Our son most definitely has a PWS....but we could no see it when he was born. His actually progressed in color over time.
That there is no suggestion of KT is awesome!!!
Hope all of this rambling didn't make you nod off...
I agree with Juliemn about going under GA, I personnally think sooner treatment the better but it really depends on the doctor and how agressive they are. No child wants to go thru what I have. If you do early intervtion your son can live a normal life if removed if not completely it will prevent less problems in the future. I can not for say if it would be it really depends on how deep and darkness of the PWS.
Always remember if you do not like the answer you get from the doctor you can always get a third opinion. I have many for my PWS in my life as technology gets better and the V-Beam Pulse Dye Laser is safe for infants and I have used it and I recommend it.
Hope this helps.
This is an old thread so not sure if anyone will respond. My daughter -6 weeks old - also has a "reticulate" port wine stain which is indeed the pattern of the PWS. I am wondering how your son is doing now since it has been a few years! Did you go for the laser in the end? Do reticulate PWS respond better to laser treatment than regular PWS? My daughter has it on her entire leg - so it will be tough to treat no matter what.
All the best,
Hi Katie and welcome!
I don't think Hank reads here very much anymore... however, you might consider asking Dr. Nelson your question via http://birthmark.org/experts.php and do send him a photo as well!
Congratulations on your new baby! Hope you're having fun with her!
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