my son is 5 months old and was born with port wine stains down his right leg. a day or two after birth we had him scanned and were told that he had an extensive malformation. most of the doctors there had never seen this before and told us we should monitor it carefully but that he'd probably grow out of it. we did a little research on venous malformations but our son didn't seem to have the extreme deformities which some of the other kids had, so i didn't think much of it. 2 days ago i noticed that his right leg is smaller than the left. it looks the same length but it's definitely thinner. on further examination i've noticed that he favors standing on the left leg and that leg seems much stronger. needless to say it feels like my heart has just been ripped out.
we are going to see a specialist on monday to get the diagnosis but i fear, after much research, that these types of conditions are often mis-diagnosed and i'm imagining his life of constant visits to hospitals. can you offer any advice? did your child start walking normally and did he experience any pain other than after the treatments? i also wasn't clear on whether you said that your sons legs were now the same length or were only 0.5cms different?
how is your son progressing as he gets older?
thank you for sharing your story.