Our story & questions
Our 1 yr old son, Nicholas has a port wine stain on the right side of his face. It starts above his lip and extends to his hairline. His pediatrician immediately referred us to the pediatric ophthalmologist for glaucoma testing and to the pediatric dermatologist for laser treatment. We have Kaiser and fortunately everything has been covered without issues.
He sees the ophthalmologist regularly. So far no signs of glaucoma. He has had 3 laser treatments so far using just the LMX numbing cream. His next laser treatment is next week and he will be under general anesthesia for the first time because this time the doctor will laser the area around his eye, an area she has not done yet. She will place a metal contact under his eyelid, a procedure she recommends after the child is one. We are very nervous about the GA!
Our pediatrician admitted he is not very knowledgeable on pws. He got out a text book and should us a pic. The pattern matches our sons exactly. I feel he covered 2 out of the 3 issues, glaucoma and skin. But he does not address the effect it can have on Nic's brain, the seizures or sturge weber syndrome. I see others on this site write about MRI, CT, EEG's or even ultrasounds. We have not been offered these tests. Once our pediatrician said you don't treat for seizures until after one happens. I agree, I do not want to medicate our son if we do not have to, but should we have him tested for sws?
One last concern. The redness of our port wine stain fluctuates. Somedays you can't even see it! Other times it is red and people ask, "did he fall down?" So, we wonder do port wines stains get darker red as one ages or will the way it is now be the way it always is? Will it get darker and always be present? Or is it a light one that will always come and go?
Thank you for this web site!