Possible SWS? Neuro recommendations needed- Help!
My 12 month old son Dylan was born with a large PWS of the left side of the face. It went around his eye (not much above the eye, pretty much all below and on the sides of the eye), down across his upper lip and up the side of his face/cheek/temple, around his ear and up the side of his head. There was nothing on his forehead and only a tiny dot above the left eyebrow. Because there was nothing on the forehead, we were told right after his birth that a diagnosis of SWS was unlikely. I have attached his newborn photo so you can see the PWS.
We had his PWS laser-treated by Dr. Geronemus in NYC and they did an amazing job. No one would know he ever had a PWS, nevermind a very significant one! The only thing is that when Dylan gets hot or upset, that side of his face becomes "splotchier".
Anyway, Dylan's left eye looks good according to the doctor (no glaucoma yet), but he is being followed by opthamology.
So, here is where my questions begin.....................Dylan has just started early intervention, as he is much less coordinated on the right side of his body than his left, almost like he doesn't know where that right side is in space. When he attempts to crawl, that right leg curls up and gets "stuck" under him. The leg also turns out when he is standing. We have to put him into the standing position, as he is unable to pull into standing on his own. Motor-wise, he is about 5 months behind, and it is always the right side (opposite the PWS) that gives him trouble. The PT tested his strength and muscle tone and said that they were no different on his right side versus his left, but that his issue is really with his coordination being off on the right side. Dylan has never had seizures, but sometimes his movements are a bit "jerky".
I am trying to find a good neurologist in New York who can do all necessary tests to see if Dylan has SWS and if the PWS is not just superficial, but extends into his brain/ has brain involvement. I know that Dylan does not have some of the traditional symptoms of SWS- no seizures (at least, not yet) and a PWS that is not on the forehead. Also mentally/ cognitively he is testing fine, but the therapists said his speech is a bit delayed (he should have more consonant sounds), so we don't know if this is maybe related to his coordination issues? I don't know. Do any of your kids with diagnosed SWS sound like my son?
Anyway, as I said, we are trying to find a good neuro in NY who knows what they are looking for and has experience with kids with vascular malformations of the face. It seems like every neuro we have found on the Sturge-Weber Foundation website and on this site specializes in controlling seizures. I don't know if these doctors would even see Dylan or take him on as a patient since he has not had seizures, but we want a neuro with SWS experience. Any suggestions/ doctor recommendations?
Thanks in advance for your help!