My youngest DS is nearly 2. Since he's been born, he's had a long list of things that are wrong with him.
Anyway, long story short and a awful hospital stay at 4 weeks old, he was founds to have a congenital rib abnormality which is very rare. He had a couple of minor heart problems and had undergone various tests.
He had a genetics test done to see if there was any chromosomal reason to "his condition" and they found he had a micro deletion of chromosome 7. The geneticist noted down some other characteristics with him having droopy eyes, wide nasal bridge, square eyebrows, larger than normal head, something to do with his ears amongst a few other things.
Anyway, he has bilateral fusion and bifurcation of the ribs and has a hammer toe and also think he has bilateral sprengal shoulder.
If you saw him you probably wouldn't think there was anything wrong with him.
Anyway, because I've been going mad wondering what's wrong with my DS I turned to Google ( which I knew I shouldn't do, but wasn't getting any answers and still haven't) everything my son has had ( poor feeding, heart problems amongst his other ailments) I'm convinced he has something called Gorlin Syndrome. And the only other reason I think he has that, is because for a nearly 2 year old he has an awful lot of growths around his neck, chest, under arms and groin which his pediatrician confirmed we're moles, he is referring him to a dermatologist and said there are too many moles to count. I then mentioned Gorlin Syndrome because of his other problems and I also said to him that's it's probably highly unlikely that he has that because it is so rare but just wanted to put it out there. He replied and said whatever it is my DS has is highly unlikely, because he has very unusual abnormalities. He also said it could be gorlin syndrome but further testing will need to be done. The more I look it up the more I'm convinced he has it. He fits the major criteria and now I'm worried. More moles are coming up on him all the time and he already has a deformed looking chest and I can't help but think that as he gets older and is at school he'll get picked on.
Has anyone elses child got an unusual amount of moles or even been diagnosed with Gorlin Syndrome? I'm going crazy but at the same time, I knew from day one there was something wrong with him and I've had to fight to get people to listen to me and now they finally are.
Maybe I'm just looking for reassurance. It's the waiting that drives me crazy.