Craniosynostosis - 22 month old

[LauraB1986]

Hi all, we recently went to GP as my 22 month old son had a chest infection and the GP commented on the shape of his head and referred him to a paediatrician. We then went to the paediatrician who said that it looks like it ‘could be’ craniosynostosis - scaphocephaly and has now referred us to a craniofacial specialist at GOSH London. Trouble is there’s a 6 month wait for an appointment!! Meanwhile I’m losing it with worry about this being a potentially really dangerous condition.
I’ve researched it and to me it really doesn’t look like scaphocephaly at all. He doesn’t have a bossed forehead and his head is nicely rounded at the back. From the top it looks fairly round. All he has that’s slightly irregular is a bit of a dip across the suture that goes from ear to ear and a slightly raised part at the back (top) of his head. His head is 75th centile and he is 50th for height and weight (same as at birth) so his head has been growing fine. He was born with a very extreme conehead and we were reassured by various Health Visitors, and GPs that it would go down in time and was no issue. It has gradually rounded out over time but it remains slightly raised where the cone was at birth. It’s also fairly easy to see as he has not much hair.
He’s smart for his age (knows numbers to 10 in two languages, recognises and can say the whole alphabet and has begun to make full short sentences). He has had no symptoms such as seizures or headaches (as far as we can tell).
I guess I’m just looking for advice or help. I’m so worried about waiting 6 months and panicking the whole time. I don’t know what to expect and I’m really scared he might need surgery.
We really didn’t think there was a problem until this GP decided to refer us and now we’re worried we’ve ignored it for so long.