7 MONTHS OLD SON SEEING SPECIALIST ON 2ND MARCH REG METOPIC CRANIOSYNOSTOSIS ANYONE KNOW ABOUT IT?

[shoneshine]

Our ds2 has had a pointed forehead and very prominent ridge down middle since birth but we noticed it at 7 weeks. It was dismissed by the Dr at 8 week check, I got a 2nd Dr to refer him to peadiatrician who thought it was nothing to worry about after doing some shaky xrays but said to revisit him at 6 months. When we did see him again he had been to a talk on craniosynostosis and thought our son DOES have it! I had thought this was what he had after 5 mins of googling months ago so am frustrated that it took 3 medical proffesionals 6 months to diagnose especially as the sooner any treatment (operation) is done, the better recovery etc.
Anyway, we are finally seeing the neurosurgeon and peadiatric surgeons on the 2nd March at Plymouth Frenchayes. What should we expect to happen then and after? had some very helpful mn ladies reply to me months ago but have lost their names! Xx

[feelingbetter]

Bump

[cmotdibbler]

My friends DD had this, and had it corrected at GOSH. They actually like to do the surgery between 15 months and 2 years of age IIRC, so even though she was diagnosed early, they just waited till then.

[shoneshine]

Thanks for the bump! How interesting, the first Ive heard of them pref to do it later. Wonder if thats rare. Will google GOSH, thankyou Xx