Laurie HI and welcome to the group.
Thanks for sharing your story - I'm in the UK and I remember seeing
pics I am sure of your Zak, now I have seen the baby pic again, but
that was before we had a child with o'growth and only now that you
have posted have I remembered them.
Apparently there was a program on tv here last week about a baby with
o'growth , but I missed it but from the messages I have got it sounds
as though the child has SGBS as well but dont know.
Hope you have found some support from meeting other in a similar
situation though through your efforts to get to the bottom of the
issues.
Our little boy is 6 and is undiagnosed at the moment, with overgrowth
syndrome, sotos-like. Dont know if they will ever get to the issue
with him, but keep hoping they will find a child who look similar and
has similar medical issues, but until then we wait it out taking one
day at a time. WE have been told it is definitely not SGBS or
Beckwith's so we wait and see.
Kind regards
Miranda