My introduction

[HikingStick]

My wife and I have a little boy, 22 months of age, who has been
confirmed as having Sotos Syndrome. I see that this is a relatively
new group, so I thought I would break the ice.

Our son was born as limp as a rad doll and did not cry until about 90
minutes after delivery. He spent his first week in the neonatal ICU.
He was difficult to feed (problems sucking), and had very low muscle
tone. Because of abnormalities in one leg's development, he was
originally diagnosed with atypical Klippel-Trenaunay Syndrome (for
incomplete vascular development and the absence of lymphatic
structures in that same leg). He was obviously large and growing
fast. nearly a full set of teeth came in at or shortly after the
three month mark. Difficulty eating continued. Because of the low
muscle tone, early indicators suggested cerebral palsey, and his
doctor placed him in leg braces. The braces helped him put weight on
his feet, however, and that has helped him to be able to learn to
walk
(relatively early for a Sotos child, from what I've read).

The hardest part for us is how little others comprehend (or care to
comprehend) his condition. They either see a big boy who doesnt'
seem
to "act his age" as it appears to them, or, on the converse, we have
people who brush aside what we tell them about developmental delays
by
citing how most kids catch up by around age two. They don't seem to
realize that he will be "catching up" for another ten or more years.
[In fact, instead of thinking of him as needing to "catch up", I
prefer to think of him simply developing at his own pace.]

Anyway, that's my short intro. We have a large family, and our Sotos
child is just one of many (one younger sibling, the rest are older).
He has already brought much joy into our lives, despite the
challenges.

As you consider posting to this group, you are free to use or not use
your real name. I want it to be a place of candid discussions, but
also want to respect each member's right to privacy.

As this is a publicly searchable group, please use discretion as you
post personal details about your child and/or family. You should not
post your postal or street address, nor should phone numbers be
posted. If you develop strong relationship with other families
through the group and want to exchange such details, I recommend doing
so using your personal eddress or at an arranged personal meeting in a
public place.