Hello - I'm new to this section but we've just been told that DD2 (2.5) has Sotos syndrome. It hasn't been 'officially' confirmed but everything I've read since does suggest she has it. Does anyone else have DC with Sotos? I would love to hear about other people's experiences.
DD2 is very tall for her age with a large head/hands/feet and she has mild/moderate motor skill delay and speech delay. We just don't really know what to expect for the future. She has had a few episodes in hospital where she developed bronchiolitis and needed to be ventilated but I don't know if that is a direct link to Sotos or just really unlucky. At the moment her health seems fine.
She's an absolute delight though - she has recently started to talk and seems to know lots of words even though she rarely puts them together in sentences. She does manage to use them to good effect though like shouting 'bum' with great gusto (she was taught by DD1 )She's funny, cheeky, sociable, independent and strong-willed, loves her big sister and the other children at her nursery, and is generally a joy to be with.
We have the choice to get her tested formally which we'll probably choose to do, but I wondered how people felt about such 'labels' and whether it is sometimes better to not know. I imagine that having a dx will open the door for better help which she's highly likely to need at school and so on.
Anyway, hello to everyone and I hope there are some other people out there with experience of Sotos. I'd never heard of it until today.