Dystonic CP anybody?

[SouthEastLondonMummy]

Saw a neuro yesterday who says my 7 month old DD2 has dystonic CP, which will affect the "fluidity" of her movements? WTF does it actuallly mean? He also said they can't tell if she will be severe/moderate/mild. Why can't they? You wouldn't know anything was wrong at a cursory glance, People in shops keep coming up to me and saying how beautiful and perfect she is, and I think YOU DON"T KNOW WHAT WE ARE GOING THROUGH.

Sorry for the crazy-person ranting.

Thanks Fio. We went to a male motor skills neuro at Evelina, called something Fairhurst. Referred by the female neurologist we've previously seen at Kings - Tammy something, Hedley?

Thanks Riven, that makes sense. Physios talk about tone, but I've only ever previously understood that word in terms of "ooh I'd like to be more toned"!! So have been pretty much mystified, even when they try and explain.

Re milestones, she's got good head control, can roll, and is nearly sitting. I told them she couldn't sit, and then she did for a few seconds. The fact she doesn't use her left arm is glaringly obvious tho when she's playing, and her left leg kicks less than the other one.

Plus, as you may remember from my previous threads, I am petrified that she's got a teeny head. Luckily they didn't measure it yesterday so I can live on in ignorant bliss...

What does go into extension mean? Sorry, probably being dim.

Don't think she goes into extension. It is hemiplegia, but dystonic hemiplegia he says.... normally would expect it to be spastic hemiplegia... I think.

The first neuro said she should be normal in terms of cognition, but previously the neonatal consultant had expressed concern at her head circumference. We see him again next month. Now I will be checking for a sloping forehead!

When we're just left to get on with it, I can just enjoy her for who she is, but when she's constantly being assessed it's so stressful.

Riven, can I ask, how much physio do you do each day?

Hi Riven, have e-mailed you (I think!).